Heart Things…

Today this baby is spending the day at the hospital…

Her cardiac team met after her heart cath to discuss her case, and the next moves.

They discussed the possibility of a Fontan, and it was decided that despite her much lower pressures, she can never be a Fontan candidate because of her liver and her protein losing enteropathy.

They discussed leaving her with just a Glenn (the operation she had done in China), but of course that would only be a short term solution…

For now the consensus is that our girl is going to need a heart transplant. She is stable, and is doing fairly well for now, so we are not rushing into anything, but the unanimous decision was to proceed with the process to get her listed.

So today, we are meeting with her social worker for an evaluation, then we will be off to do labs, and then we will meet with her cardiologist for a checkup.

It will be a busy day for the baby, but we are excited to get the ball rolling for our girl!


  1. Always wear your tiara on June 25, 2015 at 11:49 am

    so happy that there IS a plan in place for your fabulous amazing girl. let the planning begin.

  2. Renate on June 25, 2015 at 1:13 pm

    Happy to hear she is a candidate! Sweet baby girl!

  3. Musings from Kim K. on June 25, 2015 at 2:46 pm

    Continued prayers for your little sweet heart!

  4. Jo's Corner on June 26, 2015 at 1:18 am

    Sweet P, you are just about the most precious girl ever! Jesus will choose a very special heart for your very special Self. I am praying for you & your family. And, everyone else that will become a part of your story. Love You, Sweetie! ~ Jo

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