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Saturday, July 24, 2010

Pray for Katy

I know every heart story has its uniqueness. I doubt we will ever find another child who was diagnosed with a CHD at 4, has a stroke at 4.5 and looses her speech, has to fight to get listed due to stroke damage and gets her heart in another state a year after finding out she needs a transplant. Just like I will never know the struggle with antibody issues or the 3 step repair for ToF or HLHS.

Regardless of our difference in details, all of us heart moms share something very unique. It is a camaraderie, a global understanding, and a respect for each other because you have an idea of what they went through based on what you experienced. What we experience in those late nights or what we watch our kids go through firsthand is like admission into an elite group of mothers.

I had a mom call me soon after Gabriella was discharged. Though I couldn't relate to what she asked me about a G-tube based on my own experience, I was able to share with her how I probably would have handled such a decision given we had similar issues and talks with our doctor due to Gabriella's weight issues. Being an advocate for your child is the most important thing you can do as a heart mom, or a mom to any sick or special need kid, and I encouraged her to do what SHE felt was best for her baby... not what the doctors were pressuring her was the right choice. During that phone call though, Amiee & I linked up in the elite heart mom club, and I am so grateful we did. Her little princess has Restrictive Cardiomyopathy (G's original diagnosis), which was mis-diagnosed as HLHS (the RCM can make the heart muscle so tight and stiff I can totally see how it could be mistaken!). She is much like Gabriella was- visually not a child who has a life threatening heart defect besides being petite! She is a gorgeous little princess with a broken heart & a beautiful smile!

When I saw the picture of Katy today with her little NG tube kissing Mickey Mouse, I melted. I read Amiees blog and feel her range of emotions running on the same track mine did. They are a lovely family.... and Katy's brother is a little stud.

You all prayed for us and walked the journey of transplant with us. Our journey is not over, but as we progress on ours, others are just starting! Please consider following Katy as she will be listed in the near future as a 1B for her new healthy heart!

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