Sunday, October 6, 2013

We always find a way

This is the difference between a healthy kid and a heart kid.  Look at C's lips compared to A and Bs.  She is so much more grey than they are. These 3 are my whole world.

Our beautiful miracle baby, growing up big and strong
Its been one week since Capri has been tube free.  I cant explain how wonderful it has been to hold her and not worry about tripping over wires, or having to wake up in the middle of the night to change feeding bags.  If it wern't for the oxygen tabs on her temples no one would know that she had something wrong with her.  We did a weight check on Friday, she was albs 1.6oz.  she has lost 0.4oz since we took the tube out.  We have to go to the doctor once a week for the next month to check her weight.  If she continues to lose we will have to re put her tube back in.

I went back to work this week.  Never in my life have I been so scared to leave home.  We have a wonderful neighbor who is tending the kids for the 3 hours Mike and I are both at work and I am fully confident in her ability to take care of Capri.  That being said, I am so afraid something will happen while i am gone and I will be to far away to be able to hold her and tell her goodbye.  I hate that my head always goes to the worst case scenario.  Every thought i have is worrying about my baby girl.  Every picture I take of her I wonder what if this is the last picture I take?  My first day back I threw up twice and had to pull over on my drive in because I was having a panic attack.  My class was small and  they were both excited about work so it made it easier to teach.  I saw old friends and it started to feel more familiar.  The next day was much easier.  I still checked my phone about 100 times to make sure everyone was okay but I remembered how much I love my job.  I talked to coworkers about Capri without breaking down.  I am so fortunate to have a job where I only have to work 2 days a week.

I have spent most of the week looking into how much it is going to cost us to take Capri to the Mayo clinic.  10 to 20,000 dollars for the 2 and a half weeks we will be there depending on how much insurance covers.  I've gone over our budget again and again, seeing where we can cut a little here and a little there. Every extra penny goes into savings so we will be ready by next spring.  Do you know what kind of wedding I could throw her for 20,000 dollars?  Or the vacation I could take her on?  Peace fills me knowing that if she can make  it through this surgery though she is going to be okay.  Her heart will be "fixed".  We can go on vacations another year.  I can start a savings account post surgery for her wedding.  Everything is going to be okay.  We always find a way to make it work, this isn't any different.