Day +4 September 26

Elle is doing fine, no big changes.  Her Bili levels are slightly better, a little less jaundiced.  She is puffier in her eyes.  Her weight is up at 4.9kg.  Her sodium and BUN are high (kidney fxn).  So it seems that she is 3rd spacing fluids -retaining fluid in her tissues instead of in her vessels.  The diuretics aren't working so well, but a little.  I have never prayed for pee before now, but I am.

 Her respiratory status is stable, but I am worried about ventilator associated pneumonia (VAP).  She had a lung infection, has EB affecting her respiratory tract, now she can't cough or sit up to move fluid around and out of her lungs, she is retaining fluid and some of it is definitely in her lungs.   I'm making it sound bad, but the docs, RTs, and nurses are not too worried about her respiratory status. 

Right now, I am just going to let her rest, pad her pressure points, protect her from infection, watch everything, and keep loving her.

Chloe has a full blown cold, but she was so good today.  She wore her little white face mask with happy faces without complaint - and left it  on.  She let me wash her hands repeatedly and is learning to use a Kleenex.  She even agreed to wear her hat to keep warm. I told Stefan to let her sleep as long as she wanted (sometimes she won't take a nap at all).  Napped from 1130 AM to 5 PM!  She hasn't napped that long since she was one years old.  So we are all wearing masks around the baby, but I am going to keep Chloe away from Elle now for a while, it's way too risky.

I had a nice visit with Pastor Dale and his wife tonight.  While they were visiting me and Elle, the Edlings came by with fresh chocolate chip cookies and a beautiful card made by all of the kids and visited with Stefan and Chloe...A great way to end the day.  I am off to relieve Stefan, do central line dressings, and spend time at baby's side again

It is really starting to look like fall around here now.  The leaves are turning golden, orange, rust...beautiful.