Thursday, April 30, 2009

One more test!!!

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.

Wednesday, April 29, 2009

Blessed / details of the appt.

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!!!

Tuesday, April 28, 2009

At the U of U

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.

Saturday, April 25, 2009

Insurance and shower info

Yesterday, I was a bit lazy. Truth be known, I did run a few errands in the morning, got Ireland a few outfits and went through clothes that had been given to me and even hung those up....so not that lazy. If Monica or Darryl is reading this, thank you. It's amazing that you guys have truly given so much to this baby. She is to the point that we just need a crib and bedding for having our basic needs covered. Wow!, Thanks again...we really don't know how to repay you, your daughter, or granddaughter.
.....I wanted to have a thorough and honest post for anyone going through this CDH stuff. This is really why I created this blog...AND getting my personal junk out there. I called the insurance company this week to have our major dose of financial reality out in the open. My first call to customer service didn't go so well. I must of got a hold of the ditziest girl in the place...she actually giggled because she said it was funny that I needed to see if I was going to be broke. The only reason that I even said this was for the fact that there was dead silence on her end and for a minute there I wasn't sure if anyone was on the line. Finally, after explaining our situation as simply as I could, I said please let us know if we're going to be broke or not. She giggled. Said she knew that there would b e a $200.00 admittance fee once Ireland was born and gave me another number to call once she was born. I was in a decent enough mood to say that I knew she didn't think this situation was funny and that I must of come across wrong, she atleast apologized. Anywho, about 2 minutes after I hung up, I decided to call the other number she gave me...this was actually the preadmittance number on the back of our insurance card (which is blue cross blue shield federal). ...Well, this time I got ahold of a very nice lady. She expressed concern for our situation and let me know that the pregnancy should be completely covered..very good news that I'll explain later. She then let me know that Mikey and I did not have to worry about making any calls once Ireland was born, that the U and Primary Children's was very good about covering everything, since our care is from here on out pretty much coordinated among many. More good news because there will be enough to worry about without having to stop everything and get insurance approval. ...From there, she wanted to transfer me to someone that could give us more detailed information about what is covered after Ireland's birth. This took a minute because she had informed me that she'd explain our situation. Well, this guy got on there, very professional and kind, and began to explain our policy in a straightforward and detailed format. Basically, there is an admittance fee of $200, there is a surgery fee (I'm pretty sure this was what he said) of $300. Our policy covers 85% of most everything else for Ireland's care and we'll pay up to our "cap" of $5000 and insurance will take over the remaining payments for the year that may go over that amount. Wow, $5000. We atleast have a number now. We figure with the doctor having already let us know that her care will at "best case scenario" be 3 weeks....that we'll be paying our full cap. We also know that at Ireland's birth, there is usually a minimum of 10 doctors and nurses present...most of these will be sending a bill, I'm sure. I pray to God that she will continue her road of "best case scenario" because come January of next year, we will start a new cap. ...Anyway, that man was very kind. He actually said that he was sorry to give us such news but that in today's world, it was much better than having to pay for all of Ireland's care. ...This is something Mikey and I agree on already. I can't imagine those that are stuck with the bill. .....Early this week, we got our first "bill" (really what was billed to insurance) and it was $1881. This bill was simply for my initial tests and did not include the dr's billing. Thank God again for insurance, because we won't have to pay a dime of this and also, I have so many appointments (every two weeks, later it's weekly and near the due date, I hear it can be a few times a weeek), that there are bound to be plenty more of these "bills" coming our way. ....I know we live in a society that complains about insurance, us included. Mikey works hard all week and pays a pretty penny for the insurance that we do have. We have complained with the masses until this came about. That insurance man was right, this is alot of money for us and is not an easy thing to swallow, but in the bigger picture, this is something we can atleast wrap our head around. We will most likely borrow against retirement. I have called our tax guy to see if any of this can be written off but so far I haven't had a return call....I'll have to try again this coming week. If you know anything about tax rules on any of this, please email, call, or post so I can get a hold of you.
Anyway, this may all seem very depressing but if you knew how much we have wanted this little girl, it's bearable. We had actually considered in vitro fertilization at one point and that, from what I understand, would have been just as expensive, actually much more. We just really want her to heal and come home. Maybe she'll get all of this worry out of the way and become an angelic teen....:)we can hope.
Well, we have friends and family starting to ask what we need. We truly need your hope and prayers. I'm still sort of wishy-washy on the whole baby shower. One day, I really want it, the next day, I don't. My friend, Jeannie is having it for me and I've actually decided to wait until July. Probably early July because she has a ton of obligations in June and I'd rather wait until we have more information from the neonatal side of things and know our basic needs from what the social worker will suggest. In truth, we know we'll need some baby things but we'll also need food and maybe gas cards (?) for while Ireland is at the U. Give what you can or what you think is best. Remember, Ireland's due date is August 23rd. This is the day before Tristan starts school....maybe you can just call us and see if we'd like a basic meal or something...I know I've got friends that make some great breads and stuff that can last our little family a week...that would be awesome and one less thing to think about. Also, if you buy Ireland clothing, she'll most likely skip out on the entire newborn sizes. In the hospital, the babies mainly wear a diaper, graduate to socks and hats....and if we're truly lucky, she'll be able to wear a onesie depending on her care.
....well, this felt like a very technical post. It's okay. Like I said, want this to be informative and personal. I hope everyone had a good week.

