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

Sunday, June 5, 2011

Busy Week

Hanging out with the family:


And then Tuesday came.  We still don’t know why or how, but her belly was distended and she was so uncomfortable.  We did end up downtown at TCH for x-rays.  The ER doc and I read her chest x-ray together.  I reassured her that no, she didn’t have pneumonia – she just has atelectasis.  She said OK, but was withholding her judgment until the radiologist read her film.  Yeah, for us, the radiologist agreed with me (otherwise, it’s upstairs – ick!).  Abdomen x-rays I’m not as familiar with, but even I could see that her bowels were distended and full of air.  At least there was no perforations or obstructions.  So we went home.  She just has to pass all that gas.  Poor thing.


While we were waiting, we finally caught her doing her “So Cute!” on film.  We say, “so cute” and she puts her little hands under her face and grins.  It’s so funny!

253522_2122240462352_1436054718_3673926_6384726_nJune 3 013



Friday we saw Cardiology.  We used her ECHO from Easter and it looks about the same. We used her x-rays from the ER which are her baseline.  We talked about her chronically low BP and the low hear rate when she is sleeping.  They are really too low for someone her age, but with everything she is on, she is good.  She was also rigged up with a 24 hour heart monitor.  We always get alarms when we are hooked up at the hospital, but they don’t seem to last very long.  So we don’t worry too much.  We are just getting a good picture of her heart function.  Her valves seem to be behaving – good.  Her mitral valve is misshapen, it has a cleft, but it is behaving.  I asked her whether or not that should be on my worry list (because I had crossed it off a while ago).  She said that the longer it goes on behaving, the better (love the obvious!).  Sometimes they will act up when the kids become teenagers.  So we continue to monitor and hope that all stays happy in there.  Her PH pressures were pretty good for her.  June 3 015

Silly girl is talking to her reflection!  She entertained herself for a really long time doing this.  One thing she doesn’t suffer from is a low self-esteem! 



I was talking to our nurse after the appointment.  Bella is doing so well that I want to cross things off my worry list.  Drop a few specialists, you know?  But really she is more like a Diabetic that has her insulin regimen perfectly figured out.  The diabetic is still diabetic, just doing well on all the proper medications.  That is where Bella is.  I, for one, am grateful for all the proper medications!

She, of course, pulled all of her leads off later that day.  We goggled how to put them back on!  Thank goodness for the internet!


Saturday – we pushed it and she got 30 minutes off the vent.  She loved the freedom.


These are from today – watching a new Signing Time (totally engrossed!) And trying to comb her hair after her bath – so smart!



Heather said...

I love the daddy picture and the combing of the long,beautiful locks!

Zoey has the distended belly thing happen 2 or three times.Just like Bella's picture.The first time was about 3 weeks after her heart surgery at 6 months of age ... talk about freaked out.You could seriously SEE the loops of her bowels.I am not kidding you.2 more times since and thank goodness just air,no obstructions.These children,never a dull moment!

Praying for some more time off the vent this week and sending love from California.

Lacey said...

Oh you scared me with the beginning of that post! I thought for sure you were admitted!
Can you vent her belly through her g-tube? I wrap a diaper around Jax, especially when he is on the vent, because the vent pushes so much air through that little belly!

Cammie Heflin said...

LOVE these pix!!! Addy's belly gets distended all of the time! It's pretty much a constant. Addy swallows a lot of air and is always very gassy. It's getting better though. Really would love to meet your precious family, I think Addy, Bella and Joy would get along beautifully!!!