Hey guys, I started this for family and friends who are curious about how Romy is doing. I wish I had the time and energy to personally contact each of you, but I have at least 20 million family members, so I'm afraid I can't. Anyway, as of today Romy is 4 weeks and 5 days old. But for those who are curious I'll back up to the beginning.....
On December 14th of 2007, I got a phone call from my doctor saying that they found extra protein in the blood they drew on my previous visit. They said my baby might have Spina Bifida, which is a neural tube defect where the parts of the baby's spine is formed on the outside of the skin. They wanted me to come in for an ultrasound. Of course I freaked out and googled the hell out of what Spina Bifida was and how it would affect the baby. I also learned that Christopher (Lisa's son) was thought to have Spina Bifida as well, only to be born perfectly normal. That put me at ease quite a bit.
Two days later Ray and I went to have my ultrasound. As it turned out the baby didn't have Spina Bifida, they didn't know what was wrong with her really. She was severely small for her gestational age and there wasn't very much amniotic fluid surrounding her. They also said I had a bicornuate uterus, although they didn't think this had to anything to do with whatever was wrong with her. The doctor said he was sending us down to San Antonio where they had an amazing NICU (neo-natal intensive care unit). I asked why I had to be near a NICU right now. "You're going to be having this baby soon." was his reply. All hell broke loose after that. I was in tears, Ray just looked confused and the Doctor looked helpless. I was 23 weeks pregnant.
We drove down to San Antonio that afternoon and stayed the night at Grandma and Grandpa's house. I didn't sleep much and when I did, I woke up earlier than Grandpa. (which we all know is really damn early) The next morning we arrived at Wilford Hall Medical Center on Lackland Air Force Base. They once again did an ultrasound and examined me. They gave me a few things they thought could be wrong with her:
On December 14th of 2007, I got a phone call from my doctor saying that they found extra protein in the blood they drew on my previous visit. They said my baby might have Spina Bifida, which is a neural tube defect where the parts of the baby's spine is formed on the outside of the skin. They wanted me to come in for an ultrasound. Of course I freaked out and googled the hell out of what Spina Bifida was and how it would affect the baby. I also learned that Christopher (Lisa's son) was thought to have Spina Bifida as well, only to be born perfectly normal. That put me at ease quite a bit.
Two days later Ray and I went to have my ultrasound. As it turned out the baby didn't have Spina Bifida, they didn't know what was wrong with her really. She was severely small for her gestational age and there wasn't very much amniotic fluid surrounding her. They also said I had a bicornuate uterus, although they didn't think this had to anything to do with whatever was wrong with her. The doctor said he was sending us down to San Antonio where they had an amazing NICU (neo-natal intensive care unit). I asked why I had to be near a NICU right now. "You're going to be having this baby soon." was his reply. All hell broke loose after that. I was in tears, Ray just looked confused and the Doctor looked helpless. I was 23 weeks pregnant.
We drove down to San Antonio that afternoon and stayed the night at Grandma and Grandpa's house. I didn't sleep much and when I did, I woke up earlier than Grandpa. (which we all know is really damn early) The next morning we arrived at Wilford Hall Medical Center on Lackland Air Force Base. They once again did an ultrasound and examined me. They gave me a few things they thought could be wrong with her:
-Infection of the Placenta
-Mental Deficits
-Chromosonal disorders
-Pre-eclampsia
They did an amniocenthesis, (they stick a needle into the amniotic sac and pull some out to test for birth defects) but I wouldn't get the results for at least a few days. Then they told me all about pre-term babies and survival rates. Doctor Sheilds told me that they weren't sure how long my baby would live inside of my and if they delivered her she had a 20-30 percent chance of living and 10-15 percent chance that she would be normal and without any mental retardation. Then she looked me in the eye and asked me if I wanted to have the baby right then. The doctors left the room so Ray and I could talk. Ultimately we decided to ride it out. I couldn't understand why this was happening, I felt fine and I always felt the baby moving around inside of me. They admitted me and began more testing. Lisa, My Mom and my Mother-in-law began making plans to fly to San Antonio.
The Doctors began monitering the baby's heart rate twice a day. A few days after I was admitted the baby dropped her heart rate from 165 to the low 30's. She did this 3 times in the span of half an hour. The doctors came flooding into my room and had really serious faces. They didn't think the baby was going to make it much longer. They asked once again what I wanted to do. If I delivered right then they said she'd most likely have serious handicaps and probably wouldn't make it, if I waited I'd probably have a stillborn baby. Didn't sound like much of a choice to us, but I told them that I didn't want to deliver her. Instead, I prayed harder than I ever had. They gave me steroid shots to help develop her lungs a bit faster. I think that was the worst day of my life to date. My mind was racing and I felt so sad and overwhelmed, but Ray helped me hold it together somewhat and with the help of sleeping pills I fell asleep. I woke up the next morning to a nurse pressing on my belly, trying to find the baby's heartbeat. It took her a while, but she found it, and it was STRONG. My baby was hanging tough.