Thursday, April 23, 2009

Sad stuff...don't read unless prepared for sad story

I've been busy this week working with a particular company and don't have to go in until later today. Waking up a bit early, I decided to catch up on some of the babies I keep up with on their families' blogs. So far, I've been paying attention to Kaden, Ruby and recently, Gumdrop. Well, I started with little Gumdrop's blog. He's been in the hospital for over two months and is getting pretty strong ...well, out of nowhere, his mother has also been following Kaden's story and informed us all in the blog world that he had passed away on Monday. Crazy, totally started crying. I do not know these familes at all. I simply found them searching for a few stories of babies recently born with CDH. Kaden has only been in this world for a little less than 3 weeks. I found him about the same time I found out Ireland would be born with this condition. I feel so sad for this family and in a way, maybe selfishly, for myself. It's so good to hear people and there positive outlook on how medicine has advanced and for those that say all will be fine. ...reality is, this is a hell of a thing for a baby to be born with. Kaden had a very good prognosis during his mother's pregnancy and even in the beginning. I call these blogs I read, stories. Sadly, they are so real. A mother will be laying her baby to rest tomorrow and I just wonder how the hell she'll even get out of bed that day. She will, I'm sure and in time, she'll carry a beautiful memory of the 17 days that she knew her baby. Until that time, I'll carry a special place for her in my personal prayers because she, like me, was a little older and tried for a long time to even get pregnant. It all seems so unfair.
In truth, I have tried to avoid the sad stories because I don't want to go there. I want to see all the positive things that can come from this. I still have 16 1/2 weeks to go and I feel that since this is all out of my hands, that my only option is to pray and believe that little Ireland Rose will come out fighting. Today will be a bit tougher than it has been because I feel slapped in the face again with a reality that I don't want to see...a reality that could be us. God, please don't let this happen.
I'll be chipper again here soon but today, I feel that I invested just a little time and prayer for this little soul in California and that part of me just needs to mourn with his family and honor the battle that they fought. .....on the brighter side, little Gumdrop and Ruby (my other CDH baby blogs) are doing well. Ireland is also kicking and letting me know she's in there. If she kicks or drops any lower, I believe she'll start sneaking out to get a peek of the world....not yet, please.

Wednesday, April 22, 2009

So busy

My sweet Ireland Rose is well and kicking. Her mother is simply tired. I've had a rough job to do these past few days and am too pooped to do much by the time I get home. I've (hopefully) got one more day to do this job which is entirely too taxing on anyone and then will be back to what was becoming a domestically sweet job...aka, home.
Just to update on Mikey's sis, Sarah, she's as well as can be. I have to talk to her before I post too much because that is totally up to her. I can say, send her your prayers and/or positive vibes. Do the same for us, please. Thinking of all my friends and family and how much they all mean so much to me in their own special ways....and yes, that last statement was quite 'hallmark' of me, but i meant it just the same.

Monday, April 20, 2009

Mothers and Daughters / Random Thoughts

First off, Mikey's home, sore but safe. Tristan caught our little virus and his toilet and trash can became his personal enemy. Luckily, Tristan gets sick, yacks a bit and then lets us all know he is hungry. I made him simply have chicken noodle soup, in lieu of his buffet appetite and he's well this morning. Ireland melted her dad's heart by finally letting him know for sure that she was most definitely kicking his hand. Me, I'm okay. I woke up thinking of stuff that I decided to write about this morning.
.....Part of my excitement in having a girl was the fact that I have mommy issues. As most of my close friends know, I am adopted. That happened when I was nearly 7 but I have what's called a repressed memory and have few memories of times before that. All I can say with certainty about my birth mother is that when she visited me once a week when I was in the foster system, she gave me tootsie rolls. Through records and my parents recount, I also know that she didn't want to give me up but was too sick with a mental illness to take care for me properly and the state took me from her. As for my birth father, I simply have a brief social care report and know that my husband found him through a search and he passed away not too many years ago....he was in his early 50s. For those that wonder, part of me would love to meet my birth mother and part of me is scared to death. For all of my issues, I could never imagine calling her my mom....she doesn't know me, she did not raise me, and mother means alot more than you look like me, we share blood, and I gave birth to you. This is my opinion and we could argue all day about this. It would be nice to know many things about her and of course, I'd love for her to know I'm well, that I was raised well and that my life has been tough at times and perfectly beautiful at other times. I'd like to know her medical history a bit better, I'd like to know a few other things as well....part of me would love to have a relationship and part of me has seen one too many crazy talk shows.
Anywho, the dream I have for my daughter is that I always accept her as she is and do my best to keep my expectations totally realistic for who she is....for me to remember that she is not an extension of me but a perfectly unique individual that will develop her own hopes and dreams. I hope for her to be happy and to always know who she is and who truly loves her and will support her through her ups and downs. I hope she loves me as much as I already love her.
I've felt that in my life, I've actually been fortunate. I've learned alot, some easy, some not. For those that are close to me, I've had more than my fair share of upsets. I've also had more than my fair share of criticism. Through it all, I've made just a few discoveries...atleast these apply to me. First, others can have unrealistic expectations. I don't want to be this person, it causes alot of pain and unease of who you are. There is enough to deal with in this world without having self doubts and someone else's damn expectations of who they think you are or who they believe you should be. Second, support has more than one meaning. I've often just needed someone to say I'm here to listen when you need it and to give you a hug if that is what you need. I've occassionaly needed financial help...it would have been nice to hear this is a gift or pay me back when you can.....that's all. It's very hard to ask for help in any form, you sure don't need to feel guilty or wrong. Most of the time, if you're to the point you need help, you've already learned a lesson or two at this point. (then again, if you expect hand outs every single time you turn around, you need to learn a lesson the hard way...trust me, I've had this happen too. Not neccessarily at a time I agreed with but let's just say I value what I have.) Also, on this support note, I learned to make good money and now, I'm in a place where life throws you loop and you pray that finances do not become a issue again in your life. I've already been down that road and do not want to go back. We have saved, we feel we have an umbrella...and we also know that things may happen that we've never dreamed. Third, less can be more. This applies to damn near everything besides underwear coverage in pregnancy (I don't care how cute you think you are, your bum is not when you're preggo no matter how much your man may say it's cute). More than anything (for this particular blog) it applies to advice. Unless you've been there, you just don't know. If you empathize, wonderful....maybe saying I care and am here for you would be more than appropriate. If you truly have advice, think it through. Make sure you're not referencing someone that would be hurt by you using their name, better yet, don't use a name...and if you have truly rich advice, make sure that your point is truly understood and that you can back it up, if need be, with something that can make said advice valuable to the receiver(hope that came out right). Fourth, acceptance. This probably goes right on back to my first thing I've learned, expectations. Anyway, to accept someone doesn't mean that you have to like them, it just means you accept them for who they are. You haven't been in there shoes, you don't know them. ....I personally believe that if people truly understood acceptance that the world would be a better place.
Well, believe it or not my rambling has a point....though it may be perfectly scatter-brained...for one I'm trying to respect others while getting my point across (to you or me, I'm not really sure)....not an easy task. Bottom line, I'd like my daughter and I to be close. My son and I have always been close but we've also been through alot together...we've been poor as hell when he was young and had some good times when it was just us and then when I met Mikey, we were lucky and meshed together fairly quick and with a minimum of issues. ......With having a daughter, I am just acutely aware of my relationship with my mother and of a few more mother/daughter relationships that are not exactly easy or close although each of these relationships are filled with their own brand of love. .....I just really want my daughter to be able to talk to me about anything and everything. I hope she is comfortable in her own skin with me and that she feels love, support and acceptance from me always. Whether she comes out perfectly to the norm of society or perfectly to the norm of her own unique self, I just hope I am the mother that she needs and will also want.

