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!

Wake-up call

Friday, February 27

Wow. I just got woken up by a phone call from Dr. Puder in Boston (the one running the Omegaven trials). I emailed him last night, just to sort of update him on the situation and the fact that it's looking more and more like Omegaven may be our next step... and he called as early as he possibly could without being considered rude (7 AM our time).

Once again, he said that if we need to go to Boston and get Faith on Omegaven, just to let him know and he will get me in touch with the people there I need to talk to (the social worker and intake nurse). He said Tricare has paid for it in the past, so that was good news since that is what Faith will have for insurance as of the 1st of March. He explained the process a little more, too.

We would go to Boston. There would be an inpatient stay of about 48 hours (that's nothing!) and then we would stay somewhere else (he said there is hospital housing that is around $20/night but sometimes free). We would have to stay in Boston (or the area) until Faith's direct bilirubin measures less than 2. Just to give you an idea, right now it is 6.1 (which is high enough to qualify under their compassionate use guidelines!). Then we would have to go back every 2 months, or until Faith is off TPN. But he said they would work like crazy to get her off the TPN, and that they have experimental drugs for motility and stuff, too.

He thought they were crazy for bringing up the small bowel transplant, and was surprised that Dr. Soden is the one who mentioned it. He said he couldn't believe it, and that the thing with the small bowel transplants is that they don't even really work. He said he would be much more in favor of turning things around for her liver so that she can have the time to get the rest working.

SO- on my agenda today:

Talk to Dr. Partrick and Dr. Soden about what we do if feeds don't work. Ask if we can get on Omegaven here, and if we can't, let them know we're looking into our options for that as our next step.

Email the leaders of the trial in Omaha to see what they have to say.

(Oh, and go to Target and pick up my new glasses.)

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...

100...

Friday, February 20
Well, tomorrow is 100 days. Kind of depressing... I think what's worse though is that we're no closer to going home than we were two months ago. They don't exactly know what's going on, why Faith's intestines/stomach still aren't really working right. The lower part of her intestine is working fine, it's the part that they operated on that still isn't working. And since it isn't working, the stomach doesn't want to empty, because if it empties into that part of the intestine, and that part isn't working, it just comes back up. When I asked Dr. Sandoval tonight what the back-up plan is if that part of intestine doesn't start working right, he pretty much said they don't have one, but that he's optimistic that it's just a matter of time and it will wake up and start working.
Faith is really growing. It's hard to tell if it's true growth or just retained fluid... she doesn't look super swollen, but the headband that was too big on her last week is fitting this week, and her hands definitely swelled up around her thumb splints tonight... She weighed over 9 lbs tonight. As much as I want her to grow, I still hope she doesn't outgrow the clothes she has here (all her newborns) until we are ready to go home... We have lots of 0-3 month clothes at home, but I think it will be hard to have to bring them here for her to wear. Her going home outfit is 0-3 months, so hopefully she won't grow too much and it will still fit when she gets to finally go home.
Anyway, I don't have too much else to say... Like I said, no one really knows what's going on, no one has any idea when she'll be able to start eating by mouth, and no one has the slightest clue when we'll ever get to go home.

still waiting....

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!

waiting...

Wednesday, February 11

The next few days are likely to be pretty boring, since we're back to just waiting at this point for Faith to heal and show us she's ready to start eating again. She is being kept comfortable with the help of pain meds, and hopefully in the next couple of days they'll be able to cut back on those meds as she starts to feel better. All the doctors ask if I have questions, and I just remind them we've already done this part quite a few times now...

When I woke up this morning, Faith had an IV in her head, and an oxygen cannula. Apparently the IV went in pretty easily on the first stick, and must not have bothered her too much, because I never heard a thing. They had to put it in so that she could get some blood, since her hematocrit level when they checked it at 2 AM was only 22. Her oxygen saturations were dipping pretty low, too, I guess, which is why they put her back on the cannula. It makes sense though, between her low hematocrit and the pain meds, and as they cut back on the meds they should be able to get her off the oxygen really quickly (she's on a very low amount- 25cc).

