not even sure what to think

Wednesday, March 11 (technically)
I just had to post quick, it's after midnight so technically it's Wednesday...
Dr. Kinsella (the neonatologist) just came in and asked how Faith is doing. He explained that the tube they put down in fleuro this morning is bigger than any feeding tube she's ever had before (8 french) in hopes that it would be able to get further down and that it would be harder for her to vomit out. (I already knew that, since I was there when they put it in!)
Anyway, since it's apparently against the rules to let her have more than one full day comfortable and without any throw-ups, he wants to increase her feeds to 17 mL/hr and see what happens. He has said before and pretty much said again that they'd be happy with getting her to 17 mL/hr and making the rest up with TPN (not that we'd be happy or willing to settle with that, since it's only about 65% of her goal of 26 mL/hr, and in reality her goal should be increased to 27/hr based on her current weight, which makes it 63% of her goal). He said something about her not needing to be in this room anymore at that point... I think he's hinting at the "H" word- that one that rhymes with "Rome"...
I'm not letting myself go there though, and honestly even if we did get to, how much would it really matter if we're only there for a short time before leaving for Boston? 65% isn't enough for me to feel confident that her liver status will improve. I think she'd have to get to 75 or 80% before I'd feel ok about it... we'll see I guess... maybe she will prove us wrong after all, and miraculously get to full feeds or something... (but God save us if we have to go home with an NJ tube, and have to drive 45 minutes to have it put back when she pulls it out every other day!)
We'll be at 120 days, 4 months, on Friday...

a little yellower, field trip, and more info

Tuesday, March 10
We thought towards the end of last week that Faith's eyes are looking more yellow than they had been, so we knew her numbers would be different again. Her labs this week are a little worse, her direct bili is back up over 6, and her ALT (liver enzymes) went up to 325 from 299... I really hope the Boston stuff can happen quickly!
We took a field trip this morning to fleuroscopy again. I think Faith has a thing for Fleuro Room 1, she's down there at least once a week. As much as we don't want her to have a more permanent feeding tube, we don't want her to have NJ tubes put down every other day. So, we're hoping they'll decide soon to put in a G-J tube to save her some of that stress. They've said they won't even think about it for another couple of weeks, though.
We don't like the idea of tube feeds, but really until they figure out why she's not able to tolerate feeds to her stomach anymore, it's our only option. So we've come to terms with the fact that she may be on tube feeds for awhile... and realistically, she may be on a combination of tube feeds and TPN for quite awhile, since there's no magic wand to wave and suddenly make her tolerate full feeds.
I've been paying more attention to her Broviac care, since I know I'll have to take that over soon. And I've been asking more questions about everything, too, just to try and prepare myself for all of it.
I realized the other day I haven't really posted much info about the Omegaven, even though I've talked about it alot. There is a good amount of information on this website. It's not the only reason we want to go to Boston though, we are really looking for a second opinion on all of Faith's issues, and we're hoping that since there is a whole team of doctors there that specialize in issues like hers, maybe they'll have some different ideas and will be able to get things working like they should.

a little more certainty

Friday, March 6
I told Faith yesterday that it would be nice if she could just make it obvious if we were going to need to go to Boston or not... I said I wished if we were going to go, she'd just throw up or something so we'd know. Well, she listened to Mommy...
Yesterday I asked the docs on rounds if we could switch her back to oral Prevacid from the IV Protonix, since I had felt like that worked better for her. I didn't know it was going to be a gigantic dose (almost a full teaspoon)! We tried to give it last night, and she threw up about 20 cc of milk. (which shouldn't happen, considering her feeding tube is past her stomach...) Then around 2 AM, she threw up again... then this morning we tried to give her Prevacid again, and she threw up a bunch. This morning's throw-up didn't look like milk though... not sure if that's good or bad.
She's being fed at 15/hr right now, and I had asked that since we're going to Boston anyway, maybe they could just back off to 12, where she was tolerating it better with no throwing up... but they want to rule out that the Prevacid is causing it first, and confirm the placement of her tube, and just hold her at 15 and see what happens. We're going to try giving the Prevacid through her tube instead of by mouth, and hope that she tolerates it that way. (I had thought it had to go to her stomach to work.)
So we'll watch her for a day or two and see if she throws up more, and then maybe try to slowly increase her again. I told them I really don't care if she gets increased in feeds, because I don't think she'll get high enough anyway to get off the TPN, and that's what she'd have to do to rule out Boston. But it is important to try and get her feeds as high as we can, because the higher they are, the less damage is done to her liver, and since we don't know exactly how long it will take to get the Boston transfer organized, we need to do what we can to keep her liver fairly stable.
So it has become pretty apparent now that Boston is going to happen. (As long as the insurance approves it!) Please pray that the insurance approval process goes smoothly and quickly, with no denials, so we can get her to Boston, on the Omegaven, and start healing her liver!

Boston bound... maybe...

