Doctors, Doctors and More Doctors

waiting......waiting.......and more waiting........

I feel like we have spent the past month in the Dr.'s office. Our most recent visit brought us some good and not so good news. Dr. Johnson, Edie's cardiologist, informed us that her VSD is still looking good which is - it is still there but so small at this point he does not feel it will have any effect on her. FANTASTIC!! We were excited to get this news and for an instant we saw the light at the end of the tunnel. Then we moved on to the new condition.

It was recently discovered that Edie has a cleft in her right valve. This cleft is allowing blood to leak in minimal amounts basically in the center portion of her heart. The only explanation for not seeing this earlier is that it has always been there but as Edie grows and her heart grows the cleft, which is a tear in the valve, has gotten larger and larger and is now showing. There are two ways of correcting this condition and both would require surgery. One would be going in and stitching the cleft closed. If this is not possible she would need to have the valve replaced which would lead to repeat surgeries to replace the size of the valve as Edie's heart grows. We choose to focus on scenario #3 and that is it will remain small or even better close on its own as her Partial AV Canal did and just as her VSD is trying to do.

We will go back again in 6 months for an additional EKG and ultrasound. We have been STRONGLY advised that this is not something that would cause Edie complications over night. She could be 2, 3, 5, 25 and still be able to thrive with a cleft in her valve. The size of the valve is what determines the steps to take. We know the power of prayer. Edie has so many Prayer Warriors we know that God will see her through. We are so incredibly grateful to be surrounded by so many people who love and care for Edie and our family. We love you and we thank you for your continued support.

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  1. You are so strong.. you guys are in my thoughts.

  2. Edie is always in our prayers and we will say extra ones that this cleft will close on its own. Stay strong and keep the faith.