Today Iggy and I met with the social worker in the Pediatric Cardiac ICU to take a tour of the unit (as well as the Neonatal ICU, which is where the baby will be immediately after he's born) and to get a little bit of a better idea of what to expect. The social worker was really nice and asked us some questions about how we were coping with things...her whole job is basically to provide emotional, and to some extent logistical, support for families of PCICU patients.
Seeing the PCICU was intense. It was pretty much what you would expect...lots of little kids and babies tethered to lots of big machines, and lots of nurses.
Our meeting today was pretty short. I was feeling really tired today and was thinking about some stressful stuff I have coming up at work this week, so I didn't have the presence of mind to ask as many questions as I probably should have. One illuminating thing the social worker did tell us was that of the kids who have undergone the hybrid procedure at UCSF, one was in the hospital for two months afterward, and another was in the hospital for seven months. That was pretty daunting, although she did say that the baby who was in the hospital for seven months was "doing great" now. I'm not sure what other issues these kids may have had, but it's definitely something I plan to bring up with the surgeon next time I talk to him. When we met with him before, he did say something about the hybrid procedure potentially involving a longer hospital stay, but seven months is just crazy.
Tomorrow I start going in for twice weekly non-stress testing. The fact that we have gotten to this point is something of an achievement, because the reason they are doing non-stress tests now is because our baby would now be viable if he had to be induced. The flip side of that is that more tests potentially mean that they could find problems which would make them want to induce. But hopefully they won't!
Our next big day of appointments is next Monday. We have a fetal echocardiogram, a growth ultrasound, and an OB appointment all scheduled for that day. Supposedly, this fetal echo should be able to give the doctors a better idea of what condition our son will be in immediately after he's born. I think it will also tell us whether we can just let him come when he's ready, or whether he'll need to be induced so that the necessary personnel can be ready for him if he's going to need immediate intervention after birth.
So, one way or another, we will be getting a lot of information this week. Here's hoping it's mostly good news.
3 weeks ago