by Stacey Graham
Note: As editor, I asked the Ermas to describe their life 15 years ago. Some columns are hilarious and others more poignant, but when I took a spot I didn't realize that I'd be describing my daughter's experience instead.
My second pregnancy was a breeze. No complications, labor was a short 1.5 hours and on her due date my lovely Syenna was born a healthy weight. At 10 weeks old, I noticed her stomach was hard to the touch - I figured she had gas. Her three-month visit to her pediatrician had yielded nothing abnormal. Two weeks later, however, the world turned upside down. At her four-month checkup, her doctor couldn't feel her kidneys so sent her for an ultrasound; there the technician discovered Syenna's abdominal cavity was filled with fluid. We were in the hospital the next day where they extracted a liter of a milky liquid called chyle from her belly. She was diagnosed with Chylous Ascities, a condition that didn't have a great batting average due to being associated with cancer, organ failure and ripe for infection from her loss of antibodies. She had nothing else, thank goodness, except for a whopper of a birth defect. In the past few hundred years since Chylous Ascities was recorded as its own condition, there have been less than 400 cases -- out of those only a handful were females. Awesome.
Eighteen months passed with us in and out of the hospital, usually for three weeks out of every four. Three major surgeries, shunts and blood infections from procedures and the tubes criss-crossing her body kept us regular guests at Doernbecher's Children’s Hospital. I had my own mug at the nurse's station. I showered on the oncology floor while old ladies rocked Syenna so she wouldn't be alone. My eldest daughter, who was two at the time, stayed with her grandmother during the day while her father split his time between work, visiting Syenna and I, and still being a fantastic dad. I watched as families admitted their child and the patience of the nursing staff as they guided completely freaked out parents through the horrors of what came next and I said goodbye to a disturbing amount of children as they passed from this life. Our surgeon worried that our marriage would be torn apart since so many couples handled stress differently, it only made us stronger. If we can face down this, what's arguing over who forgot to do the dishes that night?
At her last major surgery, which ripped open her belly for a second time so the surgeon could look for the leak in her lymphatic system, he told me this was it. Our options were limited if he couldn't repair the damage. The operation was not a success and while devastated I asked what the next step was and to move forward. I had no time for weeping. She was put on a cocktail of meds that were piped through a tube into her chest -- and no eating for 13 weeks. By now, Syenna was nearly two years old and hadn't taken a step, she was too weak. She refused to eat the no-fat formula the doctors prescribed so was losing weight quickly though her belly had swollen to 64 centimeters around. Obi-Wan, the cocktail was our only hope.
Stacey Graham has only a slight twitch from her experience with hospitals and went on to have three more children with no medical difficulties. Syenna is a straight-A student and plans to be a marine biologist unless One Direction asks her to be a roadie. Stacey is the author of two books: The Girls' Ghost Hunting Guide and the Zombie Tarot, as well as an editor and short story writer. Visit her at her blog, on Twitter and on Facebook to say howdy.