Clare had her second sedated echocardiogram today, and the news was not good. Shawn and I both had a feeling of dread driving to the clinic today. Our fears were confirmed. Clare's supravalvar aortic stenosis has greatly worsened. To the point where our cardiologist does not feel it is safe to do any more sedated echos. Therefore, Clare is having her first catheterization in the next two weeks. The procedure will be primarily exploratory to obtain exact measurements and degrees of stenosis (for her future open heart surgery). While they are in there, they may try to balloon dilate her pulmonary branches as well.
I know we're still in a state of shock to some degree. We knew Clare would undergo this procedure, we just didn't think it would happen so soon. We have been warned that this is a risky procedure because of the Williams Syndrome and that she is so young (she is almost 3 months old). She is so little (weighs barely over 11 lbs), and seems so delicate to me. She still looks so healthy, though, and I thank God for that. Even though her little heart is not healthy, it gives me comfort that she looks healthy. Maybe that's stupid and I am lying to myself, but it makes me feel better, so I don't care! Right now, I know I am coping by being in organzation mode. Having something to do keeps me from going insane worrying about the outcome of the procedure. I have read everything on the Boston Children's Hospital website, researched hotels in the area, and we are making our arrangements for Jamie's care while we are gone.
There are many prayers out there right now for our Clare.
2 comments:
Hi Teresa and Shawn,
Leslie sent me the link to Clare's Journey. Being so far away from family is hard for us during times like this. But thank you for taking the time to write about Clare. Every picture or story about her, helps to make her more real for us, like we are getting to know her too. Her picture is the first picture I see every day! You are often in my thoughts and in my prayers. When you think about it, it is amazing how one little girl has brought so many people closer to each other and to God through their prayers.
One last thing (or I might have to start my own blog), I wanted to respond to one of your comments Teresa. When you focus on how healthy she looks and find comfort in that, that is really a SMART thing to do. Anything that you do, think, say, or feel that makes YOU feel better is the right thing to do---ALWAYS.
Much love from Texas! Sara
Dear T. and Shawn,
My thoughts are with the four of you and hope that all will be well for your beautiful little baby girl.
Much love to you all, Joan Frey
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