Friday, January 30, 2009
Taking her hearing test (she passed).
Before and after of Broviac removal, short-lived as it was... (it's in the other leg now)
Hangin' out in the bouncy seat
Taking the carseat test
Sick of the hospital (and looking a little orange...)
This and the last one are from Sunday night... right before they found out her direct bili had shot up... her eyes look really yellow in this one.
Showing off the new hat Mommy made her :)
Sleeping after getting her new Broviac
I almost caught a smile this time... she's a sneaky girl and stops when the camera comes out!
Well, I stood our ground tonight with Dr. Partrick. I told him Dave and I talked, and we wouldn't consent to the tube, and he said that it is our decision, and if we want to try bolus (normal) feeds again with Reglan to help with motility, that is our choice and he'll support us in that. He brought up the thing I think is their biggest issue with wanting to do the g-tube- that it would get us home faster... it seriously is like they think they can bribe us into letting them do it, just to get us out of here. Dave and I talked about it many times between last night and tonight, and we both think that this is a chance we should take, even if it does mean a few more weeks in the hospital.
It is so frustrating, I just want to scream at the surgeons- don't they realize we want to go home a MILLION times more than they want us to go home?? But we're not going to do something invasive without really giving her a chance, knowing for sure that she can't just eat and be fine...So, feeds will re-start in the morning (5 mL every 3 hours to start with), and Reglan started tonight. We're going to work her up to full feeds, as she tolerates it, on bottles, because the surgeons are control freaks and want to know exactly how much she is getting. The docs told us before (when we were supposed to go home) that all she needs to gain is 15 g a day... so we are hoping that she tolerates feeds as well as she did last time, but that this time the Reglan will help keep her tolerating them. Please say lots of prayers that the Reglan will be the answer, and things will really work this time!
I will post again when I've had some sleep, and get some new pics posted. :)
Thursday, January 29, 2009
Just a quick post to update. I went with this morning for the Upper GI test, and saw pretty much the same thing we saw last time. The barium goes down, and then pretty much sits in this one dilated section of her small intestine, and doesn't want to keep going. The good news is, her reflux looked MUCH better this time than it did last time. Jan and I were down in radiology with Faith for around 3 hours or so. Then they came up and did additional x-rays. Finally, when they did the x-ray at the 10-hour point, the radiologist called up and said they wouldn't need to do anymore tonight, because the barium had made it all the way through. Faith has had 2 big barium poops since then.
Faith's IV came out earlier today, but that wasn't a good thing. Since she is still not eating, she needs to get her IV fluids and nutrition, so for her not to have IV access is pretty bad. Four different nurses tried at least 8 times to get a new one started; every time they'd get one, they'd go to flush it and it would blow. Then Dr. Kamath, the neonatologist, came in and tried to start one, she tried twice and couldn't get it. At that point, the NICU people gave up and called Dr. Potter to let him know. A little while later, he came up with the anesthesia attending doctor. That doc tried 3 times or so before FINALLY getting one started in her foot. After how hard it was to get it going, now she is swaddled up tightly with that foot out, and that foot is taped to a padded armboard, which is then clamped to her bed. This IV needs to last until tomorrow night, especially since there is pretty much nowhere else to poke now with how many times she was poked to get this one.
Tomorrow night they will take Faith back to the OR to have a new Broviac put in. They also want to put a feeding tube down her nose, past her stomach, into her duodenum (part of her intestine). I am going to ask to talk to Dr. Partrick (Faith's attending surgeon) tomorrow and ask him why they really think it's necessary to skip her stomach with feeds, because Dr. Potter just said it was because she was throwing up more, and that it would keep her from throwing up. I'm not sure who told them she was throwing up more, and why they didn't mention every time she's thrown up there's been a reason...
I think for now I am inclined to refuse to consent for the tube, and tell them that instead we want to try Reglan in combination with regular feeds, since we've never tried that before, and we know now from the UGI that her issues are mainly motility-related. If she fails, then I think we will think about putting a tube down, but it will go to her stomach, not her intestine. Unless she really starts throwing up, I just can't justify not feeding her as normal as possible.
Anyway, that is all I know for sure right now, other than that I am about to fall asleep! I have more to post, but it will have to wait until tomorrow.