When I was home last weekend, I made some cookies that are supposed to boost milk supply. They're really good, and I can justify eating 4 or 5 of them a day by telling myself it's for a good cause ;) I'm not big on chocolate chips, so I substituted white chips and added in some craisins... they are some of the yummiest cookies I've had in a long time. The cookies have brewer's yeast in them, which is really nutritious and I guess one of the key ingredients that's supposed to help boost your supply. The oatmeal is important, too. A lot of breastfeeding women eat oatmeal for breakfast every day, I try to eat as much as I can, although some days I don't eat breakfast, and when I do eat oatmeal for breakfast, it's of the instant variety, so I'm not sure it's the same thing... But it's the best I can do for now. I was reading on the brewer's yeast can that you can mix it into pretty much anything, as it's not flavored, so I tried mixing some into my oatmeal the other day. That was a horrible idea! I won't be doing that again, at least not using as much as I did. It says on the can to take 2 tbsp... I added about 1/2 tbsp to some soup today at lunch, I think that's about as much as I'll be able to mix into stuff without having it change the consistency to the point where I can't eat it.

Anyway, I don't have much else to talk about, but I have some more pictures! :)

Uncle Terry finally got a chance to come visit Faith. I think Uncle Mike is now the only local relative who hasn't had his picture taken with her... I guess he needs to come visit!

Comfy tummy time nap :)

Modeling her new headband from Aunt Amanda

Post-op update

Tuesday, February 10

What a day. I put prayer requests in to everyone I could possibly think of, every message board I post on, the radio station (K-LOVE), I put prayer requests on my Myspace and Facebook pages, and sent an unsolicited mass email to everyone in my Gmail contacts list whose name I recognized... (sorry, I'm not normally one to do that, but this was important!) We really do believe in the power of prayer though, and I know all those prayers were not in vain! If nothing else, I can say that I did have a lot more peace than I expected, just sort of a confidence that everything would work out fine. I wasn't nearly as nervous or worried as I thought I'd be, even though I think this was probably the scariest surgery she's had so far. THANK YOU so much to everyone who thought of us and prayed for us today. It means so much, and no words can say how thankful we are for all of your love and support.

I got an email from one of the friends I've made from the Calvary Chapel moms' group, and it had this Bible verse in it, that I think is absolutely perfect and totally sums things up:

"I sought the LORD, and he answered me; he delivered me from all my fears."

Psalm 34:4

I can't honestly explain how confident and unafraid I was during the surgery, but I really think this verse does a good job of it. Thanks again, Lori!

Pre-op

So, the surgery went very well. Really everything went best case scenario for pretty much the first time ever. Faith didn't need any blood, and they were able to extubate her right after the surgery with no problems at all. She still hasn't had any blood (and she didn't have any before the surgery, either), and although her hematocrit levels are a little low, they're still borderline and they're not worried about it at this point. She had a total of about 30 mL of blood loss, which isn't bad at all. She was in the OR (including pre- and post-op) for about 5 hours.

The surgeon ended up taking out about 5 cm of bowel where the dilated section joined up to the smaller section. And then they tapered about 12 cm of the dilated part so it should match up much better and hopefully will be able to work better to push things through, and finally they put the two pieces back together.

