Saturday, February 15, 2014

"how did you get through this"

It has been over a week of good news.  Capri is finally doing it.  She is finally getting better.  She is completely off pain medications now and is still suffering from withdrawals but is getting better.  She doesn't have much of an interest at all in taking food from a bottle but the formula they are giving her for her chylus leak is supposedly pretty gross so that is understandable.  She should be able to go back on her regular formula next week I just hope its not to late and she will still take a bottle.  She is still so tiny, we have put her back in newborn diapers.  We worked with her occupational therapist today on remembering how to roll over and head control.  She gets angry easily and doesn't have a whole lot of interest in doing much but lying down.  She can take as long as she needs though, we will get there!

I also learned today that I have been picking her up wrong.  Because they had to crack her sternum open to get into her chest you aren't supposed to pick them up from under her arms.  Oops!  She hasn't seemed to mind though, that is going to have to take some time to get used to.

I know I have said a million times how grateful I am for the wonderful people in our lives and I wish there was a word to truly describe my feelings.    Today the town I grew up in held a fundraiser in our behalf.  According to my mom there were so many people who came out to support us and tell my parents how they read my blog and pray for our little girl.  They raised enough money to alleviate all of our stress financially.  I spent the afternoon next to Capris bed crying so beyond grateful that people care about us. I am so lucky to have grown up in such an outstanding community that truly cares about one another's well being.  I will forever be indebted to all of these wonderful people and cannot wait until the day that we are in a place that we can help another family in need.  This experience with Capri has truly changed the way we live our lives. 

I spent the afternoon visiting with the other two moms with EA kids.  Listening to their stories, their trials.  One mom kept telling us how lucky they have had it.  That in there 8 months with dealing with ebsteins they haven't had to deal with any of the stuff we have.  I look at her though telling us stories about how during her sons first open heart surgery he had a stroke and seized afterwards.  In my head I am wondering how in the world did you get through that.  How horrific that must have been to deal with.  I look at our story and while we have been in and out of the hospital most of her life we haven't had to deal with anything like that. This is our first and hopefully only open heart surgery.  And to the other mom whos son has already had two other procedures both which didn't work.  When they got here his tricuspid valves where shred to pieces and there was nothing left to fix.  So Dr. Dearani created new valves out of some part of a pig.  not replacing the valve but actually creating new ones.  A procedure that has only been done 2 or 3 other times.. ever.  Handing your son over knowing that they are doing something completely experimental.. how nerve racking that must be!  How did you get through it?? They talked about bringing there babies back to the OR.  They were awake and playing.  They weren't sick like my baby.  How hard that must have been to walk away from your "healthy" baby and hope that you were going to see him again.   I guess we all get through these things the only way we know how.  We hold our breath and hope to God that everything is going to turn out alright.  And in Capris, Nathans, and Grants case they did.  Our kiddos our going to make it!  They all had different pathways that lead us here but in the end they all are fixed and we are all going to be okay. These families are from all across the country but the 3 of us are going to be friends forever.  I am so grateful that we had to come 2 months early for surgery so I was able to meet these wonderful women.