Sunday, April 19, 2009

A Good Sunday...thus far

All seems well with the world right now. I woke up feeling so much better. Mikey will be on his way home this afternoon. Tristan and his buddy actually let me sleep last night. And Ireland was putting on a show last night.
I really hated that Mikey wasn't here last night. Ireland sits really low and usually her kicking and squirming is low, very low. Well, last night, she must have changed positions because my tummy was moving for a good 30 to 45 minutes. Tristan and Gavin watched thinking it was "cool" and Tristan finally knew for a fact that he was feeling his little sister moving around. It was awesome. Coolest thing ever.
Well, today is supposed to be beautiful. I've opened up windows for some fresh air and am ready to plan my day. Currently, need to get Lucky, our dog, because he's outside whining as if we've left him outside forever.....so dramatic. ..........nothing eventful, which is good. I need to find out if Sarah, Mikey's sister, is doing well because I have no number for her. I've been thinking of her and just hope she's progressing in the right direction. ....Must go, hungry.

Saturday, April 18, 2009

Stomach bug

Well, this'll be short. I didn't get to go to my friend's shower but seriously had wanted to. Tristan and I had shopped Friday afternoon and everything. Apparently, my body had other things in store for me. We went to see the movie 17 again (which was predictable but I liked it just the same)...and then once asleep, I was up at 1:30 and not feeling so hot. Even after a cure all shower, I still felt like crap and had to call my friend to let her know that I wouldn't be attending. Me and the bathroom have become terrible enemies during this time...and honestly are continuing an all-out-hate relationship. .........besides this nastiness, I will be able to see my friend's baby in about 2 weeks or so. That's better anyway. She'll get a guest, I'll see a cute new baby boy and there will be gifts!!
Anyway, this is enough for now. I'm thinking tomorrow will be much better. For all those that ask, yes, Ireland kicks me constantly. She's a bundle of joy inside and seems to love it when you eat and when you talk to her. ...........Also, Mikey will be home tomorrow. I'm so glad. He's enjoying himself but he really did miss out on taking care of me today. I know that would have been a joy.

Friday, April 17, 2009

It's Friday!!!

