Tuesday, July 13, 2004

PC time

Yes, yes....I know 'PC' means one of several things to the average American: politically correct or personal computer. In my family, PC refers to Pediatric Cardiologist. We're coming up on our visit the first week of August, and I can feel the anxiety starting to build. The last visit, things were fine, unchanged. Good news. I still get so nervous during my daughter's echocardiograms that I often have to leave the room and let my husband (who has a calm presence) sit with her. I can feel my anxiety spiraling and affecting everyone in the room....especially Lily. Echocardiograms are the scariest test for me. It was during an echo done on me at 7 days postpartum when I first learned of my heart disease and grim prognosis. The resident and student were discussing the echo as I was 'sleeping' under the influence of morphine. (which, by the way, is a nice drug. I understand why people become hooked.) It was during an echo 2.5 months later on my baby that I learned that she needed immediate open heart surgery and had a complex series of heart defects. This was one of the worst days of my life. She had her surgery, did great, and is closely monitored for her other heart issues. We are so lucky. We never loose site of that. At some point she will need another surgery, but we wait until her heart function is poor enough. So.....I dread the upcoming echo for fear of the scary news it may bring. I don't want to complain about the medical issues my family faces, as I feel we have a unique perspective and probably enjoy day-to-day existence a bit more than our neighbors. We don't find spending time with our daughter a chore, and each day when I wake up with her I am consciously aware and grateful that we get to hang out together. She is a treasure. Her square on the CHD Quilt project was just completed. It is on the same quilt with my sister's square. She has a congenital heart defect called Tetrology of Fallot, and has had 4 surgeries to correct it. I've been surrounded with the heart issues all of my life....finally I'm seeing the big picture and becoming an advocate/activist.


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