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

Monday, April 27, 2009

So far,so good.  For the last 8 hours, Bella has been negative.  Good!  We have got to get rid of this swelling!

She didn’t like the echo, she kept desating.  So they had to turn her O2 up to 100% for a while.  We are slowly working down.  We are at 90 now.  They are going to leave her Nitric alone for now – maybe go down to 4 late this afternoon.  Her BNP is again higher, but still under 100 (83).  I don’t have the results of the ECHO yet, but I heard (and wasn’t supposed to hear) was she didn’t see much change from the ECHO on 7th.  We’ll wait for the final report to know for sure. 

The good Father came and talked with me today.  He prayed over our girl.  I’m not Catholic, but I surely appreciated the Father’s kindness.  He recognized my face and knew that we had been here a long time.  What a kind and gentle man.  He invited me to Mass on Wednesday, which I thought was sweet.

I am seriously considering staying over tonight – yes, that means sleeping in my super comfy chair.  Bella has been having problems every night and recovering during the day.  She needs a good night – several in fact.  :)

In case you are wondering, no surgeries, of any kind this week.


Anonymous said...

I just wanted to let you know that I read your blog daily and I say say a prayer for sweet Arabella each time. I hope she gets better very soon. I have a two year old son with down syndrome, that is how I stumbled across your blog. The weird thing is that now one of my best friends has a child who is admitted into Texas Children's Hospital as well. She is six years old and is beginning radiation treatments tomorrow on her brain tumor. Her name is Landry and her mom is Shannon. I just can't imagine what you both are going through as mommies. I will continue to pray for healing for both little girls and for you as well. God will give you strength!!
God bless you,
Abilene, TX

ParkerMama said...

What a beauty!

I have been exactly where you are now. Exactly. I could have written this post.

I'm not sure where you are. Can you get a hold of a local ward for blessings?

Parker is doing sooo much better these days. Keep that faith up and know that trachs work WONDERS.

Best decision.......ever.

Marissa Sutherland said...

The kids and I are still checking in daily to see how our Bella Bug is doing... I know that their sweet prayers are heard, and I also know that this will be on the Lord's timetable! It's okay to be a turtle Bella because we know that slow and steady wins the race! Love ya!

heather said...

I hope she gets better soon. I can only imagine how difficult this must be on you and your family. It will be such a blessing to have her home and healthy. I remember when Morgan was a baby and in heart failure and eating with a feeding tube and people asking me how I was dealing with the Down syndrome and just wishing that was what we were dealing with and not all the health problems. Down syndrome is a cake walk when all is fine with the health issues. Our prayers are still with you and your family. Hugs!

Heather said...

Good Monday update and praying for more of the same today.Love and prayers continue here in California.Slow and steady Miss Bella.