Wednesday, July 17, 2013

happy 1 week birthday Capri

Today is Capri's one week birthday!  If you would have asked me 3 weeks ago if i thought we would get to celebrate this day I would have told you no.  So many doctors had told me there was a very high chance she would only live a few minutes, a week sounded like an eternity.  But she is here.  And she is fighting.

 Day 2 of being off the prostaglandin medication and she is  doing well.  Her valve is still open about 40% so we have quite a ways to go.  Yesterday we discovered that her pulminary artery was not formed correctly.  Normally you have one flap on one side and 2 flaps on the other side.  Her 2 flaps are sealed together so it cant work properly.  Yesterday the cardiologist said he did not expect any blood to flow through the pulminary artery because of  attached flaps.  We will need to insert a cathader with a baloon to manually open the artery.  In her echo this morning however, there was  some blood passing through.  Not a lot, but more than expected.  She is continuing to surpass what doctors have expected. 

She still has a long way to go.  All day she has been struggling with her oxygen.  Ideally they want babies to be in the 90s.  Capris goal is to keep her oxygen in the 80s for now.  Today she has been in the 70s and dipped down to the 60s several times.  She is on 100% flow from the ventilator so we still need those lungs to work better. 

I got to sort of hold her today.  They needed to change her blanket so i got to lift her up a few inches.  To most people that is something so tiny you wouldnt give it another thought.  To me, it meant the world.  this is the first time i have got to hold my precious baby.  I also changed her diaper for the first time.  Again, something that most new moms dread, made  my whole day.  If she can keep her oxygen in the 80s tommorow there is a chance i will actually get to hold and rock her.  I pray that her oxygen will do what it is supposed to so i can have this moment.