Post-op, a little pale, but resting well

They also took a liver biopsy, since they were already in there and it will give them a clearer picture of the condition of her liver than just the blood test numbers can. Dr. Partrick said her liver looks about like he'd expect it to look, kind of greenish from the elevated bilirubin, but otherwise he said it looks good. So the biopsy will basically just tell us if there is some other possible reason for the liver issues, or if it really truly is just from the TPN. We should have those results in about 48 hours. Faith also participated in another research study with the biopsy, because there are doctors here who are researching biliary atresia (which I think I may have mentioned in a previous post, they did an ultrasound on Faith to rule that out as a cause for her cholestasis) and also TPN associated liver disease. That's the third study now that she's been a part of now, although for the first one she was still on the inside. (I'm still hoping someday she can be part of a large-scale study on what causes gastroschisis, as more and more people I've talked to who've had kids with this condition DON'T fit the demographic that's previously been identified... I have theories I think they should study, but that's another post...)
We are optimistic this time that everything went well, and will continue to go well. We feel like we've come full circle finally- Dave was here for the first surgery and signed the consent for that, and he signed the consent for this surgery (I signed all the ones in between). A lot of the nurses here are the same nurses who were here the first night, or within the first few days. The first surgery was at night, all of the others have been daytime surgeries, except this one... Things went great with the actual surgery... We are just very hopeful.
Faith's wearing cloth diapers now. (Well, not right now since she's fresh back from surgery, but she did earlier today and will again tomorrow.) A friend recently gave us a bunch of diapers that I had made for them when they had their son, so we are using those for now while another friend is doing some finishing work on Faith's diapers, since I don't have my sewing machine at the hospital. So she has a nice little stash of pretty boyish diapers for now, but they fit well, and that's the part that really matters. She does have one bright pink girly diaper that I had made a LONG time ago when I was first figuring out my newborn diaper pattern. I didn't ask anyone if it was ok to use them, but I did get them all ready last night and pre-weighed them, so I know how much each individual diaper weighs when it's dry, and then we can just weigh them when we change her and figure out the difference. I figured if I have a system all worked out, there's no logical reason they can tell me she can't use them. And this gives me one more little thing that I can control, and I feel like if I have my couple of little things that I can control, it will help me let go of the big things that I really can't control, but want to.

Wearing her first cushy cloth diaper :)

I am so glad God is using the blog to touch people's lives. It does help me to think that this experience is serving a purpose for people other than just us. I really do hope that other parents of gastroschisis babies can find comfort in sharing our experiences. I hope that no one else has to go through this the way we have, but if anyone does, I hope that they'll at least have a better idea of what to expect.
Anyway, I just wanted to post quick tonight for anyone who is wondering how things went. I'll probably post again tomorrow with more updates.

Hi, my name is Raeanne, and I'm a control freak.

Monday, February 9
Today is Nathan's third birthday. It's hard to believe he's three already! It's such a bittersweet thing as the boys are getting older- it's really neat to see them develop and grow and learn so many things, but it's sad that they're not babies anymore!
Faith's surgery is tomorrow at 5:15 PM. I think we are all more nervous about this surgery, as it seems like a much more serious surgery than what she's had before. I think we all feel a little bit like this is a "last chance" of sorts too, not that there's nothing else they can do if this doesn't work, but there's nothing else good that they can do if it doesn't work. As far as I know, if this doesn't work, a g-tube will be the next step, with continuous feeds at least overnight. We really don't want that, so we are praying like crazy that this will work!
Dave, Noah, and I went to a concert Friday night. We saw Chris Tomlin, and it was easily the best concert I have ever been to. I definitely needed it after Wednesday and Thursday... Faith was super fussy and I was burned out from that and from fighting with the doctors...
I have come to the realization (again) that I have just not gotten the lesson I think God is trying to teach me from all of this. I don't think anything happens just because, everything happens for a reason, whether we figure the reason out or not... and I very firmly believe that one of the reasons this experience has happened is because God wanted me to learn that I can't control everything, as much as I'd like to. I feel like I'm in one of those V8 commercials, where someone gets thunked on the head for not eating their veggies... and God has used many things to "thunk" me, and I'm just starting to feel it.
The first thing that really woke me up to this was actually the concert. One of the first songs the opening band sang was "I am a friend of God", and at the end they went into "What a Friend we have in Jesus"... which brought me back to the blog post I did a long time ago with the words from that hymn, and how it had just popped into my head that day and the timing of it was perfect with what was going on then. Then more than once Chris Tomlin said something about giving things up to God and realizing that he's in control of all of it. Dave and I talked some in the car on the way home about how I feel like I need to be in control of everything, and how I don't even think I know how to give up trying to control things... Then at church on Sunday, it was like Rick was talking just to us. Needless to say, I think I've figured out what the lesson is. I'm still not sure if I know how to apply it... letting go is not something I do easily, especially when feeling like I am in control seems like the only thing that's kept me sane through all of this. But I'm trying. I'm trying to remember that even when I thought I was in control, really it was God all along, and every time I've forgotten that, something has happened that was totally unexpected and beyond anyone's control.
Example one- I was doing everything I could to control the outcome of my pregnancy and the way the birth would go. Then we found out about Faith's gastroschisis. Thunk! God was telling me it doesn't matter what I do "right", I'm not the one in charge of how things will turn out.
Example two- I read and researched everything about how things go for gastroschisis babies, learning everything there was to learn about it... or so I thought. Then Faith started having complications that had nothing to do with gastroschisis (like the chylothoraces), and complications that only happen to 1-2% of babies who have gastroschisis. Thunk! There's God again, reminding me that only He knows what will happen in Faith's case.
There are a bunch of other examples too... the surgery for the "obstruction", and thinking that since it went well and there wasn't an obstruction, everything would go how it was "supposed" to go and we'd go home... getting Faith up to nearly full feeds, thinking we had it made, I was doing everything right, and we were going to go home finally... thinking all we'd have to do to fix it this time was re-start the enemas, since they worked last time...
I think if I don't have the control myself, I'm giving it to the doctors, as if they can fix her on their own, when I know that it is God working through them that will make Faith get better.
So... now I realize it... I'm working on fixing it. I'm going to stick to the things I really can control, like arranging the furniture in our room (one of the nurses rearranged while we were gone... it sort of messed me up and I had to change it back!). And I'm going to let God handle the rest (or try really hard, anyway!).
Please pray for me that I'll be able to give the control to God, and stop trying to control everything myself. Please pray for Faith that this surgery will work, and she'll heal and get better. Please pray for the doctors that God will guide their hands and lead them to know what they need to do to help Faith heal.

