This is the second installment in a series about my daughter's Tetralogy of Fallot that I wrote when it was going on (and before blogs). You can start with the first part here.The anniversary of her surgery is coming up as well as a big milestone - some children who have had the corrective surgery have a sudden heart attack before they reach 10 years old.
Sierra is now 10 and a half.
I decided to repost this since it might help others who are facing the same journey with their little broken hearts.
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January 31, 1999
Sierra's surgery is scheduled. The big day is April 7th, but she'll go in the hospital on the 6th for her heart catherization so they can get a good diagram of her heart.
My sister once said that this whole thing was like being told that your child was going to be hit by a bus and there was nothing you could do about it. Now we know the day she's getting hit by a bus. In some ways it's a relief to have a date; in other ways it's really terrifying. Now my life seems vividly divided into the time before her surgery and the time after her surgery. I find myself in meetings and during phone calls thinking "okay, we can make that, it's two months after her surgery." or "that's 2 weeks before her surgery, we can work that in."
As time had gone on these last few months, I'd started thinking along the lines of "hey, they do this all the time. it's no big deal." But that is bullshit. This is the biggest deal in the whole fucking world and all the statistics from all the experts can't change that for me. I know they do amazing things these days. And I was perfectly happy to read about them happening to other people. Then I'd sit there with the paper saying "Those poor people. Isn't it amazing how advanced technology is?" as I turned the page to the next human interest story.
But there is no way to turn this page without living it.
At the cardiologist's we went over the potential complications [it's rare that a child will go through this procedure without experiencing at least one complication]. Scary stuff like a collapsed lung, irregular heart rhythm, fluid around the heart or lung, etc. We also went over the risk points in the surgery. Like will her heart restart after it's been stopped for 2 hours? How will she be doing in the critical 6-12 hour window after surgery? Will she'll get an infection, will everything will hold, will everything be okay? God, I don't want to do this.
Sometimes, the doctor said, the mother will hold the baby as she's being put under general anesthesia to help ease her fears. Can you imagine anything worse than holding your child as they knock her out and take her from you? Handing her over while knowing the brutality of what is going to happen - the cutting, sawing, patching. I might end up running away with her down the hall, tubes and gown flowing behind us. And when I reach the window, I'll take that step and we'll just fly away from this silly reality and go somewhere where little baby girls don't have to stop their hearts in order to live.
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