"Livin' it up at the Hotel California..."

Posted Aug 13, 2009 10:04pm

Not too much to report from the NICU today. The carseat test that Sarai failed, then passed, then failed…. Today they decided that she passed and won’t have to repeat it. But, that could change depending on who’s working tomorrow. I won’t get my hopes up.

The newest news on when she’s coming home is Monday. Again, as a wise NICU mom (Megan!) told me, don’t believe it until they’re on their way out the door. They said they want to see her with 3 days of no de-sats. I don’t know if that will happen right now. They decided to go ahead and try her on prilosec today. I think, and her nurses think, that the de-sats are because of pre-maturity and the PVL and she’s just going to outgrow them. But the bottom line is when she de-sats, she doesn’t change color (she’s always pretty and pink!) and she has no apneas or brady’s (drops in heart rate). She’s a mystery. Her nurse tonight told me, “When is she going home? I was telling her today, you know, this isn’t the Westchester Hotel!” Seriously.

I sent an email to a research person at Duke University to ask about their research with cord blood and what that might be able to do for Sarai. I didn’t hear back from them today. I also called and left a message with the cord blood bank people, to ask if they had any specific info on where I can call. They certainly did a good job of telling me how cord blood can do ANYTHING, now it’s time to show and prove! This will probably be the beginning of about a million more phone calls, but we’ve got to start somewhere!

We got to sit and talk with the neurologist today and ask some questions. And mom got to meet him. He’s really great, so much more positive that Dr. Doomsday (but Eeyore would be more positive). He will be the neurologist to follow Sarai after she leaves the hospital. I’m very comfortable with him and he has a great reputation. We asked him about the cord blood and if he’s aware of any treatments for PVL. He isn’t, but said that if we can find something, the sooner the better.

So, a few more days and we’ll have our little girl home. Her bassinette needs a baby!