Here are some pics from the past few days. Scroll down past the pics to hear the latest news!
Faith's belly, almost all healed! The place in the middle will be her "belly button".
Aunt Laura came to visit yesterday, and finally got some cuddles with Faith :)Now, for the news! They re-started Faith's feeds today. Dr. Sandoval came in this morning to tell me they were going to, and I was glad, because it gave me a chance to talk to him (I had wanted to talk to him last night but he wasn't here, so I ended up talking to a resident... I'm not a big fan of talking to residents, it's pretty pointless.) He said they would start with trophic feeds again- 3 ml's every 3 hours. He asked if she still had her tube down, and I said no. Then I said I didn't want them to put a new one down, that I don't understand why they would feed her past her stomach, when it refluxes into her stomach from her intestine anyway. He said it's because of her reflux, that feeding it into her intestine makes it more likely that it will stay down, so I said that a lot of babies have reflux and eat into their stomachs, and in fact Noah most likely had reflux and was only ever breastfed and did just fine. At that point, he knew he wouldn't have an argument good enough to get me to agree with him, and I said that I understood that while the amounts are smaller, it would make sense to use an NG tube to feed her. I said that I thought we should at least try feeding her to her stomach, and if it didn't work, then move the tube to be transpyloric. So, he agreed, and then I said something about the tube irritating her and making her throw up more anyway, and he said that the tube definitely does irritate her. Then he left.
A little while later, the dietician came by and said she'd heard they were re-starting feeds, and that she thinks that once the volumes are up, she thinks Faith will need to be fed half of her feeds with the Pregestimil formula, because it has MCT oil in it that is supposed to help with her cholestasis (the reason her skin is turning yellow- the liver damage from the TPN). I am going to look into that a little more before I agree to the formula though, partly because she will be eating it from a bottle and not through a tube like last time and I would like to avoid that if at all possible (I agreed last time because it made sense to me with a step of digestion being skipped), and partly because in all of the reading I did on reflux, it says to avoid MCT oil in babies with reflux, because it takes longer to digest. So I mentioned the bit about MCT oil and reflux, but otherwise just sort of smiled and nodded for now until I can research and know what I'm talking about before I refuse formula. Then she left.
A little while after that, Lori, one of the lactation nurses (who is actually a certified lactation consultant, an IBCLC, who came highly recommended by a local La Leche Leage leader) came by and said she heard Faith was going to be eating, and that they had agreed to let her take half of her feeds at the breast!! She said that the docs and nurse practitioners hadn't been really in favor of it, saying that it would be too much hassle to be worth it, but that she had said, "Seriously?! This mom is here all the time, she even skimmed her own milk!" And then they realized she was right and we could probably figure out a way to make it work.
So, I pumped for 5 minutes first, and we ended up using a nipple shield to convince her, since she's gotten used to that fake feeling from the pacifiers (which is why I was originally opposed to them, but I thought it was more important to let her get some positive oral stimulation and I knew we could work on whatever issues resulted). She fussed and was frustrated for about 10 mins, and Lori used a syringe and slowly squirted about 1 ml onto the shield so that Faith would realize she'd get something out of latching on this time, and finally, she got tired, settled down, and latched on! She did great, I really hope the frustration/fussing bit goes away after we get some more practice, because once she got down to business, her latch was good and she did a good job. Overall it was a really positive experience for both of us, and hopefully things will go a little easier next time.
So now Faith will be having her 3:30 and 9:30 feeds (4x a day) straight from the source! The 6:30 and 12:30 feeds will be done using a nipple from her special bottles we got her and just squirting the milk from a syringe into the nipple for her to suck out. They won't go to all feeds from the breast at this point, because they are very concerned with keeping track of volumes, and the small amounts are virtually impossible to accurately measure if we use a scale and weigh before and after feeds. (In fact, we did that this time, and it said she gained 70 g... but we know she didn't get 70 ml's because she didn't swallow that many times!)
So far no throw-ups since she ate, just one this morning a little while after her enema, which has pretty much been the norm after they've done them. I had been wondering for a couple of days why they weren't trying to feed her again, because it makes sense to me that if they put water in her butt, and it comes out her mouth, then it should work in reverse, and what they put in her mouth should come out her butt... right? So, I am cautiously optimistic that this time the feeds will work... They also started her on the Erythromycin today; they are giving it to her orally, and so far she's keeping it down, so hopefully it will work! Please everyone keep praying that things go well this time, so we can come home soon!!