Wednesday, April 2, 2014

we are still here

I cant believe its already been a month since we have been home.  This month has gone by so fast, a whirlwind of trying to get back into a normal routine and follow ups with about a million doctors.  I have enjoyed so much being away from computers and just spending time with my family that i apologize to everyone for not being better at updating on Capri.

She has been dong so great!  She is slowly gaining weight and working on feeding.  She continues to fail her swallow studies but is able to drink from a bottle as long as the milk is the consistency of honey.  Her goal is to drink 24 ounces in a day and right now she is getting about 15 of those through a bottle.  We are so close to getting rid of that feeding tube!

We are also losing her portable oxygen tanks on friday.  I expressed my concerns to her cardiologist about wanting to keep one in my car just incase she went into SVT.  His response was "kendra, its been 3 months since shes had any SVT.. its time to let go of the tanks.. she is better now".  Well its going to be his fault when he sees me in a month and all of my hair has turned grey :)

We are working with occupational therapists and physical therapists 3 times a week to get Capri back on track with normal "baby things".  She is tolerating being on her stomach for almost a minute at a time.  She isnt sitting yet but she did finally laugh for the first time which was the most beautiful sound  i have ever heard.

This whole experience has changed me as a  person. I have watched other families go through experiences like ours and have thought to myself "i am so lucky to have my family"  "im going to hold my kids just a little bit closer tonight"  but then tomorrow comes and life gets back to normal and i forget about that moment.  Capri has changed that in me.  Every moment i have with the kids i have the thought burned into my head "what if this is our last moment together"  Every time i kiss my husband goodnight the first thought in my head is "what if we don't wake up tomorrow?"  This living in constant fear is both a blessing and a curse.  I dont take moments for granted anymore yet i dont know how to get off of this emergency roller coaster.  I hope that in time things will get easier and i wont be such a ball of stress.  That i will remember to cherish every moment but with enjoyment vs fear.  In time im sure I will.  Someday this will all be a distant memory of Capris crazy first year of life.