This isn't a super recent pic, because they're all still on the camera, but it'll have to do.
I realized I haven't given a Fiona update in a really long time.
She's doing great. We've hit a snag, but it's not an insurmountable one, and all in all, especially considering how things could have gone, we are so so so lucky. Her omphalocele got almost completely covered with skin at about 2.5 months (I think?), and so we were able to stop coating it with the silvadene cream, and just wrap it, to encourage it to go in. We were able to wrap it flat really soon. The closure surgery/ies aren't any time real soon, though. Her omphalocele was/is fairly large, and the gap in the fascia is quite large and up high, like up to the sternum. The surgeon said that when they're up high like that, he prefers to wait longer, so that she can grow and have more to stretch closed over the gap. That's totally fine with us, as the omphalocele itself really barely impacts her daily life right now.
What does impact her life is, unfortunately, being 100% tube fed. Due to her reflux (caused mostly by her screwy anatomy in the abdomen) and the need for an ng tube at first, she ended up with an oral feeding aversion. We were able to nurse a bit at first, but less and less as time went on, and eventually, trying to feed her orally resulted in her screaming like we were trying to kill her. So we gave it a break for a couple of months, and then started some very beginning, really basic feeding therapy stuff, just to try to not lose ground. We knew that, until the ng tube was gone, we weren't going to make any progress, as the ng tube just made her reflux that much worse, and made swallowing pretty uncomfortable.
Usually, an ng tube (naso-gastric feeding tube) isn't used for more than a month or two, and if someone needs tube feeding for longer, then they do a g-tube (which is a tube that is put in from the outside of the belly straight into the stomach). But Fiona's case presented a pretty unique problem, because a standard g-tube wouldn't work with her anatomy. Her liver is in front of her stomach, and where they would usually place a g-tube is right where her omphalocele is! So the surgeon got together with a GI doc, and the other surgeons, and devised a way to do it. They had films, so they knew essentially where everything is in there already. And we found ONE other doc who had done a g-tube on an omphalocele baby before closure. He was all the way across the country, but we emailed him so he could give our docs some insight. They ended up putting it in way off to the side, instead of above the belly button, and they had to kind of move her stomach a bit to do so. I wonder if they are going to write this up, because they were basically inventing the procedure as they went along. They had to get permission from the hospital board to do this procedure that is otherwise a pretty routine thing!
So she finally got it a couple of weeks ago, and we're so so so pleased! She recovered fantastically, was out of the hospital after a day and a half. And it's been great since then. No more causing her pain, changing the ng tube weekly. And no more nasty tape all over her face. But most importantly, we're already making progress orally. I got about half a ml of breastmilk into her yesterday that she actually swallowed. This is huge because we were getting concerned that she'd forgotten how to swallow. We have an Occupational Therapist who comes out a few times a month who helps with all this, and we're hopeful that she'll continue to make great progress, and hopefully be rid of the g-tube in a year or two. Our biggest goal is to get her back to nursing, and we have some great concrete steps to doing that all laid out, but we know that may not happen, and we'll be happy with getting her back to taking her nutrition orally, however it happens.
Speaking of which, I'm still pumping. Seven times a day, about 35-45 minutes (with a break in the middle, so really pumping about 25min) each time. It's a drag, and I'd really love to stop. But if she never gets back to nursing, I've committed to pumping for the full two years. I'm very fortunate to be able to maintain a supply with just the pump, and I have a ton of support from my husband and my older daughter.
Ok, well, if you've read this entire very teal deer, you deserve cuteness: