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

Tuesday, June 30, 2009

Tuesday

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She wants to hold onto things now.  Here is her left hand holding  her hair.  Her right hand is never far from her ladybug.

 

An hour in the bouncy chair while doing her trach collar time and an hour in the tumble form in the afternoon.  Bella is doing so well. 

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She looks so grown up to me here!  Where is the baby? 

 

 

Bella gained last night to 5.3 kg.  Slow, consistent weight gain!  So far, so good on the switch to diurel from Lasix.  That’s good.  Tomorrow is her hearing test in the morning and then they want to pull her PICC line.  So I asked (since I usually get angry when they stick her little foot) if they could DC all of her labs then.  And, surprisingly the doctor was fine with that.  All of her labs from yesterday looked wonderful.  Good.  One less worry.

I am now doing her trach care by myself – yeah!  I just tack that on with her bath and other care.  The discharge planner has been working with us (what a good feeling!).  They are working on finding a pharmacy that will compound her Pulmonary hypertension meds and give her liquid Viagra.  We have our equipment company and our nursing company.  They are working out hours.  Everyone is comfortable with us going home because we have taken advantage of all of this time in the PCU to figure out all of her care.  My confidence is growing.  I am still nervous about the transition and having strangers in our home, but we’ll adapt.  Tuesday or Wednesday of next week!!

Shawn, our wonderful librarian, stopped in today to say hi.  That was a wonderful visit.  Her Uncle is at Methodist hospital and could use some prayers.

The eye doctor has been by to see Bella again.  The movements of her eyes are so much better than when we were in ICU, but they are still present and we are off all narcotics.  So they would like to see an MRI.  It does a better job looking at the brain stem and cortex of the brain.  Hmm….

Sorry this post is late, but I wanted to wait until after I changed her trach.  I did it!  I, Shelly, changed her trach for the first time today.  Honestly, it wasn’t that bad.  Thank goodness.  Now barring her getting sick or plugged, I don’t have to do that again for a month.  Yeah!

7 comments:

Shasta said...

How exciting. As strange as it sounds you are getting into a routine. Yahoo! Forgive my ignorance but what will your home routine be like. Will you have nurses there everyday?? I will be near your house on Friday morning. Will you be there? Would love to stop my and give you a great big hug! Also congrats on being an Aunt again(very soon that is) So excited for you. Christopher will be so excited to hear that his prayers have been working!

Cammie Heflin said...

She looks sooooo good! You are gonna do wonderful with her at home!

Lacey said...

How nice. Yeah for trach change. Your confidence is building and when you get home it will be cake. Give my baby a kiss from me and Jax.

Michelle said...

It is so great to hear the peace and happiness in your posts! Makes me smile every day and Bella sure looks so beautiful in her little outfits, hair all done! Its amazing that a year ago, all this medical stuff would have sent me flat on the floor passed out...now I feel like I could be a nurse and not flinch...it's amazing what we have strength to do that we never thought possible..amazing how God knows just what we need when we had no idea!! Here's to another great day Shelly!!!

Jeana said...

I'm so glad she's doing well and that going home is in sight! I love her cute pigtails:)

My name is Sarah said...

This is Joyce. It is so great to hear things are on course. You are doing such an amazing job of learning everything. Believe it or not you will learn to change that trach in the dark with one eye closed. I can't believe how much bigger Bella looks in every photo. Such a strong little miracle.

Sutherland Photography said...

She sure does look so grown up! What an adventure she has taken you on! She is so wonderful!!! There is a local pharmacy in Tomball called Gloyers that is wonderful. They are on Main Street, in close prox. to Tomball Hospital. I can always find Grace's hard to find medications there. Not sure if you need something close (not downtown) but I find that I am pretty sick of dealing with chain Pharmacies! They are almost worthless if you are not seeking an antibiotic, etc! LOL... We have been praying and fasting for your family, and sweet Bella, and we are so grateful that she is looking forward to graduation! She is a little fighter, and she is going to be a fun spunky child! As you transition home, let us know what we can do to help - we would love to have the girls over to play! The kids miss them and want them back home from Utah - but I sure hope that they are having a blast. It is a nice change of pace! Miss seeing you, and looking forward to these next steps. Oh - and tell Asia congrats! That is wonderful news that your a new Auntie! :)