Loving our Ireland Rose

It's been a year

2010-08-30T08:26:00.006-06:00

Well, I personally still want to be able to see her slideshow when I click on this blog so that's why that is there. ..........It's been awhile. I don't even really know what to say though I've practically written a novel of what I was going to post at some point. Now, today, I'm not ready to share that.

Anywho, I had planned to go to work today and did not schedule the day off but apparently my heart felt different. It has been a year today since Ireland passed away and as much as I don't want to recognize this day, I can not help it. I woke up in tears and just want to be alone. I have no idea what I'll do.   .....on her birthday, August 19th, or I guess what would have been her 1st birthday, Mikey and I took the day off, shopped for a beautiful flowering tree and a small memorial plaque. It was a hard day but we felt good about how we honored her. The tree (a double weeping cherry) has been planted and after a shock to the ground, it seems to be taking root. We have not placed the plaque (and a few stone ladybugs we found) there yet and will eventually take a picture to share.

I have never quite explained how our time went after Ireland died and have mixed feelings on that much sharing. As I said before, I practically have a novel about this entire year and it felt good to get it down but our experiences of loss are individual and so very different.   .........I know that alot of people have no idea how great a loss this is and others know only too well. I catch myself still comparing losses or rather comparing a sort of scale of pain and grief. I wonder if their loss is just as great and do others believe I should be just fine by now. .......I don't know why I do this because I certainly shouldn't have to validate my pain for or to another, though I do (even if only in my own mind).   .....I can say that today, at this very moment, I feel as if the pain of losing her is just as great as it was a year ago. If anything, certain facts make the loss greater because I can also feel anger towards so many things, I feel sad for a loss of innocence in my faith of not only God but of others that I felt knew more than me and I placed all my hope and trust in. I believed without a doubt that she would come home and for that I am beyond grieving. I feel that I lost an incredible trust in hope. ......I did not cry every day that Ireland was alive because I could not see past the joy of her being here and truly, I can't remember thinking for a minute that she wouldn't come home. ........It's weird, the night before the fateful morning that we had to make the worst decision ever is the only time I remember Mikey and I having a conversation about us loving her so much that we would not sit back and watch her suffer if the time came when we'd have to make the decision of live so we can have her or die so you hurt no more. ........I think the conversation lasted only long enough to express our deepest love for her and wanting to give her the best life we could. We both have the same feelings towards our own lives. ........I remember sleeping well that night because we had left the hospital knowing that she was looking so good and her little body was doing all the things the doctors had said she needed to do. I actually woke up around 1am to call her on call nurses (a nightly habit I had developed) to see how she was doing and was told she was sleeping and doing great. I went back to sleep after conveying the continuing good news to Mikey. I believe just about three or four hours passed when the phone rang. Mikey answered it and we hurriedly dressed for the hospital. He had the conversation over the phone about Ireland's lungs bleeding and us having to make a decision. ...........the entire morning is a blur of speedy paperwork, me literally screaming and crying......calm moments of finally being able to hold Ireland....and doctors and nurses coming in and out of the room. ........I have sporatic memories. I recall signing forms. I remember us coming into Ireland's room and doctors and nurses being lined up around the room as they had us go to Ireland's bed...I remember screaming at those doctors and nurses because I thought Ireland was breathing and they were doing nothing....Mikey showed me the nurse that was holding something that made her little chest go up and down, I guess so she'd definitely be alive as we said good bye...I am sorry for that nurse because I wouldn't have wanted to be her at that moment. ...........I don't know why I'm saying/writing all of this because honestly I can hardly read the screen as I type this...maybe it's just I sort of stopped seeing my therapist a long while ago and I always feel better after writing.   ..........anywho, I finally got to hold Ireland. We were in a private room and a nurse brought her to us. She was so incredibly beautiful and entirely peaceful. She was also still alive. I know this because maybe 5 minutes or maybe 10 minutes later a nurse came in checking her heartbeat and she had to do this again a little later. ........This was an ugly little crowded with furniture room made for the sole purpose of NICU parents either needing to sleep or have some time to themselves. ......We had called friends earlier to have them bring Tristan to the hospital. The nurse had told us that it was important for him to see her to say goodbye. .......I can't tell you how long Mikey and I were in that room holding Ireland. I know that Tristan had a tough time and was ready to leave so stayed in the waiting room until Mikey and I could finally walk away. Our best friends, Terry and Jeannie, got to see Ireland. I wish my family could have seen her. She was so beautiful. ............anyway, beyond my anger of having to make a DNR (do not resuscitate) decision half way through an already horrible morning where horrible decisions had already been made (apparently someone forgot to have us sign the DNR at the time of signing all the other papers)....and I mention this only because really, how horrible that I look back on these times and still can not believe that in the midst of our grief and time waiting to have our daughter brought to us we were asked to give a witnessed DNR out loud to the doctors.........argh!, it still makes me sick...like we had to make the worst decision twice!.............anyway, once the drama was gone and it was just us and Ireland......well, it was sad and horrible and incredibly beautiful.......we knew she was there with us and we'd like to believe she knew we were finally able to hold her...scratch that, she knew we were there. .......I've always been scared of death....religion and heaven aside, I like life and don't want to leave it behind. ........I don't like that Ireland is not here with me .......I just know that morning became peaceful as we were holding her. ......the tears never really stopped, we whispered we loved her over and over again.......we felt her skin, touched her and held her and kissed her....told her she was so beautiful and strong.......and she just looked peaceful. .......there were finally no tubes tying her down and her mama and daddy could hold her
..........I've had people ask me what to say to others in a similars situation. Honestly, I haven't a clue. You be there for them and love them and listen. A minimum of words on your part is probably best...just be there in your best capacity whether it is at a distance with cards or flowers or well wishes or you are there and hug them, hold their hand, make them something to eat or just let them know you are there. I know that I just wanted to be left alone but I am also aware that I had a gazillion people there for me and available if I wanted to talk or needed someone. I remember that we didn't have to worry about how to pay for nourishment because people either brought us food or had given us money to go ahead and call for pizza. All of our basic needs were somehow provided for and one friend even brought us a case of water. Who knew? That was smart and something I'll try to remember.   ..........we had Ireland cremated because we didn't want to have her here in Utah when we weren't certain if our life would have us here forever. We had a small ceremony or memorial for her at the local mortuary and am still amazed at the outpouring of those that came to see us and honor her little life....We also had a ceremony back home for her. Our family flew us out to PA because we so desperately really needed our families.........All of this was beautiful and amazing. We had an incredible amount of flowers to where we actually sent some to the hospital and the rest to a local nursing home. The flowers at the service back home were left for the church. .....The church service was beautiful and what I remember most was Mikey speaking publicly about his love for his angel, his baby. It was beautiful and I will never forget it. He was the perfect father in that very moment and I know Ireland was proud. .........A few weeks later, my parents and favorite aunt came out to stay at Park City. They had originally booked this place to visit Ireland (because we knew she'd have a long stay in the hospital) and well, I'm just so glad they came. It was a great time of rest and insight. I got to speak freely about so many things that I didn't really feel comfortable talking about with others and I didn't feel that I had to hold back in fear of making someone uncomfortable when I wanted to talk about Ireland. I also listened to their feelings and insights on anything and everything. It is a week in my life that I'll cherish always.    ........at this point, "things" were supposed to start getting back to "normal". ..........Mikey went back to work and Tristan to school. ........my life felt stalled because I was supposed to be the one that nursed Ireland back to health and bring her home and just be her mom......the plan was for me to not work until Ireland was on a path that she'd be able to .............well, I don't know.......I suppose that I would have just stayed home until she was ready for school and possibly longer if that is the care she would have needed.    ............at this point, I guess I'll note that my doctor at the University of Utah had prescribed some zoloft for me about a few days after Ireland had passed away. I took these for maybe a week because I thought it was perfectly normal for me to be depressed and seriously, I didn't need anything else putting me in some zombie state. So, I self UN-medicated. To date, I don't know if this was good or bad but it's what I did. ............anywho, life was supposed to go back to normal. I think its safe to say that all of us were in a pretty sad and depressed state for a month or two. Tristan seemed to handle this all very well. Mikey was the rock that just took care of EVERYTHING. I think Mikey just worked so he didn't have to think of things and he felt his job was to take care of me. ......ME? I was a nut that didn't know where I belonged or what to do anymore. I was supposed to be taking care of Ireland. I was happily not working my crazy inspecting job and being yelled at or expected to make major decisions. I didn't want to go back to that job either.........what I wanted was for Ireland to be home and well, that obviously wasn't going to happen and I sure as hell didn't know how to handle that. Lo and behold, I found out I was pregnant. I want to say it was just a little before Thanksgiving and we had a shock of a lifetime because after waiting so long to have Ireland and then just to be pregnant was a shock. There was no intervention of doctors and pills, I was simply pregnant. Well, we figured it was divine intervention and that I'd just take care of myself and try to make a new normal. ..........Now, I was not thrilled and excited with this pregnancy though I wasn't disappointed either. I truly didn't know how to feel because I was still depressed about Ireland not being in my life. ........about the time that I was starting to feel some excitement about starting another chapter in our lives with another baby, I had the miscarriage. Now, I don't recall being overly depressed about the miscarriage as much as it sort of brought about my feelings of loss with Ireland to an extreme all over again. .........not too long after this, sometime in February, I finally made an appointment with a shrink (my counselor, Barb). I should have done this a long time earlier but I really thought I could handle myself. Now, I think I only saw Barb a total of six times and probably should have seen her more but she changed my outlook. I am still having hard times and am not what I'd call 100% but I also don't cry daily or see my life as completely bleak. ..........we figured that I had a case of PTSD (post traumatic stress disorder) because instead of getting better, I was getting worse and let's face it, there was a lot of traumatic things I was seeing on pretty much a daily basis and yet I was trying to ignore the facts or trauma for the hope I had of her just coming home.........anywho, this has all led me to a life where I worry too much and fear too much. .......go figure, I stopped seeing Barb about the time she said that we really needed to tackle this little subject of worry and fear. .......sometimes, I think I should call her because I do know that it is a problem but at the same time, I do not believe it's as debilitating as my depression was. ............just to give you an idea of what I mean about worry and fear....well, I am 17 weeks pregnant today (yay!) and I just want to get to the 20th week ultrasound because I want to see that this baby is okay....I want to know that everything is where it should be and that I can start to truly get excited about this pregnancy. .......I get scared when Mikey and Tristan go 4wheeling because I see things (horrible things) and want to know that they'll come home safe. ........I have too many scenarios that I could give as an example on fear and worry so just trust me here. I truly think that this is somewhat ok though. Seriously, my thoughts are that losing Ireland would of course change me and I happened to have believed so much that she'd be here with me today that I lost sight of things that could go wrong...things that did go wrong...........and today, I just know only too well that things go wrong everyday and that we truly do not have the power to lead every single detail of our life...I'm not saying this is an excuse to stop trying to make things happen, it's just I know how unpredictable life can be on the most serious levels. I stand by an earlier conviction I noted on this blog where my tolerance of bull sh*@ is at an all time low. Seriously, people "creating" problems or stupid scenarios for attention...well, how pathetic.     ..................anywho, I do happen to feel better a bit now that I've been writing on here. There are some random facts I'm going to throw out just for the curious.
.......First and foremost, I miss Ireland. I miss having her for my daughter and I miss the life that I wish we could have all had together. I miss her cute face and I wish I could hold her again. I hate having missed out on seeing the father that Mikey would have been to her and the brother Tristan would have been. I miss the dream of staying home and happily taking care of her needs. I would love to have known the woman she'd have become.......I just wish she could have stayed in my life and the she could have witnessed my life and death, not the other way around. ......She just can never be replaced and I will always have a void though I am working on building that beautiful garden of memories there.
......Second, I still think of all the mothers that I met through this blog that are either raising their CDH babies or still dealing with the loss of their own. I bonded a bit closer to a few that traveled the same path I've been on and they'll forever have a place in my heart. I've also met several families and friends that accounted their personal stories of loss, and they all helped.
......Third, I would suggest that if you know someone that's going through a rough medical time or facing death of a loved one or even themselves...just be there for them, advice is over-rated. And absolutely do not say that medicine and science have come a long way. Yes, it's a fact that it has but in the end, we all die regardless of the incredible advancements in this world. ..........when they're ready to talk and listen, you will know because they will start a conversation...otherwise, lean on the side of just being there.
......Four, absolutely be there in some capacity. I wanted to be left alone but I also liked that I lived in an age where I could text my brother or get on facebook and receive messages that people cared. I loved each and every card I was given. .......I did not always respond and didn't honestly have it in me to even say thank you but I knew everyone was there and it helped me.
........Five, know that we all respond to loss differently. I didn't want to be around young children and babies for a looooooooong time. I'm honestly just getting comfortable with this. Little girls were especially tough. Don't take these things personally. It may sound selfish to you but think about if you were in my shoes, maybe you'll understand better. If anything, know that the sound of your little one's laughter is beautiful and for a long time was just a reminder of the voice I never got to hear.
........well, that is all I've really got. I guess I should also say that I also feel that other people have losses that aren't as easily recognized as death and I feel their pain is just as validated as mine has been and still is. This world is not easy and I think Ireland taught me to really recognize how valuable life is. I will never be ashamed that I was full of hope and joy for her life while she was here. I'm glad that I enjoyed her while I could. I wish that I wasn't so affected by having lost her but this is how it is and I think that I really am going to be ok. We are pregnant again and we are ready to have another baby. I worry, it's who I am. I am working and don't see that changing in the near future. Things will be different as of course they should be. Tristan is going to a nice charter school and is looking forward to getting his driver's learning permit this winter. Mikey is working and excited about this next baby. ....I am steadily growing HUGE and doing my best to be better than the standard of "just getting by". It's been a tough year, I wouldn't wish this on anyone, and I am grateful for the life and experiences I've had thus far. I'm grateful for those I've been blessed to have and love in my life. I will be ok, we all will be, .....We all just miss her.

Ireland's slideshow

2010-01-11T09:03:00.003-07:00

After finally figuring out how to do slideshows, I finally have posted a little over 100 pics. The pictures are awesome and beyond loved by us but they far from do her beauty justice.
When viewing these please remember that in 11 days, Ireland changed quite a bit. At birth, she immediately had to be intubated because of the CDH (congenital diaphragmatic hernia). Not too soon after that she had to placed on ECMO and that causes quite a bit of swelling...we chose to exclude the first day or two of her on this but you can definitely see her weight changing day by day. As she neared having the surgery to correct the hole in her diaphragm, she thinned out quite a bit which was great. And then, once surgery was completed, she began putting "liquid" weight on again, which was expected. I've come to like that she changed back and forth because well, it's who she was and it was the changes she had over her little lifetime. I thought she was beautiful each and every day. I certainly don't fear death so much when I know I'll be with her again!
I'd like to add that the pics that are black and white and the lighter toned still pictures are from the organization .."now I lay me down to rest". If you are ever, God forbid, in this situation...choose to have them take the pictures. We almost didn't do it and now, I am glad that we did. .....Also, quite a bit of the pictures are taking with our phones so the quality isn't there but once again, we cherish each picture.

My New Year's letter

2009-12-29T08:31:00.000-07:00

In lieu of the Christmas letter, I bring you my very own, New Year's letter. ...first off, I may be one of the only people willing to admit that deep down...silence please...softly whisper from me....I like Christmas letters. I can't remember ever sending one out but I liked to receive them. I love you all enough to really be okay with hearing how well your year was, the little hardships and how you got through them, the little musings of what reminded you of how much you love your children, your spouse, your life. Yes, in the truth of the comedy parodys that go on and on about "your wonderful life and the Christmas letter and our distaste for your perfectness", well, of course, there are moments that I say to myself "how great for you" and roll my eyes...but come on, deep down, I love you and am happy that you are living your life so well. I know you aren't perfect...I've seen things, heard things, KNOW things!!! .............in this spirit, here is my letter for the hoping many blessings come your way and mine in the year 2010.

I have to start by telling you of a recent conversation I had with a friend that I have reconnected with. She was asking how I was doing and out of nowhere I said, through tears, "I feel completely and utterly incapable of bull-sh--! and just want to ...." Well, basically, I wanted to lose all forms of communication. Mind you, this was just one day. After the year we've had, well, I have to say it's truly been the best and worst of times. ....I feel okay starting my New Year's letter with this statement because I still have to say that I still feel a very strong sense of truth in my life right now. ...I'm going to do my best to explain because it's a lesson that I've always believed I knew but really, I didn't know "dittily-squat"!!!

Obviously, I'd imagine that if you are simply reading this, that you don't need a detail of our year so I'll keep certain facts short. A quick look back at http://www.lovingourirelandrose.blogspot.com/, can give you the details if you need them. .........first and foremost, right before last Christmas...actually the Friday before Christmas, I found out, after yeeeeeears of infertility, that I was pregant. This was a blessing and we'll forever tout the greatness of the drug "Femara" for any and all we meet that know the sufferings of infertility.

I will, without any doubt, say that my pregnancy and the birth of our Ireland Rose was our greatest gift of 2009. We had dreamed of having a baby....Tristan, Mikey and I. Tristan has always wanted a brother or sister....he used to ask Santa for one. Mikey and I....well we love each other and for us, we love our family life and only see good from expanding that. ..........and oh my gosh!!!!, I hate admitting it "out loud" but I soooooooo wanted a girl!!! The testosterone levels in our house exceed maximum limits at times and I just really wanted a baby girl. .........How awesome was that day the ultrasound technician said "it's a girl". I cried and cried and we'd already picked her name and everything! Ireland Rose Brady. .......I seriously don't know how we can ever top that name. .......Well, within 5 minutes of "it's a girl", we heard "CDH" and it goes without really saying, that our lives have forever been altered by those three little letters. Congenital Diaphragmatic Hernia. A condition of a diaphragm not fully formed and thus an opening for organs to crowd the precious lungs. .......I choose not to go into detail further about the condition but will say that the CHERUBS organization will forever be dear to us and I'd simply ask that when you think of Ireland, possibly visit her blog...visut the link to CHERUBS and give what you can, even if it's just a kind word to someone. (the UofU Hospital and Primary Children's should be added to that list of places dear to us!)

Well, somehow we were either made right or raised right, we kept positive attitudes. We were ready to fight, learn and deal with everything head on. Our excitement did not dim, there was simply a shadow present. We became learned on as much as we could about CDH and formed quite a bond with the University of Utah and eventually, Primary Children's Hospital.

Ireland Rose arrived with alot of expected and unexpected drama. I carried this precious baby full term. We said we wouldn't place expectations on her, but of course, we truly believed she would show everyone how tough she was. And she did. At 7lbs 12 ozs, she was pink and adorable and 100% beautiful girl. ...Beyond everything, we had our Ireland Rose. She is, was, and always will be perfect. Her beauty, her spirit, her very precense in our lives will always be a cherished gift. 11 days. We'd do it again and again and again.....

...now dry your eyes because Ireland's life was full of purpose. (she was much more than just being this perfect ball of cuteness!!!) She taught me (and many others) some important lessons.

First ....I have a rock solid family in my house. Many see my hubby, Mikey as fun and that's about it. You have good memories from high shool or military or working together....that's great. He is fun. He is quick witted and can either cut you out of nowhere or cause a complete burst of laughter....pretty awesome trait. I bet none of you had any idea on how sweet he was, or how much he'd do just about anything for our little family (or anyone, for that matter), or how well he provides for us in every way. I married a great man. He's not just funny or silly. He has a side that few are priviledged enough to see or know. I know many secrets and he knows mine, and I'm here to tell you that the acceptance and love you give and receive from a relationship like ours, is the stuff anything great is and can be made of. .........and, Tristan. I think alot of folks underestimate my son. He's not always had an easy life and yet, he is kind and loving and a truly good person. As a teen, he can inevitably be selfish and yet, at a moment's notice, if I NEED him, he'll be there. If you need him, no need to ask twice. Did you wrong him in some way? No worry, he forgives so much better and easier than me. I love Tristan so much and make sure that he knows it without a doubt. Ya know, he makes sure I know that he loves me.

Secondly, I learned and am still learning about grieving. D (denial), A (anger), B (bargain), D (depression), A (acceptance). You get a ton of pamphlets and good people letting you know that these are the steps of grieving, that it can take 2 or more years, that the steps can move forward and backwards...to go with it and seek help from a friend, a professional, a pastor, a pill when you need to. You get alot of advice...you get alot of avoidance...you get people thinking that you understand another person's loss ....Want to know the truth of grieving? It is a very personal journey. My experience is probably completely different from the next persons. My days, my moments vary greatly. I've thought I was perfectly normal in grieving and then broke down in a doctor's office wondering if I was crazy. ....My new year will begin with 4 months without my baby girl. It is an undescribable pain because she is not here with me. At this moment in time, my afterlife is not my desire. My desire is to hold my baby. My desire is to watch her grow into a beautiful and happy life of her own making. This desire, this dream of mine for her is gone and because of that I grieve. I don't know how long this will last. I have good days and know I have much to be thankful for. I talk about this when I am comfortable and sometimes, I've even talked when it's not comfortable. Sometimes, I turn my phone off. ..........bottom line, grieving sucks. There are no perfect words and usually comfort is found in just knowing that someone cares enough about you to say "I'm thinking of you" or even better, "I think of Ireland".

Third, I truly believe that my "inner Ghandi" has surfaced a bit and through darkness, I've discovered some light about the world we inhabit. ....Through Ireland's life, I found deeper meaning in relationships. I met tons of people walking a line so similar to my life that it was almost uncanny and surreal. I learned that the core of 99.99999999...% of people in this world are good and that that 1 gazillionth person that is a shmuck, well his significance only matters if you allow him to matter. (And yes, I encountered the schmuck and am amazed how I let him matter in the face of the constant stream of goodness and prayer that was being sent my way.) .........back to the surreal lives that mirrored my own. ...Truly, the blogging world opened doors to us. We gained a wealth of information but more than anything, we learned that we were not alone. Others were walking the line right with us (either personally or simply standing beside us). That world of strangers and long lost friends kept us going throughout our pregnancy, Ireland's lifetime, and many continue to keep in touch. You can love someone you've never met.

Fourth and last, the statement about me being incapable of bull. I find this significant. It's always important to live by truth but I find myself almost radical about the concept of personal truths. I know to tread lightly because as in politics and religion, I don't believe radical anything is healthy. ..........anyway, I have facts about my life that are significant but at the same time they are simply the truth of my being, who I am, where I've been, where I'm going. I'm adopted. Two people couldn't have another child on their own and for their own reasons, I was adopted. Two people had me and couldn't care for me so placed me for adoption. This is significant but it's also just another fact of who I am. We can make lists almost chronologically and you'd think you know me. ....funny thing though. You would not know a dang thing about me, or who I was or where I was going. ....this is where my incapablilty of bull or better yet, my radical thinking of personal truths comes into play. ....I find myself extremely opinionated and fortunately enough, I find wisdom through silence (and at times silence may just possibly keep me from looking ignorant, i'm sure!). I have opinions on everything from your expression, your sayings, the healthcare plan (which if you've seen the size of these plans, who really knows all of what is in that?!), our government, other govenments, my spiritual beliefs, my upbringing, your pretty garden and home, your opinions on things you've not even lived through, your self-rightous behavior, my self-rightous opinions and behavior..........on and on, I can go. I guess we all do this. It is human nature and probably psychologically or biologically essentail to our being. Who knows? I don't. ....anyway, my questioning everything is just one more truth about myself. Did you know I was pregnant again? After years of infertility, having Ireland, losing Ireland, deciding that maybe just making some money and buying that cool camper would be fun (while secretly just hoping to have another baby or atleast have Tristan give me lots of grandbabies down the road).....well, isn't that just nuts?! ........here we go again. I am 36. I have a great husband. I have a wonderful son. I had a beautiful daughter and she died. I am pregnant again and it's a miracle and scary and exciting..and scary. I live in Utah with a family in Virginia and Pennsylvania and Ohio and Arizona and many friends everywhere. I am essentially happy. I am sad too. I have a life I love and I feel a new life is coming my way. I don't think 2010 is going to be easy. I can not go back to my old job. Will I get a new job? Will we be broke before we are prosperous again?

I am hopeful for this New Year. 2009 was not easy and I doubt 2010 will be easy either. I do however feel armed for just about anything...by the way, no pun intended there. Tristan's recently fractured arm looks like it will heal on it's own and not need surgery. See? Blessing, ca-ching. Baby on the way? Blessing, ca-ching! ....Do you remotely understand my constant rambling about personal truths? I guess, I finally understand that life is faaaaaaar from easy, funny because my life has NEVER been easy....but seriously, we have endured what could possibly be the worst thing to happen in our lives and we live on. We smile. We work. We cry. We accept. We grieve. We talk to others and we also turn off the email, the phone, the facebook, the blog. We do what we have to and do our best to come out shining. ............I am hoping that all of my friends and family have a wonderful 2010 and that in the face of any hardships, you step back and count your blessings.

Happy New Year!

Chanda and the rest of our little Brady "bunch

This blog is a memorial

2009-12-07T07:28:00.000-07:00

well.......Ireland's blog is going to be a memorial for Ireland. I plan on adding a slideshow soon. I began a blog http://www.myverybradylife.blogspot.com/ . .........I was beginning to blog random thoughts here and really don't want that. ......I pray for you all constantly. I love my CDH family and simply need a new start. Come by and visit the new blog if you'd like.

Babies and blogging

2009-12-03T07:40:00.000-07:00

I haven't blogged like I used to and think part of that is due to me maybe needing a new medium to blog on. I've got this blog and http://www.mybabysbling.blogspot.com./ Two blogs and now, talking of a third?! Crazy, I know. Really, this blog was for Ireland and I'd really like it to stay that way. The baby bling is to honor Ireland through helping others and that is more of a here's some more bling and eventually (hopefully) a "look at this cute baby needing this bling". ..............anywho, I wanted to convey thanks and send love and prayers out to all of those that do the same for me and my family. I also want to express that I am so grateful for this unexpected pregnancy. My emotions have just been all over the place. ...honestly, some of this could be due to my low progesterone. Not a doc but maybe. All of last week, I had to go in for blood tests to monitor low progesterone (apparently a good indication of miscarriage). My numbers went up about 3 points and then actually went down between Thanksgiving and Monday from a 7.6 to a 7.4. ....my normal OB doctor had just returned from a cruise and let me know to stop taking the progesterone (the yucky vaginal suppository kind). I had been taking these at night and laying down a few hours a day. ...He said that it was apparently useless due to the numbers normally double and my numbers were obviously going nowhere. At the same time, he did say that my HCg (preggo number) went from a 6000 to over 30,000 and because of this meaning I was "very" pregnant....not to worry. Worry would cause more harm than good and I'm dealing with enough. ....So, I do my best to do as he says...I'm taking it easy and not worrying.
.........I have been thinking on some stuff though. I've had it sort of rough dealing with the loss of Ireland and honestly, I think (beyond the normal grieving) it's because I have entirely too much time on my hands. Last week, I literally had to lay down and NOT get up for around 3 or so hours a day....totally not the glamorous "lady-of-leisure" lifestyle! Thanksgiving was a cinch....we were at a friends' house so my contributions were minor. ..........I can still cry that uncontrollable, painful cry of losing her. I hold it back for the most part but last night, I was wondering if that was even healthy for this new baby because when you hold it back, you feel it in your stomach. ...this is hard to explain, and I'm thinking that only those that unfortunately have been walking this path themselves know what I'm talking about. ....It's been just over three months now(the 30th of Nov. marked our 3rd month) and there are moments when you look at an album of pictures, the urn or the beautiful blanket you held her in....and ya just think to yourself, this is it. This is all I have left. I want my baby and instead I have a room that I avoid and a few very precious keepsakes and I'm supposed to move on.....I am here to tell you that it is the hardest thing in the world. I can not imagine anything worse. I know that there is worse but I truly hope that I never have to endure anything like this again. ........I have decided that in my newfound "wisdom-of loss" that I would not want to live to be 100 years old unless life has seriously changed by then. As americans, we truly do not value our elderly as we should and I'd imagine that they are lonely. I think of having lost my precious Ireland and the pain it brings me. Can you imagine the old guy in the nursing home that has outlived several children, maybe his wife is gone, his siblings....these are my thoughts. I couldn't bear that pain ...or rather I would not want to bear a pain like that. It has sort of thrown a bigger respect in me for those that work in nursing homes and for the elderly folks I see in my day to day living. ....I used to be that person that gets irritated when you're behind that white haired driver..and ocassionally, my sef-rightousness would come out and say well, I only hope to be that old one day. ...well, yes and no. ....If my children are healthy, Mikey is well and ....by now, you get the drift. ....so today, I'm sending out prayers to all of those lonely in the world because I understand atleast to the point of losing one. ..........anywho, to continue on with my random thoughts...I hope that when this baby is older and looks up his/her mom's old blogs and reads this stuff that they know that I was not comparing him/her to Ireland. I was loving him/her and also dealing with a major loss. ...........Ireland will always be perfect to us. We never heard a voice but we saw that she had one with every single time she would look up and her eyes would widen just to hear our voices or that her toes would curl and her arms would stretch because she so wanted us to pick her up. She was so present. A touch from us would bring a calm to her face, and a change in her monitors. We affected her and vice versa. She was beautiful. She never said a cross word or did a bad thing. Her life was short and the most innocent. She could only be perfect and thus will always be remembered that way. ......No matter how hard we try, none of can achieve a perfect life like that. We are not and those we love can never be like that either. ....When those of us that have lost an innocent baby, we truly are the few that have been allowed to know and hold an angel in our arms. .........I really do believe this and I do not profess to knowing what heaven is like but I know that is peace and love and innocence and well, that describes our perfect babies. .........anywho, my point is, Tristan and this new baby are loved in such a seperate way. They are different and wonderfully so. I can't even begin to describe my love for Tristan. He can be that typical teen at times and yet, he is my son and I'd hand him the moon if I could. As for this new baby forming...I am just realizing that you are even there. It is just beginning to click that there is a life inside me. On Thanksgiving afternoon, the doctor monitoring my bloodwork called and asked if I were cramping or bleeding......wow, absolutely horrible etiquette on her part...and yet, I woke up and just wanted to go home, throw in the progesterone and will the number to go up so that this baby would be safe and fine. ...........for those wondering, I haven't had abnormal cramping and not a drop of blood. I do as my regular doc says and don't worry. I can do nothing about it anyway, I tried. .............anywho, to recap; I miss Ireland. I love Tristan. I love this new one coming along. ....I have special prayers going out to a few that have also suffered the loss of their babies this past year. I think about a few in particular because their lives have seemed to parallel with mine and I want them pregnant with me. ...Also, there are alot of opinions out there about age and pregnancy. Even doctors are nice enough to say that I'm not too old. ...I am perfectly aware of my age (36) and at times hope this baby doesn't think I'm a grandma and then look at my son, laugh and realize they'll wish to turn me into someone else anyway at times. ....point is, my fact is that I'm pregnant now. I'll be almost 37 when this baby is born. I don't feel old but do feel, all of a sudden, that I should eat a bit better and care for Mikey better. It is highly likely that when this baby is Tristan's age (14), I could become a grandma. ....woh....need to breathe....in a good way but still......anywho, there are just others on my mind and I wish they were on this journey with me. I would like to push the drug "femara" on them if they need to try something different than "clomid". (I happened to just get preggo this time but after years of infertility "femara" is what gave us Ireland....and no, it did not cause the CDH). My doc said that when "clomid" isn't working, usually "femara" will. .....as Forrest would say, "that's all I'm going to say about that." .............well, "babydust" to those that need it, "sanity" to those that could use that (me, perhaps?), love to the elderly and really to all that have suffered any loss....maybe a small prayer that a recipient to babybling will send us a picture of their precious baby (selfish but would really love to post something...will stay legal though)............anywho, also love must be sent to CHERUBS and to all those dealing with CDH in it's too many forms (pregnancy, NICU time, growing up with it and taking care of those that have it.....and for those dealing with the loss from it)..........later

small p.s. ....i can't find my spell check on here all of a sudden so forgive any screw ups, please

a Gift?