Tuesday, January 27, 2009
Well, we've been in the NICU for 75 days now. I still have no definitive answers in terms of what exactly is going on, or what they're going to do about it, but I can pretty much guarantee we'll be here at least another couple of weeks. I am beyond disappointed, and I know Dave is, too... but at the same time, I guess I am glad we didn't go home this weekend, because I'm not sure I would've necessarily noticed anything was wrong until Faith was really sick.
I noticed towards the end of last week that Faith was looking a lot more yellow, and that she was super tired and didn't really want to wake up to eat. I dismissed the yellow-ness as just the cholestasis, and thought maybe I was just noticing it more than I had been, and dismissed the sleepiness as exhaustion from being woken up every 2-3 hours to eat... but it turns out those things were probably signs of what was coming. I wonder, if they had checked her direct bilirubin (DB) levels at that point, what they would have been. Direct bilirubin is a different kind than the one that causes normal newborn jaundice, so they can't just put her under the lights to fix it. It is caused by the bile backing up into the bloodstream, usually as a result of something like a bile duct blockage (biliary atresia) or a gallstone... As far as we know though, Faith doesn't have either of those. It can also be an indicator of infection, which is why they're doing the full workup on her. None of those results are back yet. They did another ultrasound today, just to be sure there isn't something "easy" like the biliary atresia or a gallstone going on... no results from that yet, but I should know something in the morning. Just to put it into perspective- one source I found said that if the DB level is >3, they should put the baby on a med called Ursodiol to treat it, until it dropped below 2.5. Faith's was 5.something last week, and this week is 11.something. Her eyes are nearly as yellow as her skin...
Faith threw up around midnight last night. Not too much, but enough I guess for the surgeons to make her NPO again. I think it's harder this time for her not to be able to eat, because now she really knows what it's like to eat and have some food in her stomach... Her belly measurements were a little bit up last night too, although they're back down now. Sometime in the middle of the night, they put an NG tube down to suction her stomach and keep it empty. I think that might have helped get her belly measurements down, because she had a lot of air in her stomach before. They also did another x-ray at about 2:00 AM to compare to the one from the other day. It wasn't any better...
Since she's NPO, she's back on the TPN full force... they are cycling it, but she's getting the full amount. She's also having the fluid they get from the NG tube replaced (just with normal saline). They switched her reflux med back to IV, she had been taking oral Prevacid, but now she's back to IV Protonix, since she can't take any oral meds right now. Which also means she can't take the Ursodiol to help her cholestasis. So that sucks and is worrisome for her liver health.
I did not hear from any of the surgeons all day yesterday. I don't know where Dr. Sandoval is, but I haven't seen him since Thursday, and unfortunately it seems like if he isn't here, I don't see a surgeon at all. The good news is, Dr. Hall is back for the neonatology team, so at least there is someone here who can give me some answers (although he has to hear them from the surgeons before he can tell me anything). So he came in last night and talked to Dave and I, and just told us his understanding of what they think might be going on...
So, like I said, the increased DB level could be an indicator of infection, or gallstones or biliary atresia. So they drew blood and urine to do cultures and check for infection, and did the second ultrasound to rule out gallstones or biliary atresia. If all of those things come back negative, I'm not sure what the deal is with her liver. I don't think we got a clear answer of where they go next with that if those are all negative.
Secondly, the x-rays showed a significantly dilated section of bowel, with a lot of air. The air is actually in the bowel, which is good, because if it's just free in the abdomen, that's a bad thing. But no one is sure why that section of bowel is so swollen. She has always had that one portion pretty swollen, and then the rest of it is quite small, since not as much can get past the swollen section... but it seemed like those irrigations they had been doing really helped, since everything we fed her came out the other end, and she didn't continue to throw it all up. Tomorrow morning they are doing another Upper GI/small bowel follow-through to find out what's going on this time. They offered a few suggested options, saying that if she had a "mechanical" obstruction (where the bowel is actually blocked) they could go in and take that section out, if she had a "functional" obstruction (because of dysmotility and/or the transition from the big dilated section to the smaller stuff) they could possibly taper the sections to fit together better and make the difference less pronounced, or, if they don't really see obstruction or any reason things shouldn't just get through, that she might just not tolerate full feeds in the amount she needs to grow well. They said this means that we might possibly end up going home on a combination of oral feeds and TPN (like 60/40 or 70/30 oral feeds/TPN), or she might end up needing a g-tube put in and having continuous feeds, at least at night. Of these two options, I think I lean more towards the TPN combo, because it seems like a less permanent option than a g-tube... the TPN would require a good, secure central line to be put in, but that seems less scary to me than a tube through her abdominal wall to her stomach... Neither of these options is really anything we want though...
