I spoke too soon...

Thursday, February 26
Well, we tried to give Faith a bottle earlier today. (Actually, Maree tried last night, Jan tried this morning at 9, and then I did at 11.) Faith threw up in the night/early morning and threw up her feeding tube, so they took it out and replaced it, but just to her stomach. It only took until the bottle I gave her at 11 (and the resulting huge throw-up and having her throw up her feeding tube again) for us to realize that feeding to her stomach just isn't going to happen right now. Even if she could eat orally, she doesn't remember how to eat from a bottle anymore. She still has the desire to have things orally, but doesn't remember how to suck right, and mostly just plays with the bottle.
So, they took her back down to fleuroscopy to have the tube placed transpylorically again; now it is 8 cm past the pylorus. She is being fed continuously at a rate of 5 mL/hr right now, and they are going to try and raise it by 1 mL/hr two times a day... if she tolerates it. Her goal for full feeds is 27 mL/hr. Her reflux seems to be worse again, they are going to add the Zantac back into her TPN, in addition to the Protonix and Reglan she is already on.
We need all the prayers and positive thoughts everyone has to spare right now. If they aren't able to get her up to full feeds and off the TPN, there really aren't a whole lot of other options and that awful "T" word will be brought up again much more seriously, and we will have to probably go to another hospital, probably either Omaha or Boston, depending where we will be more likely to be able to get her on Omegaven and hopefully save her liver.
On a slightly more positive note, Faith seems completely oblivious of everything. She has been so happy the past few days, just smiling and laughing at everything. I hope to have more smile pictures to post soon, although she seems to know what the camera's for and stops smiling and just stares at it as soon as I get it out...

Progress, and the "T" word

Wednesday, February 25

Well, I'm happy to say that some progress has been made since my last post. Faith no longer has the tube down her mouth to keep her stomach empty, and is getting 4 ml's of breastmilk per hour down by feeding tube. And, I finally got everything put away at our house, so all that's left to do there is the actual real cleaning that's been neglected for the past 5 months...
They stopped feeds on Saturday night, because her output from the OG tube (the one down her mouth) had increased, so they interpreted that as not tolerating feeds. They gave her a couple of days of rest, but her liver numbers for this week were still pretty bad (although not quite as bad as they were last week).
Over the weekend, the GI doctors came to see Faith, and for some reason they decided to mention that if things don't turn around soon for Faith, she might need to be listed for a small bowel transplant. That would mean first going to Pittsburgh to be evaluated, and then transferring to a hospital that can do a small bowel transplant (the closest one is Omaha, although if it came to that, I think we'd rather go to Boston, because at least there it would be more likely that we could get her on Omegaven for her liver). Pretty much everyone thinks it was WAY premature for them to bring up the "T" word, though. There are still a number of options that haven't been explored, not to mention Faith has pretty much acted like she has short bowel syndrome (aka "short-gut"), and not all short-gut kids have to get transplants... So we don't seriously think that will happen.
On Monday Faith went to fleuroscopy (where they do the Upper GI studies) to have them confirm the placement of her feeding tube, and advance it past the area they operated on, so that they could re-start feeds and get her off the TPN. I wish they would have taken her down there a week ago! I was looking forward to seeing it, to see what her intestines look like now that they tapered them (does that make me weird?). Well, pretty much as soon as they put the barium down her tube my spirits lifted. It was neat to see her intestines all nice and narrow and the same size, and we could see the staples where they did her tapering. And right away we could see that what they had assumed the whole time about the feeds and her intestines was completely wrong!
Assumption #1- The feeding tube was in the part of her intestine that they operated on. Which led to Assumption #2- The part they operated on wasn't working, or was actually working backwards. Assumption #3- Since the feeding tube is transpyloric, the pyloric sphincter (the opening from her stomach to her intestine) can't close all the way, so the milk they fed her through the tube could easily go backwards into the stomach, where it was being sucked out by the OG tube hooked to suction.
Well, everyone knows what they say about assumptions, and it has rung true yet again. In reality, we could see right away that the feeding tube was doubled in her stomach, so they thought it was quite a bit farther than it really was, and it actually was just barely past her stomach! I immediately got a million times happier, because suddenly everything made sense. The feeding tube was just past her stomach, so it made perfect sense that the milk would come back up the tube into her stomach that was hooked to suction! And what little bit of milk that was going through when they were doing the feeds was coming out as perfectly normal breastfed baby poop! Once I saw that, my mood changed dramatically and both Jan (the nurse) and Rose, the CA (clinical assistant), could tell that all I wanted to do was see the doctors and tell them they were wrong!
As soon as I saw Dr. Sandoval, that's what I did, and I told him I wanted the OG tube put to gravity, and that they should re-start feeds. He agreed to put it to gravity, so then Jan convinced him to just take it out. They re-started continuous feeds at 2 mL/hr through the feeding tube. Then he took some tissue samples from her rectum for them to biopsy to rule out Hirschsprung's disease.
Last night, they tried to increase her feeds to 4 mL/hr, but she got really fussy so they backed them to 3 mL/hr. Then at noon today they put them back up to 4 mL/hr, and they will continue to increase by 1 mL/hr every 24 hours. They are taking it extra slow this time to really give her intestines the chance they need to get used to working. She threw up one time last night, just a little, as Joanna was doing a diaper change and moving her around. She hasn't thrown up since then. As long as she doesn't throw up tonight, I told Dr. Sandoval today that I want to be able to try to feed her by mouth tomorrow and see what happens. If it works, we'll have them take the feeding tube out and work her back up on oral feeds.
Faith has grown quite a bit over the last couple of weeks, and is now about 9 lbs. She's starting to outgrow her newborn-sized clothes, especially her sleepers, so we brought down a bunch of her 0-3 months clothes. I really didn't want to, but it makes more sense to have her wear them here than it does for them to sit at home. I hope that she will still fit her going home outfit when that time comes...
We are hoping and praying that maybe this time feeds will work... I don't know that we'll make it home for St. Patrick's Day (the next holiday on the calendar), but we are really praying that maybe we'll be there for Easter, which to us is the next REAL holiday... that gives us 46 days...