Saturday, January 24
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.
3 weeks ago