Faith lost weight again last night. But she's eating really well, getting the amounts they want her to have. I'm pretty sure they're going to say they don't want to let her go home yet, that she needs to stay here and gain some weight first, so I'm getting ready to argue my case.
For one, until yesterday, she was still on TPN, in addition to eating full feeds. Wednesday, she got an extra 210 mL (over 7 ounces!) of fluid from her TPN, even though she was already at full feeds. Tuesday, it was 400 mL. It seems like common sense to me that she would lose a little when she was getting EXTRA and now isn't. Every time they changed the amount of TPN she got, or the amount of time she got it, she lost a little weight. (On the 15th she weighed 3.67 kg. Then she gained and was in the 3.7 range for a couple of days, then on the 18th they had changed her TPN to 6 hours off, and she lost and went down to 3.66 kg. Last night she was right around there.)
Second, until yesterday, she had fluids going into her every single day of her life. (Even yesterday she was getting 1 mL/hr of Dextrose (D10) just to keep her Broviac from clotting... it clotted anyway though!) No one could possibly say that they know for sure how much she really should weigh, because they don't know that she wasn't retaining fluid from being hooked up to something all the time. Normal adults retain fluid when they get IV's, even when they don't have it continuously going into them for 18 hours a day! AND, they're basing all of her growth on her birth weight of 6 lbs 4 oz, even though I had 2 bags of fluid in labor and she was already swollen when she was born. So that's not accurate.
Third, with the rotavirus scare and RSV all over in the NICU, we're just asking for her to get sick if she stays here. Hospitals are for sick people, and she's not sick, she just needs to grow. She will grow just as well, if not better, at home than she can here. I make enough milk to feed 3 babies, so they won't have to worry that she's not getting enough, and I will have plenty of support and help if I need it from friends at home who are experts in breastfeeding. And the lactation people here love to say that if she's upset or crying when she eats, she's burning a bunch of calories (they use that to justify when the scale says a negative number after she's eaten, even though sometimes she'll be totally calm and eating great and the scale still will say a negative number... the scales suck). So, she is upset a lot when she's here because the nurses have to come in and listen and measure her belly and poke and prod her, and then the docs come in and do all of that, too. So according to their logic, she must be burning a ton of extra calories just by being here and having all of that done. So she should gain really well at home, where no one is doing any of that. That and I'll probably feed her even more at home, because I won't always be weighing her before and after, so I won't know exactly how much she's getting, and I'll err on the side of caution and she'll get more per feeding than she does here.
SO, I am going to tell them that I'm willing to take Faith in three times a week to get weighed, and do before and after feeding weights twice a week, just to be sure she is indeed getting enough. I will even try fortified breastmilk in a bottle a couple of times a day, but I'm going to tell them that I won't try that and sit here to see if she'll tolerate it, because at this point I've seen her NOT tolerate things enough that I'll know if she doesn't.
We gave Faith her first dose of vitamins last night. It's called AquADEKs, and it's supposed to help with the cholestasis I guess. She didn't think it was too cool, and ended up throwing up a TON after having it. So she's not going to have that again. It won't help her if she throws it all up, and we've been trying so hard to NOT have her throw up, so it seems counterproductive. Plus it's this really odd orange color, and I don't want a bunch of clothes/bibs/blankets stained orange (and it seems weird that we want her to stop being yellow, but we'd give her this bright orange vitamin). I had quite the time trying to get it out, until I remembered them saying that they are fat-soluble vitamins, and it made sense then that water wouldn't help get it out. So instead, I tried fat to get it out. I used q-tips and scooped some fat off the top of a bottle of breastmilk, and spread that all over the stain. It worked pretty well, and then I remembered reading on the packet of castile soap that it's derived from coconut oil, which is a fat. So I put some castile soap on it, and it came right out.Faith took a bath last night, and her hair always gets fuzzy afterwards, so I took a picture because I think it's cute and funny. She has hair like Nathan did, only not as long- it grows mostly down the middle of her head so she has a little mohawk. It's starting to thicken up though, and it's staying pretty dark. Her eyes are changing too, I think they're going to be green.Last night was our last time having Maree as a nurse. She was definitely one of my favorites (and I'm not just saying that because she said she'd read this!). I think it helped our stay so much that we have had such good nurses. We've really only had a few this whole time that I didn't really care for, and then it wasn't necessarily because they did anything wrong, it was usually just because they didn't talk to me enough or tell me what was going on.
Anyway, hopefully the surgeons will come to pull Faith's Broviac soon, since it's clotted, and I will get to argue my case... I'm going to have one of the neonatologists come in, too, so that I don't have to say the same things twice. I hope it goes well!
Faith says, "I want to go HOME!"