Please pray that her ultrasound will come back good, and that the UGI goes well tomorrow, so that maybe we can get some answers and know for sure where we are going from here!
Monday, January 26, 2009
Well, we're still waiting, and I can pretty much guarantee we won't be going home in the next few days. Last night, the nurse and I thought maybe Faith's belly looked a little swollen. So the surgeons ordered an x-ray, and saw that she has a section of swollen intestine (although she always has...) and that it had quite a bit of air in it. They cut her feeds down to 30 mL every 3 hours, and are giving her IV fluids (D10) to compensate and keep her from getting dehydrated. Then her direct bilirubin (the number that has to do with the cholestasis) was more than doubled this morning, when really it should be going down since she's off the TPN and on the ursodiol medicine, and her liver enzymes were up, too. All together, the signs are pointing to a possible infection.
So, this morning they drew a bunch of labs for blood and urine cultures so that hopefully they can find out what's going on. If stuff comes back negative for infection, then they will have to look more closely at her liver and find out what's going on there.
They are talking about re-starting TPN, which I am going to fight as much as I can, since her liver is already messed up... unless they can give me a really good reason why she needs it instead of eating. I guess one of the reasons they said for cutting back her feeds was "increased emesis", but I don't know why they said that, because she really hasn't been throwing up. She threw up a couple of times the other night, but I think it had more to do with the particular batch of fortified breastmilk, because she'd had 3 bottles before that and she's had probably 10 since, with no throwing up.
Please pray for no infections, and for her liver to heal and work well!!
Saturday, January 24, 2009
Well, we aren't going home today. Faith lost weight again last night. It is super frustrating, and the neonatologist who is here today is the first one who has agreed with me that they should have expected her to lose (the dietician expected it too, but none of the other docs said they did). They said she has to have two consecutive days of gaining at least 15 grams before we can go.
I know some people will think that if they think she needs to stay, then she should stay, but a lot of their arguments are just them covering themselves in the event that we'd have to come back. They don't think that she will do good enough at home, and that we'd have to come back next week, but Dave and I think that she will do better at home, eat even more, and gain just fine. She is eating more than the minimum amounts that they want her to eat (sometimes she's even eating more than the high end of the amounts they want her to eat!), so common sense says that once her body adjusts to not having the extra fluid of the TPN in addition to eating, then she'll start gaining. We just don't understand why she can't gain at home, instead of here.
The other thing that really gets to me is that they are just SO stuck on her weight, when in reality, no one can really know how much she SHOULD weigh. She was swollen when she was born, and she was on continuous IV fluids every day of her life until 2 days ago. With the way she has swelled in the past, I think it's safe to say she probably has issues with water retention, so none of the weights that we've gotten in the past were probably truly accurate. Like, they were accurate with the extra fluid, but not what she REALLY weighs, without the fluid. And I think they are using the weight-for-age growth charts to judge her by, which wouldn't be the way to go anyway, because she's quite a bit smaller than most babies her age. Her newborn sized clothes are still pretty baggy on her. She's not even on the growth charts for length- or weight-for-age, but on the weight-for-length chart she's right around the 50th percentile. And she keeps losing weight... we just weighed her and she weighs less than she did this morning at 7:00, and she just ate 55 mL!
I just asked Joanna, our nurse, if there is possibly some other reason why she would continue to lose weight, but she said all of her tests have come back fine. She is going to look at her output records and see if maybe she is still peeing off fluid from the TPN.
Anyway, needless to say, we are very frustrated and disappointed that we are being kept here because according to them, she doesn't weigh enough, when really all along, she has probably weighed too much.
Friday, January 23, 2009
Thursday, January 22, 2009
Faith didn't eat that well last night, and she lost a little bit of weight... they said today that if she didn't eat better/more, they will have to turn the TPN back on. So I have made sure that every time she eats today she's gotten a lot of milk, and I have been waking her up to eat. Dr. Parker said that as long as she is eating well and not continuing to lose weight, they will still let her go home on Saturday, and that he is more comfortable sending her home, even though she might be "borderline", because of the fact that I have been here all the time and know what I'm talking about. Dr. Sandoval was by this morning to threaten her with TPN if she isn't a good girl who drinks her milk...
