One Moment We Were New Parents And The Next Moment We Were Heart Parents
Donating to Riley Children’s Foundation doesn’t just mean that you’re donating to a hospital for sick kids. It means you're donating to families. You’re providing a safe haven for families like mine to fight their biggest battles.
Tuesday, March 5, 2013 was one of the happiest days of my life. After a fairly normal pregnancy and labor, my husband and I welcomed our first baby, Bryson Kenneth Faus. Immediately, all we could say to each other was, “He’s perfect!!! He’s absolutely perfect!”
Wednesday, March 6, 2013, very quickly turned into one of the scariest days of my life. After a whirlwind of events at our local hospital in Fort Wayne, we were essentially told, “Your baby was born with some heart defects and needs to be airlifted to Riley Hospital for Children in Indianapolis. Go say goodbye to him. Be sure to take some pictures because he may not survive the flight.” Not exactly comforting words to a brand new mother. Bryson was very quickly prepped for the flight and intubated as a precaution because the doctor suspected he would quit breathing before the flight was over.
Thanks to modern medicine, an incredible local flight team and continuous prayers, Bryson proved that doctor wrong. He arrived at Riley still breathing on his own. Over the next few hours and days, we were very quickly thrown into the “heart world.” One moment we were just “new parents” and the next moment, we were “heart parents.” We were suddenly having conversations with doctors and surgeons, finding out that the unique combination of all four of Bryson’s heart defects was so rare that it made him “one in a million.” Medical terms we’d never heard before soon became everyday language to us. We got a crash course in reading those funny lines you see on the hospital monitors on TV shows, and learned what all the numbers next to those lines meant. We started praising Bryson when his numbers looked good and cheering him on when they weren’t so good. We also soon learned that his enlarged kidneys, originally expected to resolve on their own after birth, were actually a much bigger concern.
As emotional, stressful, exhausting and terrifying as those first few days and weeks were, my husband Brian and I felt an overwhelming sense of calm at times. We knew Bryson was in the best of hands and we very quickly connected with some of the Riley staff.
There was Dr. Mark Rodefeld, the incredibly talented Riley pediatric cardiothoracic surgeon who sat and answered our hundreds of questions after telling us he would need to perform open-heart surgery on our newborn son. He then offered to come back later that afternoon and explain the same thing and answer the same questions for all of our extended family who showed up to support us. (And let me tell you, we have an incredible, large and supportive family, so there were plenty of people to ask him questions that afternoon!)
After that first surgery, Dr. Rodefeld would come in every day, even on his days off, to check on Bryson (and I’m sure his other patients as well.) However, he would always make a point to check on me when first entering our room. He knew I’d just given birth for the first time, and had been released less than 18 hours later to travel two hours away from home in an extremely stressful and emotional situation. “How are you doing today, Caitlin?” he’d ask. “Are you getting rest? Are you taking care of yourself?” I wasn’t even his patient but he was still checking on me!
Then there was a Newborn Intensive Care Unit (NICU) nurse, Amanda, who spoke quietly to us in the middle of the night while we sat next to Bryson’s tiny little bed awaiting his first open-heart surgery at 6 days old. She calmed my nerves more than once. I’ll forever be grateful to her for preparing us for what we’d see when Bryson came out of the operating room. I had thought he was already connected to so many wires and tubes while in the NICU, but after that first open-heart surgery as he recovered in the Pediatric Intensive Care Unit, those wires and tubes seemed to have tripled. She warned us that he’d be puffy. “Not just a little puffy, but VERY puffy.” Boy, was she right. He was hardly recognizable when we finally got to see him. I can’t imagine how I would have handled seeing him like that if I had not been forewarned.
There was the parking attendant who celebrated with my husband as he left the parking garage the day of Bryson’s first discharge. “I’m taking my son home! For the first time!!!” Brian exclaimed. And that parking attendant got so genuinely excited for him that he started tearing up as well!!!
Within Bryson’s first 14 months of life, he underwent two open-heart surgeries, two heart catheterizations, four kidney procedures, two other surgeries, numerous inpatient stays and countless outpatient appointments, all at Riley. During those early days of Bryson’s life, Riley became like a second home to us and the Riley Heart Center staff turned into a second family. A few of the nurses were even known to fight over who got Bryson when he was coming in for an inpatient stay. And our favorite echo tech, Amy, who performed each of Bryson’s bi-weekly echocardiograms, was quickly referred to as ‘Bryson’s girlfriend’ because of the way he would hold onto her hand while she took pictures of his special little heart.
If I’m being honest, Riley often times felt more like home then our own house did. I frequently doubted my own ability to care for this precious yet medically fragile little baby who was still absolutely perfect to us. Even at home, he typically required supplemental oxygen, a feeding tube, numerous medications throughout the day, and was constantly connected to a heart monitor. Before Bryson’s initial discharge, we underwent 48 hours of parent training to ensure we were adequately prepared to care for him at home. Still, we still weren’t medical experts and there were so many uncertainties. At least when we were at Riley, we knew without a shadow of a doubt that Bryson was in the best of hands. However, even when we were back home in Fort Wayne, we were still in daily communication with his care team. Thanks to their “Norwood Clinic” program, we were checking in with our favorite Nurse Practitioner, Dana Hartman, every single day. If there was anything that we questioned, she was right there with a text or phone call to calm my nerves and/or, at times, validate our concerns and work with us to get Bryson back to Riley for immediate care. I’m still so very thankful for this program and for Dana during that stressful time.
These days, Bryson is a pretty typical 6-year-old. He’s an overall healthy kid and currently only requires yearly follow-up appointments with Cardiology, Urology and Nephrology. Although life is a lot more ‘normal’ and our visits to Riley are a lot less frequent, Riley still feels like that second home when we walk through those doors. Bryson gets excited for his Riley visits (as long as they don’t involve pokies/needle sticks). Whenever he sees a Riley red wagon, he exclaims, “Look! It’s my Riley!!!” We know that at some point, most likely in the next few years, Bryson’s bovine valve will need to be replaced, and that same valve will need to be replaced numerous times throughout his life. There is no ‘cure’ for Congenital Heart Disease; only surgeries and temporary fixes. Because of this, Bryson will always require specialized care that only a place like Riley can provide. Knowing that Riley will be there when the next surgery is needed is a true blessing.
Although I never would have wished for a hospital to become our home away from home, I’m so very thankful to have Riley and for all the special people within those walls that makes walking thru those doors feel like we’re coming back home.
When you give to Riley, you are ensuring that no child fights alone. And no family fights alone either.
We love this photo of Bryson celebrating 100 days of school where he shared his Riley story with his classmates.
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