Saturday, December 11, 2010

It's barely 9 pm on Saturday night and I am FIGHTING to stay awake. Can't wait to crawl into bed. It must be going around because Ava was fighting it too and has since been plopped into her crib with nary a whimper. There are about 7 trips up the stairs to come to transport Lily and all her paraphernalia and that's the only reason I'm not already sacked out.
Saturday--my day of rest--ie the day I go to work. Who knew I would eventually be saying "wow one more day of work a week would sure be nice..."
All girls are still somewhat snotty, Ella has developed a good deep rattle as well. Lily seemed more clear and then got her first Synagis shot yesterday (very expensive monthly RSV protection) and then had a couple of big desats last night. We are postulating that any fever, however slight, causes these little episodes. Luckily she pulls herself out of it (especially lucky since I slept right through the alarm last night) and they weren't as dramatic as last time. Darn it though. Not cool Lily. First outpatient cardiology appointment on Monday, we will see if they have any ideas. Also we will see if her echo shows any worsening of her pressures. I do not expect improvements based on the last few weeks. Zar and I briefly discussed "where we are" currently on surgeries if they would likely improve her cardio-pulmonary status, and we would still "strongly consider" major interventions.

In better news, she is doing great in physical therapy and shows a lot of potential. She is tolerating her increased feeds well so she isn't on the tube 24 hours a day.
Man, Cindy Crawford is REALLY wearing me out!


Lacey said...

I love that Lily is doing so well. Hopefully cardiology has a great idea on whats going on. When do you go? We go on Tuesday to Day.

Allison said...

What a sweet pic of Lily-bell in front of the Christmas tree. Hope your appointments went well. xoxox

{ Bethany } said...

That is such a cute picture! I love twinkle lights and christmas trees. I wish I could have gone to see the Festival of Trees. I think it is so neat. Maybe I should start one here? :)

Ella and Olivia would get along so well. She loves TV, too, and will willingly sit in the couch all day long watching "Coos" (Blue's Clues) and "Marney" (Barney). I know, because I've let her some


AussieJenn said...

How precious is that photo of Lily looking at the Christmas lights?!!