Thursday, November 12, 2009

You Take The Good, You Take The Bad

You take them both and there you have...

Just thought I'd share that apt little earworm with you all to set the tone, since it's tragically been in my head since we got the latest news. The consult from Children's Hospital is finally in, and it was without doubt a mixed bag. In brief: Jane will not be heading down to Boston any time soon. Her Acquired Lobar Emphysema (a point to Dr. Google!) is not currently bad enough to require surgery. (Yay!) Her BPD is so severe that it caused the bleb (instead of the bleb causing her latest respiratory issues) and the specialist didn't think she'd benefit from the surgery in any case. (Yoicks!) Yay for no surgery, but damn it for no quick cure. 

We haven't spoken with the specialist directly, but Dr. Congenial passed on the bulk of the report. The specialist did have a few suggestions for Jane's treatment, but it sounds like we just continue to stay the course. Keep her stable, and buy her more time. And I think the trach is now inevitable -- it's just a question of when.

Okay, then! Let's get to the cute, whaddaya say?

I held Jane for over two hours today. It was meant to be kangaroo-y (that is, more or less skin-to-skin), but our girl had her own ideas about that. She started out on my chest, got too warm and migrated until she was in the crook of my arm. She slept draped over my elbow for the better part of an hour.

After we got her back in bed, I went off to pump. I came back in to say goodbye, and what does she do? She makes faces! She bicycles her legs! She Houdinis her way out of the swaddle! She sucks on her blanket! She pulls out the stops on adorableness minutes before I had to go. 



mommatosena said...

WOW that is a day....but Jane has exceeded all cuteness today!!! As always continued prayers.

Angela said...

Those pictures are more like the Jane I'm used to taking care of, a bright eye'd angel. She was just in full on Jane cuteness and attracting a little crowd. Your girl Jane is the best and a total ham for attention.

artandsoul said...

Adorableness is clearly one of her strong points!

One bright spot in all that mixed bag is not having to pick up and move to another town for hospital care - I've done that and it just adds another whole layer of yuck.

Many hugs to you, and of course prayers --