Anyway, that's about it for today so far... I think today's the last time we'll have Mary Ann for a nurse, and tonight we should have Maree, and it might be our last time with her, too. Things are falling into place for us to go home, the docs called Faith's prescriptions in to the pharmacy at home, and Dave is going to pick them up on his lunch tomorrow, since the pharmacy is near his work. He is coming down tomorrow night and bringing the carseat, so we will be able to have Faith do the carseat test, and then we will do our learning about CPR, carseats, and infant choking. The carseat came in a huge box, so we'll be able to pack a lot of stuff in it, and one of the people who refills the supplies for the nurses is going to save me some boxes tomorrow so I can start packing. It doesn't seem like we have that much here, but I know once I start packing it will be a lot. Hopefully we will be able to pack the car well enough that it will all fit!
I have to go wake Faith up to eat now, but I will post more tonight if anything happens! (And I'll try to post some pictures, too!)
This morning I rushed through my shower, because I saw the neonatology team on rounds one hall down from us while I was on my way there, and I wanted to make sure I was in the room when they came by. I got back to the room just as they got there to talk about the baby next door, and then it was time for them to talk about Faith. They said they were excited to talk about her, because she is doing so well. They said that she would be coming off the TPN today, and that one of the GI docs was supposed to come by, because we will be following up with them for Faith's cholestasis. Then they asked if we have a pediatrician at home, so I gave them Dr. Albritton's number, and they are going to call her and make sure she's comfortable taking Faith as a patient. I hope she is, because I already called this morning and scheduled her an appointment!
Last night they drew a bunch of labs, which required doing a vein stick (in her head, because she wouldn't bleed from her arm) and temporarily putting in a catheter to get a urine sample. Faith's Broviac line isn't drawing for blood anymore, for some reason, even though it flushes fine, so that's why they had to poke her. Then today she had an abdominal ultrasound. The GI docs just want to rule out anything else potentially causing the cholestasis, and have a baseline to go by for when they see her down the road.
Yesterday was the last time that we'll have Jan as a nurse. She's on vacation now and won't be back until after we go home, so I made sure to get a picture of her with Faith to put in Faith's scrapbook. (I promised her I wouldn't post it on the blog though!) I am going to try to get pictures of Faith with each of her primary nurses before we leave to go home, I think that will make a really nice page in her book.
So, I asked the neonatology team this morning when they thought we could go home. They said probably Monday. Whatever day we go home will be a great day for us, but Monday actually isn't a good day for us to leave, because Dave is going to be enlisting in the National Guard on Monday, so I told Dr. Sandoval that when he came by this afternoon, and asked if we couldn't go home this weekend instead. He said Saturday would be good for the surgeons, and I said Saturday would be great for us, so then he went and talked to neonatology, and they agreed! So, unless anything unexpected happens, we will be going home on Saturday!
Dave is coming down Friday night and we will make sure that everything that needs to be done for us to leave gets done, so we can get out of here as early as possible on Saturday. Faith will have to spend an hour in her carseat, we will have to watch some videos on stuff like infant CPR, and we'll have to learn about her meds, since we'll be giving them at home. She is on Lansoprazole (Prevacid) and Ursodiol, which is supposed to help the cholestasis. And she will be on a fat-soluble ADEK vitamin supplement, also for the cholestasis.
I can't believe after all of this, we are finally going to go home!! Tomorrow will be 10 weeks, so when we go home it will be day 72... we'll definitely have a story to tell for awhile!
Monday, January 19, 2009
So, there's been a Rotavirus outbreak in the NICU. Over the weekend they put everyone on our side of the NICU in "isolation", so the nurses and any staff that came in rooms had to gown up and wear gloves, because they got a baby in that had it. Now they've had 2 or 3 more babies catch it, so they're making parents wear gowns and gloves too, and they're closing all of the family common areas except the showers.
This is a nasty thing, Nathan and my mom had it when he was about three months old... please say prayers that we don't catch it- we don't need anything to slow us down right now!!
I have asked about the vaccine, since Faith is in the age group to be able to get that... There are people from Infectious Diseases here patrolling the unit to make sure everyone is following rules to keep it from spreading more, and one of the doctors is going to find out from them if it is ok to vaccinate the babies here who are old enough, to keep them from getting it. The problem is that it is a live virus vaccine, so there's a chance that I could get contaminated I guess and pass it on to other people... I'm not really into unnecessary shots, but I think with Faith's condition and the struggles she's already had, the benefits outweigh the risks on this one.
Thank you to everyone who is already praying for us!! Please pray that we will get to go home soon, and that we don't get this nasty bug!
