Cuddle times!

Faith has had lots of nice cuddles now from people besides just Mommy and Daddy. If you're jealous, come visit! :)

Feeds, part 5

Wednesday, December 31

I finally saw Dr. Sandoval this morning. He said they are going to start feeding Faith again, but this time they will do it through an NG tube that goes past her stomach into the beginning of her small intestine, and the feeds will be continuous, instead of just 3 mL every 3 hours. He said that she probably does have some reflux, but they think her upper GI tract is just not quite ready to handle feeds yet, so that's why they want to bypass that for now.

They got the tube placed... Faith didn't think that was too cool. Then the nutritionist came and said that she is going to recommend skipping the skim breastmilk at this point, since Faith is pretty far out from the chylothorax, and instead using regular breastmilk mixed with Pregestimil formula, since the stomach step of digestion is being skipped. I'm not too keen on the idea of formula, but this makes sense to me, since the milk she's given won't be going through her stomach to start being digested. The carbohydrates and protein in the Pregestimil are partially broken down, which is what the stomach would do during digestion. If she got just straight breastmilk, past the stomach and just into the intestine, it would cause digestive issues like loose stools or diarrhea. She won't need any formula once she can start having the food go through her stomach, she'll be on plain, normal breastmilk at that point, and hopefully will be getting it from a bottle (or straight from the source!). I would be happy to go home pumping and bottle-feeding though, if it will get us home sooner, because I know once we're home I can get help getting her off of bottles and exclusively breastfeeding. Honestly, at this point I will agree to just about anything they think might help get us home!

Tuesday, December 30

Still no feeds... Faith only threw up a few times today... a little bit around 1:00 AM, a little more around 4:00 AM, then again around 7:30 or 8:00 AM... then all day with no throwing up, until 6:30 tonight, when she threw up a bunch, and then again at 7:00. :-( Still no answers as to WHY she's throwing up, beyond my own reflux theory. I still haven't seen a surgeon either... Dr. Sandoval came by earlier when I was out of the room to eat lunch.

The good news is, she is pooping a bunch! I think there has been poop at just about every diaper change today. And, the vomit isn't green anymore, it's mainly clear-ish, mucousy spit.

I plan to have the nurse page surgery and tell them Dr. Sandoval needs to come and talk to me as soon as he gets a chance. I'm tired of sitting around not knowing what their plan is, or what she has to do for them to feed her. Her gut obviously works if she's pooping as much as she is, and her puking is obviously not related to eating if she's throwing up without eating.

Faith's wearing her woolies I made her for the first time. One of the nurses last week or the week before said she can't wear pants because her Broviac would get kinked, but the way the Broviac is dressed right now it is super easy to just have it come up and out the waist of the pants... and I spent a long time making these pants so she's going to wear them while they still fit!

Feeding frustrations...

Monday, December 29
Well, they stopped feeds today. Faith threw up during her 6:00 AM and 9:00 AM feeds today. The surgeons said on rounds at 10:00 that they would keep feeding her, because she's been pooping, so obviously it's moving through... but then by 1:00 Dr. Potter put an order in to make her NPO (nothing by mouth). They put her back on Reglan on Saturday, mainly to help with motility, and I asked then if it was a dose that would also help with her reflux, and the nurse said she thought it might help with that too. So they started her on Protonix today to help with the reflux. (Nice that it takes them like 5 days to listen to me when I ask why they can't give her something in addition to the Zantac she was getting in her TPN...)
Otherwise though, Faith is doing very well. She is doing great without the oxygen, and should be able to ditch the pulse oximeter (the little red light thing on her foot) in the next day or two, which will leave just her Broviac and the monitor leads for tubes and wires.

She had another bath in her little tub today, being careful not to get her incision wet of course... she didn't like it as much as she did last time, but she thought getting wrapped up in her towel when we were done was pretty nice. She has a pretty little head, so the hood part swallowed her up!

