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.

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