pictures

Aunt Amy finally got to visit and hold Faith!Kelly visited too :)This was after Faith had her Colic Calm. It seems to work (it even stops the hiccups!) but it does make a mess since it's black... and the first time I changed a diaper with black poop was sort of weird... It's supposed to stain, too, but I figured out how to get the stains out :)

All dressed up :)She almost looks like she's praying...

Smiles!! :)

Bored...

Nathan got to hold Faith. I'm pretty sure Faith's thinking, "Are you really going to let him hold me?"

Sunset- one of my favorite things about where we live

A plan...

Wednesday, February 4

Sorry it's taken me a couple of days to post this. We had our care conference Monday, and Dr. Hall, Dr. Sandoval, and Dr. Partrick were all there, so finally everyone is on the same page, and we have a plan.
Dr. Sandoval came back on Saturday (I think it was Saturday). I asked him what in the world he was thinking, going on vacation when we weren't actually out of the hospital yet, and he promised he won't do it again. Faith re-started feeds Friday, at 6 mL every 3 hours, then stopped on Saturday morning because she threw up. She had still been pooping out a lot of barium, and it was very thick and pasty, like caulk. I think it was plugging her up, and so it was easier for stuff to come back up than go through.
I was going to suggest at that point that we should re-start the enemas, to help clear some of that out, but was waiting to see a doctor. Dr. Hall came in then, and asked what I thought was going on, and I told him my theory about her being stopped up, and he said we should go ahead and get an x-ray and probably re-start the enemas. The x-ray wasn't promising, it showed that she still had barium in her stomach, 3 days after the UGI. I find it very interesting and reassuring that Dr. Hall and I think along the same lines, that we think the same things before either one of us brings anything up.
Saturday afternoon feeds were re-started, and she worked up to getting 24 mL every 3 hours last night around midnight, before she started throwing up and just not tolerating them. She screamed every time we fed her yesterday, and has just really seemed like her reflux is bugging her more.
So, since she threw up quite a bit last night, they stopped feeds again, and then re-started them this morning, just doing trophic feeds of 6 mL every 3 hours, just to keep her happy and not feeling super hungry and fussy.

