Friday, June 8, 2012

Some good, some bad

I'm learning first hand what I have been told by all heart moms.  These kids call the shots.
We'll start with the bad news.  It's really not BAD, just not good.  Olivia's stomach was measuring bigger this morning and is slightly discolored.  This could mean that her body wasn't handling the feeds very well.  If that was the case then she would have to stop feeds and live on what Andrew and I call her "pee bag nutrients."  It really does look like a bag of pee.  Worst case scenario, she would have to have surgery to remove a part of her bowel.  NOT the news I was hoping for this morning.  They took some xrays of her little tummy to see just what was going on and the results were...GAS!  We're very relieved but darn it!  This little girl is going to keep us hopping for sure.  They'll continue watching her little tummy but I really hope she is my little fart machine all day and can get that tummy down to normal size.
Other not great news is, it's not looking like she'll be extubated tomorrow after all.  Something to do with her not handling her peep being lowered to 6 so she's at a 7 'til she can.  They want her at a 5 before they can extubate...Yeah, I don't quite understand it either.  I'm just kind of parroting back what I heard.  So you heart mommies who are better at understanding/remembering this stuff, be patient with my ignorance :)  Anyway, what it comes down to is tomorrow is not the day I get to see her beautiful face without that darn tube.
And then, my poor baby has sensitive skin and it really isn't liking this whole experience.  She's getting rashes around all her tape and stickies but she's got a nasty looking rash on her thigh where there's nothing and never has been anything.
The good news is, she will be losing one of her chest tubes today.  Hoorah!  She also has been more awake and doesn't seem miserable.  She's been looking around a lot and seems pretty content.
This morning hasn't been as much good news as "bad" but she's still doing well enough.  We're still very pleased with her progress and keep telling her to take her time.  I am ready to go home and start being a "normal" mommy.  Of course, a new kind of normal for us but still.
I guess I'm just feeling a little down right now.  After all the progress yesterday I got my hopes up a little too much.  I'm not in the pit of despair or anything.  I'm just sick of smelling like a hospital and hauling all my crap around and not getting to hold my baby and being away from Andrew and Ella and knowing I could have another couple weeks+ of this and I could go on.  I know, I really have no room to complain.  There are some families who's heart journeys are so much worse/longer/difficult.  I think I just need to take advantage of some of the chocolate I've been given.

2 comments:

Ali said...

YES for chocolate! So happy that it is just gas. She is doing so well, and it is totally true that they do things on their own time. Prayers for little Livie and you!

Ben and Cjirsten said...

I am sorry you had a down day, but it is going to happen, your going through some very hard times, and it is okay to get down from time to time, you have been so upbeat and positive this whole time. She is going to keep doing well. . .and I hope she stinks up the room with all her cute little farts and gets that tummy to stay down. We will keep the prayers comeing :)