As expectant mothers, we all spend a fairly intimate and intensive period of time with our obstetricians or midwives, only to have the relationship effectively end after the six week postpartum checkup. It’s disorienting to have someone so focused on your health suddenly drop out of your life entirely. The same thing happened to us with regard to Sammi’s health after every chapter of her medical journey ended. Some would make returning appearances later, but we only know that in retrospect.
When Sammi was released from the hospital after her first cardiac surgery at 14 months old, we were essentially released entirely from the care of the cardiothoracic surgery department. On a Tuesday, a man had his hands quite literally on my daughter’s aorta, and on Thursday, we walked out of that hospital with the expectation that we would never see him again. His advanced practice nurse told us that children with double aortic arches seldom need any followup care.
It is hard to explain what it felt like to carry her out of the hospital that day. She had a four inch incision running the length of her shoulder blade, covered with strips of surgical tape. Our only instructions for her care were to scoop her up like a newborn, not under her armpits, for six weeks, and to return her to her normal diet.
What was her normal diet, anyway?
At fourteen months, she still would not eat anything more than stage-one baby food from a jar, which is the consistency of watery mashed potatoes. She hadn’t even eaten that in weeks due to the pre-surgical dietary restrictions. Her pediatrician told us to treat her like a baby just starting solid foods and offer her everything. Shortly after we returned home to her joyful older sister, I snapped this picture:
Sammi had never eaten a cracker in her life, but she was following Ronni around the house when Ronni was eating little bunny-shaped cheese crackers. Ronni offered her one, and Sammi shocked both of us by eating several.
“She’s eating another one!” Ronni kept shouting.
I cried, a little.
Sadly, it never amounted to much. Sammi went from sixteen pounds and nine ounces before the surgery to sixteen pounds and one ounce after it. She gained no ground in the first month after her release. We tried to get answers from the surgeon’s staff, but they had already done their job. They are not clinicians; they don’t manage day-to-day life. They cut and sew and mend structural problems. Ours was not for them to manage anymore.
We went to our pediatrician. She conferred with the otolaryngologist, who sent Sammi to have her esophagus dilated — now her fourth time under general anesthesia in a three month period. The radiologist who looked at her esophagus under anesthesia said that it didn’t look very constricted at all — barely worth dilating — and that what was more troubling was the musculature of her esophagus, which was uncoordinated and spasmodic in some places. It’s called dysmotility, he said, and no one knows whether or not it will go away.
For two days after that procedure, Sammi ate real food. She ate pizza one night. I took more pictures and called all of our friends and family, and then after two days, she stopped.
Her pediatrician gave us three months to put weight on her or she would insist on a feeding tube.
The surgery meant to end these struggles was a tease. The surgeon brushed his hands together and walked away, the doctor who dilated her esophagus shrugged and moved on, and the pediatrician, earnest but far out of her league, suggested Carnation Instant Breakfast.
I am just a parent. I am not a doctor, I am not a dietician, I am not a magician. I didn’t know what to do. I was alone with a baby and a never-empty bowl of blueberries in cream. Doctors cut her open, stretched her insides, gave her drugs, and then sent her home with me. Your turn now, mom. Don’t mess this up.