Wednesday, February 18
Well, here we are a week after the last post, and pretty much in the same spot. I apologize for my lack of updates over the last week. I hope everyone had a nice Valentine's Day, I know Dave and I did, and even Faith got dressed up for it :) The people at Build-a-Bear Workshop donate animals for all the holidays; Faith got a couple at Christmas time, and they delivered a bunny for Valentine's Day. It's really nice, and sort of hard to believe, in this economy, especially since they're not just the animals, but also whole outfits along with them! Dave and I took Noah there to build an elephant around this time last year (his name is Fred and he's indispensible!) and all those accessories aren't cheap!I also got to spend a couple of days at home, we went home Sunday night and I came back here yesterday. It was really nice to sleep in a real bed, spend some time with Noah and Nathan, eat real food... And I got to go to my "hippie birth meeting", as Dave calls it, which was wonderful and so needed. It was great to see everyone after such a long time away... all the babies that were little the last time I was there were big now, and people who weren't pregnant (or barely were) are about to have babies! Then I got a little cleaning up around the house done yesterday, although there's still a lot to be done... I will probably go home again at least during the day on Saturday to try and accomplish some more.
Dave has his first drill for the National Guard this weekend, and then he leaves for basic next Wednesday. It will be hard to not have him there when we finally go home, and to not be able to keep him updated as regularly... and we've gone back and forth on whether he should push the date back until May, but it seems like it is for the best for him to go and get it over with.
So, back to Faith. After surgery she had the big tube down her nose to keep her stomach empty. After awhile, it didn't seem like much was coming up anymore, so they took it out. It must have been doing something though, because when it was out, she started throwing up. We all sort of figured it was just a matter of another day or two to let her intestines wake back up and her stomach start working, so then yesterday they tried to start feeds. She had one feed and threw up, and was just really upset and uncomfortable, so they did an abdominal x-ray to see if they could tell what was going on. On the x-ray, they could see that her stomach is a little dilated, and not emptying. So they stopped feeds and put the tube back down to decompress her stomach.
Dr. Sandoval came by earlier and explained things a little more. He said that the part of her intestine that they operated on just isn't quite ready to work yet, so it's making her stomach not want to empty into it, so her stomach is getting dilated. He also said her liver function numbers were way up again, with her direct bilirubin back at 11.8. So, her most pressing issue is getting her off the TPN so that her liver can get a break and get better. Unfortunately, since her stomach and upstream bowel (her duodenum) aren't working right, that means they can't feed her by mouth. Since it seems to be so important to get her off the TPN though for the health of her liver, we agreed to break our 'no feeding tubes' rule and they are going to be feeding her through a tube that goes down past that section. The tube that decompresses her stomach will also stay in, and when that gets better and less is coming out, they'll pull that tube and we'll try to feed her by mouth.
I really hesitated to say yes to the tube, because it feels like it opens the door for them to say that she needs a permanent feeding tube if this works... but Dr. Sandoval did say that the last thing they want to do is go back into her abdomen at this point, so the fact that we said no to the g-tube when they went for her last surgery did at least buy us time and give us the chance to get things working the right way.
So, now Faith has one tube down her nose, and one down her mouth. She was super upset for awhile, and we thought it was because of the one in her mouth... she couldn't suck on her pacifier because having the tube in there with it was making her gag... I hate for her to have negative oral stimulation :-( But, then we realized it was actually the tube in her nose, that it was coiled in the back of her throat and that's what was bothering her, so we pulled that one out temporarily to give her a chance to calm down, and they'll put it back down again in a little bit. Unfortunately, it's necessary, and they can't put them both in her nose because it would potentially occlude her breathing. I wish the tubes were little enough to put both down one nostril, but when I asked about that they said no, so they must not be able to do it that way.
Faith also has new splints for her thumbs. Her thumbs are kind of the least of her concerns at this point in terms of overall health and comfort, but they're also the one thing that has the most potential to have long-term effects if not dealt with... so she's wearing her splints now for a significant part of each day, to try and train her thumbs to be out and normal. She's started using her fingers to grasp at blankets and whatnot, but just always has her thumbs tucked in, so hopefully this will help re-train them that it's ok to be out, so that she'll have full range of motion and use of her thumbs.I think that's about it for updates right now... Since we're sort of just waiting around for things to start working, it gets a little boring and there's not as much for me to write about... Thank you to everyone for keeping us in your thoughts and prayers, please continue to pray that the surgery was the right answer, that everything will start to work, and that Faith will be able to eat normally and go home soon!