Well, I went to bed and woke up feeling guilty about last night's post. I had actually written some pretty horrible stuff that I later came back and deleted. I hope reading last nights ravings didn't read too choppy because I was definitely a butcher with it. In a way, writing it, even if I deleted it, got it out of my system. I feel that it has helped me snap out of my negativity.
Well, thank God it's Friday. This week has actually gone by fairly quickly. I had set up chores for myself, worked yesterday and will today, and am decidedly excited to go to this shower tomorrow. ..... I've been watching my CDH babies Kaden and Ruby that I talked about on an earlier post and they are doing well and give me so much hope because their cases are so much like little Ireland's. ....by the way, I can't help but say "little" Ireland...it's a quirk and she is little. ...anyway, back to Kaden and Ruby...they've had some major butt struggles and scary days and nights but they both seem to be going down the right path. They still have a long road because if I'm following correctly neither have had the actual surgeries to correct the problems, they're just preparing the lungs to handle the surgery....but, they're proving to be strong babies.
....well, I thought I wouldn't sleep a wink. I normally feel so sad when there is this big empty spot in the bed but apparently my body was willing to overtake the bed (wherever pets weren't taking it) and sleep deeply. I hope that Mikey slept as well. In fairness, he's been so sick that he couldn't keep still and that was rough, in addition to me sleeping lower than normal in the bed trying to keep from breathing in his sickness...silly maybe but I've yet to get sick and I'm just short enough that I can still sleep comfortably by lowering my pillow a head's length.
....I'm hoping Mikey and everyone will enjoy today. It looks as if they have some lingering showers this morning. He called last night to let me know they were riding around 8-8:30 pm. (see, this is why I'm perfectly fine with them going because dang if I'd want to 4 wheel that late!!!) As for this morning, I expect a call anytime. They tend to get up fairly early to eat and then get on with the day. Good times.
....As for me, I fixed some oatmeal and hot cider. Maybe this is my craving because I've really been into this breakfast lately...it's better than the biscuits and gravy that I'd been fixing for a while there but at the same time I question my oatmeal's nutritional value when I add the amount of brown sugar and butter that I do...then again, I do have raisins in there too. We'll just call it nutritious and save the criticism for another day. I also stared down the car seat this morning that was still on the kitchen table. It really is cute. It looks so new and it's the sage color with winnie-the-pooh's on it. It is so small. I can't wait to use this. I imagine Ireland having Mikey's dark hair and either my blue eyes or Mikey's green...hope they'll be green, very appropriate with her name...plus, I only have one baby picture, being adopted as a young girl and I'd like to think she'll have enough of me in her to see.
Anyway, I need to get on with the day. I'm working and then planning on taking Tristan to dinner and a movie. We'll also shop for a baby boy gift and then Tristan has some gift cards from his Grandma and Grandpa Doss from Easter and from his Grandma Santana (Mikey's mom) for what she jokingly called his belated birthday (Tristan's b-day is in June and she did not forget last year or ever as far as we can recall). :)

Thursday, April 16, 2009

about five minutes later...

Alright, the good thing about writing/typing this truth stuff is that it gets "it"...aka, the bad stuff, out of your system. The bad thing, you sometimes realize how awful your 'truth' was. Now, I have the irresistible urge to paint my baby's room and go buy her a dozen cute outfits. This is a very good thing. ...........being crazy by the minute and I wish there was a pill for this. Pray for my sanity and for those around me to understand...and of course, my family and Ireland.

Cloudy day

Sure is hard to see that something is wrong with Ireland when she kicks as much as she has today. She has definitely been letting me know she's in there. She is also letting her daddy know that he's a favorite. I swear when he says anything loud enough for her and the world to hear, she moves around and kicks my cervix as if it's her trampoline. Mikey is going to be ridiculously wrapped around this little girl's finger.
...Well, Mikey and his buds are off to Moab today. I hope that the weather gets a bit better. It's been raining, snowing and cold. This is what they'll be going to but I'm thinking by Friday afternoon this should ease up. It had better because Mikey is just getting over whatever sickness he was holding onto. He may put on the brave face but he's been miserable and if anyone deserves a good time, it's him.
....My writing sucks today. I'm sorry for that. I've been in one of those funks today. Like I said, it's rainy and cold. On a lighter note, we have some great friends that have been giving us so many things that their granddaughter cannot use anymore...today, we received a nice car seat that looks practically new and has two bases. That's awesome. For one, beyond a few things I've made, hangars, and a candle...I've only bought a pair of booties. Sadly, all the clothes beyond a Christmas outfit my mother bought, has been from these friends....and not her oh so loving mother. I'm in this weird place where I really want things but am scared that they won't be used by my baby. This sounds awful, I know but I must be honest. I make things like the eye masks because I know she'll need to drown out the harsh lighting. I make the blankets because i know she'll have something from me to at least lay on that is soft and pretty rather than the standard issue hospital sheet.
Anyway, I'm just in a funk. Tomorrow is a new day. I actually have a baby shower to attend on Saturday and I know there is this part of me that's just jealous. I was trying to figure out what to buy her baby and the cloud just settled over me. I'm shopping for her baby and have not spent more than $10 on my own! Okay, this'll be gone by tomorrow. For one, I am truly happy for her and I know that her and her family have been excited for Mikey and I. .....plus, I'll miss Mikey all weekend. Most people see him as a jester or some crazy guy...little do they know that for me he's my perfect mate. He's a great husband and my bestest friend in the world. I really do hope he has a great weekend and that when he reads this, he doesn't cringe at who may read this little ending.
And because I don't want anyone to think I'm too terribly cynical, in my heart of hearts, I see my little Ireland Rose healing swiftly and truly being the perfect version of us that rounds out our family just right. I really do, we've wanted her for too long and she's already loved beyond measure.

Wednesday, April 15, 2009

a quickie

Just wanted to throw in my morning routine. It used to be breakfast, email, news, facebook and a few pregnancy sites that had me knowing where I was at. Now, it's breakfast, email, news, checking on Ruby at http://www.rubyhope.com/ and checking on Kaden at http://www.kadenalexkuehl.blogspot.com/, and then I'm ready to check out facebook. These two babies were found at my initial research on what we're to expect once Ireland is born. I don't know these people at all, they just share what's going on with them and it's getting me to learn all I can so that I'm not shocked and ignorant to the facts when Ireland faces this stuff. They both are having typical CDH experiences and both babies have pretty much the same symptoms of left side CDH as Ireland. Just figured if you have the time or want, these are good sites and the babies are adorable and definitely fighters.

Friends and family

I wanted to say how much all of the emails, calls and comments have made us feel that we're not going through this alone. Many of you are so far from us but simple comments and gestures are more than enough for us. We still have around 4 months of dealing with unknowns and I think there are sure to be ups and downs but between the doctor letting us know to be "cautiously optimistic" and all of our "peeps" letting us know we're being thought of and prayed for...I am personally believing Ireland is going to come out fighting so she can know everyone.
My depression has slowly lifted and I think I'm in an acceptance stage. Yesterday I made Ireland little eye masks so that when she's in the hospital they just don't throw blankets on her face to keep out the light...hopefully, they'll allow her to use them because goodness knows I can not stand a blanket on my face. (I'll try to figure out how to post a picture because if I say so myself, they're kind of cute...I even had some UofU material to coax the doctors into saying yes for these) And today, I'm ready to make her two blankets....yesterday, I had so much laundry that washing the new material had to come in last.
Mikey is sick as a dog. We're hoping it's just a 24 hour bug. I think he's done emptying his stomach and he is now just fighting a temperature. I doubt he'll work today since he's definitely feeling hot. Plus, he's got Moab tomorrow and come hell or high water, he'll be going. I'm glad he's going for those that are wondering. This is an annual trip that he and some guy friends take and I am pretty certain for those that don't know, it's the highlight of his year. They tend to go on 4 wheeling rides that I sure don't want to go on and it's just a guy thing. If I could take off for a weekend with my bestest friends, I'd go....it's just his weekend costs gas and is very cheap stay between them all...........I'm pretty sure a weekend with girl friends would cost me a decent amount because it sure wouldn't be just riding in the open country.
I love you all and wish I could just drive up for a visit!!! Maybe I'll win the lottery today and will do just that...will be certain to post if we become instant millionaires.

p.s. a few friends have emailed that they can't post a comment...just hit anonymous and then sign your name...I'm not computer saavy enough to figure out how to change this.

Tuesday, April 14, 2009

More good stuff!

Unexpectedly, the greatest doctor ever called me just a bit ago. He reiterated my amnio results and asked if I had questions. Which basically, I wanted reassurance about Children's Primary and he reminded me that hospitals are businesses and that they self promote. Also, he said that they treat this condition at least once a month and have very good statistics themselves. ....I also asked him about steroids and he said that those are mainly used on mothers that will definitely deliver sooner than they should...he doesn't see that with me and because of Ireland's condition there are many reasons why they do no good. He expanded on that note with me but it was confusing enough that I may have to ask again next appointment.
...anyway, I'm just loving this doctor and the good people that work with and for him. They're amazing and I'd make them cookies this minute if I thought they could have them.

Good News

Well, we figure we'd better take the good news when we can. The preliminary amniocentesis came back and it was all normal and the geneticist believes the full results should also be normal.
That's it!!! Yay!!!!!

It begins...

Appointments. I got my first series of appointments lined up yesterday. I didn't receive my preliminary amniocentesis results so I should get those sometime today. Anyway, in two weeks, I have my first genetic counseling meeting, a follow up with the maternal diagnostic/best head doctor ever..Dr. Silver, and then I walk over to primary children's hospital for my 1st (or rather Ireland's 1st) echo cardiogram. From what the scheduler/secretary told me, my next ultrasound will most likely be about two weeks after that, in addition to meeting with Dr. Silver and discussing results of the tests that I'll have in these next two weeks. whew, good thing I got that notebook.
Mikey and I talked about different hospitals yesterday because a few are considered leading in the CDH world. Well, for anyone that's worried, I did some research and once I ask a few questions at my next appointment, I'm pretty certain that we're sticking with the UofU/Primary Children's. If by chance, we don't get some answers that we agree with, then we've got Uof Denver and Children's Hosp of Pennsylvania on the table...insurance pending but from what I've learned, don't think that would be an issue with blue cross/blue shield. ....Anyway, in my research, I found at least one geneticist that has done major research on CDH and two of the pediatric surgeons that have also done research on how to fix the hole in the diaphragm (plus they had astounding results). Also, I found a few other names of UofU personnel, I just couldn't figure out what departments they were in....In addition to researching the doctors, I found UofU on the CHERUBS site of hospitals connected with the research and understanding of CDH...there were only 12 hospitals listed. I've learned that UofU also has the ventilation systems and ECMO (extracorporeal membrane oxygenation...machine that gives blood the oxygen it needs if ventilation doesn't work) that is commonly needed by babies with CDH. Just to let ya know, ECMO is a last resort that we hope is not needed but is important to have because so many hospitals do not have the equipment and it's also needed if Ireland is having a tough time and needs to rest while her lungs have time to heal with this machine.
Well, we made a hard decision yesterday. Mikey had to cancel our summer vacation. It really sucks because the timeshare was won at a Christmas party and we were actually given extra days. But fact is, we need to save the money that would be spent on a 7 night vacation. ...hopefully, we can throw in at least one long weekend somewhere because I don't like the thought of not having a vacation with Tristan this summer...usually, he's off with his dad and this year he opted to stay home and just have a few weeks spent with his dad in Texas. ...oh well, we'll figure something out and enjoy this summer.
As for today...which for those that don't know, I am recently unemployed...but alas, this is not the worst news. Now is a good time for it, I'm still working a few hours a week, and I probably don't need to be working a full schedule. Anyway, I promised Mikey that I'd make some blankets for Ireland. I think Mikey's been a tad worried since I haven't made anything or shopped for anything for this dream of a girl, but I'm getting there. I figure I'll go to the fabric shop today and find a few prints that I like and just make a few simple blankets. I actually want to do my first simple chenille blanket. The stuff is so incredibly soft and I think Ireland will be able to at least use my blankets in the hospital. I'll definitely have to ask for tips because I hear working with chenille can be a pain.
For those of you that were bored by that last paragraph, sorry.... I just finished a yummy bowl of oatmeal with raisins, brown sugar and butter...mmmm. Don't eat like this each morning but it really sounded good. ....and just to add a side note, I got the best text message from my brother, Phil, yesterday. He said the simplest of things and I needed it at that moment.
Hoping for a productive day, no snow tomorrow, and that everyone has a good day.