She's been wearing clothes more, even with the throwing up... I figure we'd be washing them if we were home, so what's it hurt to let her wear them and wash them here? Noah spit up a ton when he was little too, so I'm used to having to wash lots of barfy baby clothes. :) And she's grown- she's mostly outgrown her preemie things and is fitting newborns pretty well now.Almost a smile :)Hopefully in the next couple of days the throwing up will stop and they'll start feeding her again... I don't really know what they'll do now in terms of the skim milk or regular milk, but I wouldn't be surprised if they just get her to full feeds on the skim and then switch her over. No one knows for sure why she is throwing up so much (5x so far today...), and reflux is the only guess so far. I will post more if we find out any answers, but I think once again Faith is stumping the docs!

Just to prove that he's not always sleeping...

A Christmas surprise, and the 3rd time's the charm!

Sunday, December 28

Faith has made quite a bit of progress in the past couple of days. I ended up actually going home Tuesday evening, so Dave and I could hang out with the boys and let my parents use the restaurant gift card we gave them for Christmas last year. It was strange to be home... it almost made all of this not feel real, since everything at our house was pretty much the same as it was when I left (just a little messier...). Dave, Noah, and I went to our home church for Christmas Eve, which was really nice. Calvary (the church we've gone to down here) is great, we feel really at home there, and so many of the people have been such a blessing to us, but I think Dave and I are both looking forward to getting back to our home church.

Maree called us Christmas Eve after church and told us Faith had pooped! She said it was small, but it was a big step in the right direction. Christmas morning we opened presents at my parents' house, ate, and then made our way back down here to the hospital to open Faith's presents. When we got here, Mary Ann told us that Faith had her biggest poop yet around 4:00!

Noah stayed down here with Dave and I Christmas night. That was interesting... Noah is a bed-hog... and Faith didn't have a very good night, she woke up pretty much every hour, so I was in and out of the bed a lot calming her down... I ended up sleeping in the recliner. We found out Friday that he's not actually supposed to spend the night here... no one had told us that, and it wasn't in any of the information the hospital gave us, and no one who mattered said anything to us about it, Mary Ann just sort of warned us not to let it get out that he'd stayed over. So, we took him back to my parents' house Friday night. He said one of the funniest things I've ever heard him say while we were there. Dave was on the couch with him, holding him and tickling him, and Noah was wanting to get down so he could play with the train, so he was saying "Get down" over and over again, and finally, he grabbed Dave with one hand on either side of Dave's face, and said, "Ok, listen. I wanna get down now!" He was so serious, there was no way Dave could ignore him! It was hilarious. Oh, and more big Noah news- he is working on using the potty! He can pee on the potty really well, and Friday night he pooped on the potty! We are just full of great poop news! :)
Friday they put Faith's NG tube to gravity. There was hardly anything coming out, and what was coming out looked mostly like spit, with a slight greenish tint to it. She spit up a lot on Friday though, so they ended up putting it back to suction in the night, thinking she wasn't really ready for it to be to gravity yet. It wasn't really the same as when she threw up before her last surgery though, it was more just reflux, because she would cough a few times, and then spit up after that. I brought up the fact that pretty much all she was spitting up was clear mucousy stuff, and that it seemed to me if I had a big huge tube down my throat, I'd probably be making more spit than normal, and have a harder time swallowing it. Maree thought that made sense, and so did Becky yesterday, and Becky was able to convince the surgeons to pull the tube! Faith has been SO much happier since that tube came out, even though she's still spitting up quite a bit. The surgeons had talked about feeding her yesterday, but that didn't end up happening. They did re-start her on Reglan, which hopefully will help getting stuff moving out in the right direction, instead of coming back up. And it should help with her reflux, too, in addition to the Zantac that they add into her TPN. She loves to sit in the bouncy seat she got for Christmas, between the position sitting a little more upright, and the vibrations, she is really comfy in it. And her bed is now set at as steep an incline as possible, to hopefully keep the reflux under control. In addition to losing the NG tube yesterday, Faith is now off of oxygen! Her oxygen saturations are great, in the mid to high 90's. Now the only thing that is actually attached to her and not just stuck on her skin is her Broviac line! Last night, she tried out the sling for the first time and she really enjoyed it! She loved the extra cuddle time with Mommy, and her heartrate dipped into the 120's for the first time really since surgery last Saturday. She liked the sling so much, and now that she only has the Broviac she is portable, so we took her for her first walk today, around the NICU. This is hard to see... I messed with the color to make it a little easier... this is Faith's monitor, showing her heart rate (the top number on the right) at 129 for the first time in over a week! (The middle number says 96, that is Faith's oxygen saturation in her blood, and the bottom number is her number of breaths per minute.)They started feeds today around 9 AM. They are just trophic feeds, 3 mL every 3 hours, but they're a start! This is the third time they've started feeds... hopefully this will be the time that it works out, and she gets to start increasing the amounts in the next couple of days. They did not put a new NG tube in to feed her, we have been giving her the milk either directly from the syringe, or using a nipple from one of her fancy bottles and putting the milk into that for her to suck out (click that link to see the cool bottles we got her). She has been spitting up quite a bit, but never after feeds, usually it's actually right before them. She and I had a talk this morning, and I explained how much work went into making the milk they're giving her, and told her that she shouldn't throw it up, she should keep it down... so she is. :) Since the spitting up doesn't seem to be related to the feeds, they haven't stopped feeding her, and hopefully they won't. I wish they would figure out why she is spitting up, so they could help her stop!