Sunday, January 18, 2009
Saturday, January 17, 2009
Things are still going well! Faith threw up this morning... after they made her drink formula (Alimentum) from a bottle. She's not big on bottles, and apparently she thinks the formula sucks, too. Joanna (our nurse) called the dietician and left a message, since they're not here today, to ask if we can possibly mix the formula with breast milk and see if she takes it better. Otherwise she'll never get the 2 bottles a day they want her to have... (but I'm still not entirely convinced it's 100% necessary, so I wouldn't care if she didn't have it)
At 9:00 tonight, Faith's feeds go up to 39 mL every 3 hours. I've sort of just been feeding her whenever she wants to eat though... it's working and she's not throwing up, so I don't think anyone cares.
Noah's down this weekend, he and Dave have been here since Thursday night. We've been staying in the hospital's sleep rooms at night, since he's not allowed to spend the night in Faith's room. It has worked out well, and he's been really very good all weekend. We realized on Friday that he didn't even have any toys here... he had the rug to drive cars on, but no cars, and otherwise just some coloring stuff and movies. So, since we had to go to Walmart anyway, we made sure to get him some cars while we were there. He tries so hard to be helpful with Faith, and it's really cute. When she cries, he says, "It's ok, baby Faith. Don't cry, baby Faith." And he finds her stuffed animals and pacifiers and brings them to whoever is holding her, and says, "Baby Faith wants this!" and you have to take whatever it is, or he will keep saying it over and over. He even shared one of his new trucks with her.
Thursday, January 15, 2009
Feeds are at 24 mL every 3 hours now, and will go up to 27 mL tonight. "Full feeds" is 57 mL every 3 hours, so we are almost halfway there! Tomorrow morning we'll be more than halfway! :)
Really at this point, the numbers don't matter much because she's only breastfeeding... I think I will probably start weighing her before and after to get an idea of how much milk she's actually getting, but I've heard that it's not super accurate, so I'm not in a huge rush to do that. I'm still pumping before I feed her, just to get the milk to let down and get past the foremilk, and that way the milk is already flowing when I go to latch her on, which helps to convince her she should eat. She's gotten way better at it though, we still use the nipple shield once in awhile when she gets super frustrated and won't stay latched, and it really helps, but most of the time we don't need it and she eats great. I don't really have a clue how much she's getting, I sort of just count the swallows, and give her like 5 minutes or so of good active nursing, based on the fact that it takes me about 5 minutes to pump the amount she's getting now. And that really isn't super accurate, because I know that babies are better at getting the milk out than pumps are, so she may actually be getting more than her 24 mL's. I'm not too worried though because she is tolerating it well, no throwing up or anything.
Our nurse today mentioned to Dr. Parker, the neonatologist, about Faith sleeping through her 3 AM feeding, and whether that was ok... he said he thinks it's probably fine, but he's never worked up to full feeds just breastfeeding before, so he doesn't really know how it will work. I guess we're pretty good at doing things they've never done before... I might try a bottle at some point today just to see what she does, but I hesitate because the last bottle she took, she threw up the entire feed. She's not very good at the bottle, even the fancy-schmancy bottles we got for her- she gulps a ton and I think she just gets way too much air, so it doesn't want to stay down. But, maybe since she's better at nursing now, she'll be better at the bottle... Maybe when Dave gets here tonight I'll have him give her one.
So that's about it... her potassium was really low the past couple of days, but they gave her some through her Broviac to get her back up to normal. I guess it had been high in the past, so they lowered the amount she has in her TPN, and never changed it back or something... They tried to tell me at first that it was because of her vomiting, but she hasn't been hardly at all, so I didn't believe that. She actually just threw up one little one yesterday morning, and a little one last night, and then one little one this morning. And she's not throwing up her feeds, which is great, and she's pooping and everything... she's doing everything she's supposed to do, so maybe this time will be it and we really will go home soon!
Tuesday, January 13, 2009
Faith is two months old today. Feeds are going about as well as can be expected... I guess the positive side of that is that she is still eating! She is nursing pretty well, although she is still very tired during the day and has a hard time waking up to eat. She is getting 12 mL every 3 hours now, and that will increase to 15 mL at midnight.