2009-11-22T06:45:00.001-07:00

Hey baby girl. I miss you to the moon and back a gazillion times. It hasn't been quite 3 months and well, there are moments that it seems like you just left this world. ....I don't know what I thought, but I did think not having you in my arms wouldn't feel as intense today as it did. Wow, your mommy is loopy because it does. It hurts and I dream of you constantly. ..........We sort of ignored Halloween this year. It was too much. How could we look at all the cuties and not see you in them. ....not to worry, Tristan was not neglected and at 14 had a blast getting dressed up with a friend and handing out candy at his house. .....I haven't really been looking forward to these next few holidays. These are times of family and we seem so incomplete without you. ....Heck, I've tried to fill the void of you not being here through shopping, crafting, ignoring CDH communities and even making some bling for other babies. Even though one or two of these little "habits" may be good, a few are not so healthy. I think that I have moments of intense sadness because I don't truly face that you are not here. Sounds crazy but really, if I stay too busy to think, then ......well, I can't stay busy all of the time. ......I do want you to know that I have good times too. Not tons but I have laughed and smiled and been really happy for others.............I miss you...........I love you. ..........Your daddy and I have been talking alot about another baby. It's such a bittersweet conversation. You can not be replaced. .......you can not be replaced, I'm 36 (old in ovary years) and well, I want a baby and part of me can't get past just wanting you. .......We had a memorial service for you the day after our 5th wedding anniversary. .....It took us 5 years to finally have you ...and only 11 days to have lost you.....We went through tests to see if something was wrong with me, if something was wrong with your sweet Daddy and all the doctors said we were fine. We went through several drugs, invasive testing, iui's, and months and months of taking temperatures and checking ovulation dates, we got sick of each other and then we'd be convinced that to forget about it would bring us our dreamed baby. Well, finally we take a drug that works for us and you become our world. ...........Tristan was excited, your Daddy was hooked , I was so excited about life in general...and honestly, all that knew about you felt the same. ...........You were our long awaited gift. You still are. ......and I grieve. I hurt. and I function somehow, smile somehow, feel that I am mental at times, and feel that life is going on at other times. ...........We went to the doctor about 3 weeks ago. We thought it was time to see when we could start trying for another baby and if we could use the same medicine that gave us you. We were cleared to try and I was given the progesterone to start having normal cycles again. ....I'd already had one cycle and your guess would be as good as mine when the next one would come without progesterone. .....Well, the doctor wanted me on a 28 day cycle so I started the progesterone 2 weeks ago. ........no period. ......I took a test yesterday. I never even took the fertility drugs and I am pregnant. .....I ask you how?..............How is it that after years of trying ....I finally have you.....somehow continue to live without you here....and then out of nowhere get pregnant like that? .........I cried. I smiled a bit because there is a life in me. ...........and then I cried some more. I told Mikey, your dad, that I wondered if your spirit just couldn't take the body you were given and that you were just coming back with a new one. ..........He didn't laugh at me but did say that he didn't realize that I was a Buddhist. ............well, I'm just not feeling very sane. I was happy one minute (even though the tears won't stop) and then I would just feel numb. .......I have a life in me....Again. ..........I wanted this and don't know how to feel. .........it's too soon and yet, I'm not young and I want this and I want you and I just wish God would send me a personal letter....not a Bible....I need a letter specifically detailed with some answers please. .........I could not sleep very well. I didn't want to take the ambien until I researched if it wouldn't hurt this baby. .........I dreamed of you and just missed you so much last night. ......oh, and I felt guilty. ......I have been on an emotional roller coaster for too long now and it doesn't seem to be getting much better. Well, after a hockey game last night, the truck was cold so I turned the heat on as soon as your dad started her up. ...lo and behold, he turns it off. ....this wouldn't do, so I turned it back on and a little higher with "a bit of a speech". ........Mikey gives me a speech back as he turns the heat off again saying to "wait 5 minutes". ..........I went ballistic. Tristan is in the back having had a very good evening and I am going off about being cold and leaving the heat on. ........I have now gotten so worked up that Mikey has given up, Tristan is trying to excuse us both and I'm just in a flat out "mood" and silence has ensued. 5 minutes pass, we stop for burgers, Mikey tries to apologize and I proceed to present my case of why turning the heat on immediately will warm the truck faster, Mikey proceeds to give his case and now, I'm just ticked and done for the night. He tries to apologize, Tristan sticks up for him and for me again...I'm now just mean and selfish and want silence. Tristan falls asleep driving home, I keep my silent vigilance, and I'm sure Mikey is dumbfounded. .........We get home, I tell Tristan good night. I, at least, apologize to Tristan. I go to bed and fall asleep without a word to Mikey. I'm up at 3am. At 4, I wake up Mikey jsut long enough to apologize. He's nicer than me and says he loves me and it's okay. ........I know that it was not okay and say so. ..........He has to go to work in the morning so I shut my mouth so he can go back to sleep. ............I continue to just lay there, feel tired, and think. ..........Thinking is not my friend because I feel that I am a mental case. Seriously. .........and then, I think "who the hell wouldn't be a mental case right now?". .................Ireland. I miss you. You were my most special gift and now I seem to have another and am not sure how to handle it. .........for now, I'll wake up tomorrow and make an appointment with my doctor. We've told Tristan and he just hopes that this baby doesn't have what you did. We reassure him that all should be fine. .......God, I hope so. .............Family has been called and well, I had several differing reactions. ................I need to let friends know and well, I don't want to cry anymore. ......so, I cope with writing to you. I still cry because I see your picture, your face and just want you and think I'll never understand. I still know how soft and wonderful you felt. ...........I miss you and want you. I am so glad that you are not suffering but you have a selfish mother that really wishes you were here. I love you. ........I don't know how to feel right now but know that I'll love this baby as much as I love you and as much as I love Tristan.

My effort to honor Ireland

2009-10-13T06:18:00.000-06:00

Could I miss her more? I don't think so. There isn't a day that goes by that I don't think of Ireland. Some days I can smile and other days, not so much. ......Life is somehow going on. It seemed impossible but it does. ..........I still have times that are rough and this past week was one of those times. I had reconnected with a friend that I just love so dearly and of course, I had to let her know all that been going on in my life. ....funny, I really felt the need to comfort her and her family whom I'd also lost contact with. This was so hard on her for not being there and I really understand. ......Well, in an effort to honor my precious Ireland, I am starting a blog or sort of mission. I doubt this will be a blog where I post daily thoughts, it is simply a project. I plan on eventually starting yet another blog to post my daily musings (so to speak)...how fancy, huh?...musings. ....Anyway, I've started a blog at http://www.mybabysbling.blogspot.com/. I plan on making little eye masks for NICU babies. It seems that this was a new idea and I'm truly proud that I came up with this on my own. I plan on making some for Primary Children's here in Salt Lake City but hope that this site will possibly grow into something more. I'd love to see others make the masks as well and either send them to me or to their own local hospitals. It is such a simple thing. ....My aunt "Paby" gave me a shawl given by a group from her church when Ireland passed away. It meant much more to me than I initially believed. ...At the time, I simply thought it was a nice gift. In the days that passed, it was a sort of life saver. ...Basically, those that make these shawls pray as they're knitting to give the receiver of the shawl peace, comfort, the love and understanding they need once they receive it. Well, I can not profess to being this ultra religious and sentimental guru....BUT, this shawl was truly comforting. I had folded it over my headboard and when I couldn't sleep or the pain seemed unbearable, I'd feel this shawl or simply the fringe and it gave me some comfort knowing that I was loved, that Ireland was loved, that others cared so much and that God had a plan in all of this. It comforted me knowing that Ireland wasn't simply gone...there was more. ............I will not go on and on about all that this did for me and how incredibly grateful I am to this church and the countless others who prayed for my family and for Ireland. Just know that this shawl worked magic and that I wish I had a gift for knitting, but I don't. However, I can sew. I am not an expert but I make things with love and I believe I have something to offer. I figure that I can use the same concept of the shawl as when I make these eye masks because I do so pray that the baby that would wear it will heal and that the mother, father, and family will find comfort in knowing that they are not alone. ........In addition to some comfort when I make these little eye masks with a prayer, NICU babies tend to need some darkness and new parents tend to love the thought of dressing up their little ones.

Well, wish me some luck. I need to work on the site (in my limited blog knowledge) and also work on the little masks. I'll also try to figure out how to upload a pattern for the eye masks (if nothing else, take an adult pattern and simply reduce it). .........any suggestions are totally welcome. I wanted to honor Ireland and wasn't sure if I should have been exclusive to CDH but figured in the long run, I'm trying to do something. That has to be better than doing nothing.

One month

2009-09-30T08:53:00.005-06:00

First off, I don't know why this blog has flipped my baby's picture. I've tried to rotate it several times with no luck. Oh well, isn't Ireland just beautiful?!

I can not believe that she isn't with me. I have such extreme emotions at times and have this feeling that I just don't know how I'm supposed to be feeling. I'm currently on 100mg of zoloft so I don't know if that is doing anything...just know that the dr's I had when she passed away really thought I needed it. Hmm, who knows?

Yesterday was time for my 6 weeks appointment. This was much harder than I thought it would be. Pregnant ladies were everywhere, this was the place that was previously filled with hope for us, and well.......it just sucked. .......Luckily, Mikey got time off to come to the appointment with me. I really think I would of had an accident if I would of driven myself. I could barely see through my tears just driving to the UofU hospital.

I've been home for some time now and have somehow become a scrapbooker. ....I figure that this is the only way I can continue to do something for Ireland. I'm not the greatest at it but there is something comforting about feeling that I'm doing something for my baby girl. .....I have so many pictures...not enough...but for only having her for 11 days, I feel that I have many. ......I can't get over how much Ireland changed from day to day. I look at all those pictures and wonder what she would have looked like as she grew. Of course, I imagine that she would continue to be beautiful. ....Mikey and I received the pictures from the group "now I lay me down to sleep" (they take pics of babies when they pass). Anyway, I was sort of disappointed in them. Her hands were photographed and obviously not cleaned after the hospital had made molds of them. Also, I think that as beautiful as she is in each picture...well, she's not there. The pictures that I have, she's there. ....Hard to explain.

...I think that Mikey and I are doing okay for what we're going through. Tristan seems to be doing okay too. This has been hard as hell and I don't know when any of us will feel "normal" again, but I do think we'll be fine. ....it's strange. One minute, I can be fine. The next minute, I'm just not so good. I like being home and am slowly getting out of what I've deemed my "self-imposed-isolation" but at the same time, I don't like the thought of going to too many places, seeing alot of people, being around children, or working at something that requires any amount of concentration or major decision making. ....the children thing. Well, I feel like a big meany sometimes. I've always loved babies and kids but I can only handle them a little right now...especially little girls. No offense to my friends with beautiful girls, it's just hard right now. I can see Tristan in little boys but I see Ireland and all my dreams for her in the girls and really any baby. It's just too much right now. Small doses.

Anyway, I have a friend coming by today to do some scrapbooking. We're practically Utah mormons, huh?! :) Just kidding. Love my mormon friends...all one or two of them!

.......well, I wanted to add that I miss blogging and communicating with everyone but I feel that my writing probably sucks due to my lack of concentration or maybe I can even blame that medication I'm on. I have no idea what will happen to this blog or where my part in CDH awareness lies. I figure that I've got nothing but time right now and that I don't need to know everything at the moment. I'm still grieving in my own way and just trying not to be some depressing sap. .........Mikey and I would like to try for another baby. I have mixed feelings here and know I want the baby but really could do without the pregnancy....give me some time to figure that one out, for sure! ..........Anywho, look at my lovely Ireland. She's just so adorable and missed so much. I had no idea that she wouldn't be home with me eventually. I felt nothing but confidence in her and still don't like to go to that last morning of her life. I say that I don't understand what happened and seriously, I don't. There are facts that I understand and facts that I either block out or just don't want to understand. I don't know. I just wish she were here.

If nothing else, I am learning to truly believe that there are things worse than death. I can not explain this in detail right now because today, I want Ireland here with me. Even wanting Ireland in my arms, I know that I'd want her to feel good and never have to suffer, I'd want her to know that I was loving her and keeping her best interests at heart always..........yet another thing hard to explain. I just know without a doubt that I love Ireland and will never stop missing having her in my life. She will forever be my beautiful daughter and I hope that our heaven will either have her in my arms or holding my hand so that we can just be together.....this thought is what keeps me going. ..........those that have no faith love to say that religion is based on our fears of dying, maybe they're right because I would rather die today then to think that I would never be with my Ireland again. .........Fortunately for me, I know that her birth alone (and any birth for that matter) is proof of a good God and that sustains me.

Gone but not forgotten

2009-09-26T16:31:00.002-06:00

It has almost been a month since my baby daughter has left this world but the pain of her loss is still as strong today as it was then. I find myself fighting to look at some of her pictures, mostly the ones of her right after her surgery. Chanda has been a fighter during these hard times for me and don't know what I would do without her. We were at old navy today getting T some clothes and the fitting room of course it right by the baby stuff. I saw a little halloween outfit that said hoot hoot I'm so cute in pink and thats all it took for the tears to start slowing going down my face. Its the little things that can get me I guess. I know everyone tells us that in time it will be easier and I'm sure it will. But 11 days just wasn't enough time for this daddy...... and only a month from her passing just doesn't seem like it has been that long.

Everyone that has read this blog has been such a help to Chanda and me. We don't know what will become of it but in time the answers will be found. Thanks again to all......

Ireland Rose Brady's daddy forever............

Dear Ireland

2009-08-31T11:52:00.003-06:00

Dear Ireland,
I love you. I love you sooooo much that I hate to open my eyes because then you're not there. If I close them, I see that special day that we had. You were smiling and talking to me, I swear. Your arms were going and your little toes were curling and it was just a good day for your Daddy and I. This is the time of all your too short 11 days that I will burn into my memory.

I love you. When I can't think of what to say...I just think, I love you. I struggle with what we decided. When they had us come to your bed and kiss you, I swore you were breathing and I really just didn't understand why all of the nurses and doctors weren't doing more for you. Your daddy says that you weren't really breathing and that your little lungs were full of blood. Maybe I should have paid better attention when the doctors were talking because I just don't understand any of this. Honestly, baby, I didn't want to understand. I just saw you looking beautiful and that is all I wanted to know. You are the cutest little girl that I have ever laid my eyes on. I hope you know how very much I wanted you and I feel that I needed you, too. ....I just love you soo much. I'm having a hard time today. I woke up early, around 5 and just started talking to you and seeing you. Around 7, your daddy started to wake up and I opened my eyes and the crying began. I was really sort of mad that the sun came up. That's probably silly but it didn't seem right to me......Ya know, I don't know when I'll ever stop hurting. With every corner, I see you because I just wanted you so very badly. I went to your room yesterday to comfort your brother when we got home. That was hard but I could see how much everyone loved you too. Your daddy made you a beautiful room. He painted it, put a border around, put a stubborn crib together and moved furniture a million times for me. As for your brother, he's dealing with this much better than I thought. He had a hard time yesterday morning when he saw me holding you, his ride home wasn't very good and he's not real thrilled with this new sad mom but he comes to let me know he loves me and loves you, that helps him and me.

Oh Ireland, I love you. Fresh tears keep spilling and I'm sort of sorry because I want to celebrate your too short life too. Your dad and I picked out some pictures just a bit ago to print out and that is what helped me get out of bed. We actually got to smile a few times, too. We so wish we would have taken more pictures. We just had no idea...I had no idea. I truly felt in my heart of hearts that you'd be coming home. I felt we'd have a long venture at the hospital but I really did think you'd come home. You have all of these clothes, things I've made for you, things that others made just for you, this beautiful room...we had this awesome life planned out and you were a huge part of that. I couldn't wait for you to sneak in my make-up, get into my shoes, want to have a tea party, and crawl in my lap to have me read to you. I had this major plot to turn your daddy into a complete sap when it came to you. Funny, you sort of did this one on your own.

I have imagined that you'd show me everything as new again. Colors were already looking a little brighter once you entered this world. Heck, we even had this gorgeous double rainbow one day...I felt certain that this was a sign of good things to come. I had already decided that you'd be a little fairy for halloween. I had you in this pretty green outfit with frilly tutu of a thing and a little head thing going around with little roses weaved in and out. You would of been the prettiest fairy. I understand your granddaddy Doss was calling you Tinker-Bell...how appropriate because I could just see you as this feisty, fun little thing.

I got a major cry when I saw that my inbox had over 100 messages. I'd imagine they're all about you and when I feel that I can breathe, I will read them and surely find comfort. I just can't do that yet and I hope you understand that I'm not being selfish,.............maybe a little, I'm just sad. I wanted you here with me.

Yesterday morning, after we saw you in your little bed, your daddy and I went into a room and they brought you to us. I had them wrap you in a little blanket that I had made. I don't know if it was the prettiest one you have but I made it for you and was so glad that it was there for you. You looked so cute and so beautiful and I swear you were smiling and just looking so dang peaceful. I didn't realize it at the time, but a nurse came in to check your heart beat and it was beating so I'd like to think that you knew your daddy and I were there. I hope that you know we were loving you ...I hope loving you out of pain and into what brought you that smile and that peace. I couldn't stop touching you and kissing you and when your daddy held you, he just rocked you. Your brother saw you too. He couldn't talk because you were his little sister and he wanted you too. He only stayed a bit but he was loving you too and I hope you know that. .....I love you. I think we gave you the perfect name. Ireland Rose. ....I think that is the most beautiful name in the world and I'm proud to say that I came up with that and gave it to you. Ireland wasn't just a name for a pretty island. It was the name of a celtic goddess. Her name was Eyre...the goddess of soverignty and if I understand correctly, that means she was a law unto herself....there are probably more in depth meanings but I like this. .....Ireland Rose. You were definitely calling the shots the entire time that we knew you. You showed us miracles daily and proved the doctors wrong more than once. .......That last day when we decided that we wanted you to not suffer and not be in pain and that all options were running out, because baby, I was willing to push your strength and test it but all options pointed to a road that led to an inevitible outcome of "this", so we had to make the decision to choose a life that was not to be had on this earth but elsewhere. It was the hardest thing. .......I love you. ........I really thought you'd prove the docs wrong again, they'd come get us and say "wow, she's doing great".....I really, really thought this. How dumb of your mommy to not listen to those smart doctors. .....They were really the nicest people and I'd like to think they gave it their all to save you. Goodness knows we asked if we made the right decision and all told us that we were brave and did make the right decision. ....I don't think we were brave at all. We didn't want you to hurt anymore but like I said before, I would have pushed you a little further had I thought we could have got through this. You have a stubborn mom and I felt that you had a fighting spirit in you. I want you to know that I thank you, my precious little Ireland. Thank you for my 11 days, thank you for showing me how you could overcome things so quickly....you will always be loved.....thank you for those times that you looked at us and for that day that you were speaking to us...there were not words heard but baby, I saw that you were talking back and it was a beautiful thing......thank you for holding on so that I could finally hold you in my arms and you were there...I know you were there. .....I just love you. .....I loved your daddy so much and was so glad that you came into this world. You were made through the deepest of loves. I hope you felt that. .....I feel like I'm not saying everything that needs to be said and I'd imagine that I'll talk to you forever...I know that I'll talk to you forever.

I promise to love you always and keep you in my heart with the happiest of memories. Your time was just way too short. I promise to love you daddy and your brother always. You can never be replaced. Pictures will never completely do justice to the beauty of you..to your complete adorable-ness and cute-ness. ....I've always been afraid of death even with religion or anything...I've just been afraid...maybe of what I'd be missing here on earth or maybe even because I wouldn't want others to miss me....right now and forever, I'm not afraid of dying. I'll one day get to be with you again and that will be amazing. Until then, I'll talk to you, love you, see you, remember you, hold you in my heart........I'll love all of our family and not take any of them for granted....I'll do my best to respect the life I have because you showed me how precious each day can be. Thank you Ireland. Ireland Rose. The most beautiful words put together and the loveliest gift I could have ever recieved on this earth. .......I hate ending this post, this letter....but, I'm not ending anything, right? You are with me and I with you. xoxo

Sad news

2009-08-30T15:07:00.002-06:00

This is Mike and Chanda's friend Meredith. I have been asked to update the blog for them today. I am deeply sorry to inform all of you of this, but Ireland Rose lost her battle with CDH this morning. Mike and Chanda had to make a decision that no parent should ever have to make. They chose to end the suffering of their beautiful little baby knowing that she would not survive without being on ECMO. I just want to say that my heartfelt condolences go out to Mike, Chanda, Tristan and the rest of their family. I pray that God will give them the strength to deal with their loss.
A memorial will be held at Myers Mortuary on 1900 in Roy on Tuesday, September 1 from 6-8 pm.

Short update

2009-08-29T17:09:00.002-06:00

I can't say much. Chanda and I have had to worst day ever here... Her morning try off ECMO went so wrong that we haven't stopped crying since then. Her poor little lungs filled with blood and we just about lost her.... They have put Ireland on a whole new ECMO machine now and we've really been told that if they can't get her off of it "soon" that we aren't looking at a very good outcome. It sucks that the machine that is keeping her alive is also her worst enemy because of the blood thinners that have to be used with it she is just bleeding every time they try to take her off. We are just at a lose right now. We still have hope but now the fear is very very real to us. She did very well on the transfer to the new machine and they were going to use less blood thinners to try and curb they bleeding and for now it seems like it has worked. They next 3-4 days will be hell, but whatever the result I love Chanda more than anything and we will be there for each other no matter what. Hope they can just let Ireland rest up and pray the next try will be the one.. LOVE YOU IRELAND!!!!!!!!!!!!

Being corny/sentimental

2009-08-29T07:35:00.004-06:00

I have not been very good at posting on this blog lately. I've been tired and am constantly feeling a nervous wreck. Today we climb that mountain of permanently getting off ECMO (her life suppport/safety net). I'm scared and excited for her to be done with it. I really pray that we're not asking too much, too soon. If nothing else, Ireland has proved to be one hell of a fighter. She is amazing to me.....One of us will post once we know how well she did. Her trial went well last night with them just having to turn up the ventilator. Imagine that once she is off this ECMO that it'll do wonders because she won't be on all those nasty blood thinners anymore. .....Also, so unlike me to have such a small post :), but I just wanted to say that I'm so thankful to have a hubby like Mikey. He keeps everyone informed and has just been awesome to me throughout all of this, I'm going to hate when he goes back to work. He has been what I need on a daily basis and I'm just really lucky to have him. And then, I want to say that Tristan has been great too. He finally showed some major emotion last night and it was time. It's hard for a young teen to understand all of this and he's just ready for Ireland to come home. ....I love all of my family but this little immediate family of mine, Mikey, Tristan and Ireland...well, I'd give them the world on a platter.

thought morning would never come

2009-08-28T07:59:00.003-06:00

Well our Ireland is still keeping Mommy and Daddy crazy. We went to see her around 830 last night and poor thing had quite a bit of bleeding going on from her intestines silo. Nurse changed the gauze pads and everything, poor thing. We wanted to spend some time with her cause with the surgery earlier yesterday and then they went back in to work on the blood loss, we didn't feel like we were there for her much. Well as things go at the NICU, we were there for about 10 min. then we were told that another life flight baby was coming into our bay and we would have to leave. AGGGHHHHHHH Just want some time with my little girl!!!! So we decided to go to the hotel and try... and I mean try.. and get some much needed rest so we could be strong for Ireland in the morning...10pm phone call from the DOC. Ireland's bleeding was much more than he wanted to see and he would have to go back in and try to find and stop the bleeding.. Now this would be the 3rd time in less than 12 hrs our poor sweet heart would have to go under the knife.... I hope so much that she isn't in pain and her little body can handle all these drugs they have to use on her. I feel like she is fighting so hard for her daddy and mommy and I just wish I could trade places with her. No parent in the world would want to see this happen to there little precious girl and I pray I'm not asking to much of her. She has given this daddy so much in such a small time that I can't wait for the days and months ahead. Sorry got off on a little tear fest moment there...Back to my baby... doc called back around midnight and said he found a small cut/tear on her intestine and a bleed on her stomach wall. He put a small stitch on both and it seemed to keep everything as dry as can be expected for what she is going through. Getting ready to see her this morning and will update all after wards. Lots of love to my brother in law Phil... He wishes so bad he could be here for Chanda and just know Phil you are with us through all your love and phone calls!!!!

well long night

2009-08-27T18:30:00.002-06:00

Little Ireland is just fighting and fighting. After her surgery her belly was swelling too much and the doc decided to go back in and open her belly cut to let some of her "guts" out to release her pressure. When he got in there her belly was full of her blood bleeding from her abdominal wall. We knew this was a big risk because of the ECMO machine she has been on blood thinners the whole time. So anyway, she is doing well and they have taken her "inners" out of the belly cavity and they being held in a wrap to keep from drying out. They will keep them this way so they can keep track of the blood lose and it will also help her lungs have the most room to expand to get her off of ECMO in the next 24-48 hours... This little girl just keeps us on our toes for sure!!!!!!!!!!!!

2 steps forward... of course a step back..

2009-08-27T15:22:00.002-06:00

Well the Doc called us back up to the room during r lunch and informed us that they were going to have to open up her belly cut to relieve the pressure. He had thought at first that it would all fit and would be fine but after a hr it was swelled up pretty good and he was afraid it would start cutting off her blood flow. So they will just open back up the cut and let some of her innerds come out to relax the pressure. They will cover it up with a plastic wrap and in a few days slowing start getting everything back in.. Not a big deal... I know I'm saying having your guts out is no big deal right!! So hopefully we will get back in to see her in a half hr or so and see what has happened now!! But really no worries.. she's my tuff little girl... here are some before and after.. and later I will have some after after pics!! Mikey

One battle won so far!!!!

2009-08-27T12:15:00.003-06:00

Well they moved up the surgery on us. Called at 830 to say it was at 10!!!! good thing we were down in SLC already heading that way. So it was good that it was sooner cause Chanda and I would have just been a wreck. Anyway Surgeon just came in and said the surgery went great.. she had just a small hole and he just sewed it up and everything fit back where it was suppose to be!!!. Chanda and mine tears are still running but tears of joy. we still have a fight ahead but today is well and we just thank everyone from the bottom of our worn out hearts... love to all..

PRAY

2009-08-26T21:09:00.003-06:00

I am a basket case! I looked at all of our pics of Ireland tonight and our little girl has come a looong way! I forgot how huge and bloated she got on that first day of ECMO. My word!!! She was twice as big as she is now! .....I looked at what I'm calling the "many faces of Ireland" because she looks so different each day! And man, she is one beautiful baby. I am glad that she is relaxing now (although the fact that she needs so much sedative and morphine to get there sucks), but I really enjoyed that day when she was just kicking around and looking at us. I realized how much I love her that day. And ya know, she so knows who we are. We can hardly speak without her getting excited. And man, she knows who daddy is. Jealous as I am, I am pretty sure she wants to know where he is first........Today, Ireland started to wake up from all of her sedatives and such and gave us another peek of her beautiful eyes. You could tell that she was definitely on some heavy stuff but it sure was nice to look at her and have her look back. Too soon, it was decided to up her morphine and she was out again.

As Mikey posted before, she's having her surgery tomorrow. She is still on the ECMO. ....I have faith in the doctors and I pray for the strength to think positive come the morning. I want to be strong for her and whisper encouragement before the afternoon comes and with it, the surgery (3:15 our time). .........I have now pumped 3 times with no success. I guess its the stress. I mean, I get a drop or two that sticks to the damn suction cups and that is it. I've never really given a hoot about breast feeding but seriously, this was the one thing I felt that I could go out of my way and give to her. I can not for the life of me stop crying. I'd say my breast are shriveled and useless but anyone who knows me, well....they're far from shriveled and they hurt as if the milk's there and just won't come out....I don't know, Mikey says I just need to give up tonight and sleep.

I can't even call the NICU for an update...Mikey has to. After all the blogging that I've been doing for months, you'd think I'd be excited for this surgery and not such a ball-bucket/cry baby at any given moment...Mikey just called as I'm writing and the nurse said that she had to have some more morphine tonight, Ireland has to just be restless and sick of all of this, and other than that the nurse said she's nice and pink and resting.

Anyway, we have a room at the hotel for tomorrow night, Tristan is staying with friends and we'll be as ready as we can be tomorrow. I'm totally nervous and scared. I feel like my heart is just being slashed open and I wish we could just trade places. I so don't want her to hurt and I just wish she were home and that we'd never heard of CDH.

Totally can't write anymore and need to go to bed. Please pray like crazy for all involved tomorrow...Ireland, especially.

Surgery Tomorrow

2009-08-26T18:24:00.004-06:00

Well, no trial off today. They started to lower her ECMO flow and her BP just was too low. So they brought back up her flow and the Doc decided it was best to leave her on the ECMO and proceed with the surgery tomorrow @ 1515 MT. Thats 315 pm mountain... Chanda and I are starting to get pretty nervous but also believe that she is in great hands and that by staying on ECMO she has somewhat of a "safety net". She is looking really good lost alot of excess fluid so we hope the surgery will be pretty good. But of course tomorrow we will both be a wreck!!! So if you believe in praying, send one her way. Her are some pics from today. Fingers crossed for tomorrow....

maybe another trial off today or surgery tomorrow

2009-08-26T12:32:00.002-06:00

Well Ireland looks really good today. She is getting pretty skinny so we are getting our real first look at what she really is going to look like. They talked today at the morning meeting about lower some of her ECMO stuff to prepare her for another trial off maybe this afternoon. Dr. Barnhardt who will do her surgery really wants her to do a couple of hrs.. more like 4-6 this time and have really good numbers or he doesn't want her to come off ECMO until after the surgery. So if the trial off goes well he may wait until Friday or Sat to try surgery. If its not so well he wants to do surgery tomorrow.. So we are just waiting to see how things go until this afternoon. Here is a pic of her today. she's kinda squishy in the pic. think she is sick of ECMO!!! lol

Sucky day

2009-08-25T22:00:00.003-06:00

It really wasn't that bad, just a low I guess. Little Ireland had her little eye masks on that Chanda made all day to keep her from moving her head around. So we couldn't see those great blue eyes looking at us. Plus she was moving around way to much and we were all worried that she was grabbing for her two lines that go into her heart. So they had to start to sedate her but of course every time Chanda or I got close to her side or talk a little louder she would know we were there and start moving around a bunch more causing her BP to go up. Finally they upped her morphine and she was a zombie after that. Felt like we didn't get to spend what we would like to call quality time with her today, but when I sit back and really think about it any time I get to spend near her is great, great time. I realize that some of the good people who follow our blog have lost their little angels and that my whining about this is nothing compared to what they have gone through. So with that said, I will no longer bitch about any time I have with my daughter knowing that others don't have that chance. See this blog is good for something. It really puts things into a different light. On another note, today there was a new baby in Irelands area. A little boy named Joe. Guess he was born last night. Well we didn't see anyone with him which we thought was sad but thought maybe he was life flighted in and his parents were someone else. Well around 2ish his parents came in of course looking sad to see their little bundle of joy with vents and tubes. As fate would have it this little boy has CDH. I felt so much for them because they didn't know anything about it!!!! I guess this was a very late case of CDH because it was never found on her sonagrams. He was born and then they found out. Chanda and myself got a moment to talk with them and hoped to share with them what we have found out since we knew at 20 weeks. I can't imagine knowing what I know now and having this happen out of the blue. We shared what we could in the little time we had to talk and hope even the littlest bit we could share will help them at least through today... Time for bed here. Sending out love for another precious baby, Josheph, has he fights this demon called CDH. Also, would like to mention little maximus is having a very hard time after a pretty good start and my heart goes out to his mom and dad. Need anything please hit Chanda or I up... Good nite Ireland!!!!

RELAX

2009-08-25T02:15:00.003-06:00

Just so my brother knows, I'm sleeping, just happened to get up and pump. And now blogging until meds kick in and can go back to sleep!

Yesterday was tough. We're told to expect the roller coaster...3 steps forward, 2 steps back...etc. It's just when it happens, you still are not prepared. ...Plus, I physically had a rough day. I went from being a few hallways away from Ireland to having to commute to see her, walk around the hospital for various reasons and no nap (except for the not so fun mini ones I'll tell you about).

Anyway, we arrived at the hospital and for once, did the whole valet thing so that Mikey could just wheel me up to Ireland's room. We sat through the morning meeting, where there were considerably more people there. You could definitely tell the difference between the weekend and a week day in a children's hospital!!! ...Well, first thing, our nurse said she'd been peeking through the one eye off and on all night. Of course, we begin talking to her and both eyes pop open and she just wiggles as if she really wants to get out of her lying position! And being so proud of her progress, we're in her face talking, smiling, tearing up and just touching where we can. She was such a "normal" baby at that time. I swear, it's like your heart will just burst any minute because you want to pick her up and just love on her!!!....Well, we sort of settle ourselves down because we know, as good as she looks, she needs to settle herself down. ...We start "half-ass" paying attention to the meeting...very hard to be in that meeting completely when your little baby is vying for your attention and just looking her best! ....There are serious talks going on. She'll have the trial to take her off ECMO sometime in the afternoon. There is also a debate about how much narcotics she should be given. ....ECMO babies tend to be in the hospital so much longer than the average NICU case (atleast for CDH) because of their addiction to some serious meds.....Anyway, the CDH babies at Primary's have typically had their repair surgeries (to replace the stomach, bowels, etc and repair hernia) while still hooked up to ECMO. Some of the surgeons are wanting to do their best to get her off of the ECMO because she'll be off the anti-coagulating drugs (these are blood thinners). This makes sense because even though they can deal with the extra bleeding during surgery, it is a minus-not a plus. Also, they truly feel that she can handle it because she's done so well on less narcotics during her entire ordeal of cooling (this was those first 72 hours when they were trying to slow down any negatives from the cord prolapse) and since she's been on the ECMO. .....Just to take a second on the narcotics topic, some CDH babies are given pretty high doses of morphine which once off, it takes about a month or longer to deal with what we like to call "baby-rehab". It is not necessarily a new practice of trying to reduce the narcotics but it is new at Primary's because their standard practice has been to just push the narcotics and do the surgery while on ECMO. Ireland has been watched hour by hour and her doses of narcotics have stayed at a minimum thus far so that they can reduce the time she has to deal with her "addiction" later on. .....

Anyway, I loved on Ireland for a bit, Mikey took her hand for some daddy time, and I went off to the "pumping" room. Well, that pump looked like something from the 50's!!! It was a giant stainless steel thing with hard plastic covering it...like it was some museum exhibit that is showing you how it's parts work...really weird. I had to read the directions and basically found this tube sticking out, placed what was obviously not a matching part but was the tube from my pump at home and connected the 2 as best as I could, turned the lever, and did my thing. ....I am soooooo taking the camera with me so that I can take a picture of this contraption!.....Anyway, I've already explained my pathetic output of 1ml to 2ml.....Sure enough, I wake up....YES, I fell asleep for about 10 minutes!!!...and had spilled that pathetic but precious amount of milk from the one side. I was just discharged from the emergency c-section the day before and am obviously still on percocet. In addition to the ibuprofen and some other thing. ....I had actually said I didn't need the oxycodene for the "breakthrough" pain. I felt that I was doing okay with everything else. Well, truth be known, I was tired all day yesterday and walking everywhere. This was sort of dumb but at the same time I need to get around. ...anywho, I finished what I could pumping. I got what I could and finished my pumping without major incident. ...I came back to Ireland's room. Mikey said the nurse had banished him from her bedside in favor of a chair off to the side. Apparently, Ireland can smell us too and when we're around she gets excited and her blood pressure tends to go up. ...So with that, we decided to go to lunch, the nurse (Jane) was going to locate a lactation specialist to meet with me, and then we were headed over to the U to retrieve some milk we had left over in their freezer.

Once Mikey and I had lunch, I decided to take a break from walking everywhere and Mikey retrieved the milk from the U. Once we finally got back to the NICU, we were told at the front desk that we couldn't go to Ireland. What the heck??? ...Apparently, they had started the trial of taking her off ECMO. ...This sort of upset me because even though we knew it would be sometime in the afternoon, we didn't know when. ....We went back to the family waiting room where I fell asleep on the couch for about 30-45min. ...I couldn't believe that no one had come back to tell us what was going on. I woke up sort of grouchy, in some pain and just upset. Yet another breakdown was coming on fast! ...After a few bathroom breaks, too much waiting and really getting whiny about not feeling well, I went to the NICU's front desk and asked if they'd forgotten us and if someone could retrieve my medicine that was in a bag I had left in Ireland's room. ...At this point, I should of pumped some time ago and I should have taken those meds atleast an hour before. .....I broke down at the dang front desk. I was tired, wanted my meds and felt that the doctors and nurses had been sneaky in not telling us that they were going to do something major on Ireland!!!.....Well, eventually, I was medicated and the nurse practitioner came to speak with us.

The nurse apologized for not letting us know when this was taken place and made it clear that from now on, they'd inform us when these things were going to happen. I let her know if it was in Ireland's best interest, do what you have to do....but a trial of turning off the ECMO was something that I would of liked to have known about.....hard to explain but at the same time, it was common sense to me that they could of atleast called and said that they were going to do this.
Well, apparently Ireland did well that first half hour and then not as great the last half hour. The decision was made that she should stay on ECMO for two more days and they'd try again. They began to suction some of her tubes and found blood when they suctioned her healthy lung. They'd run some tests. They still felt she was doing well but that she really just needed to rest. .......Well, fine. What can I do? ...Well, what I did was just cry alot. I think it was a terribly stressful day. I felt that maybe we shouldn't have done so much when she was getting excited to see us. When we went back to her room, I was scared to "stimulate" her by talking and touching her. I actually asked the doctor if we could continue to talk to her. He said to say our hellos and go back to just finding and arm and placing your hand there and that's it. Ouch! ....We were reminded that for her looking sooooo good that she is on major life support and with that she has umpteen additional meds and pumps supporting her support!.....They want to continue to keep her sedated but keep the narcotics to her healthy minimum which means she may still get excited when she sees us and pop those cute eyes open and wiggle and...well, we have to learn to not get excited because then she gets excited....you have no idea how hard this is!!!!...To step back is HARD!!!.......Luckily, we had to get home for Tristan. It was, afterall, his first day back to school and there were those gazillion papers to sign. We still had no food in the house and laundry was backing up....We also noticed that I really needed to get some rest, too. We made the rule that Ireland needed two days and so did I. I'm not going to be the martyr and hurt myself through this. I'll use the dang wheelchair a little more these next two days, ask for something to prop up my feet while at the hospital, and take the two percocet (not one). I'll try to take a nap after lunch somewhere, somehow. My mission will be to finally meet up with lactation. I skipped two pumping sessions last night in favor of rest. My feet were extremely swollen when I got home so Mikey and Tristan did the grocery shopping and I took a warm rice pad to my feet and laid back in the recliner.

Well, my meds are starting to kick in and I should go back to bed. I pumped just before getting on here (1.5ml, thank you very much). I'll give a quick call to the NICU and then sleep for (hopefully) 3 hours more before I start the day. Prayers that Ireland is relaxing and her little lung is healing and preparing itself for the next trial.

Both Blue eyes

2009-08-24T11:06:00.003-06:00

Just putting a couple pics from this morning... She's opened both up for us.. She loves having mommy by her side..

Pictures

2009-08-24T01:39:00.003-06:00

This is my favorite picture. If you haven't already, make sure you read Mikey's post from last night, just below this one. He added several pics and wrote beautifully about her first time opening her eyes and also touched base on things we can expect later today. I am up because I am hearing the call to feed her a la breast milk. Frustrating as it is, I'll continue. I managed to eek out 2ml before bed (this is double what I've previously had) and just before beginning this post, I may have gotten 1/2 a ml. We'll see what the lactation lady says...I'm going to make sure I meet up with her sometime today.

Anyway, it occurred to me that all may not view some of the pics we post as I do....as Mikey and I do. See, this one that I've posted. To me, She's got this precious little eye seeming to recognize my voice, my face. It's just a little sliver of dark blue, just like Tristan's were....don't go on about all babies have blue....Tristan's are still that beautiful. ...Anyway, she has this little expression. When Mikey was taking these pictures, I had just finished having a complete break down with the thought of leaving her for the night, she'd shown us both eyes open for just a minute and then allowed me the pleasure of talking to her while she wiggled around and would peek that one eye open and sort of look around and then focus on us. ....Ireland had been still as possible and her eyes swollen shut due to meds and ECMO up until that moment. They had been weaning her little by little off of certain meds and were trying out how her blood pressure could handle this. This was tweaked in extremely tiny increments because the doctor had made it clear that her cannula (spelling? term right?) that are through the neck and into the heart (ECMO) really should not move and that movement and stimulation could affect so many different things right now....A call around 6pm or 7pm to the NICU, once we were home, actually confirmed that there had to be a little more tweaking of the meds because her blood pressure wasn't handling too much movement that well.....A call I just made, 2 am, to the NICU said that she is once again wiggling a bit and trying to look around and she's handling all of this fine. Her fluids are going down further and she's just doing well. Her blood pressure is looking well. Anyway, going back to her picture. In this picture alone, I see my little princess. I can imagine putting bows on those scalp sensors (or whatever they are). I don't see the swollen side of her face so much unless I'm trying to envision it as someone else may see it..I just see that she is sort of winking and her cheeks are just truly adorable. Her nose is just this tiny little pug thing in the midst of all those cheeks. Her little ear looks almost elfish and I dream of her being a fairy or elf for Halloween. The tape across her face almost acts as a little mask that is hiding this devious little smile and that little chin is just somewhat covered by those tubes. I don't see the cannula so much...think they're pretty well hidden. ....These moments with her were like yet another miracle. I felt God had just given me a gift. It was okay to go for the night. She was in his hands, not just the nurses'. That she was going to be ready for stories and talks tomorrow. That the cooling they'd turned off and felt the need to do to save her from the asphyxiation was nothing to her. She was okay and really just ready to do what she needs to do to get home. ....this picture alone is priceless to me. I shared it with all of you because I thought you'd like it too. ....Anyway, when you look at pics now from when she began this journey (many that we decided it best NOT to share), you can see that there are less machines/towers (towers=yet another med). Instead of a jumble of tangled wires near those tubes, there is a neat set of tubing/wiring that I now understand (for the most part) what it is needed for. Pictures of her sprawled out in her little "bed" show how her color is looking so good. And many times, she's just beginning to yawn and throw her limbs out....Well, I need to get back to bed. I just wanted to see if I could explain the progress we see. I also am hoping that you truly see how adorable she is.

Looking into my beautiful daughters eyes

2009-08-23T21:18:00.003-06:00

Well what a day today. Chanda was feeling very good about her "rock star" assets that have come in. Something about her being able to do or provide for little Ireland right now feels good for her and for me. Today was a very bitter sweet day though. We had to come home today because Tristan is starting school tomorrow and he deserves to have some time to relax at home and get ready for his first day of 8th grade.. Plus Chanda and I were running out of clean clothes and our precious little kitty's were home alone since tuesday and we were sure that their box would need some tendin too. Thinking of leaving her today was just not a cool thing at all... We spent a good amount of time this morning with her and she is doing really well. They are going to "trial run" her tomorrow and try to take her off of ECMO. Very good news!!! We are a little scared but they are just going shut the blood flow off from Ireland and see if her little heart has rested enough to handle life on her own. If she's not doing well within the first couple of min they will release the blood flow from ECMO back on and go from there. If she does well for a hr they will shut off ECMO and one battle won!! They are also talking of doing her surgery mid to late week if all goes well. We have been told to not get to upset if she can't get off of ECMO this time. Sometimes it takes 2-3 times before they can come off. Plus, usually they are on ECMO for 7-10 days and Ireland will have only been on for 4 and a half. So little nervous about tomorrow but things have been well so we feel good about it. Well the afternoon came and Chanda got her staples out and discharged from the hospital then it was over to Primary Childerns for the visit we didn't want... saying good night to Ireland and leaving to go home without her. I'm sure all the other CDH dad's and mother's before us that have gone through this understand how much that hurt....But wouldn't you know it little Ireland had something to make this daddy and her mommy's goodbye not as hard has it would have been. We walked in and Ireland had the little eye mask on that Chanda had sewed for her. I walked over to her and lifted the mask off and my heart just skipped a beat... She opened up both her eyes and looked at Chanda and I!!!... now understand that on friday she opened them but it was early in the morning before Chanda and I were around. We had been hoping since then to see her do it again... Needless to say this proud daddy must have looked like a big baby cause these eyes were running with some of the happiest tears I have ever had. Those big blue eyes just looked at me for a second but its all I needed. I don't know if it is possible to fall in love with your little girl even more than the first time I saw her, but my heart was just beating like crazy... So for the last hour or so before we left we just sat there and watched as she would open and close one eye for us. I said to Chanda now how I'm I suppose to leave now!!!!!! Little girl just doesn't know that she's got me wrapped up like a big xmas present.. lol... Its hard not to be down the hall from her and I know its so much harder for Chanda to leave that hospital without her little baby. We know we are going to be there in the morning but its just not the same.... Well with that I should get some sleep... big day tomorrow.. ohh and some more pics of the cutiest little girl that I have had to pleasure to have with my Beautiful wife... Love my girls!!!!!!!

various ramblings and introducing nurses

2009-08-23T05:16:00.004-06:00

I woke up at 430am and felt like a rockstar. At 36, I have defied gravity and was able to produce 1ml of nutrition for Ireland. Laugh if you must, this is good news. I had a reduction at the age of 19 that had cut my milk ducts, so even with Tristan, I never produced alot. I had said, at the beginning of my pregnancy, that I wouldn't even try the route of breastfeeding due to the frustration of barely getting anything. Luckily (once again focus on the positives here), I will have enough for what Ireland needs. She will not even begin to be introduced to breast milk for several weeks and it'll be in very tiny increments (cc's) at that. ....Unless, a miracle happens and I begin producing as if all my ducts are working, I will not ever really breast feed but simply pump so that I can see how much I'm getting out of each breasts.

Our visit with Ireland was great last night. She has been weaned off just enough meds to start moving ever so slightly. She has what I'll call a quivering chin. Our baby will stick out her bottom lip and squish her tiny chin and it looks as if she's just about to cry ..when out of nowhere, the lip falls, it looks like she gives a little smile and then she's left with this little dimple in her chin and just the most peaceful look. It is the cutest thing I've seen in forever (probably about 14 years ago with Tristan). We're trying to figure out where she got the little chin dimple. Mikey nor I have this. ...Also, we can see her starting to try to breathe. If you have little ones at home, maybe you watch them when they're laying on their back sometime and watch their little chest go up and down....well, Ireland has started this movement but it is distinctly on the right side only. It is still good and what we expect. Her right lung is proving to be very healthy.

The doctors are beginning to talk about surgery and removing ECMO. Big things will be happening this coming week. It's frustrating because every time we talk to a doctor (remember there is an entire team...2 docs making the decisions for machines, meds, day to day going-ons; day and night nurse practitioners that are sort of a go-between/coordinator for the docs and various nurses and technicians; day and night nurses that actually carry out most of her care prescribed by the docs and technicians; day and night ECMO nurses/techs that care for all things ECMO; and various testing technicians, pharmacists, nutritionists, equipment technicians, etc.)...anyway, let me start over.......It can be frustrating because things can change hour by hour. The nurse practitioner, nurse, and ECMO 'lady' all agree that the surgery will happen sometime next week but doubt it would be Monday, despite that having been thrown out as an option. ......These 3 ladies (yet to have a guy for one of these positions), NP, nurse and ECMO, tend to be the ones continuously at Ireland's side. For that reason, they are always in the 930am daily meetings and they are the ones that can usually answer any and all questions for us. So far, these 3 positions (NP, nurse, ECMO) have been held by different people, but we're starting to have some consistency. The ECMO tends to change from day to day and shift to shift because apparently to maintain "certification" these technicians must keep up with the amount of hours that they work on the machine and due to (thank God) the fact that Ireland is currently the only ECMO patient in the NICU, they must rotate. The nurses will start being consistent. They each work 12 hour shifts and tend to work several days on and then a day or two off, and they are either a day or night shift nurse. All of the nurses tend to be older and more experienced, due to the policy that the experienced nurses work with the most critical babies. The nurses also can sign up to stay with Ireland (which apparently Mikey and I can approve or disapprove, based on if we like them and are content with the care they give Ireland and us). We've already had atleast 3 tell us that they have requested to stay on with Ireland and another nurse (make that previous number a 4) do this as well but she is also certified in ECMO (so we've seen her wear both hats).

For the life of me, I can't remember the name of the nurse that is both a RN and ECMO, think it is Anna. ....we'll call her Anna for now .....Anyway, like I said, Anna wears both hats and does the 730pm to 730am shift. She has 3 children of her own and is very east to talk to. She's been Irelands nurse atleast three times and has also been her ECMO 'lady' twice. Anna answers all of our questions in a way that we easily understand what she's talking about. She was the one that had to call me the night that Mikey and I had to agree to put Ireland on ECMO. She let me know that it was hard to make the call because she knew how badly Ireland needed it and sometimes parents just don't agree to putting their babies on the machine due to all the scary statistics of what can happen. We talked last night about the pros and cons of ECMO and she said that sadly she has to remind parents that even with all the fears of ECMO, that without even trying it, your baby will most likely not live....I respect Anna so much already. Her job is not easy but she said cases like Ireland's are what make her love her job. She is one that saw Ireland at her absolute worst. She was her initial nurse after the emergency c-section, her nurse on the night of ECMO decision, she stayed on during the operation of placing Ireland on the ECMO, and has been there in her various positions since the worst and lets us know how much better Ireland looks each time she comes to work with her. Love this lady, and really must figure out that I've got her name right....think it's because we just talk and only said our names once.

Jane is the daytime nurse that Mikey is in love with. She is much older and has worked at the UofU for over 25years. She is from Massachusetts and her hubby is from Virginia. I've spent some time with Jane but not as much as Mikey has due to I slept on the afternoons of Wed, Thur, and Friday (much needed rest and recovery time). Those afternoons were Mikey and Jane time. ....I just think she's funny. She is very motherly and let me know each morning that I saw her that my job was to get out of there, sleep, recover, eat and work on breast feeding. ...Honestly, I think she just enjoyed gabbing with Mikey on her own. .....Anyway, Jane was the first to let us know that she wanted to stay on with Ireland and she hoped that we would all get along. Jane is very much in charge and sort of tells you what's what. She tends to talk about anything and I have a feeling we'll know everything about each other's lives by the time we are done at Primary's. But when it comes to Ireland's care, ...this is going to be a tough one to explain because I like this lady....she knows what she's doing and I believe if she thinks we're not doing something right, she'll let us know without hesitation. She drilled me on the importance of the breast feeding and how I would be no good to Ireland if I didn't take care of myself. Trust me, I'm smiling as I write this. She's excellent at her job and I think she's great for Ireland. She is tender in her care with Ireland, flirts and charms Mikey, and makes sure I know what my job is at any given moment (is this my mother, wink, wink?).

I met Bonnie yesterday. She is another daytime nurse and she apparently was there as the daytime nurse on Ireland's first day at the NICU and also worked with Ireland in some capacity on the day she went on ECMO. That day was obviously foggy for me, so I guess Mikey met her on Wed and I just didn't remember all the people I met that day. ....Anyway, Bonnie is just gorgeous so she's out, totally not standing next to her again!!!.....Kidding. She was great yesterday. She let me know how much of an improvement she sees in Ireland and that she wanted to be her nurse from the get-go. Bonnie is extremely informative. Without having to ask, Bonnie explained every single tube that is on Ireland. All of them. She explained why it was there, what it did...and in plain english. She also started using the masks that I brought for Ireland, proclaiming them the cutest things ever (therefore, bragging on my amateur talents and instantly a loved friend). ...Bonnie also pulls out the computer if you ask about any test results so that we can see things for ourselves. We've actually seen her xrays and ultrasounds. We've actually been there during some of these tests (even befriending the ultrasound technician). Bonnie stays. Ireland will be really in good hands with her.

Then, we met Celeste last night. I was such a motor mouth with Anna (ECMO hat was being worn last night) that I only know a little about Celeste. She is an older, hispanic woman with a really beautiful smile. She seems the most gentle and emotional with Ireland (this is just going on first impressions). Every single time Celeste went to change some tube position, or suction something in or out of tubes, or change a setting on a machine, she'd go get some sanitizer, rub it into her hands and arms, go touch Ireland somewhere, anywhere, smile at her face and then proceed to do her work. This was enough for me to love Celeste and say that I was sure she'd be great with Ireland.

Anyway, pretty long post, huh? I wasn't ready to sleep after I pumped so got on here instead. ...Please continue to pray for all involved (family, drs, nurses, friends, techs, Ireland...anyone and everyone).

Chanda and Ireland first hand hold

2009-08-22T12:58:00.004-06:00

So far today is going really well. We spent the morning with Ireland and getting all the latest updates and plans for her. She is doing really well. They are just trying to get all the fluid off her now to prep her for getting off of ECMO. Right now they are hoping to take her off ECMO on monday or tuesday!! If that goes well surgery on thursday or friday to repair the CDH. Lots of positive thoughts and well wishes is so great and we thank you all so much!! It's just be on belief that people from all over the country and the world for that matter has been following our little girl and are riding the same emotions that we feel day after day. In a perfect world we would all care and love each other no matter what is going on, but for now it is just so great that we have the support of soooo many people that we have never meet. Thanks to all and I hope that our little girl's story/journey will continue to help other who are going to go down our path or even heal those who have already been were we are.... HUGS TO ALL!!!!!

Friends and Family

2009-08-22T06:43:00.002-06:00

Sometimes, I open this little computer that we keep stationed in my room, and even I get excited. I had no idea Mikey posted last night and am so glad that he keeps all of the technical stuff updated for everyone. ...Isn't she adorable? She's still quite a bit bloated but it's such an improvement than what it was! ...Poor Tristan, doesn't that picture just tell you how tired he is?

I wanted to say thank you for all the prayers. I can say with utmost certainty that I have never in my life talked to God as I have in these past few days. And I dare say, I'm pretty sure he hears about Ireland throughout the day from everyone. Funny how this little one has really brought back my faith. How can she not? ...I can not stress enough how much each and every prayer must be helping her. She is doing unheard of improvements in a very short amount of time. Because of the asphyxia and CDH, she has every excuse to be pitiful and instead....she is just amazing.

I want to thank my family. Immediate, extended, the churches reaching out from the past and present (last count of just my Doss family, 5 churches). Thank you. For my immediate family(parents), Mama, Daddy, Mike and Tammy, Donna, Papa Broad and Reg.....I love you all soooo much. I know that we, unintentionally, hurt you by wanting this time alone to bring Ireland into this world. I know it's just as hard for you guys as it has been for us...maybe harder at times because we can see her and atleast touch her. ...I've wanted each of you here at times, who doesn't want a grandparent oohing and aahing over the prettiest little one ever? I've really wanted my mom here because I guess, something about me having a daughter has wanted me to be closer to her (my mom). I would of loved to see Mikey have his parental support...he's been a rock for us and I am certain that he could of been comforted in ways that I couldn't have provided, especially during those initial hours. I pray that all of you have slowly realized why we made the decisions that we did. .....I would have wanted to visit and look my best and spend time with each of you (what I've needed is rest). We would of struggled on who can see Ireland at which time (only 2 at her side at any given point). We would of wanted to provide you each with the best of accommodations and constantly lent you a hand on directions in the city, where best to grab a bite, where to get a quick rest in the hospital and soooo much more. We probably would of been harder on Tristan because the parents in us would of wanted him to look his best and act the man, when he's been just fine playing too many games this week or watching too much television. ....there are a gazillion reasons that (with each of you living so far from us) we felt this was best. .....life goes on and unfortunately, at this time, our living thousands of miles from each of you makes it to where we have had to make these hard decisions. ...I'll be discharged from the hospital on Sunday and sometime that afternoon we'll be leaving Ireland at Primary's while we go home and figure out how to make a routine. It will most likely be one of the hardest things we ever do. ...BUT, I'd imagine that a comfortable "life" routine that includes some level of normalcy will return and it will be so much easier on us to have everyone visit at various times. ....believe it or not, the terms "so much easier on us" feels selfish to say or write "out loud", but Ireland needs for us to be this way right now. We are grasping in the dark with our entire world at times. ......I am rambling. Sorry. ...I'm just doing my best to convey that I know that this journey is as hard on each of you as it is on us and that deep down, it would be awesome if you lived across the street and could be with us each day. That is just not the reality of our lives. ...I can't wait to see each of you when the time is right and you can visit. Unfortunately, with all that we post of Ireland's continuing improvements, she will be here for a long time. And with that, I really don't know what else to say. I love you all. Thank you for helping us and praying and really, being there for us at any given moment. ...In a month or two, when many have not necessarily forgotten us but they've seen that we're dealing with this just fine, they may forget what we need or for lack of me finding the right words, their lives will adjust and they will have to focus less on us and more on themselves....I have no doubt that during those times, each of you will still have us "front and center".

