Monday, April 27, 2015

Freeeeedommm, and what happens June 5

It was a glorious 5 minutes of untethered freedom.

Last night we walked around the kitchen with no cords or tubes attached to Evie, because I had to change out her oxygen cannula for a fresh one.

I got to walk ALL around the kitchen as far as I wanted to with Evie in my arms, and there was nothing to trip on or pull us back.   My surge of happiness while we walked into the kitchen surprised me, even though we've done this before. 


Erick and I have developed cat-like reflexes so we don't trip over the ever-present 25-foot oxygen tube. I like to think that I am quick like a ninja now.  I knew my brief stint playing Fruit Ninja would come in useful (I used my feet too)!

https://lh3.ggpht.com/DLGr7BhIwE2uStQyIqtOCP0Km-ESoY9ntR23tpTmc0V2hemIZXtmzUbxcHXPRaxH2Qc=h900

Evie didn't show much acknowledgement that she had no stickers on her face or little plastic prongs sticking up her nostrils, but she seemed content.

Keeping it real as she poses for her 4-month photo

In less than 2 months, we will probably have real freedom from the oxygen, but she may need to start sildenafil in place of the oxygen.  Being on this "leash" of an oxygen tube makes me think of how I also allow fear and worry to be my leash, and not to accomplish the things I could sometimes. (That is why God gave me a husband who would leave an hour later than I would for the airport!)  There are so many things in our extraordinary journey ahead that could make us feel overwhelmed.  But when we look at Evie smiling and kicking her legs, it is all worth it.

What's next on the path? Open heart surgery for Evie on June 5.
I am looking forward to the surge of happiness when I realize that my baby girl isn't as tired anymore when she eats, and that her little heart isn't beating out of her chest.  I can't wait to see her open her eyes in the hospital bed and see Mommy, so I can tell her that she is ok and that she's my strong girl. 

Happy 4 months, Evie!  Mommy loves you!





2 comments:

  1. Happy 4 months Evie! Auntie Angela loves you too! :)

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  2. We love Evie and Amy! May God bless this little angel!

    ReplyDelete