Thursday, January 8
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).
3 months ago