Okay...no more. I love our parents. I can't wait to see each of you and for Ireland to be held and kissed by each of you.

I meant to simply post a thank you to family and friends. Your prayers are working. It shouldn't "amaze" me to see this happening, but it does. It's truly, corny as it sounds, AMAZING. Her improvements are recordable from one visit to the next. The miracles within her are visible. Hour by hour, tubes are removed, medications are already being weaned off. AMAZING!!!

Anywho, back to thanking everyone!! THANK YOU! THANK YOU! THANK YOU!
...I had a perfect birthday. I've never had so many well wishes in my life.

We also had our first visitors. They couldn't visit Ireland due to the hours, but we loved seeing Meredith, Josh and the girls. More than anything, it was awesome to have the girls making each of us laugh and smile. .......And Jeannie and the kids came....Jeannie doesn't count as first visitor because she has become my Samoan sister, I can't wait for my parents to meet her :)

I hope everyone has a great weekend!

Still looking good

2009-08-21T17:45:00.004-06:00

Well little Ireland has been doin quite well. She started off with 16 syringe pumps of medicine and now is down to 8! She's peeing like crazy so kidneys are working fine.. Doc were worried about them because of the lack of O2 during birth but she's fine on that. Her blood pressure is doin great. Echocardiogram and head ultrasound's have all come back a ok. Tomorrow around 9 am she is due to come off the cooling of her blood. The will start to heat up her blood back to normal temps. Right now shes about 92-93 degree's. As far as the ECMO goes she is doin really good on it. They have taken her down to about 20% on it and her BP is still very strong. They talked to me this afternoon about if she keeps up the pace they are trying to take her off ECMO on Tuesday or Wednesday and depending on how she is holding up may do her surgery to put the intestines and stomach back down on one of those days also. Still keeping in mind that this is all best case seniouo and something could change but as we have learned from everyone else here on the blogs that have been in our place.. take the good when you can and that is what we are doin today... Thanks to all for the well wishes and prays and whatnot... Your comments are great encouragement to both of us everyday...

Mikey

P.S. some more pics of "daddy's girl"!!

Running with the good news and happy birthday Chanda!!! xoxox

2009-08-21T09:09:00.002-06:00

Its Mikey,

You all thought now that Chanda is back that I would just leave you all... well you can't get rid of me that easy people!!! I got some very much needed sleep last night thanks to my little girl having a much better afternoon and nite... We are on our way to the 930 get together with all the doc's and nurses, specialists etc... will post on the outcome later... thanks to all for the love and well wishes... Ireland says "THANKS"!!!!!!

GOOD night

2009-08-20T21:31:00.002-06:00

Well, Mikey and I did our night visit with Ireland and she was doing wonderful! I'm still heavily medicated and can only understand things to a point....so with ultra simplicity I present her numbers for you. The number that is supposed to be between 40 and 50 but best at 50 was............50!!!! The 2 numbers that were supposed to stay the same.....were flipping back and forth between the same and one off!!! And for the CDH mama's that have been there before me...she is peeing lots!! For those that don't have a clue about the urine output.....basically Ireland is extremely swollen from the ECMO (bypass) and she is doing very well passing these fluids. And mystery of all mysteries, our baby has pooped TWICE!!!! Those in the know, well yes, we're proud. For those that are learning, pooping tends to mean that the stomach and bowels (that are still in her chest cavity) are working properly! For the Brady's out there, yes, this confirms your genetics :) !!! .......I will sleep well tonight. Ireland's doctor did walk by and say that the pooping was indeed a mystery and something to look into further (must they all be so brainy and scientific)....but I choose to believe that this is going to prove our baby is performing miracles.

Yes, we know to be prepared for a roller coaster with many ups and downs but tonight feels celebratory! Your prayers are working. So thank you everyone!!!!

up til now

2009-08-20T11:36:00.003-06:00

First off, Mikey has been incredible, huh?! I spent a good amount of time last night just reading what Mikey has written and also the post from our friends and family. Thanks so much for all the thoughts and prayers. We've needed them.

As for me, I am well as can be. My entire pregnancy has been healthy and pretty great. I've learned all I could about cdh and well..........what happened is beyond belief.

Mikey has pretty much updated step by step so I'm sure I'll be repeating things....but here is my story.

Tuesday morning we were up at the said time of 430am....I was up at 4 because this was apparently my body's own determined time. ....anyway, we all got ready, did our thing and were out the door by 5. We started our journey pretty dang excited and all that was left, was to call to make sure emergency c-sections wouldn't push us back. We called, were told no emergencies....great. Said we'd see them at 6am and the other end of the phone said "name again"..."Brady"...."oh, we've got you down for 1230pm, cut at 230pm".......this begins our drama.

I was pretty distraught. In hindsight, I was overly upset but lets remember that I'd been told 7am for atleast a month and was told in the recent week or two that I'd have to wait about 12 hours before I could see my baby after the c-section. .....Well, do the math. If I was being cut at 230pm.....who was going to take me to see Ireland at 230am? I was beyond upset!!! I was an official wreck. Well, we turned around, went home, called a few folks and tried to relax. Mikey and Tristan did much better than I with the whole relax thing...T slept until 10 and Mikey just about had to be woken up. I fell asleep for about an hour and then spent the rest of the time playing solitaire.
Well, we all got prettied up and decided to do our best of getting excited again. This was not as easy as you'd think. I was still under the impression of having to wait 12 hours to see her and who was going to wheel me to my baby in the middle of the night. Actually, I was beyond hysterics. Once the nurse had us in what was to be my labor room, I broke down in front of her and commenced to look like an idiot that wanted someone's job for not calling us when there was a major scheduling problem and then to reschedule us at a time that would make it hard for us to see our baby....well, I can not remember a time that I cried so hysterically. .........Fortunately, this irritatingly cute nurse had seen my type before and ended up being some sort of angel that had me calmed and assured in minutes. She assured me that I'd see Ireland as much as I wanted and that the nurses were there for me.

....to keep a long story somewhat short, the nurses have been here for me. Also, because I could probably write entirely too much for one post AND Mikey has done a good job keeping everyone updated, I'll just try to quickly update up to now.

Well, I calmed down and changed into my lovely hospital gown. I spoke with several nurses and doctors about various topics of c-section, CDH, baby names, important paperwork and recovery for myself and later for Ireland. I was given an IV and then the ultrasound machine was rolled in. Sure enough, Ireland had flipped to head down. Crazy girl, when did she do that?!

We were moved to the big room across the hall and back to plan one where I would have a vaginal birth. .........After 2 cervix softening pills (right inside you and pushed painfully into me , or it felt that way) that took 4 hours a piece to take, I had actually started contracting pretty much on my own. Some contractions were stronger than others, some were felt and some were not. I believe I was given one more of the cervix softening pills and the pitocin (contract starting medication) was give to me a little before midnight. The plan was a very small dose of pitocin and just a very gradual increase in the drug because the NICU would be better prepared in the morning and Dr. Silver would also be there. I sort of on and off napped during this time. At one point, I went to the bathroom just because I felt that I could really have a BM and truth be known, sitting on the pot was sort of comfortable. After a minute or two of comfort, I heard that swish and was pretty sure my water had broke. Mikey came in to look because the swish felt different and sure enough he saw quite a bit of blood in with the amniotic fluid. He called the nurse in and she simply had me go back to bed and she'd talk to the doctor on call and see what the plan was from there. ....good patient that I am, I went back to bed, slept some, and slowly got to that point where I was just whiny and uncomfortable. Nothing was working in the bed so I had Mikey help me to the bathroom again. I think I was there for all of 5 minutes, somewhat comfortable just sitting there when there was another swish sound and i knew more fluid was in the toilet. Mikey came to see what I needed and I said to just call our nurse, it was time to get something going...plus, she hadn't gotten back with us on what was the game plan. Well, I got back to the bed, the nurse had arrived and started to check me. The next thing I remember is hearing something about the cord, feeling as if someone had a fist inside me and having a mask slammed in my face where I just knew that I was supposed to breathe.

Many hours later, I wake up from a fog, ready to go back to sleep...stay up for some reason and start to talk to Mikey. He calls me Mama and precedes to let me know that I had an emergency c-section. Whoa!!! That was just weird because I don't remember any of that.

I had a tough time realizing that Ireland was born on a Wednesday and that I gave birth. Nurses are coming in giving me meds, I'm sort of in pain and I just want to see Ireland. Somewhere at some point, I sign some papers, Mikey kisses me and my baby girl is rolled in to see me. I only really see her legs and part of her chest. I see a cute little baby but not really, I can't see her face or anything. I can't get out of the too low bed and she can't be moved in her too high isolette. ....Mikey gives me another kiss, tells Tristan to take care of me and lets me know he'll take lots of pics and he'll be back soon. ........I am moved to yet another room, meet more nice nurses and just sleep. Tristan helps me with anything and everything and I see that my man/child is good. He's really good. Better than that even. ......My bestest friend, Jeannie has been there when nothing was happening and then becomes my sister, mother and nurse all in less than a morning and early afternoon. Mikey has become daddy. He's always been Tristan's #2 daddy and now he's Ireland's numero uno!!......I all of a sudden really want my mama here.........I learn that our beautiful baby girl has asphyxia (result of umbilical cord having been pinched off and taking away her precious oxygen to her brain), in addition to pretty severe pulmonary hypertension (somewhat expected with CDH but in truth we were expecting this to be a milder case). .......My throat hurts because a tube was inserted in my throat when I had to have anesthesia for the emergency c-section. My incision hurts....and I am so tired. .......I want to see my baby. Well, baby girl has been having a tough time getting all of her initial tubes and such in her body. Her veins are awfully tiny because she's been on a cooling blanket. She needs to be at 35-36 degrees Celsius to help ease what has happened to the oxygen that was cut off to her brain due to the asphyxia. .......Tristan has met his baby sister. Mikey has spent some time with daughter and is distraught because he can not do for her. Mikey has also been told to stay away several times because the doctors have been working on getting certain procedures to work on her. ....Some point during the afternoon, Tristan watches a movie and Mikey rolls me to the NICU so that I can properly meet my daughter. She's so beautiful and honestly, just fat and cute. She's actually 7 lbs 12 ozs and 21.5 inches tall. Perfect really. ....did I say that already?...I'm told to ask questions. I do this and with each question, I get the answer that they can't answer that, they just don't know, time will tell. I just had percocet about 1/2 an hour before Mikey wheeled me to Primary Children's, so of course the facts that they give me, I'm having a hard time retaining the information or even understanding. .......I'm pooped. We throw kisses at our baby girl and leave her in the hands of the good doctors and nurses. .....I see that Mikey is also exhausted. On the way back to my room at the UofU, Mikey and I decide that he and Tristan should go on to the hotel and that we all get a good night of sleep. It's still somewhat early, but they need a decent meal, Tristan needs a change of scenery, and I really could use some time to process all of this. .....Mikey lets me know that he'll come back a little later in the evening, so that he and I can see Ireland again before we go to bed. ......After too little rest, too little to eat, and having talked to family on the phone, Mikey shows up and we spend a little time talking and then we're off to wish Ireland a good night. ........She is so still now. She was given a "paralytic" drug. She had been fighting her machines nonstop and she needed to rest. .....We love her so much already! We say our good nights. .......Mikey is sent back to the hotel with some aspirin, love, many thanks for keeping everyone updated and a wish that he'll finally get the deep rest he needs. I go back to my room for some breast feeding 101 and then to try to rest. I read all that Mikey has been posting and just love him even more. .....I hurt but am also amazed that it isn't as bad as I thought it would be. ..........I am woken a few times during the night with pain and some meds. Around 3am my phone rings. It is the NICU and decisions need to be made. ECMO has entered our life. I'm at that time being checked for UTI and having a catheter inserted for a sample and needing to call Mikey....What day is it again?........Well, I take care of my basic needs and call Mikey and let him know that the nurses know that I'll be needing a wheel chair and that Tristan will be in the room......Mikey and I meet with the doctor and we agree to start ECMO (heart/lung bypass machine). This was our biggest fear but we know that this is what is needed. .......Apparently, asphyxia and pulmonary hypertension is a new one for all the big CDH docs. Our doctors have been consulting with the "cooling" experts to prevent further damage to Ireland's brain (due to the cord prolapse). The pulmonary hypertension that we thought would not be such a big deal with our "best case scenario" baby is now off the charts. ...Essentially, we had prepared ourselves for so much, while believing the best, and have instead landed in this vast place of newness and scary terms. ........The ECMO took a very long time to settle into place due to the complications with cooling. .....Mikey and I left to try to get some rest. I got a call sometime this morning that she was stable. With Mikey having been sent back to the hotel to finally get some sleep, Tristan wheeled me to Ireland. .......She is now very swollen and so very still. It's spooky to me. It's hard to look at this precious baby of mine. I'm somehow staying strong and ever positive. I listen in on a meeting of doctors, nurses and experts. I'm so tired. I'm hungry too. I take notes and don't really understand them. I stop taking notes because I really have no idea what I'm writing down. I talk to the nurse. I feel pride that my son is acting a responsible man and loving brother to this precious new life. I touch Ireland as I'm instructed while scared of hurting her or touching one of the flimsy tubes. I listen to that loud pumping Nitrous Oxide machine. I look at the bright red blood going into her neck and the darker blood that enters the ECMO machine. The good nurse is telling me that I should go get some rest. She's right. I'm so tired. ......Tristan wheels me back to my room. I talk to Mikey and we break down over the phone. My nurse takes more vitals from me, I'm given paperwork for a birth certificate, and I have a conversation that I don't really remember with a social worker. I eat a lousy sandwich and fortunately, for savings sake, they have an extra lunch and give Tristan a lousy sandwich too. Mikey calls and he's on his way, stopping to see Ireland first. ....Well, I'm hurting. The greatest nurse I can have talks with me a bit and out of nowhere, I finally break down. I hurt, I'm tired and my baby is at that hospital across the tunnel and I don't know what to do with myself. She hugs me and says it's about time because I need to grieve. I don't want to grieve but I know what she means. It feels good. ........She leaves, brings back some strong medication and explains the new pain medications I'll be on and at what doses. I laugh and say that I have no clue what she's talking about. She hugs me again, leaves and I write this post. Tristan has been my nurse and Mikey will be here at any time. .....I'm tired and plan on getting a nap now. .....I am told to not ask what's happening tomorrow or next week. I ask how the hours are going and if it was a good "shift". ....I feel guilty because I'm tired, wanting sleep and not standing over Ireland. ........I hope she can feel the prayers and love I'm sending to her. ...........this is it for now. I think I've caught up everyone. Please continue to pray for us, we need them. ...my eyes hurt.

some more quick pics

2009-08-19T21:10:00.002-06:00

just wanted to put some more pics really quick...I thought those with CDH babies would appriecate the xray pic... shows the right lung looking good, they little left lung and the intestines on the left... also the wire tube is actually in the stomach were you see it curve back up... Then same pics of us with the little bundle of joy...Chanda is doin just fine.. Ireland's numbers have gone down since the morning... Guess they are having a meeting in the morning to decided on a few options... I still need to feel you all in on the actual happenings of the day after the c section and what went down.. right now we are both just beat and tired.. I feel bad cause me and T are staying at the hotel and leaving Chanda at the hospital but We all need some sleep very bad!! Lots of love to you all that have posted comments... you keep our spirts up... off to sneak on more look at my little girl before bed...

Her she is... Ms. Ireland Rose Brady!!

2009-08-19T12:16:00.005-06:00

I have so much going on right now that I cant even begin to try and get it all on here.... The best I can do is show of the most precious thing my eyes have ever seen!!! Today I have found something the is more powerful that anything else in the world... The love of your child. I am greatful for what I have been giving and now understand what all the other fathers have felt at the first moment you see that bundle of joy... I cannot say what I feel.. therefor I give you Ireland Rose Brady... These Pics are worth a million words!!!! Daddy loves you!!!!!!!

Ireland Rose Brady has arrived!!!

2009-08-19T06:10:00.002-06:00

In dramatic fashion she came... Chanda was in the bathroom and wanted the nurse and when the nurse came in she said Irelands heart rate was low.. so the doc's came in check her cervix and found the the umbilical cord was in her vagina.... so in a flash or blur to me.. they wisked her out of the room in for a emergency c section... I didnt get to go with her so I was a wreck... poor Tristan.. as soon has I heard umbilical cord I grabbed him and sent him out to the waiting room. They took Chanda out of the room in less then a min and I was left standing there going "What the F>>>>>!!!!! Well Chanda has finally came back into the room.. she doin as well has can be expected... We haven't gotten to much info on Ireland yet. From what I have heard she is struggling with her O2 level which we would have thought. Blood pressure seemed fine and she was kicking and trying to breath... I'm hoping to get a update from the NICU here at the U within the hour. I was told she has lots of brown hair... perfect round head and is beautiful... just like her mother of course!!!! Will update again once I find out more...

Water broke?

2009-08-19T04:19:00.002-06:00

Well about 345am Chanda felt like she had to go to the bathroom...now she got a cathader earlier around 830 or so..she called me in after a few min and she had blood in the toliet and I could hear fluid still coming... called the nurse in and they are going to do another sonagram to see if Ireland is still head down. Wasn't a ton of fluid and Chanda is full of fluid so not quite sure were we are. Waiting for the Doc to come back in a let us know what is going on..

pitocin

2009-08-19T01:03:00.002-06:00

Chanda got her shot of Pitocin around 1210am... they are trying to get her some more rest... contractions are pickin up and gettin a little stronger... hopefully some time this morning.... 6-8 we can welcome our little girl into this big crazy world..!!!

Tired

2009-08-18T23:01:00.002-06:00

Well chanda and T are fast asleep finally.. but of course its almost 11 and they will be in to check on Chanda and wake her up.. I hope she can get back to sleep......

They just came in.. going to give her the pitocin here in a little bit.. Dr said she would like her sleep some more before they bug her again... Her contractions on the monitor have been every 2 min. just not big ones....will post more later..

lots of waiting...

2009-08-18T20:48:00.002-06:00

Well.. looks like the are going to give her the goods around 11 or 3... depends on the doc... shes doing fine as is little Ireland.. Chanda is going to get some sleeping pills here in a hr to rest.. Hopefully in the am little Ireland will come out fighting hard.... thanks for the thoughts and prays...

Mikey

Once again.. a change in plans!!

2009-08-18T14:29:00.002-06:00

Well here we go again.... got here to the hospital at 1230... everything going smooth.. Dr came in with the sonogram machine to check the baby and low and behold... little Ireland has decided to flip on her own and go head down now!!!! This little girl of mine is going to give daddy a heart attack way before my time..... Chanda is doin fine.. The Dr's now want to have a vaginal birth so she is going to be induced today sometime... Chanda is happy because less down time and she get to eat!!!! Preggo's always thinking of eating..lol.. she'll kill be for that one... Will keep you all in touch once something else comes along...

Bad start to the day....but its not the end of the world

2009-08-18T06:17:00.002-06:00

This is Mike.. or Mikey as Chanda would say.. Well we get up at 430 and get ready to head on down for the big day... get in the car and start down the road and call the U like they wanted us too and here someone changed or schedule from 6 am to 1230 pm!!!! Chanda is soooo upset and pissed right now... I'm really surprised the lady on the phone didn't get the devil treatment!! But its just a minor thing in the big process... we have come back home to hopefully get a little more shut eye and start the journey all over again..... will post more later...

The Final Countdown

2009-08-17T04:47:00.002-06:00

I've been up since about 3am. I don't know if I was in panic mode or what. My mind was going a mile a minute and I was tired as all get out! I tried to calm myself by talking myself down, so to speak and little by little I am now up.

Have you ever been in the ocean, maybe on a raft or small boat, close your eyes to relax a bit? --Just for a second, then you sort of snap your eyes open and see that the horizon is everywhere and the beach seems really far away? ...this is where I was sort of stuck this morning. In a real time situation, you sort of panic for a minute and then just start paddling your way back to the beach. Well, for the life of me, I was stuck on the freaking raft and could not move.

Looking at the clock, sitting at the kitchen table, I know that in 24 hours I'll be wanting everyone to go to the bathroom one more time and get in the car. We won't want to be late. ...the bags will most likely be packed already and Tristan will most likely be half asleep. Mikey will most likely be anxious and wanting me to chill, we'll get there on time. ...Me, I haven't a clue what I'll be like....definitely just wanting to go so we're not late...beyond that, your guess is as good as mine.

I've looked at a few pics on the Griffin's site (for Maximus), and their smiles have somehow been embedded in my mind. They are smiling beautifully and optimism just sort of radiates from them. Mikey and I have both said that we hope this is what we convey. We both have honestly felt positive and we both have admitted to feeling a bit manic throughout this entire pregnancy...to the point that I (I have no doubt here) actually started an argument last night. It wasn't a yelling thing...it was a "this is what I need" and you're not there....a "I'm not sure what to ask of you" but I need it from you....it was insane, is what it was. I never could quite define what "it" was and yet, I was sincerely upset (crazy moment maybe but truly alone and upset, if you know what I mean).......Yes, we've been there for each other and we've also pushed each other away, albeit in subtle ways ...sort of guarding ourselves and I think trying to protect each other too. .....It's just weird. I truly love this man and know he loves me. I could not have a better mate. But. I realize that he and I are also individuals that process things differently. We are there for each other. We can talk and be there for one another...and sometimes, we can totally misunderstand one another. ....After a long talk, my tears, him probably wanting me to have a xanax or something, we sort of got somewhere. .....We are scared. The optimism is totally there but there is a feeling of being alone and adrift and feeling powerless. ....Neither of us are control freaks but we both enjoy control over ourselves, the direction we're going in our life. Who doesn't?... Well, all of a sudden, we both feel that in 24 hours or so, our world will forever be changed and we can not immediately control any part of the outcome. Absolutely nothing. I can go to the store this morning and get a little more to pack. I can make sure that Tristan will be able to somewhat entertain himself this week AND be prepared to start school on next Monday. I can make sure our reservations at the hotel are secure for Mikey and T and that we've secured our home. However, I can not make Ireland flip her little head down so that I can have the natural, and to me, easier birth. I can not control what happens to me when the doctors numb me chest down, cut me open and retrieve my daughter. I can not demand to see Ireland when the doctor will obviously know what is best at any given moment. I can not make Ireland's natural bodily functions work the way they should. I can not determine the will of God or the strength of my baby. This is utterly out of my hands. ....I can't even say how I'll feel about all of this tomorrow morning and I surely don't know how I'll feel in the hours once she's born. I know I can't wait to meet her and see her....beyond that, I hope that I'm the picture of optimistic joy. I'll want to also be the wife that is reading my husband correctly and being what he needs as well as being the mother that can see what Tristan will need. I hope my body will heal quickly. I just hope and pray, really. That is all I feel that I can do.

I'm not sure why I let you all in on our very personal marriage thing last night but I don't want to forget this. I write all of this blog stuff for the sake of sharing but it's for me, too. .....I also don't want anyone out there to think Mikey and I have problems. Quite the opposite, actually. For a couple facing this crazy unfair (for lack of a better word), "situation", we do pretty well. We can sometimes go on differing wavelengths but this is human. We always find our way back to each other and it's not very hard to do. It's probably nerve wracking to him and myself, when we have to abruptly jar the other, but it feels pretty good when it is done. ....For me, I was just scared last night. We had sort of totally wasted the weekend and I felt that I'd be preparing us all on this journey alone. Silly me, Tristan and Mikey, always step up.

I suppose there is a slight control freak in me when it comes to leaving my home. I'm never a total neat freak, anyone who's been in our home knows a little chaos or disorder feels homey to me. A little. However. If I'm leaving home for a bit, I want it clean and orderly when I come back. We'll create some disorder the minute we unpack. .......anyway, I think because of the feeling of powerless-ness (is this a word?!) over what will come, I just sort of panicked and needed to feel some control in these next hours. Also, we know our world will immediately be changed. We need each other and needed to say out loud that this has been hard and we're afraid that it might get harder before it gets easy ...or "normal" again.

Anywho, it's time for me to get going. There is alot to do today. Honestly, I bet by noon, the list will be covered and I'll just have little projects that I think need done. This is, afterall, going to be my daughter. I've dreamed of having a girl and having never been really the "girly" type, seem to want to channel this while she's a cutie-patootie baby.

Pray for us. Emotionally calmed. Physically healed. Thankful. Any of this would be wonderful.

48 hours and counting down

2009-08-16T05:49:00.003-06:00

Well, would love to be posting about all the things we've got done thus far. But nope, think we're just trying to get through this weekend and cram everything into Monday, so that we'll be able to sleep that night.

Mikey is in what I'm going to call the new male "technical nesting" phase. It began first thing yesterday morning. I asked one little question about the mouse of my laptop, which just needed a battery, and he commenced to defrag, delete and just overhaul this little thing. Well, then he needed to work on the house computer. This, of course, meant he needed to go get a few things. He and T are off to Best Buy. Hmm, my son ended up "finally" (as he'd love to say) getting his own computer(which he, Tristan, did have to contribute a certain $$$ amount for the sake of fiscal responsibility) and Mikey ended up tearing apart our computer to defrag, delete, overhaul and add memory and graphics. This was all in the name of pictures. You see, we need more room to hold all of the pics for Ireland's arrival. ....How silly if you didn't get that because goodness knows, I should of seen the need for all of this....Also, he wanted to provide for his son. .....Anywho, with all the taking apart of our home computer, it's been deemed old, and it is, but I question if this is the time for all of this. Now, we have boxes strewn all over the living room. The house computer is now connected to the television in our family room (where we already have an old laptop hooked up) and Mikey is wanting Tristan to bring out his computer to see if that works even better with the big screen (tv). Yes, that is now 3 computers in the family room. He's doing all of this because we "save money" by not having cable and using the internet when there are certain shows we'd like to watch. ...Well, all I can say is, really!!! What is next? I reminded him that we were having a baby Tuesday morning and that I'd really like to come back home to a clean and somewhat organized place because he knows that I'll stress over a mess like no tomorrow...don't we think there will be enough to stress about?...Needless to say, my hubby just laughs and smiles that I need to relax. He'll have to trade out a few things tomorrow morn (now, today) to fix our house computer (which had better go back in the computer room), he'll update the computer that is connected to the tv (upstairs family room) and Tristan's will go back to his room. All messes will be gone and the world will be a better place. ..........This, for Ireland. My hubby and what I'll forever deem as mans "technical nesting".

As for me, I did laundry and was your basic bum yesterday. I nearly finished my book (The Hour I First Believed, by, Wally Lamb), I watched the movie "Iron Man", and I watched a bunch of original Julia Child shows that the PBS had on. I also ate a bunch of junk yesterday, don't know what was up with that! .....want to see the new Julie and Julia movie, big time...read the book and have also read Julia Child's books. Can I just say, I'd love to see all of her original shows. If I didn't think between Mikey's technical nesting and Ireland's insurance deductible would break the bank, I would of made the outrageous PBS pledge to get the 2 dvd sets for her shows. The woman is hilarious! I love how she'll chop by slamming her knife like a sledge hammer and she'll totally keep eyes on fish and such because we americans shouldn't be so finicky! .....Anywho, basically, yesterday absolutely nothing was accomplished.

