When the Alligator Opens II

She was a fighter from the beginning. Just fourteen inches long, Olivia surprised all by perfect Apgar scores. She was a 35-week baby trapped in a 30-week body. An ultrasound showed brain sparing, the body’s amazing ability to preserve its most important part during starvation. Nearly a third of the placenta was dead tissue and scar tissue, causing severe intrauterine growth retardation and shortened limbs, yet miraculously, Olivia’s brain was of normal size. She would spend the following weeks growing under the protective watch of the Neonatal Intensive Care team with the normal ups and downs of the life of a preemie. Her spunkiness served her well.

When she was a month old, a pediatric opthamologist discovered a rare birth defect. Olivia had a condition known as primary hyperplastic persistent vitreous (P.H.P.V.), a rare eye condition found in infants. Olivia's was particularly severe and unlikely related to her prematurity. P.H.P.V. involved a stalk of blood vessels that, during the early formation of the eye, provides a blood supply from the retina to the newly forming lens. In a normal eye, the blood vessels degenerate to the optic nerve and the lens clears. Olivia’s stalk of blood vessels never degenerated. If you looked at the pupil of her right eye, it looked like she had a tiny white daisy in the center. When we took her photo, she had “red eye” in just one eye, her right, every time.

She faced a quick flurry of appointments and surgeries at Children’s Hospital of Michigan and Beaumont. Timing was critical. The earlier the repair, the better the prognosis for vision because the brain must learn to see. The first surgery removed the stalk of blood vessels. Three weeks later, a second surgery removed the lens in the same eye. We were fortunate to have some of the best doctors in the world fighting for some semblance of vision in her eye in a race against the clock.

The night of her first surgery was the longest of my life. She was strapped face down to a board for the first twenty four hours after surgery. She couldn't nurse for comfort. To make matters worse, at one point in the night, there was a fire in the kitchen of the hospital and the fire alarms blared for what seemed like hours. I finally learned the trick of bundling her tiny four pound body, resting my hand on her back for comfort, and the two of us captured a few hours of much needed sleep.

It was also the surgery where I learned firsthand that you must stay close to your child in the hospital. Olivia's I.V. had been placed in backwards and she caught it on the board she was strapped to. A stream of blood pooled below her. My father ran for help and the nurses came running. I shudder to think what might have happened had we not been there, as tiny as she was.

When Olivia received her first contact lens at just shy of three months, she rode in her car seat, flipping her hand over and over, staring at the details of her hand. We knew we had made the right decision, preserving eyesight in her spare eye. It would never equal the other, but at least if something happened to her good eye, she would still be able to see. The doctors referred to it as her spare eye.

After a dozen trips to Detroit, Olivia’s eye was healing and her vision greatly improved by the contact lens. We had much to celebrate. I was understandably exhausted. The stress of the pregnancy had been hard on my body combined with bed rest meant I had underwent a C-section at the physically weakest time in my life. With no time to recover physically, I had moved straight into the rigors of the NICU: long hours, the daily stressors, the physical demands of nursing a preemie, slow healing and excessive bleeding wore me down even more. As the months passed, I was tenuously balancing a teaching career with an infant who required much attention, another who had just started school and one who was in high school. Yes, I was tired, exhausted even, but understandably so and I kept putting one foot in front of the other, moving forward.