Monday, April 13, 2009

Easter and dealing with good intentions

I got a better nights sleep. Woke up around 4 (this is much better than 2 or3 in the morn!) to use the bathroom for the umpteenth time and was ready to go back to sleep...of course, Mikey was the one who touched my back and let me know he couldn't sleep. This meant I was up because for the life of me, I can't fall back asleep once something is on my mind. Mikey has had a lot to deal with. Yesterday, was the first time he had to speak about Ireland face to face with people. We've obviously been excited to know if we were having a boy or girl and had told everyone when the big day was. In turn, he got the obvious question and let them know it was a girl. He also let them know a little of what was going on and they let him know that all would be fine. .........People have the best intentions, but it is not going to be just fine. Wish it would be. Yes, modern science is amazing but when a little body is developing and has been compromised, there are major issues that will be dealt with when it is shockingly brought into this world and all of a sudden can not breathe or feel the warmth and safety that it has known since conception. ....I don't want to delve into the angry side of what we're dealing with because I do know that people are trying to make us feel better. I make a note to remember that every single time someone says something that hits me wrong, but knowing that does not make it easy. I try to imagine what on earth I'd say to someone if the roles were reversed and I really haven't a clue. I'd like to think that I'd say we're thinking of you and praying for your baby. ....If you read this blog at all, please remember to just pray for Ireland to be strong and a fighter. My pregnancy is in all intents and purposes truly fine, Mikey and I can deal with this together, and the major issues of breathing, surgeries, and our fears will not come up until Ireland graces us with her presence.
Well, on a lighter note, I enjoyed my Easter. Tristan and I went to this church held in a junior high of all places and really liked it. The only time that I felt I just might leave was when they placed a picture of a baby on these two huge screens and were preparing to perform a dedication. I just looked at Tristan, smiled and said "no way". ...It actually solicited a smile from me because in my mind, I came for comfort and felt slapped....I definitely had that feeling of "you've got to be kidding". Oh well, the baby was beautiful and it was a nice ceremony. The sermon was seperate from what I had been dealing with all week and it was just nice.
We went home afterwards to make potato salad and chocolate covered strawberries for the early dinner we were having at a friends house. Mikey was home from work soon afterwards and I got to take a small nap before we left. .....Once at the dinner, it was so nice. There were about 10 kids, including Tristan and a few older ones, and they all got to have an easter egg hunt. It was fun to watch. Dinner was simple and good. The chocolate covered strawberries were amazing. The conversations were good and fun. I didn't bring anything up with this past week and just said thank yous to the ones that hugged and congratulated us on this pregnancy. There was no need to dampen the spirits on such a good time. The friend having the dinner is definitely my bestest friend here in Utah and she knows what's been going on. If she chose to let them know once we left, I'd be okay and if she chose not to, that would be fine too. ...I just wanted to have a nice day and I did.
I am hoping for a phone call sometime today with the preliminary results of the amniocentesis. Fingers crossed for good news. I'll make time to post if I get the call today...then again my good doctor did say it may be Tuesday.

Sunday, April 12, 2009

Ireland's beginning

I'm starting this blog to keep myself sane (hopefully) and to inform everyone what is going on. Mikey suggested that I sort of keep a diary and I figure this is a good route to keep everyone else informed too.

I may write 10 times a day or not at all for days. At this point, I go from depressed to acceptance in about one second.

Well, let me start from the beginning. I found out I was pregnant the Friday before Christmas. Of course, we'd been trying for over 4 years so this was the best news in the world. Tristan has been eccstatic, I'm overjoyed and Mikey is having a dream come true. All along, I've been sort of rooting for a girl and Mikey and Tristan flip-flop from healthy baby to boy then occassionally girl. Tristan sort of saw the light when Mikey informed him that guns would be divided if there was another boy.

