more bad news

Tuesday, January 27
Well, we've been in the NICU for 75 days now. I still have no definitive answers in terms of what exactly is going on, or what they're going to do about it, but I can pretty much guarantee we'll be here at least another couple of weeks. I am beyond disappointed, and I know Dave is, too... but at the same time, I guess I am glad we didn't go home this weekend, because I'm not sure I would've necessarily noticed anything was wrong until Faith was really sick.
I noticed towards the end of last week that Faith was looking a lot more yellow, and that she was super tired and didn't really want to wake up to eat. I dismissed the yellow-ness as just the cholestasis, and thought maybe I was just noticing it more than I had been, and dismissed the sleepiness as exhaustion from being woken up every 2-3 hours to eat... but it turns out those things were probably signs of what was coming. I wonder, if they had checked her direct bilirubin (DB) levels at that point, what they would have been. Direct bilirubin is a different kind than the one that causes normal newborn jaundice, so they can't just put her under the lights to fix it. It is caused by the bile backing up into the bloodstream, usually as a result of something like a bile duct blockage (biliary atresia) or a gallstone... As far as we know though, Faith doesn't have either of those. It can also be an indicator of infection, which is why they're doing the full workup on her. None of those results are back yet. They did another ultrasound today, just to be sure there isn't something "easy" like the biliary atresia or a gallstone going on... no results from that yet, but I should know something in the morning. Just to put it into perspective- one source I found said that if the DB level is >3, they should put the baby on a med called Ursodiol to treat it, until it dropped below 2.5. Faith's was 5.something last week, and this week is 11.something. Her eyes are nearly as yellow as her skin...
Faith threw up around midnight last night. Not too much, but enough I guess for the surgeons to make her NPO again. I think it's harder this time for her not to be able to eat, because now she really knows what it's like to eat and have some food in her stomach... Her belly measurements were a little bit up last night too, although they're back down now. Sometime in the middle of the night, they put an NG tube down to suction her stomach and keep it empty. I think that might have helped get her belly measurements down, because she had a lot of air in her stomach before. They also did another x-ray at about 2:00 AM to compare to the one from the other day. It wasn't any better...
Since she's NPO, she's back on the TPN full force... they are cycling it, but she's getting the full amount. She's also having the fluid they get from the NG tube replaced (just with normal saline). They switched her reflux med back to IV, she had been taking oral Prevacid, but now she's back to IV Protonix, since she can't take any oral meds right now. Which also means she can't take the Ursodiol to help her cholestasis. So that sucks and is worrisome for her liver health.
I did not hear from any of the surgeons all day yesterday. I don't know where Dr. Sandoval is, but I haven't seen him since Thursday, and unfortunately it seems like if he isn't here, I don't see a surgeon at all. The good news is, Dr. Hall is back for the neonatology team, so at least there is someone here who can give me some answers (although he has to hear them from the surgeons before he can tell me anything). So he came in last night and talked to Dave and I, and just told us his understanding of what they think might be going on...
So, like I said, the increased DB level could be an indicator of infection, or gallstones or biliary atresia. So they drew blood and urine to do cultures and check for infection, and did the second ultrasound to rule out gallstones or biliary atresia. If all of those things come back negative, I'm not sure what the deal is with her liver. I don't think we got a clear answer of where they go next with that if those are all negative.
Secondly, the x-rays showed a significantly dilated section of bowel, with a lot of air. The air is actually in the bowel, which is good, because if it's just free in the abdomen, that's a bad thing. But no one is sure why that section of bowel is so swollen. She has always had that one portion pretty swollen, and then the rest of it is quite small, since not as much can get past the swollen section... but it seemed like those irrigations they had been doing really helped, since everything we fed her came out the other end, and she didn't continue to throw it all up. Tomorrow morning they are doing another Upper GI/small bowel follow-through to find out what's going on this time. They offered a few suggested options, saying that if she had a "mechanical" obstruction (where the bowel is actually blocked) they could go in and take that section out, if she had a "functional" obstruction (because of dysmotility and/or the transition from the big dilated section to the smaller stuff) they could possibly taper the sections to fit together better and make the difference less pronounced, or, if they don't really see obstruction or any reason things shouldn't just get through, that she might just not tolerate full feeds in the amount she needs to grow well. They said this means that we might possibly end up going home on a combination of oral feeds and TPN (like 60/40 or 70/30 oral feeds/TPN), or she might end up needing a g-tube put in and having continuous feeds, at least at night. Of these two options, I think I lean more towards the TPN combo, because it seems like a less permanent option than a g-tube... the TPN would require a good, secure central line to be put in, but that seems less scary to me than a tube through her abdominal wall to her stomach... Neither of these options is really anything we want though...
Please pray that her ultrasound will come back good, and that the UGI goes well tomorrow, so that maybe we can get some answers and know for sure where we are going from here!