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

Sunday, April 20, 2014

Bella’s Week

Started off with a quick visit to the ER for a new mickey button.  Her balloon ruptured and we only get a new button every six months so we have no choice but to head into the ER. Fortunately it’s a quick trip!


Playing and being joyful!

Outside on the slide             Dancing with Daddy              Playing with sister


Bell wants to do a forward roll


In PT Bella is working on maneuvering her wheelchair herself.  Kinda scary if you want the truth – braking isn’t her strong suit!


Dying Easter Eggs


                                                     (that smile!!)


Easter Egg Hunt at Grandma’s


                                          (Just love this little Miss!)


Easter Morning!


Saturday, April 12, 2014

Bella Jumping

More than anything, Bella wants to jump – like her sisters.

So tonight this was her approximation – love her attitude!  Always trying and never giving up!

Wednesday, March 5, 2014


Usually these appointments go well.  Our doctor is a very upbeat man.  He is the head of the lung transplant team, so really in comparison, our lung issues are minor.  Our lungs work (mostly) after all!  My concerns are usually smoothed over and all is right in the world again.  Not so much this time.  This last hospital stay with our almost intubation and our pulmonary hypertension excitement was our first really big scare since decannulation.  Sure we have had pneunomias, but she recovers.  He told me that this PH component will most likely be the norm whenever she gets a serious virus.  She'll look fine when she's well, but when she's sick, it'll act up and can be serious.  Strong words from this doc. Then he added that as she ages, it'll get worse.  What?  We had been so focused on getting her better.  And she is doing awesome.  I thought this was pretty much off my radar.  Oh no.  I guess PH is our friend for life.

Then we got to wait around for three hours to have a repeat ECHO.  They want to know if the PH has gone down or not.  Well, Bella is feeling better.  So she fought tooth and nail.  To the point we don't get to have ECHOs anymore.  Not the normal way.  She is too old for sedation, so the only way they will do it is to do it under general Anesthesia.  Really?  Sigh!

So kinda of a double whammy today.  The appointment that was supposed to be no big deal, kinda was.  And the standard test was rejected.  Bella is just keeping it interesting!!

Meanwhile to offset some of that yuckiness, Miss Bella and her cuteness:

Sunday, March 2, 2014

Bella’s Week

It has been a week of recovery.  Today we are off oxygen – she made it through the night without needing any!  Yeah, Bella!!


Tuesday, February 25, 2014

She’s Home

weak as a kitten, still has her nasal cannula, but home… grateful

Sunday, February 23, 2014

Sunday Morning

Bella had a good night and is now at 5 liters and 40% oxygen. The next step is to go to a normal nasal cannula and down to 4 liters. :)

Keep this up and Bella will be home in no time.

Bella got a bath this morning and complained the whole time.  Once it was done we had this as the result.  One very happy Bella.

Bella also has been using FaceTime with Sammi and Joy.  They sang songs and laughed.  Really good to see her feeling better.

A good Saturday

Bella started out Saturday in the PICU on third floor at 8 liters of oxygen at 60%, and ended the day on the 7th floor at the PCU in private room at 6 liters of oxygen at 40%. 
This is great as we are no longer in the ICU and we are weaning down the oxygen.