Having some fun at the baby stores.
One of the things I hadn't really thought about before, was just how many people are going to be involved in caring for little beastie during this journey. There's my OBGYN (who I haven't even seen since the omphalocele diagnosis!), the ultrasound technicians, our perinatologist, the NICU nurses, the NICU doctors, and beastie's pediatric surgeon! Add in all the other support staff and beastie has a veritable village to make sure he or she gets the best possible care (writing about beastie in sex neutral terms is really difficult in English!).
We've known whether the little monkey is a boy or a girl since August 13, when we had the big ultrasound and found out about the omphalocele. It's been tough to keep our mouths shut, but now that we know beastie's prognosis is looking up, we're ready to share the news...
The date we found out, and smiles when we realized we were ready to share.
We are overjoyed to welcome the "new guy" to the family! Speaking of that little guy, how is he doing? Spoiler alert - he's doing great! We had another visit with the perinatologist and got to spend some time checking out what beastie was doing on the ultrasound. He gave the technician a little trouble (shaking his head "no" when she tried to take pictures of his brain), but mostly he was a good little patient. He showed off his healthy-looking heart, snacked on some amniotic fluid, and had a bit of a morning workout. Mommy can feel him flailing around in there (especially after meals), but Daddy hasn't felt a good kick yet.
The main things they are looking for at the ultrasounds include:
- Has the omphalocele changed at all?
- Are there any other visible defects that were missed before (mostly focused on the heart)?
- Is beastie growing like he should?
Beastie passed all three the best he could at this visit - the omphalocele is still small (tiny according to some of the technicians and doctors), no other visible defects yet, and he's growing normally. Now that we know about the omphalocele, the technician made sure we could pick it out on the ultrasound. Since the omphalocele was created by the skin and muscle tissue failing to close all the way to the umbilical cord, it can be a little hard to tell the difference between the two. In general, the omphalocele (the intestines) are more opaque than the umbilical cord. You can see it really well in one of the pictures from our most recent visit.
Beastie practicing his poses.
After the ultrasound and a chat with the perinatologist, we were able to go on a tour of the NICU. This was very exciting for us since the more we can be prepared and familiar with our surroundings, the easier things will be. The NICU was really full when we visited (25 babies in 26 beds!). There are 80 nurses and three doctors in the unit, so we will be in very many good hands. We talked to one of the managers and she answered lots of our questions (check out the updated Questions post!). Kaiser's NICU is very progressive in that they encourage as much parent contact as possible. Basically whatever beastie can handle, we'll be able to do (feed, change, cuddle, etc.). We also learned about the all important visitor policy. Visiting hours are 24/7 except for the nurses' shift change, but only two visitors at the bedside at a time. Plus, one of the visitors must be "banded," which means they have one of two wristbands allotted to beastie. These are non-transferable, so it boils down to visitors being Chris + 1 or Elizabeth + 1 at any given time. Visitors are also allowed to hold and care for beastie.
As if that wasn't enough information this week, we also got to have a phone call with the pediatric surgeon! She was very patient and answered all of our questions. We'll keep most of the information on the blog specific to beastie's most likely treatments, but she told us about all sizes of omphaloceles. For a small omphalocele (like beastie currently has), usually the baby has surgery one or two days after birth. Pre-surgery will be a lot like it is for adults (tummy must be empty, x-ray, IV). The surgeon will return the intestines and the protective membrane to the abdomen and sew up the closure. The stitches are dissolvable, so beastie won't have to go through stitch removal or anything like that. She also explained that they try to leave the umbilical cord on, because they've found if the umbilical cord is removed too soon the belly button doesn't form regularly - often there isn't much of one at all! Even with leaving the umbilical cord on, beastie might have an odd-looking belly button, but that would be the only visible mark.
As far as long term effects of the omphalocele and surgery, there aren't many. One that we have to keep in mind is babies with omphalocele are assumed to have malrotated intestines. Basically, the intestines are (probably) not settled in the usual space, and therefore there is higher risk of intestinal blockage. Because of this, if baby (or kid or even eventually adult beastie) has green vomiting, we have to go to the doctor right away to check. Most people can have a little bit of green vomiting and that's OK, but people with high risk of intestinal blockage should get it checked out every time.
We were overwhelmed at first by beastie's diagnosis (and all the uncertainty), but now we are more overwhelmed by the outpouring of love and support from our fabulous friends and family. Beastie is doing great so far, and we'll be keeping close tabs on him the next four months. Plus he'll be in excellent care with the surgeon and the NICU after birth.