the big appointment at Children's
So, we had an ultrasound, met with the new perinatologist, a tour of the NICU and surgical units, and then met with the pediatric surgeon. The ARNP at the Seattle Children's Prenatal Diagnostic Center guided us through every part, taking notes for us, and was super wonderful. Like, we were her only job all afternoon.
Short version: They're now concerned about the chest size, which is small, and that's a big deal. The fluid in the abdomen is probably not bowel related, but liver congestion. Many, many appointments and ultrasounds will follow. They can't give us a prognosis or any idea even what her chances of surviving to birth are. But they're all really concerned.
Full Story:
The ultrasound found new stuff, and was over an hour long (enough that I had to move around, because lying on my back that long makes my left leg go numb.) The peri came in about halfway through to discuss stuff with us and get more views.
New info: Baby's chest is small. It's on the very low end of normal, like at the edge between normal and not. This is very concerning, because omphalocele babies can sometimes have small lungs, and small chests, and both of those are bad. They weren't as sure that the kidneys were as perfect as my old doc was after the last u/s, but that's only a minor uncertainty. The fluid around the bowel (called ascites) does NOT appear to be from a bowel defect, because if there were something in one section, there would be dilatation in the section before it. Instead, the ascites, they think, is from hepatic congestion (that's the liver). The liver is kind of the big problem, because it's most of what's in the omphalocele, and it's about 2/3 out in the omphalocele.
I'd been thinking, this whole time, that we would really want to do everything possible to get the baby to 37 weeks. Apparently, I was partly mistaken. Of course, 37 weeks is the goal, but she said that at 32 weeks is when we'll start having really frequent conversations on the risks of prematurity vs. the risks of intrauterine fetal demise. She said we shouldn't make any plans, as far as people flying out to help Cora, or when Cora should go to her dad's, until at least 34 weeks. That's really frustrating. She said we may likely be looking at hospitalization for me, so that we can constantly monitor the baby, in order to try to get her as far along in utero as possible without risking her dying. I have no idea what we would do with Cora in that case. I'm going to talk to her dad about taking her early (because this could happen as early as late April/early May.) Apparently, 32 weeks is the "tipping point" for all this, as before 32 weeks, it's unlikely she'd survive all her issues PLUS the problems of prematurity. So we don't really have any control over the outcome until then, baby's going to do what baby's going to do.
That bit of news was really crushing and overwhelming. There's so much I need to plan for, but so much I can't plan for, and I'm a planner, dammit!
The new peri wants to see us every two weeks for now, with formal ultrasounds every 3 weeks, though she'll also be doing ultrasounds at the prenatal appointments to keep an eye on the chest and the ascites. So that means we'll be down there almost every week. I'm really not sure how DH could take that much time off from work, so I'm going to need to find someone to drive me and hang out with Cora.
On to the NICU tour. It was kinda rough. I mean, I knew what they look like, from pictures, but I just wasn't prepared for seeing it, and seeing those babies with all the tubes and wires. I broke down about halfway through.
They will probably not have her in the NICU the whole time if her chest is okay and she's breathing alright. She will probably be spending time also on the surgical units. That's a good thing, logistically, because the rooms are bigger there and have fold-out couches. For NICU parents, there are (on a different floor) sleeping "rooms" that have a twin bed and a lamp, and nothing else (and only just enough room for that bed and lamp.)
Then we met with the pediatric surgeon. We actually met with the head of surgery, I assume because he's been there the longest, and these babies are pretty rare.
He talked to us about the small chest, and about the procedures for a giant omphalocele (called "Paint and Wait"), and about how we can't know what the outcome will be, what the prognosis is, or how long anything will take, until later, mostly after she's born. He talked about the variations in the shapes of giant omphaloceles, and how it makes a difference in treating it, and about all the things that he's concerned about right now, including chromosome disorders and Beckwith-Weidemann Syndrome. The 90% survival rate is much better than the less than 50% that it used to be. But, he stressed, the 10% is mostly the babies with small lungs and chromosomal disorders. We are, apparently, not as out of the woods as I thought with regards to chromosomal problems. I thought the combined screen screened for all of that, but apparently there are a number of others that we can't know about until she's here. He, and the wonderful nurse, kept stressing that they're "very concerned" about this baby.
We won't see the surgeon(s) again until after the baby's born, but when she is, it'll be mostly whichever one of the team is on rotation that day, with the big decisions all being made by "our" surgeon. While I'm still admitted over at the hospital where I'm getting the c/s, they'll call me and keep me apprised, and I'll be able to come over (there's a special Health Sciences bus between the two, because they're partners, and so long as I am stable and stay in a wheelchair, I can go over for a few hours a day).
