Wednesday, September 27, 2006

Justin Lee Shelnutt arrived at 8:05 on Sunday morning, February 25, 2001, his tiny cry filling our world. We eagerly called friends and family to announce our newest miracle, weighing in at 7 lbs, 5 oz, and measuring 20.7 inches long. We nuzzled the familiar soft, black hair- present and past entwining as we embraced this perfect, new individual and remembered his brother’s arrival in that same room two years before. Justin Lee breathed joy, free of worry, into our lives for one blissful day. The next morning our idyllic world spun out of control. In a blur of doctors and monitors, our baby suddenly seemed to be in trouble, and he was rushed to Children's Hospital of Omaha. Fear turned to terror as we reached the hospital to hear words we never knew to dread: Hypoplastic Left Heart Syndrome (HLHS). Over the next few days we endured a rollercoaster of utter devastation and fear, finally finding hope with the Norwood Procedure, a three stage operation to rework the plumbing of his malformed heart. We clung to confidence in our surgeon as a tool in God's hands. Days turned to weeks as Justin Lee emerged from Stage 1 and seemed to thrive. We no longer had to strain to remember just what HLHS stood for. Our old way of life was a memory we had no time to dwell on. Hope covered fear, but it resurfaced at times. Especially when fatigue won out and we slowed down to think. Between my toddler at home and my baby at the hospital, I always felt needed. The dream of holding them together danced just out of reach. Justin Lee came home the day he turned 6 weeks old, after Stage 1 surgery, a revision for a clotted shunt, a heart cath locating a rogue pic line, and recovery from an infection. My dream of holding my babies together and having them both home on Easter came true. We had five cherished weeks at home together, though weeks of upheaval as we prepared to move to Oklahoma. While our actual arrival to Oklahoma City was being pushed back until after Justin's stage 2 surgery, our house had sold and we had to move everything out. Most of our household things went to storage in Oklahoma City and we reserved a room in the Rainbow House, a home for patient families near the hospital. On May 15th, we took Justin in for a heart cath to evaluate timing for the stage 2 operation. He had some complications when he awoke, hallucinations from the medication. They decided to hold him overnight. After a rocky night, we took him "home" the next afternoon. As afternoon crept toward evening, we involved ourselves in the everyday of our new lives: a trip to the store, an afternoon with family friends, and a quick stop to pick up dinner on the way to our room at the house. In the car, on an unimpressive stretch of road, our precariously balanced world began to turn upside down again. Justin seemed to choke and then began to cry, but not a cry I recognized. He looked a bit blue, but then that wasn't necessarily new to us, and the car dome light didn't offer much insight. As analysis was abandoned for fear, we rushed to the ER, as Justin continued his strange little chanting cry. As I pushed through those glass doors and ran to the admission desk, his tiny body went limp. They took him from my arms and ran to a room, and we were moved to a waiting room while they tried to resuscitate him. Justin Lee went home with the angels that night, and all hope turned upward. His story is one of love, of faith, and struggle, and also of the innocent naivety most parents share. We didn’t know about congenital heart defects, that they are the most common birth defect, and that more children die of chd than all forms of childhood cancer combined. We had no idea how often it strikes, and that our ultrasound failed to find a problem with his heart because of the lack of awareness. Faith carried us throughout Justin’s too-short life and one day, it will bring us together again. Until then I want to illuminate his mark on the world. I want to share his story, to allow his fight to help bring awareness and hope to the other 1 in every 100 children born with a congenital heart defect. For this is Justin’s promise, and that is ever undying.

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