Honestly, I'm thinking today will just be slightly better for preparing for Tuesday. I do plan on running to Wally World so that I can get a few last minute things to pack for the hospital. We're also about to have a toilet paper crisis, so figure that I should take care of this. ....For being me and totally manic ups and downs throughout this pregnancy, I'd like to say that a calm and peace has totally entered me. I'm just excited to meet my baby girl and have the upmost confidence that all will be well with a little faith and time. ...I'm thinking I'll miss being pregnant. Crazy, as I'm turning 36 this coming Friday, but we would like one more. ...we'll just leave this topic alone for now. ...Point was, as hard as this pregnancy has been, it's also been a blessing. We've been wanting this little one since we've known we were loving each other and right for one another. ...I was thinking that in spite of all our fears, we're lucky. In this day and age, we've known that there is a problem and we've had the best care possible during this pregnancy and doctors are prepared to do all they can when Ireland arrives. 100 years ago, heck less time than that, Ireland's outcome most likely would have not been good and with her bum on my cervix, I doubt my outcome would have been much better. And, as bad as it may sound, those that didn't have their babies for a lifetime, have had some time and I'd like to think that is something. ...pause for little prayer..........Well, we're just lucky to live in this age where there is so much more technological advances.
I remember not too long ago getting irritated when people would say that they can do soooo much now. And sadly, with CDH, the outcomes are still largely dependent on the strength of the baby, but, there is truth in that statement, too. Just look at baby girl Ruby Hope...she came out with flying colors, AND was ECMO (big bad bypass machine for those sleeping under a rock and just getting around to reading my posts :) ). Also, the last week or so has brought atleast 3 babies that I know of that did not make it and it's time for some stories of hope. Case in point, Maximus Griffin. I love that name. He's going to be the little man that lifts us up and well, I have designated Ireland as the little lady that'll lift everyone's spirits. (Like how I just LET you know that this is how it will be??)....it is time to say "Yes We Can" (stolen from Obama because he's needing some hope too)...We are so tired of this CDH crap consuming us and letting us down. I'm tired of the tears and not having the words to comfort another mother. I am tired of feeling scared and nervous. I'm just ready for the good stuff. I'm ready to face this all head on and KNOW that all will be well (channeling the Studdard family right now). Can you not just feel the annoying little pep rally going on in my head right now???? ...hmm

Anywho, in less than 48 hours we'll begin the real CDH journey. I've been waiting for this for what seems like forever and I am finally ready. Bring it on. I sort of laugh at myself because for all of my fears, this is who I am. In the face of a crisis, I rarely cower. My life has already had it's majorly dookey times and I got out of those with my head held high and usually a better person for it. This will soon be a memory. It's also to be remembered that it is Ireland's battle and I am simply her chief supporter and advocate. In the long run this will be her story more than mine. I say this simply because I have issues with selfishness and pity parties...albeit, I've been known for both. ...I made sure to read the simple passage of Matthew 21:22 this morning. Ask. Believe. Receive. That's the gist of the passage. I ask for her to be strong. I believe it and I really believe she'll be home before too long and received by everyone with open arms.
I have no doubt that there will be tough times and tears aplenty. I'll possibly forget this little pep rally...but I certainly hope that I'll continue to come back to it daily.

That's it for now. .....and just let me know, did your man become something weird a few days before too??? Glad he's been owning this pregnancy, complaining with me, gaining with me....but his personal nesting.....it's something!

4 more days!!!

2009-08-14T09:01:00.003-06:00

Wanted to just say that I've been busy channeling all the positive energy that I can muster. Thinking that God is totally with me here. My anxious feelings have been sort of dissipating and the excitement has returned. ...no, I haven't quite joined la-la-land with no fear but I believe that worry gets me nowhere (remind me of this in 4 days, please!).

4 days!!! Wonder what she'll look like. I dream of a little girl following her daddy in our garden (obviously a dream because ours is sort of lacking this year) but can only see her from behind. Pretty cool to see her though. Totally think this is a good thing!

I've started to bring people in again and not distance myself so much. I don't ignore the phone ringing right now and have actually felt good about the fact that my mom seems to be calling every few days just to check on me. I have really been wanting this week to fly by and it really has. I felt that I slept most of Monday and Tuesday away. And recently, just want to make sure we're getting done what needs to be done.

I packed Ireland's bag. Granted, it's probably too much and just packed things that I wanted her to have. I have a bear that has the heartbeat sound, the angel blanket from my mom and dad, Tristan wants her to have the dog he slept with, a few books, lotion for my hands being constantly washed and probably very dry, a few homemade blankies, a few things acquired with her name on it and the ladybug theme from home, probably too many outfits that I know she won't be allowed to wear (just being optimistic), her little eye masks that I made, tons of socks, hats and mittens.........hmm, no diapers or wipes or practical things like that even though I did pack a bit of toiletries (just in case...soaps, brush, nail clippers...things I'm sure we won't need but still....best to be prepared).

I have not packed my bag, or made a list for Mikey or Tristan. I did, however, wash all laundry and Lucky (our dog) got his world turned upside down this week by having the surgery/snip-snip/yes-they're-gone, done...we heard this would be a good thing to have done, plus we figure it's socially responsible. ...We should have just enough milk to last us until Monday....Tristan has his schedule for school and his locker has been found and he can open it....We have a hotel booked until Sunday of next week (T's school starts then and we'll do our best to commute at this time)....we have a dog sitter (God bless the Sanders family!!!)....we have a Visa card to purchase meals for the week and probably sustain us with gas for a bit (thanks to Mikey's old shop!!! and friends and family, too!!!)....I have read the literature to keep me positive and have packed my "blue day book" that can always make me (or anyone with a heartbeat and love for animals) smile....the ipod is loaded...i dug up some old VHS movies (no disc player) for my hospital stay and for Tristan's wait while I have the c-section....I've purchased nursing pads, sanitary pads and writing pads.......we're essentially set to go!

We just need to pack our bags. And take the trash out. And ask someone to get our mail. And take the probable spoils out of the fridge. And change the litter box (Mikey's job). And make sure the cats have plenty of food and someone to come say hello to them once or twice. And get those books I promised Tristan. And charge the camera..........okay, we're not totally ready but we will be.

4 days!! Glad to be excited. Trust my doctors and Trust Ireland's doctors. Think the nurses we've met have been great, the social workers are totally there for us when we need them, and well, we just need to enjoy this weekend and make Monday exhausting so that we'll be able to sleep that night. .....I'm sure Tuesday will be here before we know it!!!

Last appt before Ireland's B-day

2009-08-10T11:13:00.002-06:00

Well, I want to thank everyone for comments from my last post. It almost feels wrong to post personal desires of hope and just plain ole' opinions in the shadow of someone else's tragedy. I reconcile this by telling myself that life does continue on and that I know that my prayers for everyone else are so sincere. I have read comments from my blog and the other blogs and am continuously amazed by the support out there from those that have heavenly and earthly angels. (I used to not like this term of babies earning their wings until I read someone call their baby an earthly angel, Tracy M., maybe?....it made something, somewhere click for me...and for whatever reason, the angel thing is okay right now...for those that want to balk at me, it's just another opinion and we all know that opinions are like a--holes, and everyone's got one...my blog, so I get to put it on here :) ) ......Also, thanks for continuing to think of us, personally. The advice and understanding from everyone is always so welcome. Often times, I read a comment and they hit my feelings on the nail...makes me wish they were my words. ...Prayers to you and all of your heavenly and earthly angels right this minute!

Anyway, today was the last appointment before my induction next Tuesday. I did not have my beloved Dr. Silver (due to his vacationing) but did have Dr. Denny (whom I called Dr. Denver during my post about inversion/flipping). Dr. Denny was just as awesome as my primary doc. I had a list of questions about c-section and what to expect. He answered everything, spent time with us and just eased worries. Don't we all wish all doctors can be this great?! ...anyway, Ireland did not flip for us. We figured as much and had already accepted that she'd be born by c-section. I'm not as worried about the whole scenario so much anymore. Also, I apparently have between 2 and 3 liters of extra fluid in there with little Ireland. Wow! Guess this means I'll be extra skinny once she's born, right?! She's maybe getting some extra safety cushioning?! ...I haven't really researched what all of the extra fluid means and don't want to fill your heads with bull ...But!, I think somewhere I remember reading that she's maybe not drinking the fluid or something like that...just don't really know here. I'll look it up at some point but really don't want to add some extra worry about something that I can not control. Dr. Denny agrees that Ireland is still best case scenario and I choose to stick with that thought.

Well, I know that baby Maximus Griffin is coming into the world today and pray that he'll have a quick time of his entire CDH battle and that their family can be home asap. Love and prayers to them right this minute!

CDH Loss and where I'm at

2009-08-08T16:47:00.004-06:00

I asked for prayers this morning for Jackson Beal here on the blog and after a simple, take-for-granted and ordinary day, I checked their blog for a possible update and found out that he has passed away this afternoon.

I always do my best to leave comments on the blogs I read because goodness knows, I like reading mine. And yet, something like this happens and I have a tough, tough time finding the right words. I am aware that there is probably nothing worse that these parents will ever experience. I know that this was a possibility from the moment their baby was diagnosed with CDH. I even know it's a possibility with my baby and if you're reading this as another CDH mother or mom-to-be, you have this possibility as well.

It's hard to face this. A little secret for everyone out there, I sometimes hate (or extreme dislike, as I'd tell my son) the CHERUBS site, simply because I think the little angels and lists of lost babies is depressing. I think there is a wealth of information and goodness knows, I printed out the little Cherubs booklet as soon as Ireland was diagnosed, but since then, beyond supporting their information output, the emails of what they need, and little updates on my facebook account...well, I don't like that first page of the website. Who, atleast during this pregnancy stage of hope, wants to continuously be reminded that death is part of the equation? Who wants to really own up to the little 50-50 statistic? I sure as hell don't want to.

I remember at the initial diagnosis of Ireland. The complete feelings of being distraught, sad, depressed and thinking the absolute worse. I googled all I could. I got educated. I got mad whenever I'd see people talk about the blessings of CDH and totally roll my eyes at the disgusting thought. I reached out trying to find someone that could be mad with me and had one or two that said it was okay to feel that way. ....that was a pause moment. ...a stop and thank God someone finally agreed with me, validated my emotions, let me know I wasn't alone. Thanks especially to Bobbi, the friendly Canadian.

That's about the time I began this blog. I, not so slowly, began to chip away the anger and began to feel some hope. I found mothers from all walks of life and in differing stages of their CDH journey. I found the full spectrum of emotion that comes with this diagnosis and heard the joys and sorrows as well. Every step of this blog and my journey thus far, I've done my best to be true in my writings and to also support the others I meet in this small world. I've also done my best to remain positive for myself, the life within me right now, and to the outside world (whether here on the internet or in the world, at large). Nine times out of ten, I truly am that positive and hopeful. You have to be...or rather, I have to be.

My biggest fear is Ireland passing. I can't fathom the hurt, anger, sadness....any of it. I don't like to go here at all and truth be known, as I write these words, I tell myself not to worry, she'll be alright. But do you know that? do I? I certainly pray that she will be a quick recovery. I've invested time, emotion, money, and a ton of love already in this unborn baby of mine. I dream for her, worry about her, laugh at her, call her stubborn, call her adorable, want the world for her, and named her. She is real and I feel her. She is with me every minute of every day right now. And for the life of me, tears come so fast when I think of her birth. Yes, I'm excited to have her and hold her and love her into this world.....and I'm scared. She will be whisked away from me immediately and we'll be apart. How long? Can you say I'll see her in a few hours and think this is what I dreamed of for her, for me? Do I want her on a damn machine that is helping her survive? ..........yes, yes, we all know the routine, the fancy words for the scary equipment and medicines...the actual terminology of what's going on with our babies' organs...what's needed to get better...yada-yada-yada. I wonder if I'll think 3 weeks was a quick time for my miracle baby or if 4 months in the NICU helped my baby soooo much or if the lifetime of worrying about a patch not working or her reherniating or her not having such great hearing or struggling to eat or ....so many damn things......I really don't know what to wonder about here because I just want my baby to get well and come home and be well. Ya know what? Candice sure as hell probably thought these same things.

Anyway, countless mothers unfortunately have the better words right now for Candice. I would just pray she knows that I atleast know where she has been before today's sad news and because of that, I ache for her and her family. I ache for the families that have been through this before and for the ones that will face this later on.

Praying for Jackson and small update

2009-08-08T06:38:00.003-06:00

For those in the CDH blog community, Shawn has updated the status of the Beal family. It looks as if the weekend will be a rough one. To the right, scroll down a bit, Jackson Beal has a link to his blog. Please send a thoughtful comment. I'm sure that they help. ...this is yet another baby that I've followed and I enjoyed a few email back and forth with his mom, Candice. They're a nice little family and it's just so hard to know the words to say when you have not walked in their shoes.
Just a quick update on me this morning, I hurt. The bruising (from inversion) is probably a little better but at 10 days to go before I'm induced, I'm finally knowing that it's time to settle down. I say I'm lazy and such, but like many of us, my laziness does include laundry, basic cleaning and constant something whether sewing (hobby) or going to the store, etc. Since the inversion, Mikey and Tristan have had to take over. They do pretty good, too. I still can't quite sit still for too long and do a few things but my stomach aches, walking causes cramping and such a feeling of heaviness and well, as much as I want Ireland here, I also know it's best to have her inside me for as long as possible for lung maturation.
I have an appointment Monday and will see if Ireland has flipped around but I'm feeling pretty sure that she's in a happy place with her bum still sitting on my cervix. It's okay. There is a level of acceptance and everyone has assured me that a c-section isn't too bad and I've gotten some pretty good advice here and there. If anything, I'm amazed how well my pregnancy has truly been. I've decided that I'll miss her squirming around in there. Mikey would love one more, and I would too really....but, who knows if this'll be my last. I'm not a young chickadee anymore and it took 5 years to get here! For those few that insist on letting me know how big I am currently, I know it's temporary and that my baby has had a pretty decent home in here. Hell, I've provided extra fluid and consider this air bags...granted, wish I could bring the fluid down but focusing on the positive of this.
Anywho, I'm patiently awaiting the arrival of this little one and praying for the other little babies that seem to take up so much space in my heart right now. Whether they're in utero, just born, finally home, currently living the dream or peacefully watching over us all...I somehow love these little ones and don't so much think about the why's of CDH right now but the fact that they have opened doors of love, prayer and compassion on so many levels to so many people.

Inversion = flipping baby....or not

2009-08-06T07:29:00.004-06:00

Well, the inversion/flipping of Ireland was not successful. After a stay from 630am to nearly 5pm, and alot of uncomfortable pushing, Ireland never budged. It didn't even phase her. Her heart beat remained the same throughout. ....meanwhile, I apparently channelled my inner sailor as I was pushed in a not so friendly way.
Just for education's sake, I'll let you know that the actual procedure did not take long. There were truly 3 tries and from hands on the belly to off cumulatively was no more than 15 minutes. (At this point you can stop reading unless you want the details)

I had a quick ultrasound first thing in the morning to see if her head was still up and of course, I was not getting off that easy. From there, various doctors come to check out the fat chick in the hospital gown, repeating what's going to happen, having me sign a few papers, and repeating one too many times what'll happen in the event of an emergency...basically, c-section that day which I let them know was not acceptable...I had laundry at home, no camera and was not packed at all. I had two great nurses...Brittany and Sarah. I was given an IV first thing in the morning, just in case it would be needed later (along with the typical monitoring of fetal heartbeat and contractions). Of course, my fat hand jumped when first feeling pain of a needle, causing the needle to go through the vein. Ouch. On to the next hand. IV was placed more on my wrist due to hard to see veins of said hand. Well, apparently the full moon got all of the Salt Lake preggos in a state because my planned inversion would have to wait for several unscheduled but necessary c-sections. The docs and nurses let me know that because little Ireland would have special needs if an emergency c-section were needed with us that it was in our best interest to wait for the inversion....they didn't want to have the operating room being used when it was possible that I'd need it. How thoughtful and understandable, yet once again, I nodded, smiled and said let's not forget I've got some serious laundry at home so please stop saying these things.
Well, after several hours of nothingness, they felt I should get a drip bag since I hadn't eaten in FOREVER!!! Mmmm, Mmmm...nothing like saline solution in your arm to satisfy!!!
About an hour or so after this, little Mrs. Muffet and her hubby arrived in the bed next to mine. I (inwardly) hated this just because who doesn't want their privacy. The nurse said that she hasn't remembered in forever when they were so busy that they had to have a shared room. ....anyway, Mrs. Muffet (surely not real name but totally appropriate) was like 12...okay, she was recently 21. She was also there for this inversion because she was "just positive" that the baby's head was now up. Mrs. Muffet and I didn't talk at all but were separated by some thin curtain where I obviously listened to see why she was there...I'd been in the hospital forever, I was entitled to listen. ....Well, Mrs. Muffet was very dramatic. She was sure that she'd felt her baby flip and that she was definitely ready for birth now. Please input whiny voice here...surely you can picture her. She had a slight whining every 10 or so minutes and before you think I'm just not nice here, her fetal monitors showed up on our computer as well...she was fine. .....Well, jump another hour or so when the good doctors (minus my beloved, vacationing Dr. Silver) came in ready for my inversion. There were 3 doctors, Nurse Sarah, an ultrasound machine, hubby and me in a curtained off area in this room. The ultrasound once again showed that Ireland was happily playing head up, bum down. Well, the head doc, Dr. Denver, decided that one doc would push the bum up while the other doc monitored the head through ultrasound while also pushing the head...all of this in a clockwise motion. About 2 secs before the pushing began, he reminded Sarah to give me some good drugs. Whatever I took, it was some fast working stuff! Well, the extra doc must have been on standby for emergency. ...alas, one, two, three, push..........OH MY GOD!!! They were pushing deeply down and in their clockwise motion though it sort of seemed that they were just poking deeply with a slight push that was not moving. I don't even think I can fully describe this...I do know that I was trying to be kind enough to not scare Mrs. Muffet at the next bed over (see, some compassion) but having sort of lifted my hips off of the bed because it was truly that painful. They stopped and Dr. Denver told Nurse Sarah to give me more meds. I asked if I could just breathe a bit before they tried again. The docs discussed how she hadn't budged and let me know that I had such a large amount of fluid that it was actually making the inversion much more difficult because they could not get a good "grip" on her. Mikey later let me know that for as deep as their fingers were going, it seemed like a ton of fluid between where you could see (on the ultrasound) their fingers pushing and her actual head. The bum protrudes so the doctor could feel himself pushing that.........Round 2. The docs began again for several minutes when at this point I did stay somewhat quiet but this is when I began to channel my inner sailor and actually even said that I hoped I wasn't offending anyone (see, I can be polite too). Well, round 2 did not work, once again she didn't budge. They monitored her heartbeat for a minute and noticed that she really had no change at all. She was just snug as a bug. The 2 docs doing the actual inversion traded places and asked if I'd like to give it one more try because it could happen and this was best for us. Of course, we were there and had waited all day. I can't say I "wanted" to do this again but I knew we had to try. Round 3. This time the pain was blinding. Doctor Denver saw that absolutely nothing was progressing and it was time to stop. He discussed a c-section and let me know that he'd schedule the operating room for the 18th so that I could go ahead somewhat with Dr. Silver's original plans. I let him know that I was scheduled to see the midwife on the following Monday and we figured we'd check then to see if Ireland decided to go head down but he felt certain that at this point she wouldn't move.
Oh well, Ireland and I had to be monitored for the next hour to make sure nothing major happened before I could go home. Nurse Sarah brought us a sandwich and sprite. We got comfy enough to pass this hour and leave.
Meanwhile, there was whispering going on at Mrs. Muffet's side of the room and a few docs started coming and going on her side. I'll just say at this point that Mrs. Muffet really wanted to be pitiful and to have her baby that day. ...well, not much longer we see the docs with the ultrasound machine and Mrs. Muffet is about to have her inversion. They start the preliminary ultrasound, and sure enough, her baby is fine. The baby is happily head down. Yes, they're sure she's in pain but her contractions are not bad at all and quite normal for where she's at in her pregnancy. Give it some time Mrs. Muffet. No, they will not induce her at this time because it's not time and there is no need.....Poor Mrs. Muffett. She signed some papers and they were sent home.
We were still there. Felt groggy, bruised and hungry. Felt they must of forgotten us. Eventually, we too were sent home.
Well, today, I'm just weary and definitely bruised. My belly is not so much purple as very red and the veins are very visible where the pushing took place. My tummy actually feels tighter as if Ireland somehow magically produced more fluid. Hard to explain this and it may all be in my head as far as feeling tighter....just know the bruising part is very real. I feel I have a somewhat decent tolerance for pain and yet, this really hurts. It hurts when Ireland hits it and when I even touch it lightly.
Anywho, guess I'll be having a c-section. I know this is routine and fairly safe nowadays but I fear it just the same. Mainly, because I am ignorant to all that it entails...before, during and afterwards. I've always skipped over any reading on this because I didn't think it applied to me. I figure I'll read up on it here soon...plus, I'm wondering if this changes the clothes I'll want to pack that first week at the hospital....suggestions welcomed.

p.s. totally don't mean to offend young mothers with my account of Mrs. Muffet...I was 21 (almost 22) when I had my son.....but seriously, she was a great distraction

Flipping Ireland!!!

2009-08-04T19:01:00.003-06:00

Today was another ultrasound and truly my last appointment with Dr. Silver because he's going on vacation for the rest of this week and all of next week. Go figure with my induction date scheduled and ready to go when the good doctor gets back, Ireland decides to throw us all for a loop! Literally! This precious baby has been head down the entire pregnancy, making cute little faces and basically letting us know that the CDH will just be a little road block. Well, lo and behold, she has flipped head up with her bum covering my cervix. And because I've been so low the entire pregnancy, something about her bum being down has made it to where the ultrasound tech couldn't even check out my cervix. ....Point here, at 6:30am, I'll be back at the UofU so that some doctor (not MY doctor) can flip Ireland back to head down. Apparently, I will be given something to make me nice and relaxed while this guy and maybe some of his nurse buddies push on me and Ireland until she cooperates. Good ole' Dr. Silver says this will be "uncomfortable". I tend to hate that word because seriously, when has a doctor said uncomfortable and it just not hurt like crazy?! ...We discussed C-section but because I'd really like for Ireland to stay put until the 18th (optimum time for further lung growth) and I'd also like to recover ASAP, flipping her is the best option and he said the sooner the better. Mikey and I are pretty much thinking they want her head down asap so that she can relax and get comfortable before her debut in the next two weeks. ...Of course, I'll be monitored the entire time and Dr. Silver says this works 70% of the time. If anything were to go crazy wrong, I'd simply have a C-section.
Anywho, somehow still feel more positive than I have in awhile and somehow find her flipping around sort of funny. Feel she's just letting us know that she'll be in control (afterall, Ireland is not just a country but one named from the Goddess of Eyre who was goddess of sovereignty...law of the land, so to speak).
Well, please pray for no pain for me and lots of flipping gain for Ireland!

Good info worth posting

2009-08-03T19:54:00.002-06:00

I found this information about CDH through another blog. This is about the actual CDH surgery, the before and after. This information was found on the American Pediatric Surgical Association Website (http://www.eapsa.org/parents/resources/diaphramaticHernia.cfm) and thought it explained what would be going on without too much technical jargon. I'm not posting this to scare anyone. I just hope it'll sort of explain why I worry and maybe help some realize why I can be so excited and scared and nervous at the same time!! Every single baby with CDH has this basic outlook for before and after surgery.

BeforeSurgery All newborns with CDH require surgery; however, the timing of the operation may be different for different babies. In the past, people thought that the babies needed an operation immediately, but it now looks like that is not necessary. The operation may make the lungs worse because it can put pressure on the good lung. This is usually a problem for just a short time. Before surgery, the baby will usually have a tube going into the stomach and catheters in an artery and vein. The infant will be on a mechanical ventilator and most hospitals will try to keep the amount of pressure on the lungs from the ventilator as low as possible. This is to avoid injuring the very small lungs. The amount of oxygen in the baby’s blood will be watched constantly, usually with a device (pulse oximeter) on the hand or foot. The baby may need medicines to keep the blood pressure normal. In some hospitals, the baby may have a different ventilator that works very fast to breathe for the infant (a high frequency ventilator). If the baby does not keep the blood oxygen level high enough with these devices, heart lung bypass (ECMO) may be used for several days to weeks. This can only be done in very specialized centers and the infant may be transferred to a center that does ECMO. The baby will usually have surgery after the situation is stable. It may be days or weeks before an operation is done. If the baby is on ECMO, the infant may have the surgery while on the ECMO machine. The operation may make the lungs worse initially. This is because the intestines are put back into the abdomen and cause pressure on the lungs from below.

After Surgery After the operation, the baby will still be on a mechanical ventilator. Depending on how big the hole in the diaphragm is, the baby may need to be on a ventilator for days or weeks. The baby will be started on feedings as soon as the intestines start working, but this may take some time. Also, babies with CDH usually have some form of reflux of stomach contents into the esophagus (GERD) and this may make the feeding more difficult.Infants with CDH are usually in the hospital for weeks to a few months after the diaphragm is fixed. This mostly depends on how sick the baby is and how small the lungs are. After the baby goes home, they will be followed closely to make sure the hernia doesn’t recur. This can happen quite often, especially in babies with a patch repair of the diaphragm. This is because the baby will be growing, but the patch can’t, so the patch may slowly pull away.

Excitement, understanding, and the love of my blog

2009-08-02T09:07:00.005-06:00

I've been asked about a gazillion times if I'm getting excited. For the record, I can not wait to see what my daughter looks like. I can not wait to hear what she sounds like and I can not wait to hold her in my arms. And for the record, I'm scared out of my mind. I'm hoping that I'll be able to get a memorable look of her before she is wheeled off to the NICU. I am not really certain when I'll hear her for the first time since I understand that they prefer her not to make a peep but to be immediately hooked up to a ventilator. As for holding her, I hear that can be a week to three weeks. ........I am fortunate enough to have some incredibly understanding and empathetic people in my life that understand where I'm coming from. I, unfortunately, have those in my life that get a glazed look or turn silent as if something is wrong with me as well.

A few posts back, I was talking about frustrations, people in our lives, making confessions, etc. Well, someone that must be a kindred spirit, was talking about how she really distanced herself from others. Actually, a few that left comments seemed to be on the same page. ...Well, I feel that particular "distancing" instinct, increasingly, as the time for Ireland to enter this world nears. I talk on the phone less, have days where I don't care so much about facebook, decline offers for bbqs and the like, and even have been distancing myself from family (fairly easy when they're pretty far away). Sadly, I have a few people that I haven't exactly black-listed but at the same time, I just don't want to talk to them because they either say all the wrong things or they misunderstand or misinterpret me so much that I prefer to keep them at a major distance.

I feel that alot of people think I'm terribly negative right now. Honestly, I'm not. You figure a decent blog post takes anywhere from 10 minutes to a little less than an hour (if I'm really on a role). My emotions go from high to low and back again all day and (lately) all night long. When I sit down to write, it's a time of sorting through my emotions and such. I usually am alone except for any pets that happen to laze around me. The computer room stays fairly dark and quiet, I have a window if I choose to want light or fresh air, my bedroom is across the hall, there is a bathroom next door (where I'm often going to and from during any posting), and next to that is Ireland's room. ...I'm fortunate to have this room and I'm fortunate that my family sees that this is important alone time for me. I've never been a meditation type, I'm not really into exercise right now and well, this is my time. It's my blog and it's become a lifeline for me. It's my diary and it's where I turn to say anything and not feel heavy judgement. It is not quite my religion but it is bringing me closer to my God, whom at times, I've not felt as close to in some time. .....I just wanted to throw out there to the world at large that I'm thankful to be here, right now, in this age and time. I have needed the understanding of those that I've encountered through this technology. I believe others have needed me and the countless others that have supported them. I thank everyone that leaves comments and those that I can simply feel are praying for me and wishing us the best. I thank those that have left their blogs for me to read at random.
I've become a blog "stalker" as I near the end of my pregnancy and the beginning of this CDH journey. I am tired and don't move so much now due to 10 minutes of working equals about a 2hour napping excursion (slight exaggeration but not too far off the true mark). ...anywho, I've started that thing again where you go to all of the other CDH blogs and after reading the most recent post, you go back a few months, read what they had going on and compare notes. Am I feeling this way too, what was their final outcome? Am I going through this physically? Is my baby doing this too? Did he just say that's what he learned or am I interpreting this wrong? Have I taken what I'm supposed to from this particular post and thrown it in my memory bank so I'll understand later on? Woah!, she thought the same things I'm thinking and I don't want that outcome. or Wow!, that baby is over 2 now and she is still going through this?! or better yet, Amazing!, I hope that is our story too. .....in a morning of "blog stalking", I'm likely to cry, smile at some beautiful babies, get pissed at God, feel I've learned something valuable to tuck into the memory bank, feel overjoyed for a family, get ticked that they seem so grateful while I'm just moody, and pray more than I ever have and hope each word is heard and acted upon according to the greater good (is the greater good the right terminology here?...don't know, doing my best).
Anyway, these are my random thoughts for this morning. It's my scatter-brained entry. Think I'll go sew something, brush my teeth and basically, have a completely lazy Sunday with some laundry thrown in here and there.

Ireland's daddy's turn!

2009-07-29T22:31:00.002-06:00

Well first of all I have to send out lots of love to my beautiful wife. How she can get on here and get her true heart felt feeling out to "strangers" is a great testament to all of you that follow her blog. With that said, lots of hugs and well wishes to you all that have, are having, or have had a CDH baby. As the 18th of August gets closer I am getting the nerves if you will. I of course have the hope and dreams that she will be the little fighter I'm dreaming of and come through with flying colors. I've got so much else going on with my family at the same time that sometimes I feel guilty I'm not thinking of little Ireland more. I guess I just feel like she's alright inside and that I can save up all my worrying once she is out. Just my sister in Ohio isn't doin very well and the Dr's can't seem to find anything wrong with her. My grandfather just got out of the hospital with another big scare that isn't over. He really needs a surgery but isn't strong enough they think to make it threw. I thank my lucky stars Chanda is as strong as she seems and that when my downs r here she can get me through. Tristan has been great this whole time too.. well as good as a 14 year old can be in these times..lol... Well that enough of my bs. I just really wanted to say I'm thinking about all of your babies and am sending as much extra love that I have your ways. Good night all...

