Sunday, May 19, 2013

Go Fontan Yourself

I've written before about how terrible the experience of handing over a child for open heart surgery is.  It's miserable.  The Norwood was hard because Caroline  was tiny.  Being three days postpartum, walking beside her tiny body to deliver her to the surgeons was one of the most difficult things I have ever had to do.  
The Glenn brought its own pain and anxiety.  Handing that sweet girl over didn't get any easier because we had done it before.  I remember pushing an empty stroller out of that pre-op room and for hours I could still smell her.  
Waiting for news is a different story.  Sitting and waiting is hard.  The time runs together.  The minutes drag by and your mind wanders to dark places.  You sit next to laughing families waiting for their children getting their tonsils out, wondering how its possible at all that the world isn't standing still.  All of these memories surround me these days.  They're my constant companion as we prepare for the Fontan.  In many ways its more difficult.  She can communicate her discomfort.  We have enjoyed our stolen time with this spirited girl.  Will the outcome be the same?


  1. I had so many worries, too, when Lauren had her Fontan 10 months ago and luckily, it was a much better experience than I had worried it would be. I'm very optimistic that your family's Fontan experience will be just as good! There are several items I brought with me that were very helpful, so let me know when you're ready for a list!

    1. I'm ready! Bring it! And...thank you. Having those who have gone before us offer knowledge is amazing.

  2. All of you are in my thoughts, always. I'll be hoping for good news about this outcome.