Friday, February 27, 2009
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...
Wednesday, February 25, 2009
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...
Friday, February 20, 2009
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.
Wednesday, February 18, 2009
Wednesday, February 11, 2009
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.
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
Tuesday, February 10, 2009
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.
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.
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.
Monday, February 9, 2009
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.
Wednesday, February 4, 2009
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
Tuesday, February 3, 2009
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...