"Mikey"

Emotions and Confession(s) to friendships and CDH truth

2009-07-29T07:17:00.004-06:00

Well, first off, I wanted to say that I have an official date and time from the doctor. I'll be induced on the 18th of August at 730 am. This is good. Seems like a long time from now but I'm crossing my legs (best I can) and determined to keep her in there until then!!!

Next, I had one restless night of sleep!!! I'd love to say that I'm excellent at keeping up with all of the blogs I try to follow but truth is, I'm not. I tend to see/read every one's at least once a week or two and sometimes have spurts where I'm following for days. I think this is normal. ...Well, in the CDH world, there has been so much going on with the sites that I follow pretty regularly. I've had one baby go home after dang near 4 months of NICU! Yay! Little Ruby Hope is on her way home after 3 months (and might I add a hard time on ECMO). One twin has been home waiting for her sister for over a month now and sure enough Kamryn seems to be getting the message that she needs to heal quickly. One fellow blogger that had lost her son has been doing incredible work for others who have lost their CDH babies and continues to follow numerous blogs while grieving in her own way. One friend/blogger is having a 4th child and can't help but wonder that all will be well, seeing how she has one CDH daughter that has occasional struggles still. Yet another blogger friend has been having a tough time dealing with the loss of her son and worrying that another child may not be in her future. Another blogger friend, lost her daughter and has been dealing with decisions they made during their long stay in a far from home NICU, as well as the obvious grief that comes with loss .....and yet another CDH mom/blogger friend is about to begin her journey because (last I read) her baby is about to be born with a prognosis that I hope beats all odds. This all can occasionally keep me up at night with worry.
Ya know, I don't know one of these people personally. I would not know them if I passed them on the street and yet, I swear I feel their emotions sometimes as if they're my own. I've said it before, you can't help but feel that you know these people as you follow their lives...even if it's simply through words that took possibly minutes of their day to put down. Most of the time, what you're reading is their deepest wishes, sorrows, thoughts....they're not wanting to be alone and they're the type comfortable enough to put their emotions out there in hopes to help themselves and/or help someone else. Goodness knows this is why I began to blog.
Anywho, someday soon, I hope to figure out how to update my blog and add those that I follow and maybe change the pepto pink color just for the sake of ease of reading. Also, those that read my blog may have a day with extra time to catch someone else's blog, maybe leave a note or just say a little prayer for that perfect stranger dealing with this little known condition.

Well, confession time, part of my not sleeping is because I also have been feeling guilty. I had a recent "function" that I didn't attend for totally selfish (maybe, hopefully, not totally selfish)reasons. There was truth in what was said on the day I had my husband call but there was also a bit of my just not wanting to be there. I don't know about anyone else nearing their due date and feeling excited and nervous, but their are times when I want to distance myself from others. For instance, last night, I probably spent an hour or two just talking to people on facebook because I was excited about my induction date when I came home. Then, you have this declined "function" where I just didn't want to be around people. I was simply having a day. I had run around that morning and was tired and felt emotional. I didn't want to be around people that were letting me know how their lives were just going swimmingly. There was also most likely going to be a family with their newborn daughter there, and I didn't particularly want to ooh and aah that day. I didn't want to necessarily see all of the beautiful changes done to a friend's home when I feel that I've been neglecting my own. I also didn't want to discuss my pregnancy and all that comes with our particular circumstances. In a way, I think it was good that I didn't go. I would of been miserable company and honestly, everyone was there to have a good time. And...., I like everyone that was most likely there and am certain that baby I didn't want to see was perfectly adorable. .......just right now, my emotions tend to run extremely high and extremely low and I know when it's best for me to just say I need a nap and leave the room/function of the day. I have also noticed that certain friends are better to be around than others right now. I have friends that I can look like I just got out of bed, and they will make me feel right at home. There are others in my life, though they may be a friend, are just different. I've decided that this is just how adult friendships are. When we were kids, we had sleepovers with the best of friends and knew everything about each other. As adults, our friendships are different...at least for me. I have those that I've known for years and can walk around bra less and in pj's without the least bit feelings of inadequacy (barring that any significant other is usually not right there). I have newer friends that I feel this way around even. Then there are the friends that are on different levels of ya-know-me to we're still getting-to-know each other and only on certain levels....point is, most 'functions' have varying degrees of these friends and some strangers, and sometimes, ya just need to nap versus being social. Well, that is my confession of the day.

.....Anyway, I really want to stress that this CDH is just soooo not cool. I feel that because so many of us tend to normally put on a happy face to get through our day that people forget how serious this condition is. If you look at simply the blogs I follow, there is a seriously sad percentage of tragedies to great coming-home stories...and for all of us dealing with this or having dealt with this, our doctors are/were wonderful....and yet, bottom line for all of our prenatal care, researching latest studies, knowing the percentages for our particular situations, being at the best hospitals and having the best doctors...only God and our babies determine the outcome. ...I figure this can explain my scatter-brained postings and my emotional highs and lows. I am so very excited for August 18th to get here and for me to meet Ireland..... but I'm also very nervous about the end of my pregnancy that has for the most part been smooth sailing while Ireland's been living off of my placenta, my loving care.

What a Wonderful World!/having a hippie/kum-ba-yah moment

2009-07-24T09:20:00.003-06:00

I love that song...what a wonderful world....and it haaaaas to be sung by Louis Armstrong! ....anywho, I thought about posting an apology for my rantings yesterday but once again, nope, not my style. I think there are alot of us out there wanting to scream "It's not fair!!!". Whether it is the CDH families or anyone else with their own personal battle. ...point is, my day immediately began to get better once I'd let my frustrations out. Nothing changed and honestly, a few things seemed worse. But. My favorite bad grammar...but. ...dramatic pause here to consider the beauty of this coarse word ...but, people started posting their understanding. I got an incredible email from a good samaritan. I was totally not alone. I talked to my brother for some time and he offered his advice and also let me know some of his worries. I was reminded of what I did have right now that others didn't.
Anyway, could go on and on about why I'm actually glad that I vented but let's just say, that it felt good to let it out and to let others in. I foresee many rantings and ravings on my part. It's not a good thing necessarily but it's what works for me. I wish that I could just meditate, chant, or pray and instantly feel better but I tend to get angry. I get angry and I can see people huffing and puffing that this is NOT good but before you judge, know that I almost always have a healthy outlet for this. I don't tend to hold on to it as a life line and I surely know it isn't healthy. I've had trials in my life before this and I'm sure that I'll have even more if I'm lucky enough to live a long life. .....I'm struggling to get my point across here but I just want everyone to know that we're going to be okay. My family is strong and I feel strong within myself. Strength does not pay the bills but it makes you stand up, assess the situation and go from there. ........and the anger part...soooooooo not good. But...if you let that anger out in a healthy way, let it go and let God or whoever or whatever take that for you...that's a good thing and for most people and definitely me, it's freeing. The affects don't always last forever but in that moment, I'm much lighter. And I believe that the more I let it go, the better off I am.
That's it for now. Please do not see me as Will Farrell having another "Deep Thought" from SNL. Then again, if it makes you smile, go with it. ....thanks to everyone that made yesterday a better day!

Warning: serious whining here

2009-07-23T09:42:00.003-06:00

Today is a day for some serious whining. I'm strong. I smile. There are worse out there than me, I know. But today, I'd like to whine.
We are some seriously good people deep down and man, when it rains it freaking pours. I get angry sometimes because we don't deserve this. It's hot as hell outside and the swamp cooler only does so much. Our garden did not produce one thing this year (even though the dead looking cherry tomato plant on the porch does not look like the picture that came with it, I have got 3 small yet tasty tomatoes.). Mikey's grandpa is in the hospital having surgery while at the same time he has pneumonia. The man is in his 80's and I've loved him since the day I met him and hope he comes through. Tristan managed to rack up his phone bill and honestly I think it's my fault (this time). I allowed him on 3 separate occasions to pick 3 games for his phone. Come to find out, the games charge time online. Ca Ching...no, we don't have the money for this right now! We have been getting bills from the U of U that we were told a few weeks ago were handled, well now, they are owed as coinsurance and deductible...I guess I should be grateful because the medical bills shouldn't go over $5000 according to the deductible for this year. Should be grateful for this, I'm sure, but the money tree is just as good as my damn garden!! (excuse explicit language but the word 'dang' just didn't feel the same) I've been on the phone this morning with social workers trying to figure out some logistics of what will happen once Ireland is born here in the middle of next month and though they're nice, they can't offer too much. The Ronald McDonald house here has a 35 mile radius rule on who stays and wouldn't you know that mapquest says 34.69miles and google maps says 35.1 miles. Of course, Ronald McDonald goes by mapquest and besides, it's a bad summer and they're packed. How awful, really. Of course, regardless of what the mileage says, our trip to the hospital normally takes atleast an hour to get there. The hotel discounts that are nearby range from $59 to $74 a night. Good prices if we'd been saving for a week's vacation. Not so good for 2 to 4 months of off and on stays because of our precious NICU baby. ....oh and my son's finger that was broken right before school let out a few months ago, insurance covered nothing! .....there is, believe it or not, much more I could gripe about...sister in law's health, my brother's job woes, another older family member passing last week, my yard looking nowhere near like I'd normally keep it and getting looks from the good mormon neighbors probably because of the lack of anything beyond the basic cutting of grass that may or may not have needed to be done just a tad sooner, the thoughtful comment of a friend letting me know how huge I look, or the family member from afar letting me know that I should just pretend that Ireland is still in my "tummy" during her NICU stay.....oh, on and on. Yes, I am seriously whining and venting. And ya know, I need to. I went off on Tristan last night over that phone bill and honestly, this time, it was my fault. He's a good kid and tends to confess when he's screwed up. It may take him a bit, but rarely does he not admit things in the end. .....I apologized for having a complete fit (and I mean total madness going on), he apologized for yelling back (a big no, no in this house).

I woke up this morning prepared to take care of business and though I have been productive from this computer and my phone, it's just not been going my way and it sucks. Flat out, sucks.
...I always keep in the back of my mind that this too shall pass and yes, I know it will. It felt good to vent and for now, I just ask that everyone pray for everyone else. Life can be hard and overwhelming at times. This is all my reality right now but Mikey will come home, we'll have a somewhat decent meal, do what needs to be done and then our little family will chill out in some way and either laugh at something on t.v., one of our pets or my dancing belly. Tomorrow will come and who knows, miracles happen every single second...it will be Friday after all.

Uneventful times

2009-07-20T05:48:00.002-06:00

I just thought I'd post a bit of something even though I have no news. I'm huge and burning up in this Utah, July weather. I'm now counting down the 3 to 4 weeks that I have left. I'm hoping that at my dr's appointment tomorrow to have an induction date but it'll not be a huge deal if we wait another week or two to settle this. As much as I'd love to have Ireland now, I know it's best to wait as far out as we can. The doctor had already said that he'd like to induce me no more than a week before her due date if possible. Honestly, I think this is totally possible. My pregnancy itself has been fairly good. I've had minor complaints and truth be known, now is the only time I feel that I have major complaints. It is terribly hot lately and if I walk more than an hour, I feel miserable. Grocery shopping yesterday totally wiped me out. Fortunately, a good friend called us yesterday afternoon and we ended up going to her pool to battle the heat. ....I highly recommend the swimming because you're instantly light as a feather AND the water just feels great!
Anywho, I'm going to check on all my bloggin' babies. Have a good week.

For Candice Beal

2009-07-12T18:46:00.001-06:00

Candice...I could really use your email if you don't mind. I can't find it anywhere so I'm just posting again in hopes that you see this. I was kicked off of your blog again. I am not computer saavy so have no idea what to tell you to fix this problem. ....bottom line though, we're thinking of you and your family.

Baby Jackson Beal

2009-07-12T13:02:00.002-06:00

I had to post this because for some reason I can get on everyone's blog this morning but I keep getting kicked off of the Beal's site and just am hoping that they know I'm thinking of them. I read on Kamryn's site that things are not looking so hot for baby Jackson and I want them to know that they've got some deep prayers headed their way and that I ask everyone I know to think of them. ....If anyone would know the cause of why I'm continuing to get kicked off of their site, please let me know.

Yesterday's Shower

2009-07-12T09:33:00.012-06:00

I really had an amazing shower. Most of my family and friends are in VA, PA, and AZ. They're scattered in OH and WA and all over. It's summertime, so many of the friends I have here in UT just happen to be on vacation. And even then, my friend Jeannie, managed to throw me one hell of a shower. Friends even managed to take a few pics that were pretty dang decent of myself and for that alone, they carry an extra special place in my heart!!! ...Also, my husband's friends and old co-workers managed to bring me to tears because they sent a card and had collected some money (alot of money!!) to help us out with Ireland's expenses. How do I even begin to thank everyone. Of course, there is the obligatory thank you card but really, it somehow doesn't seem enough. ...and newest and great friend, Marnee, who had to work and miss the shower, dropped on by to give me a gift. Crazy girl! She lives in Brigham City (too far away) and went out of her way to do this for me. I really feel blessed for all those in my life. ...I even had family send cards that were not to be opened until the shower...awesome because I really did think of all of those that I wish could have been there.

Is this not the cutest cake ever??? I need to figure out how to preserve the little baby in the flower...we put it in the fridge for now and need to clean some icing off the bottom before somehow preserving it forever. any suggestions are welcome and needed!!!

I am actually printing this pic out...I didn't think it was too bad. Plus I love my "Mother-to-be" crown. Apparently, some didn't notice what it said.....did they think I just decided to wear one of the many tiaras that I had lying around? :) lol

This is my BFF, Jeannie (even if Marnee insists that she's her BFF). She threw me this awesome shower and I love her and all of her family. She manages to give me a family here in UT and honestly, everyone needs their own personal Jeannie.

This is my Mikey. I love him dearly and am so excited to have Ireland with him!!!

These were my shower peeps. They're all beautiful and managed to make me feel pretty dang special and really gave us a nice start for what Ireland needs.

All in all, think we all had a pretty good time. We had some fun games (one in particular reminded me to pick up a book of nursery rhymes because my knowledge was seriously lacking here!!), some great food, and I got a cool little booklet with advice from everyone.

Wanted to add thanks to all the daddy's that kept the kids for an afternoon. I know that my hubby and Jeannie's man went to Hooter's with our boys and apparently they're stocked with a lifetime of jokes for each of our 14 year olds. Story goes that when Mikey asked to get a picture of the boys with the waitress, they were pretty shy about the whole thing...Tristan apparently smiled and blushed with hands in pockets and Gavin (Jeannie's boy) tried to stand a foot away from the poor girl....lol, I love that these man/child boys of ours aren't too girl crazy yet!!! ....they love to talk the talk but aren't quite ready to walk.

T's home...appt. from Tuesday

2009-07-09T05:32:00.003-06:00

Well, Tristan is home!!! I can not believe that this man/child is my son. At 14, he is just so much taller than me and is just plain old bigger than me. He was only gone a month and I swear he grew. His dad actually had to get him new shoes. Crazy!!
....I did not get to see my Dr. Silver this past appointment. Have no idea why, but he's human and that's okay. The midwife we see each week, Gretchen, is perfectly nice and answered my questions. I did get another ultrasound as well and all I can say is that it is sooooooo hard to believe that something is wrong. Our little Ireland was actually rubbing her belly and yawning. It was the cutest thing I've ever seen on an ultrasound. For as big as she is now, 5.1 lbs at 34 weeks, it's amazing how clear the ultrasound was this time. Yes, the stomach is still up in the chest, her heart is pushed towards the right and only God knows what else is going on, but just to see her on that screen....well, she is becoming this cute and chubby baby. She moved around quite a bit but we still managed very clear images. She is head down but I'm being told that I shouldn't worry that this means she's ready to come (this is what keeps me up now...fear of waaaay too early birth). I made sure to ask Gretchen what on earth we do if Ireland decides to break down the door and come before we're ready and she said Ireland would need to be life flighted immediately......so, this is telling me to be vigilant and make sure Ireland does not do this!!!! She is just so incredibly low and actually kicks my hips and cervix almost as much as my ribs and such. Scary thought to have her early. The plan is weekly visits and planned induction.
Anywho, I'm finally having my shower this Saturday. I'm pretty excited. I'm also sad because 3 of my friends are out of state during this time....this is problem with having local friends that are also not from here and choose military careers. And with family and friends in VA, PA, WA, and AZ....well, they'll all be so missed. We wanted to send invitations to EVERYONE but honestly, it was just too expensive. I sent them to our parents and grandparents...and I've actually got a few cards that I'm not supposed to open until the actual shower. And Ireland has already been spoiled beyond belief by Aunts and other family and friends. I put Aunts in capitals because seriously!!!...my girl will be one stylish baby!
.....well, will do my best to keep up and also to post some shower pics once I have those. Also, Mikey and I want to take a few nice family/preggo pics, so I'll post those as well.

New babies

2009-06-28T20:14:00.003-06:00

I just wanted to add in here that babies Brooke and Kamryn were born recently and that they could use some prayers. Their blog has been a joy to read and they have a wealth of information about CDH on the blog. The family is going through so much and they continue to update nearly daily which can't be easy. They have an older daughter, one baby is now home and another in the NICU. The entire family could use the prayers and support. Their blog is listed down at the right where I believe I just have it labeled as blogs that I follow or babies that I follow...something like that. ....following any of these blogs (and I really need to add more blogs) are invaluable for information and simply connecting to others

Due Date: Aug 23rd but most likely around Aug 16

2009-06-28T19:44:00.003-06:00

I've been asked my due date a few times and have neglected to answer....basically, the doctor said I'd be induced about one week before my actual due date just so that we can insure that I don't go into labor anywhere but at the U of U. I wanted to also let you know that my doctor doesn't really want me to have a C-section. Apparently having a vaginal delivery facilitates the lungs by squeezing out some fluid as Ireland comes through the "birthing canal".

Well, I've been having a very uneventful week. I've been incredibly tired and seem to nap alot. I've neglected my blog and facebook. Sorry, my loving peeps! ....anyway, we have family coming over for a long weekend and naptime has to have more restricted hours this week. I need to clean up, change sheets, make room for the kids in the sewing room, make sure there is more food in the house, maybe stock up on stuff like toilet paper, and prepare some things for a bbq on the 4th of July. Honestly, so excited because part of me has been bored....also, missing Tristan (who will be home on the 8th, YAY!!)

Well, wanting to check out some blogs that I follow and hope everyone had a good weekend!!

Uneventful appt./better pic

2009-06-24T05:55:00.003-06:00

I wanted to post a decent picture of myself that hopefully better represents myself than the nasty "I dare ya" look to the previous pics. Plus, I did get one hurtful comment and truth is, I'm

not really that bad. Alot of belly and bloating but honestly, my weight hasn't gone all that crazy. I actually lost some last appointment...and my nurse at the U is now instructed that from now on I will always give my urine sample BEFORE I am weighed. :)

Anywho, I had a very uneventful appointment at the U of U yesterday. Besides my weight having gone down nearly 5 lbs (no diet changes, just happened), there was nothing great. I got to tour the small maternity ward and the room that will most likely be where I'm scheduled. The room was pretty dang nice except for the huge window that has access to the NICU. Apparently, this was the window that they'll pass my Ireland through the minute she is born. Honestly, that was a bit upsetting. I like to live in my Utopian world until I have to face my realities. Anyway, this window leads to the the U of U NICU...Ireland will be there just until she's stabilized enough to be moved to the Primary Children's NICU, which is basically a hop down the elevator, across a bridge to the next building. I'll apparently stay in the room for just a few hours until I can be moved to a regular recovery room.

Well, sad thing happened. As we were leaving the appointment, wouldn't you know the chapel is right there next to the bathroom that I use every time we leave before hitting the elevators. I'm standing there waiting for the person before me and out comes a family in tears. I got a little shook up and went to the bathroom. When I came out, Mikey said that apparently this family had lost a baby to preterm labor. How awful. They probably didn't want to see a huge pregnant lady when they were exiting that chapel and goodness knows, I can get pretty upset about the loss of a baby (who wouldn't?). Anyway, I just felt tearful the entire ride home. I told Mikey that I really thought the chapel should be moved. Why would it be placed on a floor next to a maternity ward that deals with so much already?! .....granted, where else would the chapel go. This is a huge hospital and very well known cancer treatment facility....doubt anyone wants to see it next to their suffering loved one.

Anywho, today is a new day. Plan on making some stuff....researching how to get rid of some back pain. That's it for now.

Just another post

2009-06-19T05:14:00.002-06:00

I couldn't sleep a wink last night. Have no idea what that was about!! I've been up forever and would imagine that it's good I've been pretty productive this week because I see this morning being somewhat lazy.
I wanted to say thanks to everyone with comments about my two preggo pics. Mikey and I sort of laughed last night because they are far from good looking pics and normally I wouldn't post them but I felt that he was daring me and for that, I had to post them. Then again, I'm far from skinny preggo right now and all I can do is post myself in a better outfit and position next time which I'll do sometime this weekend. I do not want Ireland to believe that I completely let myself go even though that is exactly what I look like draped over that chair!
Anywho, will not bash myself anymore because I really don't mind my present state. I'm pregnant and proud of it. It took me a long time to get this way!!!

....well, I've sewn alot this week. I have to say that I think my beginner status is going away. I'm getting much better with all the practice I've had lately. I've been sewing U of U material into a few small things for my shower. Mikey thinks this is crazy but I like giving things to people and told him that I figured when they use the stuff, maybe they'll think of us while we're dealing with all of the CDH junk. ...there are sooooo many people out there that contribute tons of time and more towards CDH awareness and I don't feel that I do much at all. It can almost make you feel selfish knowing that there are people that have dedicated their lives to this cause and you simply are telling your story through a blog. Honestly, people have made awareness of this condition their career. ....a while back someone mentioned me making my little NICU masks for some organization or something and I remember thinking that I just didn't want to commit myself fully just like that... is this totally selfish? I have thought of things like making some extra masks for the NICU at Primary Children's and even doing a few more things but I really don't want to commit myself to something major when part of me feels that I haven't a clue on what we're about to face.

Well, too tired and yet can't sleep. So, think I'll go turn on the boob-tube and lay down on the couch. It's Friday and I miss Tristan. It's supposed to rain yet again this weekend and I'm just in a funk already this morning. .....I hope everyone enjoys their weekend. Once I get some rest today, I'm sure I'll enjoy mine.

Room in progress and some brave pics

2009-06-18T17:56:00.003-06:00

I took a leap of faith here. Showing the slow but steady progress in Ireland's room. Then, shocking the world with just taken photos by master photographer, Mikey. I feel assured that he loves me even though I can't possibly be as big as these pics make me look. Surely the camera added 30lbs!!!

This is the border that we both love and cute little light switch.

Needing to get some curtains, paint that wicker basket, and someday possibly a crib in here...along with cleaning that old chair up a bit!

Just thrown some things on the shelf for now...no real orginization there...but love what Mikey did to my old dresser...when Ireland is older, it has a huge mirror that attaches to it. He also changed out the knobs to little lady bug ones that match the border pretty well.

BRAVE photo #1....showing double chin with the bare, white, huge belly!!!...not the most attractive pic I've ever taken....but pretty honest representation of present status.

p.s. I do have eyeballs somewhere in those slits.

Brave photo #2....not as bad as #1 but shows my lack of any fashion at the moment. Sadly, could have fit 2 of me in this chair pre-preggo. Everyone assures me a little breast feeding will get me back in shape. We'll see.

Well, I've shown the world the tragic demise of my body but will admit that I wouldn't change it for the world right now. If anything, will demand reshoot of pics with me standing up and in a better bra! ...Hope to have made someone's day. Surely you either smiled or felt better about yourself. Either reaction is fine with me.

Dreams and Worries

2009-06-16T05:20:00.005-06:00

Well, today I should have shower invites in the mail. Mikey and I did most of the work since Jeannie (friend having shower) is insisting on everything else. None of us know the etiquette since we're all away from family and basically all of our shower giving experience is a big zero. Oh well, all of us trying to do this thing have at least been present at showers. So, we'll see how it goes. Knowing Jeannie, the food will be too much and really good.
Anyway, sorry I haven't posted in a bit. I was still processing alot of last week's doctor appointment. I've been doing fine but have been doing alot of dreaming and thinking about things to come. ....Last night, I asked Mikey if something was wrong with me since I don't cry alot right now. I'm sad and worried but my tears are sort of minimum. ....For instance, Saturday morning we were outside doing some yard work and our neighbor came over asking how I was and if I could explain what was going on a bit better. Well, next thing I know she's practically balling and I'm reassuring her. She is a very sweet woman and assured me that she was going through menopause and apologized. She didn't need to do this but I found myself explaining why I don't cry about this anymore. Why is that? Last night I did tear up during some show that had a small cameo of a sick newborn..other than that, I haven't really shown a heck of alot of emotion. ...I will say that I dream alot lately. I dream of good and bad things to come and it's all in a very "this could be real" way. ....Weird. Part of me explains this as my coping. I watch my belly dance constantly and at times, this all seems sort of unreal. Other times, not very often, I don't feel anything and worry like crazy.

Well, I worked a bit last week and yesterday and it seems to be coming to an end. I nap quite a bit now and am not comfortable driving an hour from home. I don't worry about bed rest so much since I'll most likely not be going around too much now. I have been on unemployment for several months now but have usually had some hours of work each week. This is probably a good thing because with income, it reduced my benefit and makes me eligible a bit longer.

Also, I have been stressing over silly things lately and really need to "chill out". There is too much to post here but since I throw in my sewing hobby, I'll use that as my example. ...I feel I have roughly at least 8 more weeks until Ireland is in the world and a little less than 3 weeks when my sibling in-laws are coming to visit. Well, I feel overwhelmed with what projects I want to get done before either of these things happen and in the end find myself having finished nothing. I have to make a list and prioritize or nothing will be done. I know that Ireland will not be coming home with me instantly but I feel that her room should totally be done because for one, we're not exactly going to be working on her room while she's at the NICU and she may be that miracle that is home sooner than later. As for my in-laws, well, I of course want the house to look nice and there are several projects that I'd like done before we have guests for a long weekend.....today, my only real thing I have to get done is take invites to the post office along with some work papers that need to be sent out...I actually woke up at 4am counting how many hours I had until the post office opened because I knew I still needed to address some envelopes, get them sealed and organize the paperwork that I need to send to my office. I also wanted to run by the book store. Now is this going to take 5 hours??? Absolutely not. But then my head starts running through all the projects I want to get done, the chores that must get done and what should we have for dinner and all of a sudden, you'd think I was running a mansion. I start worrying about how bad the front of our porch looks because I felt major landscaping could take a vacation this year. I worry about weeds in the rocks because they seem uncontrollable all of a sudden (granted it's been raining non-stop here). I worry about my dog shedding hair entirely too much this summer and the cat box possibly making our house smell (better not, I am very aware of smells!!!). I worry if I should get outside a bit more in shorts and get some color and then next thing I'm worrying about looking silly in said shorts with stick legs and huge round belly. I worry if I'll have time to nap if I'm trying to get all of this other stuff done. .......on and on. Some women are nesting and I'm just obsessing with worry. Oh well, better get off of here and actually make a to-do list. I'm convinced that I'll get all of this stuff done as long as I make my list each day. ...gotta go. Prayers out to my family, my peeps and all my CDH family and babies (future and present)!!!

Important health lesson

2009-06-12T13:29:00.003-06:00

Well, I’ve had some time to process yesterday’s appointment with Dr. Scaife, pediatric surgeon. As those who read the earlier post will know, I was terribly nervous about this. For good cause apparently. The entire appointment was a health lesson and very much like taking a band-aid off very quickly.
I went in that appointment feeling pretty dang knowledgeable about what I believed was going to be the basic scenario. Of course, on the ride to Primary Children’s, I wrote down a page of questions but truly felt I had a grasp of the basic anatomy for Ireland’s condition. WRONG. WRONG. WRONG. Now, I’m not going to fuss at my fellow bloggers of this condition or my beloved CHERUBS, but there was quite a bit that I learned and I was totally thrown off. There is a lot of talk about stabilizing the lungs and immediate ventilation once our CDH babies are born. Well, not so much on the ins and outs of why. Obviously I knew that she’d have (hopefully) one healthy lung and one that would need time and healing. I’ve learned all about the actual herniated condition of her diaphragm and the fact of problems with the stomach and bowel being in the chest area….well, not so much about how I had this image of a very small hole when in actuality it is probably more like ¼ to ½ of her diaphragm is missing.
Anywho, I’m going to do my best to give a bit of a health lesson. Our surgeon was very good on explaining this not just once with a drawn picture and much pointing but a second time because I apparently needed him to act as if our blood were different colored cars to understand the path a little better. ….here I go. Dr. Chanda at your service. First off, think of the path of the blood going from your heart to lungs for oxygen, some filtering of carbon dioxide and acids and back down to your heart and then sent throughout your body. For me to apparently get this basic concept, we used the idea of cars going up blue, getting serviced beautifully and coming back red. This is what we all need…nice red cars. Well, for a fetus, the blood doesn’t go to the lungs to get precious oxygen but to the placenta. There are extra paths (or shunts) that exist in a fetus’s heart to facilitate the sole purpose of blood to go from the heart to the placenta and back again for this oxygen. These extra paths/shunts tend to break themselves down and just sort of go away within a day or so of birth due to no more placenta. Obviously once the fetus is born, the cord is cut, the placenta is birthed and thrown out. The fetus becomes a baby human and is ready to breathe. Well, sounds great, maybe we’ll just have one lung and need help breathing with the other. This is what I (in my infinite wisdom) had thought. Hmm, so wrong. Our little newborn CDH babies will immediately be born with serious high blood pressure. Once my baby Ireland takes her first breath, her little heart will realize that the lungs are not quite doing what she needs, so the heart will do what it’s naturally been doing for the past nine months and seek out those little extra paths/shunts and go look for the placenta. Problem. Big problem. The shunts are still there and haven’t magically disappeared so the blood will go there but obviously isn’t going to find that precious oxygen supply from the placenta. She’ll also be breathing in our air and will have carbon dioxide and acid trying to figure out what to do. Basically, we have a big damn mess going on! …Thus, the need for ventilation for oxygen, medications to sedate and relax Ireland, ways to stimulate/relax the stressed out heart and a way to clean out this carbon dioxide and acid. What is natural and so taken for granted by all, will end up a major issue for our little CDH babies.

