I wanted to try and write the rest of the story from the first post. We’ll see how long these babies nap this lovely sunday afternoon. 🙂
I left off where we found out that Jack was not going to have any fingers. I think I was in shock. I felt kind of hollow about it. I knew it was all really happening, but I felt like maybe I was going to wake up from a really weird dream. The doctor walked in the ultrasound room and said, “Im very concerned for this baby… very concerned…” They did an amniocentesis to further test his genetics. The options were threefold at that point: trisomy 13, 18, or 21. All three of these would mean severe complications, possibly even fatal. I didn’t really know what questions to ask. I asked and his spine was ok – no spina bifida… no cleft palate. Also, no toes – they looked more like cauliflower than foot bones and toes.
We all joked and said that we were going to name this child “wait and see”. Every other ultrasound had good news and then bad. It was a roller coaster. The weird thing was that I felt great! This second pregnancy was much easier on me than with Lucy. I am so thankful for Lucy during this time. If Jack was my first pregnancy, I would have been a train wreck. But I had the sweetest little treasure to take care of. And she loved being needy 🙂 She was learning how to walk, talk, and rebel! But mostly, she loved to make me laugh. And when I cried, she would come over and sit with me. It was like she always knew what I needed.
The three hour drive to Indy was peaceful but heavy. The next morning we would hopefully be meeting our little boy.
8 am monday morning. We arrived for the induction. The hospital was quiet and the room was spacious. I was 2 cm dilated, 50% effaced. They gave me a pill to soften my cervix. I had to be in bed for four hours… they did this with lucy too, I didn’t think it would work and I was right. By noon they were getting ready to start me on pitocin. By 5:00 that night, I had progressed only to 4 cm, 75% effaced. The doc made the call that instead of me delivering the middle of the night, they would take me off pit and let me labor on my own through the night. I was ok with this because I was SO hungry… a grape popsicle had never tasted as good as it did that day.. but I was ok with a good meal! I was in no pain all day, but they wouldn’t let me go anywhere but the bathroom… that was kind of a drag. However, I had great company! My mom drove down and got there at about 2 pm… and of course.. my steady man was there. Quiet and dignified… ready to be there in any way that I might need. Even if that meant he had to sleep in the crazy weird recliner chair through the cold night. My mom did paint my toenails though 🙂 definitely a highlight
Every few hours I would hear the lullaby playing in the hallways that someone had their baby. I had mixed feelings… I couldn’t wait until it was playing for my baby. But how would I feel looking at my baby? Would he be cute? Would he look merely deformed? Would it be love at first sight? Would it hurt? Would it matter?
The morning came and I had not progressed at all. the Dr came and and said, “We’re gonna have a baby today ok? I’ll be back in an hour to break your water”
Jack’s head was 9.75 cm wide on the ultrasound, allowing for us to avoid a C-section. I was very happy about this, but we would deliver in the sterile operating room that was attached to the NICU “just in case” None of us knew what we were in for.
I decided that I didn’t really trust the little guy enough to not have an epidural. Since I had not had drugs with Lucy, I knew I would be able to go through with it if the drugs didn’t help. I am so glad that they did! Jack was born after 31 hours of labor sunny side up so he could see the world. He came out in one single contraction and I didn’t feel a thing.
I didn’t even recognize Seth in the operating room all dressed up! Actually, I was shocked by him and kind of wanted the crazy looking guy to not be in the room until I saw past the blue hat…haha. After Jack was born. The nurse carried him away and all I saw was his feet. They looked wild. Long and webbed. Curved upwards. I was so shocked at how easy it was. That all of the sudden 9 months of waiting was done – just like that. That now in the next room there was a baby. My baby. I was still pretty scared to see him face to face. To see my and his new reality. When they put him in my arms, he just had the cutest nose. I didn’t care at all that his head was tall or his hands and feet were all bound together – that would come later. But right then, at that moment… there was peace. He was here, he was breathing all by himself… and we did it!
After that we had the joy of calling and texting our family and friends the good news. 8 pounds 8 ounces He was the biggest baby in the NICU. In the hours and days to follow we had an amazing slew of visitors to show our newest addition to. We had at least seven surgeons, MRIs, CT scans, xrays, nurses and doctors to keep track of. Trying to get Jack to nurse/stay awake long enough to show the Dr he didn’t need a G-tube…I literally got no more than 60 min of sleep at a time those first two-three days… But the biggest meeting was yet to come: genetics.
I walked up to Jack’s bed and saw a dark haired man standing over him. He seemed calm – too calm. Most of the other doctors were hurried and a little worried about what they saw. Not this guy – He had an accent… and was difficult to understand over all the beeping in the NICU… the beeping never stopped. and it was never daylight… there was no time in the NICU. Everything blurred together. We crossed the large room to a quieter spot where we could hear one another better. He pulled out a small notepad and explained that our son has a syndrome. One of 4 possible syndromes that is genetic, but random since neither Seth or I have the features. The syndrome explains his prematurely fused skull, fused hands and feet. He didn’t say that it was Apert even though he knew. He drew out the name of the gene that was affected. He explained that depending on when in utero the mutation occurred determines which of the syndromes takes place. I lost it. I literally balled through this entire meeting. The whole thing became real. The thing I thought would not happen happened. It was weird. I was in my mind prepared for this baby to not live. prepared for him to have a large hydrocephalic head. prepared for him to need instant surgery. prepared for him to be missing fingers. I was not prepared for a life long syndrome where my child’s skeleton does not grow at the normal pace and will need multiple surgeries to allow for semi normal development/appearance. Looking back, I was grieving. Now I am not sure why. He is so strong. He is so beautiful. He is doing all the things a baby should. But then… I was broken. It was not so much “Why me” But it was “Wow..” Like God didn’t just direct us on a road less travelled… Instead, God picked us up and completely changed the direction we were headed. I see now that it is less dramatic than that.. .but that’s how it felt that day. I continued to cry the rest of that day. Every time I thought of the word “Syndrome”. As an occupational therapist, I work with kids that have rare genetic syndromes. And it’s tough. Anyway…
We had to put a feeding tube in that day because he was not gaining the weight they wanted to see. If we were home, the Dr would have said “Come back next week and we’ll check him again” but here they micromanage everything. We went home that weekend to visit with Lucy. This might have been one of the hardest things: being seperated from her. I knew she was being wonderfully cared for by our families. But it just added to the brokenness that I felt. The first day us four were home together was a true celebration that I won’t easily forget. We came back when Jack was 1 week old, and to celebrate he started feeding from a bottle and didn’t need a feeding tube anymore! After two car seat tests (3 hours each) and a bunch of running around to get a sleep apnea monitor. They finally let us leave at 9:00 pm on a friday night. We pulled into our driveway at 1:00 a.m. and crawled into our beds so grateful to be home!