Lots going on...

One of the downsides of a baby in the NICU is that it prohibits the wearing of a major component of the post-partum wardrobe, namely pajamas. Leaving the house every day requires actually getting dressed, making me wish I owned way more yoga pants. And avoiding becoming what other NICU parents refer to as the "frumpy NICU mom" look.

One more thing that makes it hard to get out of the house which already is starting to feel like I'm going to the hospital to sit and watch my baby die.

"You're not," Lou says, "You're going to hold your baby and cuddle her so she knows her Mommy loves her."

"Don't feel good, Mommy."

When I arrived today, Harper was a jelly bean, having managed to entirely coat herself in ultrasound gel as they repeated her abdominal U/S. The ophthalmologist has also stopped by, and he reminds me inordinately of Sascha Baron Cohen.

Long story short for today: our little girl is not doing well. Chest xrays are showing signs of pneumonia, her liver is not looking good, and there are signs of necrotizing enterocolitis. Still feverish, although her temp is getting better, and back on high flow oxygen. At least she's de-satting less with the additional respiratory support. But vomiting at every meal, and clearly not feeling good. Not my lively little bean at all.

So we've reached a point where we may need to make some tough decisions. How aggressive do we want to be treating these infections, especially when IV access is so hard to come by? The NEC treatment might normally involve stopping her feeds, but we can't do that, because we can't get a PICC line in her for continuous fluids.

Not sure if it will help, but we're meeting with the Wonderful Wizard of SLOS, Dr. Porter, at NIH this afternoon. Pretty sure he won't tell us anything we won't know, but affirmation might help us with a painful path forward...

Return of the dreaded scalp IV