So, when our babies are born, we’re NOT so worried about the size of the diaphragmatic hole or what is or isn’t inside the chest cavity. We’re worried about calming down high blood pressure enough to be able to handle a major surgery. Within 24 to 48 hours, we’ll know if ventilation is enough or if we have to go to ECMO (big bad bypass machine). Remember my idiocy of having to relate blood to red and blue cars? Well, our babies are in serious need of red cars. Any perfectly healthy newborn will have 100% red cars all of the time. We in the CDH world will be seeking them out and monitoring them like crazy. Our babies will have a hell of a time settling into this new world outside of the womb. You could have the greatest test results and percentages throughout your pregnancy, bottom line, we need little fighters that are thinking of oxygenated red cars that are devoid of too much carbon dioxide and nasty acids. We want them on that ventilator and all those other tubes doing the best they can with whatever healthy lung tissue they’ve got. We need them calm and sedated. We’ll worry about ECMO only if the red cars are ridiculously low and the lungs just can’t do the work at that time. We’ll worry about the surgery when she can handle it.

Well, hope that wasn’t too confusing or even too elementary for those that have walked before me or those learning just like me. I’m sure there are way better technical ways to explain all of this but this is what worked for me. I didn’t necessarily feel that I went back to square one but I was shook up a bit. Also, maybe others have explained this and I was just too dense to get it. I don’t know really. I was in a sort of Utopian mind set that all was going to fair well and with haste. Truth is we’re looking at a typical situation of anywhere from 2 to 4 months at the NICU. The doctor did say we could have an exceptional case of just one month but he wanted to be realistic. I honestly appreciate that. And another thing that I thought was that I’d steadily sit at my precious baby’s side day and night on constant vigil. It was discussed that I can feel free to do this but that they recommend going home and getting on a schedule. This was discussed a little more than just a sentence thrown in the wind and after some basic thoughts on what is best for our situation, I understand the logic of this. Plus, I have a husband and son that will need me during this time as well. And, I’m sure that I’ll need them. We’re trying to figure out how to afford the drive back and forth and are considering monthly passes (about $170 apiece) on what is known as the ‘UTA’ system out here. Basically, I take a sort of train to Salt Lake City and then transfer to a track system (like 3 connected trolleys) that takes you straight to the doors of Primary Children’s Hospital. We’ve decided that we’ll take this route our next few trips to the U of U to get me more comfortable with this. We’re also trying to decide if I should try to get a hotel for the first week or two that will lead up to Ireland’s surgery. We figure these will be the hardest weeks. We really don’t know and welcome advice from those that have walked before us here.

Anyway, we ended up touring the NICU. I was teary through most of that and was in a sort of fog and still processing what Dr. Scaife had said during our surgical consultation. It seemed nice, aesthetic for sure, and just a wee bit sad. The charge nurse spoke rapidly and was giving us a ton of facts that I’m certain I’ll recall later on. She was awfully nice and I do remember her saying that Ireland will be assigned two nurses that will work 12 hour shifts and be at her side constantly until this is deemed not necessary.

Well, I’m going to stop posting for now. I felt my little health lesson was important and hope that others will spread this bit of news to those of us still awaiting the arrival of our CDH babies. And for those just supporting us, this is what we know now. It’s a lot to think about.

Preggo women!!!

2009-06-11T08:49:00.002-06:00

This is my first post as Ireland's daddy. I just thought that hell, I've read quite a few blog's and never seem to get the guys point of view so I figured I'd throw in a quick how u doin. Let me first say I don't feel left out because of this, just wanted to let my fellow daddy's who's little one has CDH that they are not alone. I've come to terms with what may or may not happen to my little angel. Not to say that when that moment comes that I won't be freakin out! It's like night and day from the first time we heard what Ireland had and now. I've gone from this is my nightmare to well we will fight and it will all be good and then back and forth. We tried for 5 years to have a little one and all but gave up when we got the news we (and I like to say we!!) got preggo..lol.. Chanda's a great mom. Tristan is older now but seems really excited about Ireland. I know I will be counting on him to help out alot while mom and Ireland are still in the hospital. I hope to keep life somewhat normal for him although I know that its really not going to happen. In short I guess, just want the daddy's to know its alright to let a tear out, a sob, give your wife a little hell while she's preg... I know I get in as many as I can during the day. Yes little Ireland has a real issue but while she's in momma's tummy she is just fine. Have fun with the joy of your wife getting a little crankie, moody, maybe just maybe a little bigger...lol.. Cause I just love all of it when I stop to think..and I'm sure Chanda would say I don't think much before I talk. Your not alone guys.. far from it.

Best of luck to all the other family's still fighting on for their little ones that have already been born. To parents that are still expecting, its a scary thing but pray and think positive. And finally to the family's of little ones lost and still follow our journey's. Bless you and my heart pours out to you and may you find peace and comfort threw these difficult times..

Irelands' Daddy.....

P.S. I can't spell for nothing so please don't hold that against me!!

note for last post

2009-06-11T08:01:00.002-06:00

On hindsight, felt the need to defend my last few comments or rather, defend my mom. Yes, she said something that hurt but want to add that my mother is as bad as me for not censoring herself at times. I love this woman dearly and also am infuriated at a drop of a dime by her. This is our relationship and that is the truth. One day, I may expand on this but I want it noted that she is one of the better women I know. She is generous and has a good heart...the best heart....she can simply be hard on me. Plus, she loves me. It is not neccessarily how I would like to be loved sometimes, but she is present and very much my mother. And, I love her. Enough said. Doubt much of my side of the family reads this (due to their busy and country lifestyle) but felt the need to throw this in here because it wasn't neccessarily right for me to mouth off as I did. In lieu of this somewhat lame apology of sorts, I choose not to censor myself too much on this blog because I vowed to be honest with my feelings and actions during this time. I still believe that there may be someone that reads this and feels connected rather than alone and for that, I'll continue on with I've started here.

Nervous

2009-06-11T06:04:00.002-06:00

I am a bit nervous about the appointment with the pediatric surgeon this morning. First off, we have to arrive fairly early because we're not certain where we're going. Second, I've been enjoying my rose colored scenario and don't particularly want to see my reality.
I am not one bit prepared for meeting this doctor. I had all of these questions in my head and every intention of writing them out and I just have not done this. I figure I'll do this on the way to Primary Children's.
Last night or rather, this morning, I woke early thinking of some of the mothers that didn't bring home their babies. Morbid, I know. But I thought how they still check on the progress of those of us waiting to have our babies and I wonder how they do that. I suppose this may mean I'm selfish because part of me thinks that I'd prefer to shut off the computer for a good year or two after something like that. ...also, I've been having some pretty weird dreams anyway. I dreamt the other night that we were at the Grand Canyon and I kept falling. I'd go stand for a picture, the wind would blow, and my bloated body would just topple. Weird.
Anywho, very nervous about today. Finally got out of bed, fed the cats and commenced to get in the car to go get Beto's (it's a local place with incredible breakfast burritos). Well, as I'm driving, I realize that at nearly 5:30 in the morning, without a lick of a bra or even decent clothes beyond a flimsy night gown, maybe this isn't the brightest idea. So, knowing that only women are ever there, I run through the McD's drive thru for a mocha and hotcakes. Call me crazy, I am. Plus, Mikey will probably have woken up just enough to have heard the car leave and come home, wake up and believe I brought him home something yummy for breakfast. Sorry.
I want to throw in here that I'm missing Tristan. He's older now and so far, we've had some sort of communication daily but it's not alot and I just miss him.
Anyway, totally scatter brained this morning if you have not noticed already. I apologize for this. I'm just sort of shocked about my feelings for today. I'd so been looking forward to this appointment and well, it just seems that I'd rather go see my Dr. Silver that lets me know that I'm progressing well and so is Ireland. This doctor that I'll see today will let me know all of the probably realities of our situation from baby is born to she can finally come home. He'll let me know what they'll do when they take her from me the minute she is born, what tubes will be for what, why they're there, what my role will be in all of this, why it may take a while for actual repair surgery, how long all of this may take, we'll discuss what may happen long term...on and on. See? I haven't really gone here too often and don't really relish the thought of going there today. I've read the news, the latest sites, the personal blogs and know many of the basics of what to expect but this is MY baby and it will not just be a story but a part of my life. I'll actually be living through this nightmare of worry and beyond everyone's niceties, this will all suck very much. ...I wonder how Mikey and Tristan and I will all get through this. I suddenly am worried about the basic things like where will we all sleep?, will we come home?, we'll have to come home so Tristan can go to school, we'll have to eat at some point, do I really want to do the whole pump my breasts constantly thing?, ...basics. How the hell do we figure out the basic logistics of all of this? ....Is Ireland going to suffer like crazy? When can I touch her and talk to her? Is she really so bad that she'll have to be fed through damned tubes at first?? ...I'm getting a little teary and I really have not done this in quite awhile. Part of me is back to feeling anger because the biggest question for me is when can I hold my baby. Who the hell has to ask this question? ...excuse the sailor talk but I tend to get turrets when I'm upset. I can usually hold it in but this is who I am..no holding back. Which makes me think of my mom's comment my last day of seeing her. We were discussing her and my daddy visiting once Ireland is home and she made the comment that she didn't want me going on and on about what happened in the hospital. What kind of damn mother says that???...Jeannie, if you're reading this be prepared to know that the hospital staff will be led to believe you are my adopted sister and have all rights to be in the room any time because I am assured that I can say anything to you...

Well, I had better stop with the angry/sad/nervous post and get on to making my list of questions. Better mood will come later, I'm sure but needed to get this out.

catching up

2009-06-10T18:20:00.000-06:00

Well, I’m currently at work and saving this in a word document to be posted later. As you can tell, I’m totally busy at the moment.
Anyway, I really enjoyed my long weekend in VA with family. I will recommend NOT traveling when totally huge and pregnant. The flights were not comfy, they were totally exhausting and for some reason the heartburn was beyond controllable. …other than that, I loved seeing my family and loved having lunch with a few long ago friends.
I was surprised at how much my nephew has grown…granted he was 4 months old the last time I really saw him and now he is nearly 2. It is incredible the growth that goes on with babies. The time truly flies waaaaaay too fast. ….My mother and I managed to get along the entire trip. Anyone who truly knows this relationship would be proud. I’ll keep it at that and surely have the occasional hurtful recollection show up at later times but not today. …I enjoyed seeing my dad and believe I talked to him more than I had in years. That was truly nice and special to me. ….My aunt was looking well for all that she has been through this past month and I am lucky to have a strong example like her in my life. …It’s always nice to see my brother and his wife. I love everything about them and just wish they lived closer to me. …….On Sunday night, I saw quite a bit of my family that came over for some desserts and just to hang out. That was really nice and I’m just amazed at how well that I believe my family ages. There are moments in the conversations that make me excited for retirement and moments when aging seems to truly be a pain (literally!). ….beyond seeing my nephews every move when he was around, the highlight would surely be my few hours of having seen long ago friends. They looked incredibly good and were so much fun to be with. It is really good to see how much we have changed and really how the core of us is essentially the same. It seems that through all of the ups and downs we’ve had, we’re all pretty strong women and manage to find happiness daily. Pretty cool if you ask me.
..another highlight of my trip was the pictures that my great hubby sent me through our phones. He’d apparently been working on the babies room and according to the 2 inch or so picture it was beautiful. I couldn’t wait to come home to see what he’d done. He even took an old dresser of mine and made it beautiful again with a coat of white paint….once home, it was exactly as it seemed. Gorgeous. We just need to get the crib set up and a rocker. Bring home beautiful baby and we are set.

Yesterday were appointments at the U of U. I had the ultrasound, blood test for diabetes, and the consultation with Dr. Silver. All went well. Ireland is so big now (over 3 pounds) that it is sort of hard to make out what’s what on the ultrasound but bottom line was that she was continuing to stay the course. She has no major changes in the diaphragmatic hernia and I had no issues with my amniotic fluids. We’re apparently continuing to be as fine as can be. I got the call this morning and do not have diabetes. Yay!! I was a little worried on this front because I’d heard that age could be a factor here. I am however, anemic. Was told to get a pretty specific dose for iron and to make sure I’m eating meat and such. I was also told to get some flax seed so that I don’t get “backed-up”. Yay for me. …After a few general preggo questions with the doctor, our only major question was wondering when we’d actually be induced to have Ireland. With the way things are currently going, the great doc believes we’ll just go for an induction on the week before her due date (so due date is Aug 23rd, her actual birth may be around the 16th). With the 16th being a Sunday, I wonder if they’ll go a few days earlier or later so the great doc can have a day off since it will obviously be a scheduled birth. Very excited for this. Suppose that I should be more nervous knowing that we’ll be at the NICU and all but seriously not anything but excited at the moment.

Also, tomorrow have an appointment with what will hopefully be the great pediatric surgeon that we are hoping for. We have already researched enough to know this surgeon is more than qualified but we’re hoping that his bedside manner is as good as Dr. Silver’s. We’ll see and I’ll be sure to update then.

As for today, I am working. I did the bulk of my work as soon as I got here and am currently in “observation” mode and also the ever present “if you need to ask a question, I’m here” mode. I’ll be in these modes for these people until lunch time. For those that don’t know, I typically work in new steel construction and that includes any newly fabricated pieces that are made in shops. Today, I’m in a small steel shop and doing some verifications of materials and drawings. It’s a very easy day because it is the beginning of a project and I am needed simply to make sure they are cutting the correct sort of steel and cutting it according to the drawings. Pretty simple stuff that doesn’t exactly take a genius at this point but working with the precious male egos, simple things can be made more complicated than necessary at times…thus the need for inspectors like myself. ….anyway, I could stay until the end of the work day but because I have the excuse of pregnancy and the drive out here is an hour, I’m opting to leave so that I can take my precious nap. Plus, it is raining. That makes me want to sleep even more. …..any other time, I’d be here for the day but ..ya know. I’ll be back at this same place on Friday. So terribly excited about that (input sarcasm here).
Well, once I’m home, I’ll either nap or post this. Once both are done, I need to get on some thank you notes. I received some adorable things for Ireland while I was home. This girl has a better wardrobe than I do at the moment!! She also received a really cute angel blanket from my folks for her bed and her aunt Amy knitted her an irish rose…literally the name of the pattern…it’s just a really beautiful knitted rose. Also, I need to eventually get on facebook and see what is going on with everyone and also would like to check on everyone’s blogs while I do some laundry. ….and hopefully, Tracy has a place to read this because I am pretty certain that she’s at the U of U right now with her boys and I wish to goodness we could meet…if it’s not possible, then know that you and your guys have been in my thoughts and prayers.
Okay, so as to actually earn some of the money that I’ll make on this little job, I’m going to mingle and see if all is still well here. Everyone take care of you and yours.

Whistling Dixie/dreaming of comfy shoes

2009-06-04T19:30:00.003-06:00

Well, I'm heading to "home"...aka, Virginia this weekend. Tristan safely boarded his plane to TX and now it's my turn.
I am normally really sad the day that Tristan leaves but this time I only shed a few tears. People can say what they will about having an only child but ya know, my baby had no problem yelling across a crowd "love ya mom". Pretty cool. He'll be home in a month and I sure hope that he has a good time at his dad's. We'll typically text too much and talk at least once a day...gotta love electronics.
Well, have packed and am ready for all of my family and a few friends to see the round version of me. This'll be a new one for everyone. I'm sort of dreading the day tomorrow. We have to get up around 4 to get ready and have me at the airport at the recommended 2 hours earlier than take off. I'm a sucker for that rule because I've felt that we've cut it close before and I would just keel over if I missed my flight at 7. Plus, figure I'll grab a muffin or something for a breakfast and then hopefully, I'll just sleep most of the flight to Chicago where I'll have a bit over a 2 1/2 hour layover and can grab a decent bite for lunch before taking off to Richmond. ....I've really been struggling with my shoe choice for tomorrow. I tend to walk around the house in these ugly butt, bright yellow crocs that are about a size too big and comfy as all get out! Now, I've been known to go to walmart in these things for the sake that the rest of me is presentable. I'd probably wear them all the way to Richmond except for I've got that voice in my head saying "what would Mama do" (think I explained this in an earlier blog about how some say the WWJD, well, I feel I've got most of his rules down pat but my mom can be another level!! :) )...anywho, point is, my parents are seeing me at nearly 30 weeks pregnant and I have not seen them for nearly a year and a half...surely the big, ugly, so comfy crocs are out. It is just such a shame. I wore the presentable, nice little leather mary jane looking shoes to take Tristan to the airport, had them on for maybe 5 hours or so and came home with dents across my feet and my legs looking as if I shot them up with a saline solution. They truly didn't feel tight but let's face it...I have been living a pretty leisurely life style lately. Even the days that I work, I wear a size bigger boot and am rarely working more than a few hours at an actual job site and the rest is done at home on the computer. .....anywho, pray for my feet tomorrow. my flight too. and that Tristan is enjoying his stay with his dad. throw in one for Mikey too because he's going to miss us and he deserves a nice weekend.
Also, real quick, just got my first major baby gift yesterday from Ireland's auntie Donna in Colorado......way cool clothes. Cool socks, too. and bibs!!! My baby is already spoiled...how cool is that?!

Such a lazy blogger

2009-06-03T06:36:00.002-06:00

Hi All!...I've been staying busy. I had a friend tell me at our bbq saturday that she worries when I don't write so I'm going to try to be better or atleast write a few times a week. Life with Ireland in tummy isn't such a ball of stress for me anymore because her outlook has been so good. We do have appointments coming up next week. Tuesday, I have another ultrasound and consultation with Dr. Silver, my diagnostic OB love/doctor and then on Thursday we have our first appointment with the pediatric surgeon. I'd imagine I'll post quite a bit either before or after that appointment. I'm excited and nervous for that one.
Anyway, I had an awesome bbq saturday night and wish all that I know and am getting to know could have come. Every year we tend to have one or two BIG parties and this was a good one. There were a few friends away due to us giving all of a two day notice but we still had a blast. There seemed to be tons of kids there this year. And of course as the night settles and the mild friends/younger parents trickle away, our wild people stay and make me laugh like crazy. I took a good nap that day so that I'd be prepared to stay up a bit and I'm so glad that I did...then again, a good friend moved the party to his house at around 11 because he was worried that I really needed to get some rest. Good people I tell ya! He needn't have worried but then again, I was instantly asleep when I laid down.
Also, have been sewing as if it's going out of style. I'm wondering if this is part of my "nesting" because in two days I've made like seven different bags and a requested neck pillow for my son. I've gone to the book store and bought like 4 craft books that I really didn't need and hoarded fabric to the point that last night my cheap butt sewing room storage system broke (of course, I did lean on it pretty heavily). Luckily, my good hubby assures me that he'll make some good shelves for me this weekend. Gotta love that man.
Anyway, I'm getting ready to fly out to VA for the weekend. I'm very excited to see my family and a few friends. It's going to be a short trip but it is much needed. I haven't been "home" for nearly a year and a half. My family has never seen me pregnant and they may be shocked of how short(feel like I shrink as I get heavier) and roly-poly I am at the moment. I'm very excited to see my aunt to see how she is holding up (short recap: she lost her son/my cousin recently) and am glad that I chose to visit her now rather than at a funeral when there is too much going on. ...Also am hopefully having lunch with a few friends. I had really lost contact with so many people from school because I've lived away from home since I graduated and am just glad to live in the technological world that starts to bring us back to one another.
Also, a quick note about my sister in law, Sarah. As soon as I find her blog again, I'm going to post it on here. She has a mysterious neurological illness that no one seems to know quite what it is and she has started a blog in hopes that someone will have some help or insight for her. If you could take a minute and read it, send her a prayer, maybe know a tip or two on where she could look for help, I'd really appreciate that. I'll try to post her blog by this afternoon.
Well, I'm going to start my day. Am eating nutritious cocoa puffs, need a shower and take Tristan to his last day of school. Plan on making sure all of the laundry is done and throwing a pork roast in the crock pot. The sun is shining and all is well.

things I've made for Ireland's arrival

2009-05-27T11:25:00.009-06:00

I said I'd add these pics for sometime. Having some lazy moments before I get to work here and wanted to throw these on the blog.

These were the little eye masks that I made some time ago. Want to make many more for anyone that wants these or possibly needs to give their baby some flair in the NICU.

These are some simple burp cloths that I made...look much cuter then how I managed to photograph them. Oh well, can sew...photography, not so much!

This is my Lucky dog sitting with some pillows, another little blankie and the eye masks.

These are the little outfits that I'm planning on making this week and one of them will be the coming home outfit...hopefully. ...for those sweeties out there thinking I have a grain of real talent....notice the words "easy" written on the package. This is always the key to anything that'll be worn outside of the house!! :)

Well, adding pics was a major challenge here for me. Just thought I'd let everyone know that I'm possibly the worst blogger and may need to get a book to make this take less than a half hour just downloading pics that kept going to the top of the page and then me having to frequently rearrange my words and pics......anywho, this is my hobby. I would not want a seamstress to judge me but I enjoy my amature work just the same. ....welcome any suggestions on books I should read to make my blog actually look more than amateur or anyone that simply has suggestions. Thanks!!!

Back to reality

2009-05-27T05:24:00.002-06:00

Well, yesterday's appointment went well. It was just an ordinary prenatal appointment with the nice, young midwife and a consultation with our beloved Dr. Silver. I weighed in at nearly a ton and somehow managed to laugh. My loving husband let me know that I was starting to look like my Wii character that was trying to balance on the tight rope...for those that have the Wii Fit, ya know the balancing act. I happened to make my character a short and fat, brown haired number complete with pink, fat body and skinny little black legs...beautiful image, huh? It's okay. It really is funny because fact is, I am starting to look like this. ......anywho, my questions were at a minimum. Our lung to head ratio was a 1.59, which remains very good. My only slightly upsetting moment was when I said that I was feeling optimistic and that Ireland was going to sail through this and be home before we knew it. He gave me a look and said that although he would nearly give her the 95 to 100 percent chance to live that we were still dealing with something very significant and to not believe that we were just going home. He felt that her chances for survival were truly high because she has sailed through each test but that many things could happen and that bottom line, even with her optimum state, she was still in for at least 3 weeks in the hospital and that this would not be an easy road. Her condition after the surgery would determine any long term effects. ....I want to add in that he was simply bringing us back down to reality. He wasn't trying to scare me and even threw in that huge percentage because he truly believes we remain on the "best case scenario" road. He just didn't want us to feel that we were going to have this beautiful baby, hold her, have a little surgery and go home. I understand this. Also, Mikey and I were laughing about the whole Wii image when he walked in and were talking about how this was a nice visit, it felt like one of my original "normal" OB appointments. ....I remain respecting my good doctor and appreciating his honesty. I truly feel that the UofU is where we belong and that we have gotten the best care possible. I am also excited to meet the pediatric surgeon on the 11th of June. I asked Dr. Silver what sort of questions should we expect answered and he said anything. Awesome thing, if this surgeon is anything like Dr. Silver then we will be truly comfortable. ...my next appointment with Dr. Silver is of course in two weeks and we'll have another ultrasound at this point. I hope that we have the machine that can give us 3D images...and also, we really liked our first ultrasound tech. The last one we had was nice, we just felt a connection with the first lady we dealt with, believe her name was Lee.
Anywho, am determined to post pictures later today. Maybe throw in a lovely preggo pic of me as well as a few of the things I've made Ireland.
.....Bottom line for me today, I had a tinge of a dark cloud when reality was brought back to my attention because through others blogs I do know the unthinkable can occur and that our initial road will not be easy...but also, remain hopeful that my baby girl will be home. I am not scared of oxygen connections, initial eating problems or even any long term hearing problems or whatever else may come our way...I've been scared of not bringing her home. And with the knowledge I gain each week about what her condition is, the understanding of the various tests that she has had and will have, the knowledge I gain from those that have been before me and share their NICU experiences...well, Ireland will come home and that is truly what I've wanted for a long time. Also, even if there is anything long-term, she will be a normal child.

I've got to throw in this thing from yesterday....Mikey and I had to register my car and get emissions checked after our visit at the UofU. Well, once you hand off the vehicle and go wait for your safety and emissions check, you go in this little room to wait and pay. Wouldn't you know this dad comes strolling in with the two cutest little girls. The one ignored me, grabbed a book and read. The other, who was in little leg braces and had the most adorable blond curly hair, could hardly sit still she was just so loving life. Anyway, the dad was waiting in line to pay, checking on them every minute from where he stood, and needlessly apologizing when this curly haired cutey kept dropping things and talking to me. Wouldn't you know that as they left, this little girl comes to just give me a hug and kiss my arm. Oh my pregnant self!! Her dad sort of laughed and apologized and all I could think was that this was the most precious girl ever. She was just smiling and loudly saying "bye" and I could have totally crushed her with a hug (yet did contain myself). Of course, we were leaving all of a minute behind them and I was nearly crying. Mikey just sort of chuckled but he knew it was adorable, too. ...anyway, something about this girl let me know that all was going to be fine. Can't explain it, I just know it. It was my little gift from God and that little moment was truly beautiful.

Hibernation

2009-05-25T06:35:00.002-06:00

Sorry, I've been keeping myself busy lately. Call it nesting or maybe realizing all that I should be doing while home right now. I am truly amazed at those that stay home and clean, cook and tend to all domestic things. I did this for almost two years when Tristan was a baby but man, I forgot. You work and work and sometimes,within a week (atleast on cleaning side)...it looks like you didn't really do all that much. I've been tending our very small garden....didn't want a big one this year...And, I've finally picked up my sewing bug again. I think having a girl has really upped my love for making stuff. I keep asking my son, nearly 14yrs old, if he'd like me to make him anything just because I realize that I'm doing so much preparing for Ireland now. He keeps saying that he'll think on it but honestly, for my guilty feelings, I don't think he really cares as long as he is fed, clothed, and gets some attention himself.
Anyway, we have a doctors appointment tomorrow. We have some questions to ask and also, I'm going to try to get my diabeties lab taken care of tomorrow so that I don't have to drive out to the UofU just for that. ....really, I hope that I'm not in some denial but I'm really not too worried lately. I feel that Ireland must have a mild case of CDH and even though I know her birth will not be my dream scenario and a stay in the NICU will be difficult, I also feel that I know she'll be home once it's over and I'm really feeling that she won't be a case that has to have some extreme sort of isolation once she is home. If things turn out different, I'll deal with it then. For now, I'm really enjoying my pregnancy, starting to enjoy staying home and just generally getting excited about having a baby again.
I'll try to post some pics of my latest sewn things sometime this week, just for bragging rights because truly, my talents are not expressed that often. (Most women probably forget all about the fact they have talents between taking care of kid/kids, significant other, jobs, home, etc.)...anyway, so far, it's just some fancied up burp rags, a few small blankets, and am going to make a simple dress for her to come home in...a few other small things.

Also, want to give a shout out to fellow veterans, past and present. I love them all and truly appreciate the freedoms I am allowed through their selfless service. Most veterans do not even realize their sacrifice until they can look back and realize what was given up on any given moment because the phone rang and you had to serve your respected branch of service before you did what you may have wanted to do that given day, month or year. Sadly, too many never even had the chance to look back. ....just something to think about on this Memorial day.

quick post

2009-05-15T07:04:00.002-06:00

I wanted to throw out there that I got the MRI results yesterday. There is nothing new to report. We're still dealing with just the stomach and bowels in the chest cavity. This is pretty decent news to us because in the past month that means that as Ireland is growing, she's not having migration of other organs into the chest. YAY!!! None of this is exactly exciting news but at this point, we can deal with this and are simply ecstatic that she is growing as she should.
I was also scheduled for my first pediatric surgeon consult. We're pretty excited about this because we have tons of questions for this poor doctor.

Just a shout out to Tracy, we are seeing a Dr. Sciac..something like that, is that Ian's surgeon? And how is your son?

To everyone that sent condolonces for my cousin, thank you. I've decided instead of flying out for his memorial service to fly out for a weekend to enjoy my family and friends. This was sort of my mom's suggestion and after thinking about it, it made sense. My cousin was not the type for mourning but for having a good time. I have not been home to VA for over a year now and it will be nice to see everyone. ....this particular weekend, is about mourning my cousin and celebrating his life, not greeting me. My thoughts will continue to be with my Aunt and her most immediate family. As too many CDH mothers know, anyone burying their child needs all the prayers they can get. My cousin was in his upper 40's and the fact is that his mother had to say goodbye and it is just not the natural order of things.