The Doctors began monitering the baby's heart rate twice a day. A few days after I was admitted the baby dropped her heart rate from 165 to the low 30's. She did this 3 times in the span of half an hour. The doctors came flooding into my room and had really serious faces. They didn't think the baby was going to make it much longer. They asked once again what I wanted to do. If I delivered right then they said she'd most likely have serious handicaps and probably wouldn't make it, if I waited I'd probably have a stillborn baby. Didn't sound like much of a choice to us, but I told them that I didn't want to deliver her. Instead, I prayed harder than I ever had. They gave me steroid shots to help develop her lungs a bit faster. I think that was the worst day of my life to date. My mind was racing and I felt so sad and overwhelmed, but Ray helped me hold it together somewhat and with the help of sleeping pills I fell asleep. I woke up the next morning to a nurse pressing on my belly, trying to find the baby's heartbeat. It took her a while, but she found it, and it was STRONG. My baby was hanging tough.
A few days later the testing finally revealed that I did in fact have preeclampsia. Preeclampsia is a placenta defect that prevents the baby from getting the proper nutrients and oxygen there for stunting her growth. It also made me retain water and swell up like a balloon. It made my blood pressure skyrocket and my organs swell. At that point it was managable, if it got any worse I could start having siezures or some of my organs could start failing. Luckily they didn't think that it would come to that point. The cause of Pre-eclampsia is unknown and the only cure is to deleiver the baby.The amnio test also showed that she had normal chromosones and didn't seem to have any birth defects........that was such a relief, you have no idea. So from then on it was just a waiting game. We were waiting for the baby to show signs of stress or for me to show signs of organ failure, in which case the only choice was to deliver her. Well, Romy wanted outta there.
At 6 pm on December 27th they started monitering Romy's heartrate for the evening. She seemed to be doing fine, and they were just about to unhook the moniter when her heartrate started dropping. The last time her heartrate dropped she would always immediately come back on her own, but this time her heartrate was dropping and staying in the low 30's for a few minutes at a time. At 7:00pm the doctor came in and said "It's now or never." I knew Romy had to come out and soon. They prepared me for an emergency c-section. I was 25 weeks and 3 days pregnant. At that gestational age and size they gave her a 50/50 chance of surviving and a pretty high chance of some sort of disability. It didn't matter, she had to come out to give her ANY chance at all. Ray was able to sit next to me while they performed the surgery, and let me tell you he was a nervous wreck. He was shaking and really pale.....poor guy. I didn't feel much, just a bit of pressure. I never heard her cry.
Romy Raye Schuck was born at 8:35pm. She weighed 1 pound and 3 ounces and was just under a foot long. They whisked her to the NICU to recusitate her, I didn't get to see her, but one of the doctors took a picture of her on his phone and showed her to me. He said that she was extremely active and was off to a great start:) Ray got to go in and take a few pictures, she even reached up and grabbed his finger. He's been hooked ever since. I was put on total bedrest for the next 24 hours because they put me on magnesium to try to control my blood pressure from getting any higher so I wasn't able to see her until then. Ray wheeled me in and I finally got to see my daughter. She was so tiny and had so many wires and devices all over her. She was beautiful and I was happy, but I couldn't help but to feel a little guilty. I felt like I failed her for not being able to keep her inside of me longer.
The first week was a bit of a whirlwind. The doctors and nurses were using so many unfamiliar terms, I couldn't keep up, not to mention all the beeping moniters. She had blood transfusions, got platlets,antibiotics, surfactant, a central line for all of her meds, and she was so fiesty they had to sedate her! She was put on a ventillator that pretty much took most of her breaths for her, it was this awful tube stuck down her throat and into her lungs, we couldn't hear her cry because of it.She was/is such a little fighter. Her senses were so sensitive that we couldn't touch her for a few days, and even when we did it was only for a few seconds so that we wouldn't overstimulate her. She was off the ventillator a week after she was born, which a huge feat for a baby so small, most babies her age/size are on it for at least a month. Then she was on the CPAP (continuous positive air pressure) which were these long prongs up her nose that helped keep her lungs open, she was on that for about two weeks, she kept ripping it out anyway. Now she's on a nasal cannual which just helps her out a little, she does most of the work herself. She varies between 25-30% oxygen (we breathe 21%)When she was 2 weeks old I got to change her diaper, which she hated. At 3 weeks old, I got to hold her for the first time. They picked her up and placed her inside of my sweater. It felt weird and wonderful at the same time, she felt so frail but strong....weird I know. Now she's nearing the 5 week mark. She had a blood infection that set her back a little on her oxygen, she's on 3 1/2 liters and 28% oxygen (she was on 2 1/2 liters and 25%), but she seemed to do better today, she even got as low as 21% oxygen. She now weighs 1 pound 12 ounces and is looking more and more like a baby. Her cheeks are even filling out a little. The Doctors and Nurses are pretty impressed with her. She's beaten a lot of odds so far and please pray that she continues beating odds. At babies her age and size these are the odds:
-Survival-50-60%(she's alive and kicking!)
-IVH(Brain Bleeds)-60%(she doesn't have this and it's unlikely to develop)
-Respitory Distress Syndrome-90%(she does have this, but she's getting better)
-Chronic Lung Disease-50-60%(she can still develop this, but it's not likely to be too serious)
-Cerebral Palsy(neuro problems that largely effect muscles)-40%
-Learning disabilities-70%(ranging from mild to severe)
-Retinopathy of Prematurity(weak and underdeveloped retinas that can cause vision problems/blindness)-60-70%(She has an eye exam in about a week to check for it)
-PDA(Patent Ductus Arteriosos, an open blood vessel near the heart)-20-30% (no sign of it so far!)
So we won't know the extent of the damage caused by prematurity until she gets older, but I believe she'll keep on fighting like she has been.
I will post pics soon.
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