Sick little bean

Harper is sick.

Not just rare and potentially lethal genetic disorder sick, but actually showing signs of illness. My poor little girl has run a fever all day, is listless and sleepy, and just vomited up her dinner for the first time. Eyes are goopy and runny. Blood work shows signs of infection - increased white count and elevated CRP. In a bonus, elevated liver enzymes and biliary sludge. (I find biliary sludge to be a odd medical terms - sounds more like the name of a garage band).

Little Miss Harper spent the day snoozing on mommy.

Poor sick bean

I am writing this while pumping in the mother's lounge because I couldn't bear to watch them try to place a new IV in my baby to give her antibiotics. She's such an impossible stick and she's already spent the past hour fussing weakly because her tummy was so upset. So here I cower.

Hat courtesy of our new neighbors

Decided not to put her through a lumbar puncture at this point. She'll be getting antibiotics either way. Awful not to know if this is the beginning of the mysterious infections and systematic organ failure common is severe SLOS infants or if this is just a baby bug of the sort tiny, vulnerable infants are prone to. Even more awful not to know if our treatment decisions would be different if we knew the answer to that question.

We will hopefully have our meeting with Dr. Porter at NIH this week. At this point, it's feeling a little anti-climactic, since we'll likely also be meeting with folks from hospice. But at the least, Lou and I need to get the wheels rolling to make sure we're tested for the mutation we're carrying. And the good doctor might give us an indication of how much time we have with our little girl.

Spent a lot of time talking to the social worker here today, who is the one setting us up with folks from hospice. She tells me everyone here is learning from the grace that Lou and I are showing in the face of this hideous circumstance. Not feeling graceful so much a blubbering at the moment.

Wearing footie jammies for the first time

This is the latest I've stayed at the NICU since being discharged from the hospital and the most torn I've felt. Half my heart wants to do nothing more than hold my sick little girl in a perhaps fruitless effort to make her feel better and let her know. And then I want to be at home with Shea, whose company is like a balm to my soul.

Had a horrible nightmare last night about Harper dying alone in the hospital and getting a late night phone call. The only thing worse than the thought of her dying at all is the thought of her dying without us there to comfort her.

Ugh. Just ugh.