Good Morning Tuesday 9/27/2011 @ 12:20pm

Ok..so it's afternoon! I've been with Gracie this morning since 9:30, so it seems like morning to me.  She is still doing great.  She had a few pukies last night, maybe about 3-5, with 4 d-sats.. that's better than she has been doing.  This morning, she scared her nurse, Lindsey at 7:30 a.m. (or maybe just did it to make sure she was awake), she had a big d-sat & a 'brady' (it's when the heart rate drops as well).. so she needed Lindsey's intervention.  I told Lindsey, Gracie just wanted to say 'good morning', and she can't talk yet.  But since then, nothing.. she does go down on her oxygen a little, but goes right back up.  (hey, she's only 35w2days, 57days actual, and people want her to breathe all the time?? lol).  Look how cute that face is... she definitely has momma's nose.



Grace is 3lbs. 3oz. as of this morning, yea!! Around here they take her weight everyday but it's the week long process that's the 'big picture'.. I like knowing everyday!!

There's some talk with our insurance company to have her transferred to Children's in Boston.  She's not completely stable just yet for a real road trip.. but maybe in a few weeks.  Let's work on getting her completely on feedings here, and better breathing all the time.  I've caught myself saying, 'we need to be advocates for Gracie', and it's not about us, but what's the best situation for Gracie.  And I hope everyone just respects Grace's parents thoughts.. we just turned the corner with feedings here, and we want her to grow a little more, get better with feedings & breathing; then maybe when she's ready for a level 2 or continuing care, she can be transferred.  What we don't want, is for her to have moved forward 5 steps, and then be transferred and now 2 steps back.  She has enough good/bad days here.  (And for those thinking, "it'll be closer for you & Gary".. Gary & I are OK!! we are in a routine..have a schedule developed for the whole month of October.. and we are GOOD!  I'm with Gracie and Gary is working, he comes up for long weekends usually.).  It's not about us, it's about Grace Lucia!! :)

I'm going to eat my willow tree chicken salad for lunch at 1:00, so I can watch days :) in the family room; with my chips & diet coke.  (Thanks to my brother, John who got the Willow tree for me).  Then I will hold Gracie.. we need to read together & sing!!



Hope everyone out there is doing well!!
Love,
pattie & gary, gracie & max