....also, for those wondering. I'd love to stay for more than just a weekend but between family schedules and my increasing amount of appointments, a weekend is all I've got right now.

Yesterday....

2009-05-13T08:02:00.004-06:00

Yesterday was more than I bargained for. I was up early to shower and shave to get ready for a day at the UofU. Our bonus was that apparently no one comes to the hospital first thing in the morning...so decent parking was acquired for once!! Well, after waiting for nearly an hour, I had my MRI. I don't want to do anything like this again any time soon! I am rarely claustrophobic but man, the MRI machine brings that out. They had these earphones on me to tune out the noise of the machine and had Leann Rhimes playing....normally, I love Leann Rhimes. By the time I was done, I nearly hated her music. Seriously, the whole thing sucked. ....the guy putting me in the thing was very nice. He gave me this little bulb to squeeze if I needed him and I was determined to be the ideal patient. I told him no problem...and he let me know that it would be about 15 minutes unless Ireland decided to move the entire time. On cue, the minute I was in the machine, Ireland started moving. Oh my God. I thought I'd cry then and there. ...long story short, I was probably in there closer to 15 or 20 minutes, I did not squeeze the bulb to scream help, and was rescued before I decided to start having my full blown tears and panic attack. I should have asked questions when he asked if I had any but I recall just making a bee line out of there and wanting to go. Crazy.
Mikey and I had a couple of hours to kill so went to IKEA to walk around for an hour before we had to head back for the ultrasound and meeting with the doctors. Managed to only buy a few majorly cheap things and then headed back to the U. Out of nowhere, Tristan calls and lets me know that he believed he broke his finger. Well, that makes you feel like crap! You've got appointments for the future baby and your current baby needs to go to the doctor. We were about an hour away from Tristan and basically decided that the finger would have to wait a few more hours after talking to someone at the school that assured me that it could wait. ....okay that was my first little insight to mothering more than my one. Then again, I didn't feel that I was choosing one over the other, just deciding what had to be done at that particular moment. Much easier than I thought it would be. It made sense to stay and get Ireland's tests done and the school official did truly assure me that Tristan was in no immediate danger.
Well, once at the U, we had the ultrasound done. We were a tad upset that we had a different UT tech but it wasn't that big of a deal. Just the one before, Joe, was the tech that we felt more comfortable with. ....It had been a month since the last ultrasound so part of us was nervous that her growing had called more problems but according to the meeting with Dr. Silver afterwards, everything looks the same. He is still just noticing the stomach and part of the intestine up and the heart pushed over a bit....this is actually good news because nothing has moved up. Then again he'll have a better look at everything with the MRI but for whatever reason, he didn't get that back and I won't have those results until most likely, today. ....I was told that my amniotic fluid is on the high side but that this is somewhat common right now for what we've got going on. I also gained nearly 5 pounds. That was upsetting because I've hardly gained weight throughout the entire pregnancy and BAM!...oh well, it was bound to happen.
Anyway, on the way home I got a hold of Tristan on the phone and he let me know that he was fine but his finger was bruised and swollen. I made an appointment at our dr's office and luckily got one for a few hours later. ....during this time, my brother had let me know that my cousin had passed away. We were expecting this news but it was upsetting. I had not seen this particular cousin for years but always had an odd connection with him because I felt that he and I were the black sheep of the family. Also, he was so much fun when I was little!.....He was only 10 or so years older than me and I just feel his life was cut short. Also, his mother happens to be my favorite aunt. She has been there for every single major moment in my life and I sure want to be there for her moments. After talking to my mom, I've decided not to fly out the funeral but to wait a few weeks for more quality time with my family. It has been over a year since I've been home and we've decided that my cousin was the type to rather have you there for a good time than to cry over him.....my family had told me that they thought that he'd be buried at his childhood church but apparently it's decided that he will be cremated instead. This is oddly comforting to me because I wasn't sure in my heart of hearts that he'd want to be buried...and I base this on nothing but the feeling that he was such a free spirit. My heart and prayers are with all my family right now, especially my Aunt who is doing the unthinkable and dealing with the pain of losing her child and also with my cousins' girlfriend, that had loved him for over 14 years.

On the lighter side of yesterday, my brother informed me of a friend looking for me through facebook. I have not seen her or spoke to her for YEARS and couldn't be happier to see how amazing her life has become. She and I were the best of friends during probably some of our darkest moments and I am so glad to reconnect with her. I can't wait to finally speak to her on the phone and will be even happier when we can see each other. Of course, she now lives in Seattle, WA but luckily, I also have an aunt and uncle that I'd love to visit up there as well!

Well, amazingly, the sun came up today and there is another opportunity to have a great day. Yesterday was not horrible. I would have loved to have the MRI results but patience is something that I'm working on. Mikey and I are believing that no news is good news and that Ireland's condition is staying consistent instead of worsening. Tristan's finger will heal within 3 weeks even though baseball will probably take a back seat. My cousin's death, though sad, he would not have wanted to be living without a real life. He is not in any pain today. Me, I'm a little fatter, but my baby is bigger and growing on schedule. I also have found a friend that I've had more ups and downs with than I can count and I can't wait to talk to her.

Appointments tomorrow

2009-05-11T11:10:00.003-06:00

Sorry that I haven't posted lately! I've been busy with work for a change and when I haven't been busy in that way, I've been trying to get some rest. I've never had horrible allergies and these are taking the cake this year!
Tomorrow is the MRI, another ultrasound and meeting with our great Dr. Silver. I'm starting to run out of questions for him and tending to want to meet the surgeons and neonatal doctors. We're really ready to have a tour of where Ireland will be when she's born. We'd also like to see if there are any current patients with CDH over at the NICU. It would be nice to meet someone personally dealing with this and also to see what we're dealing with. It's one thing to read personal accounts and to see pictures but I really would like to see the real deal. I hear it's a shock and I'd like to get as much of that out of my system as I can. I am hitting this point where I'm feeling so positive about Ireland's outcome. I know that this probably seems to change from week to week but seriously, I can talk about her "condition" with a smile and not only reassure whomever I'm talking to but also really mean it. So far, she's come through all of her tests with flying colors and I'm just back on track of enjoying my pregnancy and getting ready for a baby to come home. I'm excited to hear her MRI outcome and also to have this next ultrasound. So far, each trip to the doctor and each test has brought us closer to feeling good about Ireland. I guess this MRI and ultrasound will be the thing that makes us feel even better. I'm hoping that since the MRI is scheduled for the morning that by the time we have the ultrasound and see the doctor in the afternoon, that we'll be told everything looks the same....meaning no more organs have pushed through that diaphragm hole. ....I'm also just excited to see Ireland...guess this is the selfish bonus of our appointments, we get lots of ultrasounds. She seems to be an octopus lately so I want to count legs and arms because this girl is on the move. She seems to be low and high all of a sudden! She must be an acrobat or something...plus, she should be starting to put some weight on and I hope we can get a decent 3D picture....we have a few already but she still looks sort of alien and majorly skinny in them. I'm also not wanting to stand on the scale this time! I don't think I'd even gained an ounce the last appointment or two but lately, I seem to be hungry every hour or so. Would imagine that there will definitely be a gain this go round....for anyone concerned, don't be. We dealt with infertility for nearly 5 years and that left me with extra weight before I even got pregnant so the doctor says I'm fine as long as I'm eating decently. I have to check but to date (26 weeks), I've only gained about 10lbs, if that. Once again, total chunky before I even got preggo and can assure everyone that I am a pig and rings were gone and moved to necklace by the 3rd month of this roly-poly adventure.
Anywho, prayers for us tomorrow please! Also, checked on baby Ruby the other day that I obsessively check on and she is off of the ECMO (big bad heart/lung bypass machine). So glad to hear this. Strangely overjoyed at the news of this little baby that I'll most likely never know.

I'm whining...and updating on my babies

2009-05-05T05:18:00.005-06:00

I feel huge. I believe I overdid it yesterday and really hurt my back. I've had the occasional uncomfortable back but man, I really did something! On top of that, I slept in a position that did not make me anymore comfortable. I believe that I pinched that stupid sciatic nerve again because my stinking leg has joined in the hurting this morning. I know, boo-hoo. I can't imagine those that suffer from this constantly...even if I suffer from this throughout the pregnancy, I know it'll end once Ireland is born. In my defense, it doesn't help this morning. I truly believe I get this because God insists on me only having skinny legs...granted they are not my pretty legs of yesteryear but they tend to stay on the slim side when the rest of me balloons beyond the so called "apple" shape and more in to X-LG lollipop shape....doesn't help that I'm only 5'4, when a few more inches could of helped me out!!!
Well, I couldn't sleep a wink, was up around 4 and just couldn't go back to sleep. Was a bit hungry and decided that since I'm feeling so thin to have some cocoa and just two decent sized oatmeal cookies...I splashed milk in the cocoa for some nutrition and figure there are raisins and oatmeal in the cookies...this covers some nutrition. Plus the ever wonderful prenatal pill/constipation endorser.
Anywho, will stop complaining for the moment. Plan on maybe doing some simple step aerobics on the Wii and maybe that'll help....we'll see. ......I've been really paying attention to my original 3 CDH babies. Kaden, Ruby and Charlie/Gumdrop. Of course, Kaden sadly passed away and my prayers are more focused on his family. I am still amazed at how soon I felt connected to Kaden's family and the journey that they were on. I click on their site to see how they're all doing and still feel upset on how unfair it was that their baby boy was taken so soon. I check on Ruby and am amazed with the strength her parents exhibit daily. They are on the path of doing what they can for their daughter and are continually teaching me the ways of the NICU while they are at the Children's hospital of Philadelphia. They have had to endure watching a baby across the room pass away, they've had to make ordinary decisions that are extraordinary during this time (i.e. should we leave to eat, sleep here or there, etc.), and through it all they detail each step through their blog. Ruby is one cute little girl and yes, I'm attached to her through following her little journey. ...and then there is Charlie. He has had his own long journey and is finally (as of a few days ago) home. Charlie was one baby that did not need the ECMO (big bad heart/lung bypass monster), yet was in the hospital for nearly 3 months. He also had a continuous up and down journey that kept his folks through the gamut of every emotion imaginable. And fortunately, he is home but must be isolated for up to a year. How difficult a time when during a pregnancy, you can't wait to show off your little baby. ...I'll be thinking of his family because I'd imagine this will be very difficult and is probably a very exciting and scary time. Many people forget that the main goal for all CDH babies is healthy lungs. The babies going home have one semi-decent lung and one lung that has overcome some major smooshing and is needing to grow and continue it's path of healing. The diaphragm is most likely still healing from the repair surgery, the organs that grew in the chest area are making a recovery to function properly in their new home of the abdomen, and some babies have additional heart problems, hearing problems, growth issues, etc. I see how hard the CDH journey is. My prayers will stay with Charlie's parents because the excitement of being home has a shadow of learning to deal with the hard stuff even while they get to enjoy the good of having him home.
Anywho, just wanted to update on these families because they're the ones I have initially observed since I found out about Ireland. Since then, I've had the pleasure of "meeting" tons more people that are on the up and up of CDH. I don't expect everyone to become advocates of CDH but I'd just like to say that even one small prayer for this condition, the families, the babies, and the doctors and nurses that deal with this....well, it is a good thing.
Of course, now that I've blogged a bit and filled up my belly some, I'm tired just as the sun is slowly peeking over the mountains. Silly me. I think I'll take myself a little nap now.

Loving Technology...and ladybugs :)

2009-05-03T18:59:00.003-06:00

I've gotta tell you that I just love technology. My awesome hubby got us all new phones yesterday...our 2 yr contracts were up so they were free. We went online, picked out what we liked, ran to the store to check them out, came home because they wanted to charge us something crazy upfront and then give us rebates (meaning Not free and we have to do all the stinking paperwork)....picked them out again online, Mikey did some talking on the phone, went back to the store, and now we all have really cool phones that play music, have cool features that we'll probably never use and our pictures are easier to see since they arrive much bigger than the old flip phones we had. Much better to see my far away nephew. Also, I'm pretty close to my brother and it's a great way that we keep in touch.
Anyway, I've been loving keeping up this blog. I have times like this weekend where I don't necessarily have much to say and then times where I could type forever. ...point is, it's a great outlet for me, I get such awesome feedback that can uplift and make a day so much better or really show me some real in site, and then I feel that I may be helping others through either what I say or what people say back to me. Good feeling!
Also, for those that are not on facebook. I highly recommend it. I have been in contact with tons of friends from back home in Virginia and family from all over and it is another great thing about our technological world. This is another place where I just plain old get good vibes constantly and if someone else is down, you can lift them up so easily with a few kind words.
anywho....now that i've pitched all things technological...I wanted to thank everyone for sort of supporting my feelings...the good and the bad. I also wanted to update on our shopping trip Friday. We went to quite a few places and I pretty much have my heart set on this ladybug set from Kids Line for Ireland's room. It has the colors of pink, sage and red....great girl colors and not too ooey gooey for my taste. Mikey wasn't sure about it at first and joked that he didn't know if there were any ladybugs in Ireland....but I told him, the great thing about infants is that Mama chooses and our Ireland won't be at an age to argue about her room. So, ladybugs it is. There are also cute flowers and I want to say a butterfly or two. We've pretty much decided to paint the bottom half of her walls pink, use the Kids Line "ladybug" theme border and then keep the top white. We're most likely going for white furniture because I have an old dresser that I'm giving her that will look much better with a layer of paint due to my apparent messy obsession with nail polish when I was young.....and, I am letting Mikey pick out the crib. I could honestly careless as long as it is safe. ...for now, our current savings plan has me scouring the internet for the best prices for this bedding and decor set. It's amazing the differences you find in prices. Babies 'r us had this set for about $165 and Shop-ko had it on sale for $120.....going to research some this week but may have to go back to Shop-ko before the sale ends on the 9th.
Anyway, we had an uneventful weekend. It was nice because we've had stuff to do each week for months now and we even had Tristan to ourselves (minus sleepovers) for once. Very nice. He's started his baseball where the practices just happen to be at the park next door to us...very convenient! T (Tristan) and I had church this morning, went out to breakfast, he got his haircut and I grocery shopped...Mikey came home before noon from work...and well, this Sunday was a perfect day. I personally love home and like days like this. I could of and probably should have done more chores but they'll be there tomorrow for me. It's not like I'm working tons right now. I'm starting to enjoy this staying at home thing and part of it is that I don't feel like I'm totally out of touch with the world....thanks to yes, technology. Plus, we're probably eating better, definitely saving gas money since my work tends to have me all over the state, and most of the time the house seems in a much better condition :) Granted the garden gnomes of UT have not congregated in my garden and magically made it beautiful...maybe soon.

Deep: death and dying touched on here

2009-05-01T09:16:00.003-06:00

Last night was one of those evenings that I once again am reminded that there are many layers to Mikey. Kind of like Shrek...remember the onion :). Anyway, we were talking about a phone call he had earlier. I won't go into too much detail because I wouldn't ever want to hurt this particular person but I'm going to say that I'm amazed at how many people cocoon themselves in guilt when others can let it go. It's so dang debilitating! He was on the phone for a good hour and a half and I do hope that when he hung up, there was some sort of peace on the other end. Anywho, as we're talking...one of those good talks that tend to come more often in the face of hardship...we hit on quite a few topics and eventually it led us to Ireland's birth and for the first time, possibly her death. It's hard to say that and I don't imagine we'll go there many more times. But we decided, in tears that it was okay to talk about this. Bottom line, I had a moment where I just said I wasn't sure that I'd want her buried here in Utah when I wasn't sure if it's where I'd want to be buried. I would want her near me and not alone. I don't even know if I'd want the whole cremation thing and have some jar in the house where I may feel heartbroken constantly. Well, the entire conversation on this didn't last a long time because it's uncomfortable, sad and we're wanting to continue on our course of hope. I just wanted to continue my little blog of honesty here and say that this happened. I'm sure there are many with opinions and honestly, I would prefer no one give me religious lessons here...this is probably, to me anyway, as personal as I can get on this blog. I read other blogs, when I can, that tell the stories of other families that have dealt with CDH and the hard reality is seeing the great outcomes and reading the difficult times that can end so tragically. .......I just wanted to put this conversation of ours out there because I know I'm not the first person that has thought of this during a difficult pregnancy. I'd like to believe she'll be in heaven and if there is a heaven, she would surely be there ...but there are times that I wonder if we're part of a circle of life where there is a sort of heaven about being part of the earth, ya know, feeding the earth and we're all connected that way. Anyway, I don't want to get all deep and theological. Prayer and God are important to me but I am human and the type that can think too much...and it's a good thing and possibly a bad thing too. Just would like my opinions respected since this is my experience. ....anyone that reads this, by now knows my writing can be a bit all over the place...forgive me and hopefully the rambling once again made some sense.
Well, on that possibly depressing note...I'd like to say that I'm nearly 25 weeks now and am ready to make this nursery. Mikey has the day off and we're going to look at some cribs and such today. It's time. I'm at peace more and more all of the time and thinking positive and knowing that if this does not work out our way that there is good in donation too. And seriously, that is IT on the depressing junk.....We're on a really positive route. Ireland has definitely got some hurdles but she has passed some pretty tough tests lately. She enjoys kicking me and I enjoy knowing she's there. We've got incredible doctors and awesome support. Deep down, I am believing that she is going to continue her best-case-scenario and come home and get better each day. She's going to love being a Brady baby! Who wouldn't want me as there mom?! :)

One more test!!!

2009-04-30T06:13:00.003-06:00

Yesterday afternoon I got a call from the U and one of Dr. Silver's team wants us to get a MRI now. Mikey is upset about this but I figure we're being treated by a team (technically) and things like this are bound to come up. There is a Dr. Byrne that is his partner and she's the one that requested this test. I figure they're also educators and if this helps them have a definitive outlook of Ireland's chest...well, I'm okay. It's not like it's going to cost us a gazillion and it was at least scheduled the same day as my next appt. in two weeks.
Well, Mikey has frozen me this morning. He is the thermostat nazi and must have took it upon himself to turn it off. It was 53 degrees on our thermostat this morning and I can tell you it was colder than that in the main rooms of our house...the news is giving us a high of 42 degrees right now!!! During the day, it's getting around mid 60s and feels good enough to turn off....the nights, another story!
Anywho, I was pretty productive yesterday....let's go for another day like that! Bathrooms could use scrubbing, sheets need washed and I should probably start focusing on something for mother's day.

Blessed / details of the appt.

2009-04-29T06:21:00.006-06:00

Between emails, facebook and this blog...I'm feeling really blessed. Thanks so much for everyone thinking of us. I know that we're always thinking of our friends and family but something like this happens and all of a sudden, everyone makes it known that you're thought of. It's so nice and means more than you can imagine. ...I think some of our family worries because we're out here in Utah alone. Trust me, we're not alone. We have very good friends that will step up the minute we ask and plenty more that are there without being asked. In this technological world, we are in touch with everyone and we have daily encouragement. I'm in touch with people that I hadn't known for years, and this blog brings new friends all the time. Even better, I'm in touch with people who are either going through this or have been here and know what we're dealing with. I'm just feeling thankful this morning and wanted to make sure everyone knew...you all know who you are and I thank you.
Well, yesterday's visit to the U went very well. Our genetic counseling appointment was fairly short. All of the results to amniocentesis came back normal. The counselor took a quick family history from us and let us know that he saw nothing that raised his eyebrows. He was very kind and just stated what we'd already learned...basically, that CDH does not have any definitive cause. It is simply something that happens and the genetic counseling world is working very hard to find out ways to better understand why this happens. Good luck to them. It is noble and I understand nothing of what they do and am just grateful they have ways to assure us further that we're dealing with an isolated problem. ....Once we were done with that appointment, we were whisked back to our waiting room to meet with Dr. Silver. I was weighed, very happy because I hadn't gained even a pound, which is fine because I'm now being seen every two weeks. I had a midwife check Ireland's heart beat and ask routine pregnancy questions of how I was feeling and did I have questions. I preferred to wait to ask Dr. Silver, but she was efficient and knowledgeable in her own right. I saw her as part of my appointment because all of my routine pregnancy appointments as well as any additional care are being dealt with at the U now. It's nice because I do not have to go between two different hospitals. ...Anyway, Dr Silver arrived on a white horse (yes, this man is my hero right now) and sat down to talk with us. I immediately started with my questions. 1. We will explore dates of when to be induced as we near the end of my pregnancy. He'd like me to carry Ireland as long as possible and apparently, I'll be seen two or three times a week towards the end. 2. I will not necessarily have a C-section. He actually prefers for me to have a vaginal birth because he said vaginal birthing actually facilitates her problems by squeezing fluid out of the lungs as she comes through the canal. 3. I can freely have an epidural and this will not harm Ireland further. For those that disagree, we are all entitled to our opinions. I consider any birth natural seeing how a baby is coming from the mother's womb. Period. I could care less if a child came from your tummy or your vagina,...whether you used drugs or not...it's all natural to me. 4. Tristan can come and see Ireland when she's born. Any other children are a no-no. I have decided that Tristan can be with me during labor but he'll have to wait until he has his own children for the grand moment. But as soon as she's born, I'd like him to be able to come in the room. Apparently, my birthing room will have a window to another room where all of Ireland's doctors will be. The minute she is born, Dr. Silver will hand her through the window where she'll immediately be incubated (still truly figuring out what this word means) and stabilized. From there, they'll wheel her by me so that I can see her and then they'll be off to the NICU (neonatal intensive care unit). Mikey and I have agreed that he'll give me a kiss and follow Ireland. Tristan can stay with me at this point. 5. I asked if my diet should be changed in any way and he said no. To continue a normal diet and that nothing I do will effect amniotic fluid levels or anything else really. 6. We asked about Ireland having an MRI. He said that we could if it made us feel better but currently, they are getting very good pictures from the ultrasound. I'll continue to get ultrasounds at least monthly and if more organs seem to be moving into the chest cavity, then he said we'd probably get a MRI at that point. (once Ireland is born, she'll most definitely get a MRI herself.) Currently he sees the stomach and some intestine in her chest cavity but nothing else at this point. He also said that the ultrasound was so well that he really felt that the heart was going to look good during our echo cardiogram. 7. I asked about holding Ireland and spending time with her in the NICU. He said that holding her may take time but that the view of the hospital is that touch is important in healing babies and that I can expect to be welcomed by staff to touch her and be by her as much as I want. He said that if I'm tired, that the NICU tends to take very good care of parents that want to be there and for me not to worry about places to stay. And Tristan will have restricted hours but can visit with either Mikey or myself...other children are off limits and visitors will also have restricted hours and may not necessarily enter Ireland's room. .....Well, once we monopolized his time, once again (even though he is kind and laughed when I told him that I wasn't comfortable calling to ask a simple question...he insists that he'd prefer me to call about anything rather than worry....see why I love this doctor)...anyway, once done, we were off to our echo cardiogram appointment. After a small series of hallways and elevators and hallways, we arrived at the pediatric cardiology department over at the Primary Children's hospital (conveniently next door rather than across town, nice, huh?). Well, Dr. Silver had already made us feel good about this hospital and the appointment. He said that bottom line, rather than having hospitals throughout the state that could care for CDH babies that it was decided to have all the experts at Primary Children's. This helps with insurance approving the care and it keeps the knowledge concentrated here at Primary. ...Okay, back on track with the echo cardiogram. This test is a detailed ultrasound directed at Ireland's heart. It took about half an hour to 45 minutes because Ireland was jumping around so much. The only discomfort was me laying on my back and not wanting to move because I knew that Ireland wasn't staying still and I didn't want to cause even more movement....well, the tech wasn't allowed to say anything to us and it had us somewhat worried because the test was taking so long. Once she was done and the doctor came in, he immediately said that he wanted to take a few more pictures. Two more minutes of worry. Well, once he began to speak, it was all good news. Ireland's heart is definitely moved towards the right side of her chest but all 4 ventricles appear to be working properly and all the attached veins and such are also appearing to work properly. This is one more hurdle that we sort of passed. We asked if her heart was crushing the right lung but the doctor said that this is highly unlikely. Her heart is towards the right but not at an angle completely over her lung and not even at an angle that would even compromise growth of the right lung. This was very good news because of course, her left lung is being crushed and her right lung is what she'll need to be strong at first. The doctor let us know that he'll most likely check Ireland after her birth but that it's good news if we do not meet again. We would only need to see him if she would have to go on the ECMO (big bad lung/heart bypass machine) which of course, we really don't want to go there.
Well, that was our day. It was about three hours for all of that. The efficiency at the U is pretty amazing. We truly expect to have a major wait at times because clearly they take their time to answer our questions and common sense says that they're also answering questions for their many other patients. Compared to our last appointment, there was hardly any other patients there this time. That must be good...less sick babies coming into the world maybe?
Anywho, next appointment will be in two weeks. It'll be an ultrasound, routine checks and question and answer time with our hero, Dr. Silver. He'll be beginning to coordinate meetings with those that we need to know at Primary Children's and here soon, we'll take a tour of the neonatal department. We're feeling so good right now. We're trying to keep our feet on the ground because we know that despite all good news, there is still a very serious and scary thing we're facing. It's hard to find that balance but we figure we might as well embrace all of the good news we get!!!

At the U of U

2009-04-28T07:40:00.002-06:00

Today is our next appointment at the U. We've got a genetic counseling appointment...don't really know what that entails beyond the amniocentesis results and possibly medical history from Mikey and I....my history will be short due to adopted and have no history. This is the first time I've really wished I could have atleast some medical records of my birth parents. All I know is that my birth fater passed away not too many years ago and that my birth mother suffered from a mental illness. Not a lot. As for the amniocentesis results, I feel that this will be good news since the preliminary results came back all normal. After the genetic counseling, we visit with Dr. Silver. He is my primary physician now so I don't know if this'll be part examination / part consultation. I'll be sure to shave, just in case. ....I know that we have a list of questions this time around. A few I've got are: Will I be induced or have a c-section?, Should my diet change to help with amniotic fluid levels or to help Ireland in any way?, Is my cervix OK because I've stopped "relations" (trying not to put TMI) since I've been all out bleeding afterwards?, Will I meet with a social worker soon so that I can better know what to expect at Ireland's birth? Can Tristan at least see her?....a few more. He said to ask him anything so I'm taking full advantage. After this, we have an appointment for the echo cardiogram. I'm very nervous about this appointment. This will make sure that Ireland's heart is ticking along correctly and not too compromised since it has been moved over by her stomach. I've read that heart problems are fairly common in CDH babies and this will be such a relief if it means one less problem that she'll have to deal with. .....It's funny, sort of. I watch the ultrasound that is about 20 minutes, where they first discovered that she had CDH. I study it as if I know what to look for. For those that do not know, I do quite a bit of ultrasound myself, except on industrial materials. So for all of my experience, it is actually completely different...to the point that my screen is read in graph format, not an actual picture. But anyway, I understand fully the technology behind ultrasound and sit there acting like I know what I'm looking at. I don't really. There are dimensions that I get but I really know what I'm looking at simply because the lady that did the ultrasound told me what was what. I sit there looking at where her stomach is and where her heart is and swear that the heart is showing at least all 4 chambers and that it seems to be pumping at a good speed. I certainly hope that it is. I've prayed more than I can remember about this.
Anyway, we need good news. We have been doing quite well with coping (I think) and I don't want to go back to those first few dark days. We have a few friends that believe everything will get better and that's an awesome look but really, it's a fact at this point. She has a definite hole in the diaphragm. Her organs can definitely move up and down. Her stomach and most likely those organs connected are in her chest cavity already and it's doubtful they'll move as they're developing. Biggest thing at this point, we pray the liver stays put and does not move up. This will continue to be a good thing if her liver stays low. ....we have accepted the facts as we have them so far and continue to learn what we can expect.
Oh well, just asking for people's prayers today that things go well. This brings me alot of comfort. It's all we really have right now. ...also, I wanted to touch base that for now, I'm over being angry about all of this. None of us know the big picture here and I guess if it's not my baby, it would have to be someoneelses' and that doesn't seem right either. I guess we're dealing with this because Mikey and I are strong enough to handle this together. It sucks, it isn't an answer that I like, it's simply all I've got. Who can answer why someone deals with this pain and the young child down the street has a dumb moment and has a perfectly healthy baby? It's completely unfair to me but I at least learned a long time ago that life isn't always fair. I like to imagine that Ireland had to have me as her mother because I will fight for her, I won't wither and feel sorry for us forever, I'll accept her completely and somewhere out there is this plan that God had for us because he has some higher purpose that we just don't know about yet.
Anyway, I know that the grass isn't always greener on the other side. Everyone has problems and pain. I definitely got a wake-up call on that in the past few days. I'm just lucky enough that the people in my life that are dealing with their own troubles, deal with it in ways to be mirrored.
....okay, time to start this day. Good vibes to everyone. Prayers to my sis-in-law because she's having some big time tests going on today, too. Hopefully, they'll bring some answers so that she can hurry up and get better!!! And of course, Ireland is my beautiful girl! I'll be posting soon to let everyone know how these tests went today and maybe share some answers to my pressing questions.