She's still throwing up at least once or twice a day, but I started to notice yesterday that she would throw up for sure when she had her Erythromycin if she hadn't eaten about 10-15 minutes before. Then today she threw up her noon feeding, when she had her medicine about 15-20 minutes before she started eating... So I started to think that maybe the Erythro was doing more harm than good and mentioned that to Sarah, our nurse today, so she told Dr. Potter our theory and Dr. Potter discontinued the Erythromycin. So, we will see if that helps her throw up less. We had Sarah for the first time in 7 weeks or so today. It is sort of strange, the longer we are here, the more we are having nurses we haven't had since the beginning. It's kind of nice though, because we had wanted a lot of these nurses for our primary team, and now we finally get to have them. Faith seems to be feeling much better lately. Her heartrate hasn't gone into the 200's in a few days, even when she's mad. It has been staying down around 130-140 when she's awake, and in the 120's or sometimes even lower when she's asleep. I took pictures earlier of the spots where Faith's chest tubes were; I realized I never had before. Her surgery incision is healing, but starting to get a little irritated from her diaper and the waist of her pants, so we have some gauze over it now to keep it protected. She has some sores on her butt from the enemas too, but they gave us some really good barrier cream to use on it that seems to help a lot. They're only doing the enemas once a day now, at 11:00 PM since that is the one she tolerated the best, and they're only using 30 mL of the medicine now instead of 60. She is already sleeping through the night! I don't know if it will stay the same when we get home, but I hope so! She usually has quite a long stretch of calm awake time starting around 6:00 or 6:30 at night, dozing off and on, but for the most part awake and happy, until we do her enema at 11:00 and then get her in her pajamas, do her midnight feed, and then she's down for the night and doesn't wake up usually until around 8:00 AM! Last night she did wake up around 3:00 and cried once or twice, so I got up to pump and feed her, but by the time I got to the chair to sit and pump, she was already back asleep. Then she was up around 5:30 AM and was pretty mad, so the nurse came in and did her stuff she needed to do, and then Faith went right back to sleep again. And usually after she's up at 8:00 in the morning, she goes back to sleep until around 11:00 AM.
Faith can hold her pacifier in her mouth!
Noah is getting so old, learning so many things. It's hard for us as a family to be separated right now, but we are so thankful that my parents have been able to help us so much. I don't know what we would have done without their help. And I think it's been great for both boys to get to spend so much time together, they are both learning so much from each other. I think it's awesome that my mom is able to spend so much time with them, teaching them so many great new things. We will definitely have to think of something nice to do for them when we get home!
Anyway, thank you everyone for keeping us in your thoughts and prayers. Please pray that everything continues to go well, so that we can all be home together soon!
Saturday, January 10, 2009
Friday, January 9, 2009
Faith's belly, almost all healed! The place in the middle will be her "belly button".
Thursday, January 8, 2009
Someone mentioned in a comment that Faith is starting to look a little dark... if you think her skin is looking dark, you should see her pee! Yes, Faith is starting to show signs of needing to be off the TPN, but the docs are watching her levels very closely, and unfortunately until she gets to full feeds, it's a necessary evil. The good news is, Dr. Partrick said that any liver damage she might end up with from the many weeks of TPN will most likely reverse as soon as she's off of it.
The past few days have been more of the same, waiting for her to be ready to eat. Mentally, she is more than ready... she is so hungry and you can really tell every now and then. Physically, her gut just isn't quite ready yet. But, the water/medicine that they're flushing her with for the enemas has started to come all the way through and out the other end- she's consistently throwing up afterwards, and it's almost all water- so that makes me think that maybe things are cleared up and next time they try to feed her it will work.
Dr. Partrick is talking about trying to feed her again in the next couple of days, most likely it will be trophic feeds again (the super small amounts). As soon as she is up to an amount that she could take by bottle or breast, I intend to tell the doctors no more tubes! I figure they've tried tube feedings so many times now, and they've never worked, so what would it hurt to try to feed her like a normal baby for once? Maybe if we stopped treating her like a sick baby, she would get better...
Faith is growing up... she holds her head pretty well now, and she will track whoever she is looking at. Tuesday evening she sat on my lap in the recliner, with the Boppy behind her, and was staring at me (she always looks at my hairline, I think because of the contrast) and I kept moving my head out of her range of vision and she was turning her head to follow me. And, I got my first real smiles! Real, on purpose, completely awake smiles! That was pretty nice. :)
I went home Tuesday night and spent yesterday working on getting our house together. I have our bedroom completely set up and cleaned up now. I got Faith's clothes put away, got our bed made with our new bedding set, got the bed rail put on my side of the bed so I won't have to worry about Faith falling out, got a sheet put on her crib mattress, and took her pretty bumper pad over to my parents' house to get washed. Dave and I are going home again on Saturday to work on the house some more. I am hoping that if we get the house all put together and ready for her to come home, she'll decide to get well.