Daddy giving Faith's first (well, sort of...) feed! Daddy and Faith fall asleep together in the chair a lot...

Status quo...

Monday, December 22

The past couple of days have been pretty non-descript... Faith is recovering well from her surgery. She is getting a little better each time we do her cares. Yesterday her little eyes were so sad when she would open them and look at me, like she was thinking, "Why did you let them do this to me again?". Today they look a little sleepy, but not nearly so sad. She hasn't had to have any extra pain meds today at all, and her Fentanyl drip is only at 1. Hopefully they'll be able to start weaning that in the next couple of days, as she really starts to feel better again. It amazes me how babies recover from surgery so quickly, when something similar in an adult would take 6 weeks to recover from. I think when they wean the Fentanyl she'll probably be able to come off of the oxygen very shortly afterwards; she is on very little (50 cc's of low-flow) and her oxygen saturations are hanging out in the 98-100 range.

Her NG tube is gigantic, and is hooked up to suction right now, like it was when she was first born, before she was closed. It had been getting quite a bit out, but it seems like it is slowing down some, and it is definitely less green than it was yesterday, so that is a good thing. I am hopeful that this part will go faster than it did last time, and that they'll be able to put it to gravity in the next couple of days. We are really hoping for a nice poopy Christmas present, too! ;) Once the secretions from the NG tube slow down and are more clear, and she poops, then they'll be able to start feeds again, and hopefully this time they won't have to keep starting and stopping, and they'll be able to just get her intestines working and then increase feeds like normal until she is up to full feeds. Dr. Sandoval said tonight that once she is eating and doing well, she will be able to go home when she gets to full feeds and is gaining weight like she should. Dr. Partrick said the other night that he didn't think she will need the skim milk for too long once she starts feeds, so she might even get to full-fat feeds around the same time she gets to full feeds, and then she will be able to start breastfeeding full-time. But even if it takes longer to get to full-fat, as long as she is doing well on the skim milk we would still be able to go home. I think we are all looking forward to that...

The little container Faith's NG tube empties into... yesterday it was full of very dark green stuff... today it's lighter and a little more clear. It is still getting barium out too!