All along, my pregnancy has been going fine. I've felt tired but other than that just excited to be pregnant. All of my bloodwork has been great, my weight gain has been slow and healthy (of course I weighed a ton before I got pregnant), and the baby has been looking great. Then comes the day we've been waiting for. Is this a girl or boy? I can't wait to go afterwards and buy him or her something! Mikey and I felt extremely excited. Tristan kept saying he was nervous. I was giving a countdown to the time of our appointment all day. ....This was the day that I told Tristan he could come along and see the ultrasound. I was called in and Mikey and Tristan sat in chairs behind me while I layed down and exposed the baby belly. Our ultrasound/tech lady has been a gem and was gooping me up as I let her know that we were anticipating the big news the minute she knew. Well, she's just a scanning along and the baby has her legs crossed and is moving around. It seemed to me that this was taking forever but I was in a zone just watching the screen trying to find the tale-tale signs that I needed. Eventually, she says it's a girl. It's a GIRL!!! I didn't pay attention to anything else. Didn't pay attention to the techs' tone, didn't pay attention to why she kept looking around the heart, didn't pay attention to her look...nothing. I just heard that I was having a daughter. Then out of nowhere she starts talking and part of me is listening but the other part is in my own little world of happiness. Eventually, I must have come around because I did get that there was something wrong. It seems sort of like a blur now just as it did then. She began to say that she was seeing a hole and that the stomach was displaced. She used the words diaphragmatic hernia and I just wanted to leave her room and go to the bathroom (I did just drink a ton of water for the ultrasound). I left her office as Mikey and Tristan stayed behind to get a copy of the video. Having been in this office a million times, I couldn't find those damn bathrooms for the life of me and everything was blurry and just awful. A nurse finally helped me and when I got in the restroom to do my normal sample in a cup, the tears began. I somehow got it together and as I left the restroom, I was pointed to my room. Mikey and Tristan were in there and I let Tristan know that he should go sit in the waiting room for now. Thinking back, I now wonder what Tristan was thinking. He and Mikey gave me hugs and Tristan left with a hug that we were having a little girl. The nurse came in to have me weighed and to take my blood pressure. All of this was a complete blur and I just remember thinking how awful because we had always joked around...this particular nurse and I. Well, I get to the room and the minute I look at Mikey, I can't stop crying. Awful. I could control it any other time but not in his presence. We had wanted this so bad and it seemed all of a sudden to be going in the absolute wrong direction. The doctor came in, sort of gave us a quick description, measured my belly, and then left to me make me an appointment with the University of Utah (UofU). The doctor came in, said he had an appointment for Friday, which was 2 days later and asked if I had questions. Honestly, I just wanted to go home. I asked him to please write exactly what the condition was and he suggested to google.
We left the hospital and Mikey asked if I wanted anything. For some reason I wanted a shake (which I don't think I could hardly drink) but I definitely didn't want to shop. Tristan was worried about my crying and I don't think he quite grasped the situation. Mikey gave a low down to Tristan but I hardly remember the ride home. I just wanted to crawl in a hole and be absent. I did call Phil (my brother) and also, my mom. What hard calls because we knew some not so great details but were still in shock and didn't really know what to say at all. When we got home, Tristan went to be a zombie in front of the television, Mikey and I cried some more as we talked a bit and then sort of went in seperate ways to facebook our friends and start gathering additional information. At some point, Mikey and I would say we have our little Ireland Rose and isn't it wonderful....yes, it was and still is wonderful but the unknown is terribly scary. I didn't want to go in her room, didn't want to get her clothes or a room together. I just cried and cried. We cried ourselves pretty much to sleep.
The next day began early. I believe I was up at 2. My sleep has not been good. I went to facebook because it helps to see that people care but I remember thinking how can people talk to me when I am such a depressing person at the moment. Thursday was a day of research and more crying. It's ridiculous how many tears one can have. I tried to put a front up for everyone online but turned the phone off otherwise. I didn't want to see or talk to a soul. Poor Tristan watched TV all day..don't think he minded but it wasn't going to be a dream spring break...at least he had a mini vacation up until the ultrasound appointment. Mikey and I pretty much got through the longest Thursday of our lives. At some point, Mikey let me know that I really needed to call Phil and Amy. I did and it was probably good to talk to Amy because she had been through a miscarriage and probably is the person that understood the most of how I was feeling at that moment. That night, I told Mikey that I was really starting to feel angry and upset. I was tired of feeling that I was trying to make others feel better about this and that a big part of me wanted to detach myself from Ireland even though it's literally impossible and she kept moving around as if all was fine. God bless her because at the moment all is fine in her world of the womb. ....that statement may be hard for some to understand but you must realize that everyone wants to bring a healthy baby home within days of the birth...my reality is that my baby will be swept away from me the moment she is born and that she may or may not pull through this...very hard to set up a nursery, very hard to know what to say to others, very hard knowing how to even feel.
Anyway, the sky didn't fall and Friday came. This was the day of our appointment at the UofU. I called my mom that morning because she had called the day before. She left me feeling somewhat down because she believed I needed to pull myself together. In fairness, I don't think she had yet realized the severity of what congential diaphragmatic hernia (CDH) is. Anyway, I wanted to clean up and run to the store. I had read somewhere that it was a good idea to get a notebook to take notes on everything. So off to wal-mart. It took me forever just to buy a dang notebook because I wanted a girl notebook for Ireland. Silly perhaps but remember I'm having a tough time even looking at baby things. I finally found a cute notebook with a folder that was pink with green...Ireland's colors according to her mom. I decided to walk through baby things since I am now having a girl....couldn't do it...could not bring myself to buy her even a blanket so I got pink hangars and a girly smelling candle for her room. Crazy, huh? ...well, Tristan decided to stay home while Mikey and I left for the U. Once there, it was amazing how many pregnant women were in this small room for maternity diagnostics. We were both excited and scared. Very mixed emotions but glad that our information was in the system and ok with the fact that we had to wait almost an hour to see our doctor.
