baby boy and gastroschisis

We're having a boy, which is very exciting. We think we have a name picked out, but there are a lot of names I like, so we might change it.

So, we had our ultrasound appointment on Monday to check out our baby and see why my AFP results were high. Our baby has an abdominal wall defect called gastroschisis. His bowels are on the outside of his abdomen. There's a hole on the right side of his umbilical cord and his bowels are sticking out of that hole. It's a very fixable issue, so that's good, but it's fixable as long as nothing else goes wrong. Kaiser is referring us to UCSF's Medical Center for further scanning (as if the hour and a half ultrasound I had on Monday wasn't thorough enough), and we'll talk to them more about the defect. As long as nothing else is wrong they don't recommend terminating the pregnancy because of this defect, since it is fixable. After our first appointment with them I'll be closely monitored by them for the rest of the pregnancy. I'll have ultrasounds with my team at UCSF once a month until I'm somewhere around 28 weeks, at which point I'll have them about every week until they decide they need to take the baby out (the amniotic fluid can sometimes thicken the bowels, and if that starts to happen they need the baby to come out so he won't have any more issues). For some reason gastroschisis babies are totally fine until about 37 weeks and then sometimes they die. So I won't be allowed to carry to term, I'll probably have the baby between 32-36 weeks. It's been an emotional few days, and it'll be an emotional few months until we get to take our little boy home. I'll have the baby at UCSF and he'll have his surgery the day he's born. Hopefully the hole is big enough to put the bowels back in and just repair the hole, but if it isn't then it will take more surgeries. Typically these babies are in the hospital for 2 weeks to 2-3 months, and I know there's a small chance that he'll never be coming home with us, and I just can't think about that. We get to take him home from the hospital when he is able to keep down milk (instead of being fed through an IV) and is gaining weight. It's emotional and stressful and sad and Scott & I are doing the best we can to figure all of this out. We just need to focus on having a baby that's as healthy as possible and focus on the fact that babies are remarkable resilient and our little guy will be just fine. Also, we need to function as normally as possible with all of this; plan a nursery, have a baby shower, pick out little boy toys and clothes, and plan as if this baby is coming home normally just like most other babies. I need to focus on that, and live like that.

Here are some links if you want to learn more about gastroschisis or the process that Scott & I will be going through:

http://fetus.ucsfmedicalcenter.org/gastroschisis/

http://www.nlm.nih.gov/medlineplus/ency/article/000992.htm