I forgot to mention the other day that Dr. Partrick actually came in on Saturday JUST to do Faith's surgery (if you click on his name, you can see a picture of him and read about him a little). After the surgery when they brought her back up, one of the neonatology people was talking to him about another case and asking if he was going to do that one, and he said no, that he wasn't on-call that day, he just came in to take care of Faith. I thought that was pretty cool. The whole thing was very sudden, in case you couldn't tell by the way the blog posts were written... Dr. Sandoval came up Friday night to talk about the results of the contrast study, and started it out by saying that she'd be having surgery at 7:30 Saturday morning... he didn't ease into it at all, just got straight to the point. It's weird though, I actually wasn't nearly as nervous for this surgery as I was for her closure, even though it should have been the other way around, since for the closure all they really had to do was push a little bit of bowel in and sew up a hole, and for this one they actually had to cut her open and take her intestines out!

We switched rooms on Saturday too. It was kind of a good thing, because I guess a lot of our regular primary nurses didn't really care for the parents of the neighbor baby. Plus, it gave me something to keep me occupied while Faith was in surgery, since I had to pack up all of our stuff to move it. And now we are at the very end of the hallway, which is much more private, no one comes down here except to see us or the baby across the hall, so we're thinking that less traffic will make it easier to keep the boys occupied, and there isn't really anyone down here for them to bother. And we can see the mountains from the window right outside our room, and the room is a little bigger, too! So, if you are planning to come and visit, make sure you send me a message so I can tell you our new room number. (Dave and I got new phones this weekend too, and I got a new phone number, so if you need to call me and you don't have the new number yet, you should call him to get it... since it will probably be a couple of months until I get it memorized! I had just finally memorized the old one maybe 2 weeks ago...)

The hospital had a really cool thing on Friday called Snowpile. So many people donate gifts for the kids and their families for Christmas, so one of the ways the hospital distributes them is through Snowpile. Basically, they set up a big room in the conference center with all of these toys and things, and then the parents of every child in the hospital get to go "Christmas shop". It was really overwhelming... all of these wonderful volunteers involved with helping, and all of these great gifts people donated... They had the room set up with different tables for different ages, and different price ranges, and then there were a certain number of gifts for each family. For Faith, they had an under $10 table and an over $10 table, so I got to pick two gifts from the under $10 table and one from the over $10 table. Then I also got to choose a hat, blanket, stuffed animal, and book for her. Then, as if that wasn't generous enough, they had another table with gifts for siblings, so I got to choose one gift for each of the boys, and then a stuffed animal for each boy, too! AND, they gave us wrapping paper, gift bags, tissue paper, two reusable cloth gift bags (I'm gonna start making those any time I give a gift in the future, I think, because they are pretty cool!), a Christmas music DVD with computer animations that go along with the music, and a lullaby CD for Faith. There have also been various groups from different places in the community that have been bringing stuffed bears to all of the kids, so Faith has a couple of those, too.

I had Dave bring my sling down this weekend, so once we are able to hold Faith again, and she has her arterial line and the IV in her arm taken out, I am going to start getting her used to being worn. It will be nice, because we can have our close cuddle time, but I will still be able to knit or post updates or read or whatever, and then she will have a chance to get accustomed to being in a carrier, since she will probably be in one quite a bit when we are home.

Maree is our nurse tonight (she's my favorite), and she said we'll get Faith's bed cleaned up tonight and then I can hold her. :) Faith's arterial line will be taken out in the morning, too, and then she'll get back into her crib, and we'll just have the one bed in the room.
I am going to go home Wednesday afternoon so that we can go to our own church for Christmas Eve, and then do Christmas morning with the boys at my parents' house. It should be nice... and it will definitely be different to be home after almost 4 months away! Then we will come down here in the afternoon on Christmas and open Faith's presents. She has quite a few, so between the presents and the tree, it's beginning to look a lot like Christmas in her room, and she is starting to show some holiday spirit by wearing one of the cute Christmas bibs she got as a gift from one of the soldiers who went to Bahrain with my dad.

This is the pretty Christmas ornament my mom got Faith. It says "May Love be the Angel that watches over you."