My wife, Leslie, had a very typical pregnancy through the first 36 weeks. We were expecting our first child, a daughter to be named Olivia, and dreaming of all the things first-time parents dream of and worrying about all of the things first-time parents worry about. Then our world was turned upside down.
During a scheduled ultra-sound, our obstetrician noticed Olivia had grown very little since her last check-up. We were referred to a specialist, who identified a few signs of “something genetic”. For two very, very Type-A parents, this level of ambiguity was intolerable. We searched the internet endlessly, only to discover that the genetic signs that had been identified meant Olivia could have any of thousands of conditions or disorders. And to make it worse, each one of these conditions or disorders could have outcomes that ranged from “typical” children to children that may or may not survive birth.
We spent the next month rationalizing, consoling, prognosticating, divining, praying and whatever else we could do to try to explain the uncertainty that we were facing. My most likely theory – she’d spend a few days in the level 2 NICU and we’d go home and watch some baseball on TV, no big deal.
Then the big day came, Olivia graced us with her presence on July 20, 2009. She was 3 lbs., 11 oz. and we loved her to death the moment we saw her. But, her fight was just beginning.
Olivia was born with meconium in her throat and wasn’t breathing. Thankfully, our early discovery of “something genetic” allowed our obstetrician to request a neonatology team from Texas Children’s to be present for Olivia’s birth. A few seconds after her birth, Olivia was out of the room, had her throat suctioned and I was staring at my beautiful little girl, who was showing her first signs of tenacity and stubbornness by giving the nurses a run for their money as they tried to clean her, measure her and swaddle her.
Then, before we knew it, Olivia was whisked away to the NICU, which at that time was a complete unknown to us. Leslie was still recovering from her C-section, so I wandered through St. Luke’s over the bridge to Texas Children’s Hospital, eventually finding myself at the NICU. Olivia had been admitted to Texas Children’s A-Pod, part of the Level 3 NICU.
Describing the Level 3 NICU to someone who has never been in Texas Children’s seems impossible. I don’t know what I was expecting, but it wasn’t what I saw. I was instantly overwhelmed by what seemed liked endless cords, monitors and beeps. Olivia seemed to have almost 10 people around her; all doing things that looked terribly important. I, on the other hand, was completely lost. After about 15 minutes, I got the courage to ask one of the nurses or doctors what was going on…at which point, they asked me, “Who are you?” “Olivia’s dad”, I replied, assuming they knew that. The rest of my time during that first NICU visit is still a complete blur, but I did my best to be a proud father and left with as much information as possible, knowing that Leslie, my family and friends would have a lot of questions.
The next few days were the hardest of my life. No one could tell Leslie and I exactly what to expect with Olivia until her blood was drawn and sent off for genetic testing. There were two stages, the initial screening to rule out trisomy 13, trisomy 18, and Down ’s syndrome and the full genetic microarray.
We were told getting the blood work back could take weeks for the first round and up to a month for the second round. Being the impatient, Type-A parent that I am, I asked the neonatologist on duty that day to give us his best guess on what Olivia could expect – the news hit me like a wrecking ball, he suspected trisomy 18, which had an average life span of a few weeks. That was the darkest moment of my life, I had just met my little girl, and how could she be taken away so quickly? I honestly can’t tell you much about the next few days, it was simply a lot of worrying and a helpless, sick feeling.
Four days later, we got the news – it wasn’t a trisomy. I do remember that moment; I tackled my brother, Peter, and cried, and sobbed, and sobbed, and sobbed. A week or so later, we found out Olivia had an extremely rare genetic deletion, called a 13q deletion. While that prognosis was uncertain, we finally had a diagnosis.
Anyone that has been in the NICU with a child can describe the ups and downs of the NICU. Olivia was in a warmer, then on CPAP (continuous positive airway pressure), then off CPAP, then in her “incubator”, then on a NG (nasogastric) tube. She had a surgery to place a G-tube in her belly to eat. She had so many tests and saw so many doctors that it all ran together. I can’t tell you how many times I washed my hands or used hand sanitizer or walked to the food court or walked to the milk bank or called the nurses on night duty to check on Olivia. It was like Groundhog Day for 57 days. Wake up, go to the NICU, sit with Olivia all day, go home, call the night nurse, sleep, repeat. Once in a while we found time to eat.
The one constant through those 57 days was Olivia. She was a rock. She loved being held. She never fussed. She ALWAYS fought and ALWAYS kept making progress. She persevered.
Before we brought Olivia home, I had already realized how special Texas Children’s Hospital was. I was extremely thankful to have had the resources Texas Children’s was able to bring to bear for Olivia. On top of that, Olivia had completely changed me. Never in my life had I seen someone fight as hard as Olivia fought. Despite all of the adversity she faced, she came home.
Our life did not instantly become “normal” when we came home with her. Olivia was still on nasal oxygen and tube fed. She continued to aspirate oral feeds and had severe reflux, among other issues. But Olivia did what she always did, fought hard. Eventually she was taken off oxygen and overcame her aspiration.
Around that time, I started working out at a local CrossFit gym, Bayou City Crossfit. It was my escape; my place to clear my mind.
I quickly became close friends with the owner, Vic Zachary, who offered to host a fundraiser to honor Olivia’s fight. Just like that, Battle Buddy 57 was born. The event was modest, 100 people working out to honor Olivia by completing a workout named after her. “Olivia” is 8 exercises, one per week of Olivia’s NICU stay. Teams of 2 complete 57 reps of each exercise, one per day of Olivia’s NICU stay.
Four years later, we’ve hosted 5 events and raised over $60,000 for the “Olivia Grace Stevens Endowed Fund in Neonatology”. Our last event had over 450 athletes and another 400-500 spectators (see video, here). We’re honored to host this event every year. The event brings awareness to Olivia’s story and the NICU at Texas Children’s Hospital. Our family hopes that what we contribute to the NICU at Texas Children’s will help more families experience what we did – we brought our daughter home.
For more information on our Newborn Center, visit here.