Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Sunday, April 26, 2009

Hard Night and Quiet Sunday

They turned Bella at 11PM onto her back.  She was not pleased.  They worked and worked trying to get her to sat above her minimum requirement of 85.  When that didn’t happen, they finally had to start the Nitric.  At 1:30AM, they put her back onto her belly.

April 26 003

She is getting so big!  I can’t believe it.  At one point, I had a little baby.  :)  One good thing about being off the vec is she is able to move her fingers and twitch.  Her feet and hands were so swollen and now they are beautiful again.  Her little eyes are puffy now.

Today’s plan is to try and support her as well as possible while providing optimal nutrition.  They really want her to grow.  They feel that and time are really the best things for her.  They are trying to get her vent settings back down a little.  They are trying to slowly wean the Nitric.

She has a new trick.  Her heart rate will drop, down to the 50s or 60s.  Usually she climbs back up, but last night they had to bag her at one point.  Sometimes it’s associated with suction, but not always.  It’s alarming to me to watch both her ECG and her O2 start dropping and beeping.

The pulmonologists have increased her bostanen.  They did a test called a BNP ( measures how hard the heart is working – simple blood test) and while much higher than a week ago, is still within normal limits.  They have ordered for an ECHO, either today or tomorrow.  They want to get a feel for her pressures.  While the ECHO isn’t the best test for that, it’ll give them an idea.  They want her to have more diuresis and are considering adding another PH medication. 

They would like her to get a PICC line, but she isn’t stable enough to go down for that procedure.  She isn’t stable enough for another Heart Cath either.  She just needs more time.

It has been almost 8 weeks since her open heart surgery – on Tuesday to be precise.  I reminded them that it’s been 6 weeks since her chyllis(sp), so she can get off of the Enfaport and onto Neosure.  He wants to make sure she is getting the protein she needs to grow.

Bella  will be receiving her second transfusion of the week today.

I think that’s it – she’s beautiful!  I’ve never really seen the back of her head so well.  Her hair is getting long!  :)

4 comments:

Lacey said...

Still praying for your sweet baby. her hair is long, how cute.

Heather said...

She is so very beautiful and such a tiny fighter Shelly.Thank you for your lovely comment.I really think, that with the poem I posted,that you could interchange different roads traveled by mothers,into the last line.So many of us are connected not by the exact circumstance but by journeys that intertwine us in inexplicable ways.Keep facing forward and you and beautiful Bella will find your way.It's the getting there that is the challenge.Praying Sunday remained peaceful and prayers continue for a positive,healing week for your little love.

CYNDI said...

Why does she need a transfusion? I didn't know she had one at all!

Gabriela said...

In Gedanken so oft bei euch!
Gabriela