Monday, July 22, 2013

cautiously optimisitc

I am hesitant to write this post.  I feel like the last few days have all been a good dream and at any second im going to wake up to the Drs telling me that Capri is back where we started, unable to breathe on her own, heart not working, life not long.  But thats not what Drs are telling me.  Everyday i come in we have nurses and Drs coming to the bedside amazed at how well she is doing.  Everyday her stats improve and she gets just a little bit better.  No one thought this was going to happen.

They did the echo this morning, her PDA valve is almost all the way closed, just a tiny leak.  Drs are not concerned about the leak however.  They have told us the heart is working, her pulmonary valve is letting blood flow through, she is okay...
Today they took her oxygen down from 50% to 30%. Her Nitrix from 15 to 10  and plan on lowering it to 5 throughout the night.  Her breaths per minute have gone from 35 to 25.  When she gets to 20 we can take her intubation tube out.  That means in the next two days we will get to see our baby girl without any tubes sticking out of her.  We can hold her without having to have a team of nurses and respiratory therapists by our side to move machines cords and make sure her SATS are staying where they need to be.  I will be able to just hold my baby.  So many things that i took for granted with my other children.  Holding them, breast feeding them, giving them baths.  All of these things i so desperately want to do with Capri.
After the tubes are out and the Nitrix is turned off the only thing left to do is make sure she can gain weight.  They are concerned that because her heart has to work so hard she may burn more calories than she can take in.
 There is a good chance we can take our baby girl home soon.  That is a sentence i never thought i was going to be able to say.  Thank God for miracles.  For that 5% chance.  I will take this any day over winning the lottery.. Im pretty sure our odds were about the same.

We are in no way out of the woods.  We still have a very long way to go and babies with Ebsteins commonly pass away before they turn 1.  Her heart is not suddenly fixed and she is all better.  We will still have surgeries down the road,  and we are still waiting to here from the geneticist about some other syndromes she may have.  Our lives have changed forever but as i lay here at 1230 in the morning, to the left of me is my son sound asleep on my arm.  To the right of me is my daughter wrapped in my husbands arms fast asleep.  Capri came to us to remind us how important our lives are.  How lucky we are to have each other and how important our family is.  I also believe she came here to help all of you reading my blog.  Remember how important your families are.  How quickly your world can change and to not dwell on the little things.  Let your kids stay up an hour late.  Let them have that extra piece of candy.  Take that day off of work because they want you to stay home and play.  In the grand scheme of things that is what matters.

But for now everything is good.  We are happy again.  We have hope again.  I have started bringing out baby things one by one.  Things are going to be okay...