care path summary

i wrote this summary of our care path (during pregnancy and griffin's NICU stay) for the avery's angles gastroschisis website and wanted to share it on my blog. i kept a draft of a blog post that i'd write down everything i was feeling and thinking, and everything that griffin was going through during the NICU. i haven't published it yet, and i started to read through it today and it is very, very emotional. the NICU was rough on me, but i'll dedicate another post to that later. for now, i think this is a good depiction of what my pregnancy was like, and most importantly, what the NICU was like:

I was 18 weeks pregnant when we received the gastroschisis diagnosis. My AFP levels from my 14 week blood test came back high, and this 18 week ultrasound diagnosed two things: the gastroschisis, and that we were having a boy. After the diagnosis our perinatologist, Dr. Wu (from Kaiser SF) sent us to UCSF to have another ultrasound and meet with the surgeons who would be handling our case. At 20 weeks I was seen by the UCSF pediatric/fetal surgery team. Led by Dr. Hirose, the team answered all my questions and explained the recovery process as best they could (emphasizing that you don't know anything until the baby is here). They also told me that they don't let their gastroschisis patients go past 36 weeks. After those appointments I had a very normal care-path. I was seen for ultrasounds at 24 and 28 weeks at my normal hospital (not by specialists) for regular growth scans. I saw my regular OBGYN and then started my Non-Stress Tests at 30 weeks (2x a week). At 32 weeks I had another ultrasound and appointment with my specialists and again at 34 weeks (right before they decided to induce). I had an amnio at 36 weeks 1 day to test lung maturity (we had two possibilities at that point: if the lungs weren't mature I'd get two steroid shots and be induced two days later, and if the lungs were mature then I'd be induced the next day). We got a phone call the next morning at 6:15am to say that there was a bed ready for me at the hospital in San Francisco. After two days of induction, Griffin Reed Westerman was born on January 20, 2011 at 6:42am.

I delivered vaginally, which was great, but being induced wasn't the best. Right after Griffin was born he was cleaned up, bowels wrapped, and assessed by the intensive care nursery team (my fiance, Scott, said that he counted 17 people in the room with us when I delivered). His immediate APGAR score was 2, his 5 minute score a 6, and his 10 minute score a 9. Scott went with Griffin and the team and took pictures, and then they brought him to me. After I met him he was taken to the ICN, and the surgeons came and put Griffin in a silo. All of his small intestine, and most of his large had been on the outside, but it was in perfect shape; pink and bowel shaped. That was great news to me. Later that afternoon Dr. Hirose stopped by and got more of his bowel back inside. Griffin's closure was the next day. When he was 3 days he was taken off the ventilator, and we got to hold him for the first time! When he was 7 days old he pooped! Not much happened for about a week after that. There were no set backs, and we were just waiting for his replogle to be able to come out. His replogle was set to gravity at 9 days, but then we had to put it back to suction. At 13 days Griffin started to pull out his replogle and hadn't pooped since that first poop almost a week before. At 15 days old we got to take the replogle out and start feeds! We started Griffin at 5ccs every 3 hours for the first day (by bottle), to be increased by 5ccs each day if he did well the day before. At 17 days they gave Griffin a glycerin suppository because he hadn't pooped and then he started pooping like clockwork. He received a glycerin suppository every 24 hours for about 3 days before he was pooping regularly on his own. Griffin did great with his feeds and 19 days he got to feed on demand instead of every 3 hours. At 22 days they started talking about taking out his PICC line. They said they'd wait until Monday (which would be day 25) because it's dangerous to have to remove the PICC line and then reinsert it if he still needed it. At 24 days they decided to take out the PICC line and I was told by my nurse that being in the ICN more than 7 days after the PICC line was out would be surprising. At 25 days we started talking discharge. At 26 days we were told that Griffin gained weight and if he continued to gain the next day we could take him home! I called at 5am on day 27 to see if he'd gained weight. He hadn't. We still brought a change of clothes and his car seat just in case. Scott & I got to the ICN and I just cried. I wanted him home so badly. During rounds that morning at 9am the doctors told us that they were discharging Griffin. He came home after 27 days in the ICN.