Well, Dr. Silver is the head professor over at the U and we were lucky enough that my original OB doctor was friends with him and got me in so soon. This appointment was apparently a consultation...we figured as much. I only had a small bout of tears before he finally came into the room to speak with us. Well, right off the bat I liked him. He shook our hands and looked right at us. He spoke clearly and simply. He explained the basics of what he knew from my file and said that he'd like for us to get an amniocentesis and ultrasound immediately if we had the time. Of course, the day was blocked for anything he needed. He explained the seriousness of the disease but gave us a bit of hope too. He said he did not like to deal in percentages when it came to life and death because each baby was like a snowflake and every condition was different...that one could look grim and come out beautifully and vice-versa. He led us to the waiting room, which was considerably less full of preggos, and said that he'd personally see to our tests because it was lunch time for the staff. Well, wouldn't ya know the nicest lady, Joe, would stay and help out. She performed my diagnostic ultrasound and also helped when the doctor came in to take a sample of my amniotic fluid (this checks for genetic disorders and takes 2 weeks to come back though I will have "preliminary" results monday or tuesday). Just to let you know, the amniocentesis was no picnic....I did not watch and Mikey said he just looked at the needle going in from the ultrasound picture...I now have a slight bruise but am thankful that I was not the statistic that had problems from this procedure. Anway, Joe the ultrasound tech was wonderful. When we were done and I was decent to leave, she actually had me lay back down because she realized that she hadn't made us a video to take home. What a lady!!!....at this time, Dr. Silver informed us that he was needed at another hospital but he'd call later to talk with me. He gave me his cell number and took mine. He also took the time to tell Joe that she should set us up to go ahead and talk with genetic counseling. ...Joe started to make calls and then let us know that if we were willing to stay an extra hour or two we could meet with the genticist...well, Mikey was wise enough to remind me that we had enough to worry about and should just wait until we get the results of the amnio tests. Joe said this was fine and gave me some numbers to make appointments later.
Lo and behold, a doctor that keeps his word. Dr. Silver called later in the afternoon to let us know how he interpreted the ultrasound thus far. Basically, the heart looks good, the liver looked down and the lung-to-head (LTH) ratio was a 1.56 (anything over 1 is considered good, below is poor). The stomach is up in the chest with the heart pushed slightly to the right (we atleast knew this part). This was all good news for CDH and considered bast-case-scenario for now. He actually apologized for taking so long to call and not having been able to go over this during our time at the U. Are you kidding me? I actually smiled that day. I felt hope! He let me know that in the next 2 to 2 1/2 months I'd be meeting with the folks at the pediatric hospital that would do echocaridiograms, mri's, detailed heart imaging and such. I'd also have to meet the genetic counselors and have another ultrasound (UT) within the next month. I'd hear my preliminary amnio results by monday or tuesday and the full details within 2 weeks. Whew...good thing I got a notebook.
Friday, that was a good day. A very good day. I facebooked my friends and started making calls. CDH sucked but I had a dr that was making me feel better and he also validated my feeling of anger and total depression...nice, needed that.
Saturday, started well. I still had the glow of the day before and was going to clean, grocery shop, maybe get something for my precious baby and take time off from researching all things CDH. I had a good talk with my mom and even my daddy. It was decided that painting an old mirrored dresser of mine was a good idea. ....well, I got some things done, Mikey and Tristan had started to cut the grass and work on the yard, then I stopped. That is all it took. I stopped. Sat down. Wondered about lunch for a minute....and the bad feelings came. Those feelings stayed the rest of the day. I teared up a few times...we wanted to go out for an Easter dinner...and well, we were going to see friends but I felt another time would be better. I do not want to be pitied and I want people to feel nothing but respect for me and hope for Ireland. It was best to go home. We watched a show together and then went to bed. Mikey and I started talking. Believe it or not, I am normally the rock in our relationship. I am the positive one. I am the one that can move an obstacle and get it done. Well, move over me because right now, that role is Mikey's. I am a crazy basket case and Mikey is the calm and positive one. He is acting as I want to. He is the one that has giving this disease to God (though he may not describe it this way) and is happy and excited for our girl...and is knowing that we can do nothing ...that this all up to how strong our Ireland fights when she is born into this world....side note, Mikey is going through hell right now. His mother has health issues, his sister is in the hospital for having no more muscle control, being terribly unhealthy and thin and well, now this. He is incredible at the moment.
And now there is today. I woke up at 3am. I can not sleep. I'm not sulking today, I just can't sleep. I get tired and if I can, I take a nap. Well, instead of staring at the ceiling or rooting around online, I decided to start this blog. Today's is definitely most likely the longest ever so that I could explain Wednesday's news to now. I feel caught up on the diary end of this.
I'll at some point learn how to post some side information that will help in understanding what CDH is and things like that. There is a website http://www.cdhsupport.org/ that I just joined that has been a wealth of information for me...it's actually a non-profit org. that is called CHERUBS. Anyway, it's something you have to join and was a pain to get into but I'll do my best to post some things I've found on there.
Well, Happy Easter. Tristan and I are going to a new church today. It's actually held in a middle school but I need this. Tristan probably does too. Mikey has to work. Anyway, being in Utah, the majority of churches are LDS and their influence is found in even the smaller non-lds churches. I have not attended anywhere in quite awhile because I have never found a comfort or even a message that fit me. Let's pray today works out. I seriously need this more now than ever. .....well, have a good one and if you kept up and read this entire post...I am amazed. I will say it's rather therapeutic.