It's nearly a year since we moved into the 7th floor family waiting room at St. Louis Children's hospital for a week, so the experience has been on my mind lately and will probably show up here from time to time. You see, around this time last year I was certain that my almost 3-month-old baby was going to die. At 2 months, she'd been diagnosed with "failure to thrive" despite being on 3 kinds of medicines to help her little heart (digoxin for the heart; aldactizide as a diurectic; and captopril, oh ye of the stinking poo, to relax the vessels out in the body and make the circulatory process easier).
The pediatric cardiologist said, "It's time."
And I had a breakdown, of course. I am not the type to have public breakdowns.
We pulled together a rush Baptism for Sunday, December 28th. Family and friends gathered, and I stayed up all night just holding my precious little girl. On Monday, January 5th I was to return to work. My 12 weeks of family medical leave were exhausted. Instead, Paul, Ellie, and I went to work over the weekend and cleaned out my beautiful, bright office.
On Monday night, Paul and I placed Ellie's precious hand on an inkpad and stamped her hand- and footprints into her baby book. We held her arm still as she screamed and we made a plaster cast of her tiny hand in Paul's. We packed.
The date we were supposed to go into the hospital was pushed back by a day because of a surgical emergency requiring Ellie's heart surgeon, Dr. God. I like to think that a lucky child was getting a brand new heart, but even that is a tragedy in its own way. Baby hearts don't grow on trees, you know. We dropped Lizzi pug off with friends on Tuesday night, very late.
Wednesday morning, we took a picture of Ellie sleeping in her car seat, packed up the car, and moved on in to Children's. Admissions went swimmingly, and we proceeded down to Radiology. Tired, weak little Ellie lay very still for her chest x-rays. We moved along to The Heart Station. Sweet Ellie cooperated for her echocardiogram (her 5th ever, the 3rd since she'd been born). Then a very professional nurse took us into a tiny room and explained the whole process to us in excruciating detail. We took pages and pages of notes.
We moved upstairs to 7 West, where all the heart kids go. Paul carted in our piles and piles of stuff from the car. We made ourselves at home and fretted about Ellie's nurse, a guy with braces and acne who looked like he might be in high school. Ellie was hooked up to several electrodes on her chest, sides, and abdomen to monitor her heart. She had a pulse oximeter strapped to her toe. She had to give a sterile urine sample. We were balls of stress. The day passed slowly, and the doctors came to visit.
The cardiologist stopped by and I asked her, "Are we doing the right thing" in my choked up voice.
"You are," she replied. She will be a whole new baby after this. You won't believe it." I felt better.
The surgeon came by in the evening. He was very reassuring and told us that children who have the operation this young do even better over the long run than those who have it later. (Though of course it's far more technically difficult and fraught with challenges at this age, he didn't mention that. But we knew.) He said that only about 1% of patients will need a permanent pacemaker after the surgery. "Wow!" I said. "That high!"
He looked at me like I didn't understand. He started to explain that it's actually a very small risk. I looked right back at him. "I am a healthy 29-year old woman with a child with Down syndrome and a serious heart defect. It has given me a different perspective on statistics."
"Fair enough," he said with a nod.
My parents and sister came and visited for a while, but I asked them to leave eventually. That night and early the next morning were for Paul and Ellie and me, alone together.
A very nice nurse's aide named Grace came in throughout the night. One time when she came in, I was sitting on the window seat, holding Ellie and sobbing silently. "Shh, it's going to be all right," she said. I felt bad to keep crying. Later she came back to help me bathe Ellie for the surgery. I was up all night, holding Ellie in my arms.
At 7:00 on Thursday morning, January 8th, a nurse came in and said, "It's time." We walked, carrying Ellie to the elevator and downstairs to the surgery area. After several minutes of standing there holding her and watching the Wiggles bop around on one of the ubiquitous TVs, the Anesthesiology Fellow came and took Ellie from my arms. I kissed Ellie's large, firm, precious cheeks and handed her over. The young doctor, who looked like an exotic gypsy from one of my childhood books, walked away through the double doors, carrying Ellie off to stop her heart and lungs.
3 comments:
Thank you. I do plan to write the rest, but whew. It's a lot easier to write (and think!) about how many minutes I did on the eliptical machine last night than to relive this.
I love the elliptical machine! (I can't do any sort of running because of my crappy arches, which fell when I was playing too much hockey and doing too much kickboxing.) So the low-impact thing is great for me. I pop a movie into the DVD player in the basement and off I go. How am I supposed to find time to go to a gym? But the basement for half an hour after everyone goes to bed? I can do that.
Oh, Jesus.
(runs off in search of Kleenex)
I thought of you today, Sarahlynn. We had our first baby swim lesson, and James adored it just as Ellie does.
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