She has gained 13 ounces over the last 3 days... Last night she weighed 7 lbs, 7 oz. No one is sure right now if that's a good thing or a bad thing. Last night she was looking pretty swollen (more swollen than Dave and I had seen her since she had her chest tubes in), so they gave her some Lasix and she pee'd a lot of it off. She still looks a little puffy to me today, but not as bad... They are going to start cycling her TPN, 20 hours on and 4 hours off, like they do with her lipids, and that should help keep her from swelling too. I'm wondering if maybe she really is just growing. I want her to grow, but I also can't help being worried when it's so much, so fast... it makes me wonder what the docs are missing, especially after it took them a week to realize the chylothorax thing was going on. And I don't want her to grow so much that she won't fit all of the clothes we've gotten for her when she gets home!
I have some new pictures to post, but I will do them later tonight probably. I just wanted to get a couple of updates posted (I've had that one from Sunday ready to post since Monday night!). Anyone who reads this who lives near the hospital, you are more than welcome to come and visit any time, especially during the week! Just call or email me to make sure I'll be here (I usually am).
Monday, January 5, 2009
Yep, patience... a virtue I really don't possess. They stopped Faith's feeds again on Sunday morning, after they took another abdominal x-ray and discovered (hopefully) the real reason for her continued vomiting. Dave and I were getting ready to leave to go to Loveland for the day and work on getting things done at our house, so things will be a little more ready when Faith can actually go home. As we were getting the last of our things together, I noticed that Faith's TPN was back at 18 mL/hr, when it had been at 9. I wanted to think it was a mistake, but decided we should wait around until the nurse got back from eating lunch so we could ask her about it. When we did, she told us they had made Faith NPO again, and that as soon as we saw the x-ray, we'd understand why.
So, she took us to her computer and showed us the x-ray (they're all digital now, it's pretty cool), and we could see that 24 hours after the contrast study, Faith still had quite a bit of barium in her stomach (that was actually from her intestine) and in one place in her intestine. There were little spots of barium past that area, but it was pretty obvious from that picture that she has some type of an obstruction going on still.
So, we had to wait all day yesterday to hear from surgery what their plan would be. Then I waited most of the day today, to hear from surgery what their plan would be. I saw them twice this morning, but Dr. Sandoval (and Dr. Karrer) could only tell me that they needed to talk to Dr. Partrick and see what he thought. Finally around 7:00 tonight, Dr. Sandoval came in to tell me about their plan. They are going to start irrigating Faith from the bottom twice a day. They are thinking that her intestines might still be plugged up with stuff that's not moving through like it should, and so they think that if they can flush some of that out, then things will move better. Dr. Sandoval did the first irrigation tonight, but didn't get a whole lot out.
Dr. Partrick came shortly after Dr. Sandoval left and talked to me in a little more detail about the plan. He said that he thinks a lot of Faith's problems stem from the size of most of her intestine. He said the fact that so much of her intestine is very small around, but one section is dilated, makes it harder for things to get through, and that the small part just isn't working as well as it normally would, and since it isn't working that well and things aren't getting to that section as much, it isn't getting stretched out to the size it should actually be. He said that the intestinal issue is probably contributing largely to the vomiting, particularly the projectile vomiting, because it is easier for everything to just come back up, rather than push through that narrow section of bowel.
So, we will wait some more. This is the part of gastroschisis that I didn't want to think would happen to us, this waiting forever for her intestines to work like they should. Then once we're done waiting on that, we will wait for her to show us she can handle eating... I came to the realization this morning that it seems like maybe God is trying to teach us something through all of this, and we're just not getting whatever it is He wants us to learn. It just seems like things start to get better and everyone is optimistic, and then something comes along that no one expects... like God is saying, "Oh, wait, you didn't learn your lesson, you can't be done yet!" I can think of a couple of things I should be learning from this... the patience thing for one, and also to let go of my desire to always be in control and realize the only one who is truly in control is God.
Faith hasn't thrown up much today, only three times, and they weren't very big. No one is sure if it's because she's not eating, or if it's the Prevacid starting to work. Either way, it's nice that she seems more comfortable.