Tuesday, December 29, 2009

My New Year's letter

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

Monday, December 7, 2009

This blog is a memorial

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. 

Thursday, December 3, 2009

Babies and blogging

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

Sunday, November 22, 2009

a Gift?


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.

Tuesday, October 13, 2009

My effort to honor Ireland



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.

Wednesday, September 30, 2009

One month

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.

Saturday, September 26, 2009

Gone but not forgotten


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............

Monday, August 31, 2009

Dear Ireland


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

Sunday, August 30, 2009

Sad news

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.

Saturday, August 29, 2009

Short update

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

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.

Friday, August 28, 2009

thought morning would never come







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!!!!

Thursday, August 27, 2009

well long night

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..











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!!!!

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..

Wednesday, August 26, 2009

PRAY

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
















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




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

Tuesday, August 25, 2009

Sucky day

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

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.

Monday, August 24, 2009

Both Blue eyes







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

Pictures


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.

Sunday, August 23, 2009

Looking into my beautiful daughters eyes
















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

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).