They also started some Maalox for her reflux, so now she's on that, IV Protonix, and Reglan for reflux (and Colic Calm- a homeopathic medicine we are trying). Other than that, she's on Ursodiol for her cholestasis, Nystatin to keep her from getting an infection w/ her Broviac, and they started her on Gentamicin today, an antibiotic to help with bacterial overgrowth in her intestines, since that is common in people with intestinal dysmotility. They'll alternate the Gentamicin with another antibiotic every other week to treat that, and when she gets her Broviac removed, we'll get her on probiotics to help increase the number of good bacteria in relation to the bad bacteria, and get her gut a little healthier.

So, Monday's meeting went pretty well, and we do have our plan now. We decided on Monday that since Faith did so well the last time we worked her up on feeds, we'd give her a chance to potentially do well again and see if it would work, but that we didn't want to wait too long or waste time, when we know what her problem is, and they think they can fix it.

Her problem is essentially that she has a section of intestine, about a 12-18 inches long, that is very dilated, and then the stuff downstream from that is still smaller than normal. The dilated section is the part right out of the stomach, so it is a part that is very important for nutritional absorption. If that section was shorter, they would consider just taking it out, but since it is longer, it wouldn't be good for her to lose that much intestine. This is a re-creation of the picture Dr. Partrick drew to show us what her intestine looks like:So, what they're going to do, since they can't just take the dilated part out, is a surgery called Tapering Enteroplasty. The next picture is my attempt at showing what they'll be doing. The black dotted line is where they'll staple the intestine, using titanium staples that will stay in forever, to make the diameter smaller. They'll put a catheter in first, to be sure they get it to the diameter they want. Then the part with the blue lines through it will come off. They'll also remove the section between the red dotted lines, where the dilated section meets up with the smaller section, because they think there may be the beginning of an atresia there that didn't fully develop into an atresia. So just to be safe, they're going to take that part out.

At the care conference, they weren't for sure going to do the surgery, but were going to go ahead and schedule it so that they could do it if they needed to. After last night, surgery is for sure, and will be on Tuesday afternoon. We would love it if they could do it sooner, but Dr. Partrick is out of town until then, so that is the soonest it can be. Faith also has low hematocrit, so she'll need another blood transfusion before the surgery, and my dad isn't coming until Friday to donate blood for her, so it actually works out pretty well to have the surgery on Tuesday, since the blood will be ready on Monday.

The goal of the surgery is to make her small intestine a more consistent size, because the dilated part isn't able to work the way it should. Once it is a more normal size, the muscles should be able to work better to move food through. The barium in her stomach still after the UGI would make you think that she has a stomach emptying problem, but Dr. Partrick thinks it is probably more to do with the fact that the dilated part of intestine is right after the stomach, and stuff just moves through there so sluggishly that the stomach can't empty as quickly as it should, since there's nowhere for the stomach contents to really go.

Hopefully, she should be able to start feeds again about 5-7 days out from surgery, and hopefully this time things will go a little better and she'll be able to work up to the big amounts and have everything working the way it should. Best case, she'll be able to work up to full feeds, taken 100% by mouth. If she isn't, our next option is to work her up to the biggest amount she can take orally, and make the rest up with TPN, provided her liver numbers continue to get better once her TPN amount is decreased. The last option, the one we want to avoid if at all possible, would be that if she can't take 100% feeds by mouth, and her liver continues to have problems from the TPN, they would put in a feeding tube and make the rest of her nutrition up with continuous feeds at night. If we had to go this route, we would probably insist on an NG tube, in hopes that we could get her up to bigger amounts without needing to get a g-tube.

We're optimistic that things will go best case scenario, and if they don't, we're hoping her liver stays fine so we can do the second option. (And, this week her direct bilirubin did go down, from 11.8 to 5.6, and her other liver function numbers got better too, which is wonderful news.) They will also be doing a liver biopsy during the surgery on Tuesday, to give a better picture of how her liver really is. I know a lot of people, especially people who already have g-tubes, would question our decision regarding preferring TPN over a g-tube... but I guess we are just afraid that doing a tube would potentially interfere with or eliminate Faith's desire to eat. Eating is the one thing that Faith has truly excelled at, to everyone's surprise and excitement, so we want to do everything we possibly can to protect that.

Please keep us in your thoughts and prayers this week as we approach the most important (and hopefully LAST!) surgery yet...