Thursday, March 5
Well, we've officially started the process of organizing a transfer to Boston. We haven't talked to Dr. Soden or Dr. Partrick since making the decision and getting things going, but we can pretty much guess how they will react, and we don't think it will be terribly positive... It's a lot of work to figure out the transfer, but we think it's the right thing to do. I've talked to the social worker and the nurse practitioner in Boston now, in addition to Dr. Puder, and filled out our intake form, and we talked to our case manager here to get her on board and working towards our goal of a timely transfer. She'll be assembling the documents they need to find out if our insurance will cover the transfer, and faxing them to the NP in Boston so they can start working on that. Then the social worker said it usually takes a couple of weeks to get the insurance approval (they deny a lot because since Boston does the Omegaven, which is experimental, it raises a red flag for insurance companies when babies transfer there). So, if all goes well (and she still needs it) we could leave for Boston by the end of the month.
I say if she still needs it because right now Faith is being fed at a rate of 15 mL/hr, which is about 58% of her goal of 26 mL/hr. They are going to hold her at 15 overnight (instead of increasing to 16 at 11, like they normally would), and increase to 16 tomorrow, and then hold her there through the weekend. 16 mL/hr would be about 62%; the idea is to get her to the highest rate she can possibly tolerate, preferrably at 75% or above, which would be about 20 mL/hr (obviously 100% is ideal, since every day that the Broviac is in increases her risk of developing a central line infection, which she's luckily not had at all so far, but can be very serious). On Monday we'll have her latest liver numbers, and we can re-evaluate the plan and how much we should continue to push her to tolerate. From what I've read, I think they have to be at 40% or less for feeds in order to qualify for Omegaven, so she'd have to stop tolerating the amount she's currently at... (although I'm waiting on confirmation on that from Boston)
So, as of right now we're unsure of whether she'll truly need to go to Boston. If she doesn't qualify for Omegaven, I'm not sure we'll go, because we can go to Omaha if she is discharged on a TPN/continuous feeds combo and work on intestinal rehab there, a lot closer to home. But, we're still going to make sure we have everything organized and set up, so that if she does need to go to Boston, we're ready for it. I think of the time when we were all set to go home, and then she stopped tolerating feeds and we had to stay, and I think that the more work we do, and the more we're set to go to Boston, the more likely it is that she'll just keep tolerating feeds and we'll end up going home instead.
I wish I would've known about intestinal rehab a month ago... I think we would've had her transferred then and it would have saved some of the strain on her liver... but hindsight is always 20/20, and I know now that if I ever read about another family going through the same struggles we've faced, I can direct them to the resources they need to get their child better.
Please pray that God will direct us in the way we should proceed, and that he would let Faith show us what she will need... if she's going to stop tolerating feeds, let it happen soon, and not get our hopes up yet again, and let us know we're making the right decision in getting her transferred to Boston...

pictures

Sleeping like a little angel... the only reason she's tolerating a hat on her head is because she had a dose of Ativan shortly before this, to replace her feeding tube after she pulled it out!Showing off new jammies she's finally big enough to wear! Her new shirt, and woolies that have become capri's now that she's grown

Happy girl :) Broviac scar. This one shouldn't show much after awhile...


Chest tube scars

Using her tongue to feel her new tooth, and showing off a new diaper cover

This picture was an accident, she wouldn't look at me... but it shows just how yellow her eyes are (the picture gets bigger if you click on it)

Faith loves her monkey! The monkey needs a name, though...

Her incision from her latest surgery... she's not liking the stitches this time, and it isn't healing very nice because of it!

Museum, playtime, and surprises!

Friday, February 27 (evening)

Well, I accomplished everything on my "to-do" list today. I spoke with both Dr. Soden and Dr. Partrick today. Dr. Soden is a nice guy. He really is. But his favorite word seems to be that yucky "T" word. We spoke for at least 10 minutes or so this afternoon, and I think he said it at least 15 times during our conversation. When he left, I really had the impression that his opinion is that Dave and I should talk about it and go to Pittsburgh for the transplant evaluation.

When Dr. Partrick came to talk to us tonight, he was much more moderate in his approach to things. He is optimistic that we will be able to get her to at least 50% enteral feeds, if not more than that, by just taking things slow with the continuous NJ tube feeds. If this is the case, and her liver numbers stay stable and/or get better, we won't have to talk about a transplant or Omegaven. He said that even if she fails this attempt at feeds, it doesn't necessarily mean total failure, and they will just take it down to whatever amount she did tolerate and send us home on a combination of continuous feeds and TPN. We felt much more optimistic after talking to him.

Yesterday we took Noah to the museum with Dave's parents and Noah's cousin, Jordan. Noah LOVES the museum, especially the dinosaurs. Next time I think we will save the dinosaurs for last, because once he's seen those, it's hard to get him interested in anything else. It's nice now that we have military ID's, we get in for free. Noah also likes spending time with Faith, he is a good big brother.

Faith has been very happy the past few days, just full of smiles for everyone! We took advantage of her good mood earlier today and spent at least an hour playing on her mat on the floor. We're working on getting her to realize she can control her arms and reach for the toys that hang over her. She seemed like she was starting to understand, before she started to be too tired and lost interest. Hopefully next time, Sheryl the PT will be able to come and give me some more pointers on how to help Faith start doing some of the things that are developmentally appropriate for her age.

For the past couple of days, I had said we should feel in Faith's mouth and see if she's getting any teeth yet, since she's about 3 1/2 months old now, and Noah got his first tooth right around 4 months. So tonight, I stuck my finger in there and was shocked to feel that Faith has her first tooth!! We think it's the bottom left tooth, and it probably came through a few days ago, based on how much of it is already through the gum.

On a much more negative note, we also got an unpleasant surprise today. Dave lost his job. They gave him the impression that he would still have a job until he leaves for basic training (which has been pushed back now until August, for the time being), and told him to come back today and be there at 8:30, and by 9:00 he had called me to tell me they let him go. Please keep us in your thoughts and prayers during this tough time, and if you know anyone who's hiring or looking for someone with 2 bachelor's degrees in Criminal Justice and Social Work, let us know!

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...