Catherine had her first surgery when she was 5 ½ months old. Our cardiologist referred two surgeons to us and I remember how impressed Merle and I were with the first one. He put me at ease with his warm demeanor and I loved that he greeted Catherine, too. He was meticulous as he explained how he would correct her multiple heart issues. She had a defect of her Atrioventricular canal, one of her heart chambers was too small, she had two holes in her heart and one of her valves needed replacing. The surgery would take several hours but our surgeon assured us that he would send his assistant out at regular intervals to keep us updated. We had great confidence in him and even greater confidence in God, so we set the surgery date.
The months until the surgery were a blur. We threw Christina an amazing 8th birthday celebration with a sleepover and make-up party. I still had to manage the other components of my life and maintain a level of normalcy for her. In March, I dressed my girls in white and had professional portraits done, just the two of them.
The night before surgery, I remember rubbing Catherine’s little chest and thinking, “Oh my God, the next time I see you, you won’t be like this.” That was hard to think about. Harder still, was handing her over to the nurse the next day. “Mom, Dad, it’s time,“ she said. “I’m going to take good care of her.” We’d been warned the hand-off would be difficult, but we were still unprepared. As the nurse walked away from us, gently rocking Catherine in her arms, Merle and I lost it.
Our pastor came and sat with us while we waited. The surgery went according to plan and we were allowed to see Catherine immediately afterwards. Our baby girl’s entire body was swollen and we fell apart. Upstairs in the PICU (Pediatric Intensive Care Unit), there was an extra layer of concern that we didn’t understand. Our surgeon told us that Catherine had pulmonary hypertension and was very, very sick.
In the following weeks, Catherine fought to survive. Her doctors said she was a puzzle and couldn’t figure out why she would either gasp for air or stop breathing and turn blue resulting in multiple emergency trips back to the hospital. And she wasn’t gaining weight. At this point, she was seven months old and still weighed less than 10 lbs. Her doctors inserted an external feeding tube into her stomach to regulate her food intake, hoping it would help her gain weight. It didn’t.
After her third surgery to plicate her lung and give her more room to breathe, we took her home, but she continued to decline. Each doctor’s diagnosis got progressively worse. Her cardiologist told us, “Ok, we’re going to try one more medication. If this Viagra doesn’t work, we don’t have anything else.” That scared me to death.
Catherine’s pulmonologist’s diagnosis was even more dire. As he weighed her, he said “She will not survive another episode. If she hasn’t picked up any weight in two weeks, I’ll have to admit her to hospital.” Tears sprang to my eyes. Catherine’s day nurse, who had come with me, reached out and touched my arm, “We’ll get her fat.” she told me. And we did.
Two months later, we celebrated Catherine’s first birthday. She’d spent 92 days in the hospital her first year on this earth and was still the size of a three-month-old but Catherine proved she was a fighter. Small but mighty.