Six days ago, April 16, 2013, Landon James Shrader took his first breath and changed my life forever. Everything else in the world fades to insignificance with the birth of your first child. He changed my definition of love, joy, and exhilaration just by existing. Born at 7:07 pm and weighing 7 pounds and 1 ounce, he was the vision of perfection. Already handsome (obviously from his mother's side), my world has revolved around him from minute 1. I had often imagined all the exciting times we would have together but unfortunately our big adventure started far too soon.
Early in the afternoon of April 17, Landon had his first seizure. By 4 o'clock he had suffered 4 and Mercy Regional was unprepared to deal with such an emergency. Due to severe storms, a transfer by helicopter was impossible and we waited 2 agonizing hours for an ambulance to arrive from Topeka. By 9 o'clock we were in the waiting room of the Stormont-Vail Neonatal Intensive Care Unit (NICU), anxiously awaiting word on his condition. An hour later we were finally allowed to see him and were informed that his seizures were under control through chemical intervention with Phenobarbital. Further tests would wait until morning. Karen and I slept in fitful bursts that night.
Thursday morning had many tests in store for Landon. Before noon he had undergone an MRI, blood draws, skin scrapings, lumbar punctures (5 times), EEGs, aEEGs, and a CT scan. He was placed on ampicillin, gentimicin, acyclovir, furosemide, D10, and was given a naso-gastric tube to allow for feeding. At approximately 4 p.m., only two days after the happiest moment of our lives, we were given heavy news. Landon's brain is only 1/3 the size it should be, its growth restricted by a 6 mm thick layer of fluid around his brain. The damage was permanent but the severity of the lesion was still unknown. It wasn't until 10 pm, when a neonatal neurologist was brought in, did we discover that he would probably have trouble breathing, eating, and regulating his own temperature. Further tests were needed. No sleep again that night. Karen and I had barely eaten in 48 hours as well.
Following a CT scan, Friday night brought the lowest moment of Karen and my lives. Consultation with a neonatologist revealed that Landon is unlikely to reach his first birthday due to complication that often coincide with babies that struggle to eat and maintain their own temperature. Despair can hardly describe our emotions. Our 3 day old, perfect, beautiful, intensively loved son was given a deadline that neither of us thought we could cope with. It felt like the world was crashing down around us.
And yet, for some reason, we kept breathing. Inevitably, another second ticked off the clock. This was real and we were going to have to deal with it. Landon's condition scared and intimidated us (it still does), but if anything it only made us desperate to love him more. We need to fit an entire lifetime of love into such an an abbreviated dash of life and that can only be done by special parents sacrificing for their precious gift. And so we made a conscious decision to 1.) Thank God for this gift of life and beauty that we'd been given and 2.) To cherish every single moment we had with our "Little Goat." With the love, support, and compassion of our friends, families, classmates, coworkers, and community we made it through that night and began our adventure with Landon.
Our goal is to find and celebrate one victory each and every day of Landon's life. Saturday, Landon was able to make it through the day with only 1 seizure and sucked on his pacifier twice. Sunday was a huge day with lots of improvement! He began centering his arms, regulated his own temperature for over 20 hours, lowered his dose of Phenobarbital, and was able to wear pajamas for the first time. Monday showed great improvement as well. With a lower level of phenobarb in his system, Landon was breathing smoothly, regulating his own temperature, and finally off his antibiotics. The nurses took one of his IV lines out and Landon was able to suck on the back of his hand.
When you have a blessing like Landon in your life, smiles and happiness come easily. We are determined to stay positive and make his time with us as exciting and filled with love as we can. With our amazing support system (and a bit of stubbornness), we are confident we can take a difficult situation and turn our time with Landon into a celebration of his life. We're excited to have you join us on our adventure with Landon.