This is the fourth installment in a series about my daughter's Tetralogy of Fallot that I wrote when it was going on (and before blogs). I'm reposting it since I thought it might help other moms going through the same thing...April 7, 1999 - 2:30 am
I guess it was two weeks ago when Adam first asked me if I thought Sierra's fingers were looking a little purple. In the last few days I've noticed the nail beds are almost always purple - it doesn't fade after a few hours. Today, when they did the pulse ox in the Cath lab - before she went under anesthesia - her reading was 76.
Normal is in the 90s.
The good news is that the catherization went very well. Sierra didn't have a tet spell during the procedure, and the coronary arteries are not in the way of the surgeon's knife. She as a few unusual features about her heart. The two veins coming from the head do not connect, but instead go independently into the heart. This creates some complications for the bypass procedure, but apparently it's something they've seen before.
They do these things every day. Every day they look into the eyes of terrified parents and talk confidently about what comes next. They click on their computer screens as we watch, lost in the sea of grey images, describing parts of our daughter's heart in words so foreign I wonder if it can even be considered english at this point.
They seem so at home in this world.
Before the cath, I rubbed on Dr. Schroeder's chest and said "lucky, lucky, lucky." I think he misunderstood me - he said "it's not luck, it's skill and knowledge." "We already assumed you've got that," I told him. But a little luck these days can't hurt.
After all, he was the one who told us, when we asked why this happened, that was just bad luck.
..........
Our entire family is here, practically. We overwhelm the waiting room and it is both comforting and too much. Everyone is here to support us, but if one more person tells me she's going to be fine, I'm going to kill. Friday I was in the car describing to my niece how I feel when I hear all the stories of people who have had some heart surgery years ago and are now just fine. I long to say "Of course I wouldn't hear from any of the dead ones, would I?"
Sigh. Equally bad is "I just knew she'd be fine" which we heard after the cath went well. I bite my tongue. I know people are trying to be helpful, positive. But no one knows. I do now. And I won't say these things to my friend when her little Samantha has her surgery.
...........
Sierra is doing pretty well. She will laugh still and play with her toys and while she seems scared sometimes, she also seems just normal other times. They've been good about minimizing her disturbances tonight so she can rest. Once again I've seen what a difference people make. Our nurse tonight, Patsy is great with her, letting us make minor adjustments in the routine to keep her comfortable.
............
So tomorrow is the surgery. They'll pick her up at 6:30 and at 7:15 we'll watch as she gets wheeled into the operating room. I feel confident about it, but I'm really scared. Right here, next to me as I type this is a baby swing that was donated to the hospital in "memory of baby Jasmine Taliaferro." Sierra swung in it earlier.
I told Adam we can donate something of Sierra's - but it will be in HONOR of her. And she can visit it when she comes in to have her own children.
I wonder if I will get any sleep tonight.
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