To all my heart sisters, their little ones and the families,
I know that so many of you are gearing up for your Fontans in the coming days and months. Beginning the pre-op appointments and the last regular card check-ups before the big day. I know and understand your worries, the sleepless nights and the unfathomable feeling of handing over your baby one more time; currently disrupting the bliss that you've savored since the Glenn. Today marks the one year anniversary of Olivia's Fontan, a day that very much started the reality of some of our worst fears come true. But here we are on the other side of a mountain range. Survivors and victors as she continues to slay dragons.
Our road here has been long and it was scary at times (still is occasionally) and even though Olivia's Fontan didn't work out quite the way we had hoped - it has all been okay. I won't ask you to stop worrying or dreading it because that's just plain unrealistic, but know that if things don't work out quite the way you had hoped and there's fenestration or extra fluid retention that require some additional lasix; try to ride the waves just as our little warriors always have; grab a surf board and catch the biggest one!
I don't look at Liv's need for a transplant as a Fontan failure - instead just her destined path. She is who we know and love because of the hurdles she has cleared to get where she is today. Had we chosen to do things differently, the stars may not have aligned so perfectly when timing of a new precious four chambered heart was greatly needed. I will always miss and mourn her half heart because it was a part of my baby the way she came into this world but I wouldn't have her any other way.
Here she is in all her Fontanning and Transplanted beauty! Happy Fontaniversary my munch!