Monday, February 17, 2014

lots of improvement

I moved into my new hotel last night.  When Mike came to visit i sent my computer home with him because i had one in the ronald mcdonald house so my posts will be in the mornings now because i will need to use a computer at the hospital.

Capri is doing AMAZING!  We spent all day yesterday playing and working on motor skills.  We sat on a mat on the floor and worked on sitting and head control.  She is so tiny it is funny to see her sitting up.   She is smiling all day long and trying to talk to the doctors. Her voice is still wraspy/squeaky so when she gets excited and tries to talk high pitch squeals come out that scare her.  She looks around like "who just did that?"  It is adorable.

Today we gave her a real bath in a tub.  This is one of the first baths she has had this year.  She smells SOOO good.  Sponge baths just dont quite cut it.  We also took her off of oxygen and she is staying in 100%.  Her right lung has finally started to open up and is looking great.  We are going to start trying her old formula this week.  She has lost pretty much all interest in sucking from a bottle so getting her to eat is going to be a struggle.  Until then we will just feed her from the feeding tube.  We are transitioning her over to taking her medications orally.  She will come home on 2 heart medications 2 diaretics, viagra, and she will need shots in her stomach twice a day for the next 3 months.  So the surgery wasnt a fix all come home a new baby but we are getting there.  In time we will be able to ween down the medication to 2 heart meds and 1 diaretic until she is around 6 years old.  At that time she will need another surgery to stop her SVT and then we might be able to be med free.  My baby girl is doing it.  She has finally decided its time to get better.  I am meeting with social work and discharge nurses today to make a plan to possibly come home next week.  That seems so surreal to say..  we might be coming home!!