I think that's all. I know, it's a novel, it was really a lot to take in and very overwhelming. I wish it were better.
Short version: They're now concerned about the chest size, which is small, and that's a big deal. The fluid in the abdomen is probably not bowel related, but liver congestion. Many, many appointments and ultrasounds will follow. They can't give us a prognosis or any idea even what her chances of surviving to birth are. But they're all really concerned.
Full Story:
The ultrasound found new stuff, and was over an hour long (enough that I had to move around, because lying on my back that long makes my left leg go numb.) The peri came in about halfway through to discuss stuff with us and get more views.
New info: Baby's chest is small. It's on the very low end of normal, like at the edge between normal and not. This is very concerning, because omphalocele babies can sometimes have small lungs, and small chests, and both of those are bad. They weren't as sure that the kidneys were as perfect as my old doc was after the last u/s, but that's only a minor uncertainty. The fluid around the bowel (called ascites) does NOT appear to be from a bowel defect, because if there were something in one section, there would be dilatation in the section before it. Instead, the ascites, they think, is from hepatic congestion (that's the liver). The liver is kind of the big problem, because it's most of what's in the omphalocele, and it's about 2/3 out in the omphalocele.
I'd been thinking, this whole time, that we would really want to do everything possible to get the baby to 37 weeks. Apparently, I was partly mistaken. Of course, 37 weeks is the goal, but she said that at 32 weeks is when we'll start having really frequent conversations on the risks of prematurity vs. the risks of intrauterine fetal demise. She said we shouldn't make any plans, as far as people flying out to help Cora, or when Cora should go to her dad's, until at least 34 weeks. That's really frustrating. She said we may likely be looking at hospitalization for me, so that we can constantly monitor the baby, in order to try to get her as far along in utero as possible without risking her dying. I have no idea what we would do with Cora in that case. I'm going to talk to her dad about taking her early (because this could happen as early as late April/early May.) Apparently, 32 weeks is the "tipping point" for all this, as before 32 weeks, it's unlikely she'd survive all her issues PLUS the problems of prematurity. So we don't really have any control over the outcome until then, baby's going to do what baby's going to do.
That bit of news was really crushing and overwhelming. There's so much I need to plan for, but so much I can't plan for, and I'm a planner, dammit!
The new peri wants to see us every two weeks for now, with formal ultrasounds every 3 weeks, though she'll also be doing ultrasounds at the prenatal appointments to keep an eye on the chest and the ascites. So that means we'll be down there almost every week. I'm really not sure how DH could take that much time off from work, so I'm going to need to find someone to drive me and hang out with Cora.
On to the NICU tour. It was kinda rough. I mean, I knew what they look like, from pictures, but I just wasn't prepared for seeing it, and seeing those babies with all the tubes and wires. I broke down about halfway through.
They will probably not have her in the NICU the whole time if her chest is okay and she's breathing alright. She will probably be spending time also on the surgical units. That's a good thing, logistically, because the rooms are bigger there and have fold-out couches. For NICU parents, there are (on a different floor) sleeping "rooms" that have a twin bed and a lamp, and nothing else (and only just enough room for that bed and lamp.)
Then we met with the pediatric surgeon. We actually met with the head of surgery, I assume because he's been there the longest, and these babies are pretty rare.
He talked to us about the small chest, and about the procedures for a giant omphalocele (called "Paint and Wait"), and about how we can't know what the outcome will be, what the prognosis is, or how long anything will take, until later, mostly after she's born. He talked about the variations in the shapes of giant omphaloceles, and how it makes a difference in treating it, and about all the things that he's concerned about right now, including chromosome disorders and Beckwith-Weidemann Syndrome. The 90% survival rate is much better than the less than 50% that it used to be. But, he stressed, the 10% is mostly the babies with small lungs and chromosomal disorders. We are, apparently, not as out of the woods as I thought with regards to chromosomal problems. I thought the combined screen screened for all of that, but apparently there are a number of others that we can't know about until she's here. He, and the wonderful nurse, kept stressing that they're "very concerned" about this baby.
We won't see the surgeon(s) again until after the baby's born, but when she is, it'll be mostly whichever one of the team is on rotation that day, with the big decisions all being made by "our" surgeon. While I'm still admitted over at the hospital where I'm getting the c/s, they'll call me and keep me apprised, and I'll be able to come over (there's a special Health Sciences bus between the two, because they're partners, and so long as I am stable and stay in a wheelchair, I can go over for a few hours a day).
I think that's all. I know, it's a novel, it was really a lot to take in and very overwhelming. I wish it were better.