“Bennett’s Journey: From Separation to Strength, Surrounded by Sidekicks”
Written by ♥️Mom, Kathy
Bennett’s story starts with the fun news of twins!
Everything up until the day they were born was “normal.” When Bennett was born, however, he was much quieter than his twin. We learned during those first ten minutes with Bennett post-birth that he wasn’t getting enough oxygen. Bennett was quickly taken to the NICU, and Tyler stayed with him while they worked on his oxygen and tried to find a cause. Calvin and I headed to a recovery room, and there began the toughest part of the journey, being separated. I couldn’t even tell you the amount of time that went by, but Tyler would share text updates if there was something to share, until he came into the room with the look of despair on his face. While meeting Calvin and getting to hold him for the first time, he told me about the diagnosis of Bennett’s TAPVR. Tyler told me not to Google it because there are multiple types, and the outcomes vary heavily between them.
From there, the NICU had been in contact with Children’s and Dr. Ali, and the transfer was being initiated. Tyler and I cuddled and talked to Bennett before they put him in the incubator to be transferred via ambulance to Children’s. Again, the theme of separation is strong. Calvin and Bennett had grown together and only knew each other but had to be fully separated that day. To this day, I’m disappointed that mothers cannot be moved to Methodist next to Children’s for these exact scenarios.
Tyler and Bennett were greeted by friends, Molly Medcalf, Grace Morrisey, and Lisa Darwin on the Cardiac Care Unit. There was a whirlwind of amazing professionals that came into our lives that day and to whom we are eternally grateful. Dr. Ali explained to Tyler what would happen next and what open-heart surgery would look like. I was on speaker phone listening, but it wasn’t the same. Dr. Ali recognized this without me saying anything, and he showed up at Methodist to see me that day before the surgery to shake my hand and tell me how he would care for Bennett as if he were his own.
Heart Heroes showed up with the patient tote, and a fellow parent mentioned the Facebook group to Tyler. It is remarkable to me that the Facebook group was such a powerful tool. The club no one wants in but that supports each other in ways that no one else will feel or know. The entire floor becomes your community, you see grandparents of other heart heroes supporting their families, you read about the family being transferred to Denver or St. Louis, and you just pray for them to find strength. Heart Heroes helps combat the feeling of isolation that can be felt. We feel so fortunate to have grandparents and siblings who showed up in ways we will forever be in debt to.
When Dr. Ali came out of surgery to update us, you could feel how he puts your child first and wants perfection for an outcome. The outcome was good, but not perfect. Bennett’s heart could not handle the pressures of blocking the vertical vein completely. We were in the hospital for nearly a month of recovery and knew that Bennett was not out of the woods even when we were sent home.
One of the most heart-warming days at Children’s was when we took our family Christmas card photo. Our favorite nurse, Cassie Foley, put heart-shaped tape on Bennett’s NG tube and got permission to have him carted down to the enormous, beautiful tree to take photos. If Heart Heroes can continue to support the nurses and staff of the CCU, more opportunities like this will be available to families!
We’d see cardiology periodically, and the goal was for Bennett to get bigger and to monitor the flows and pressures of his vertical vein. This meant he could grow into the optimal heart performance, or they would block the flows in a heart cath procedure. At our December 2023 appointment, it was determined he was in diastolic dysfunction and we needed to get back in the cath lab.
His cath lab was scheduled for January 3, 2024. On January 2nd we got a call asking to move it to January 4th because there was an emergency patient that needed to be prioritized. Tyler and I both looked at each other and acknowledged that someone in our Heart Hero community was going to be needing support that day. That was someone’s daughter, someone’s son, someone’s sibling in our space, walking our walk and from then on we’ve felt like we needed to prioritize this community.
During that January 4th cath, they intervened and placed a stint. For the next weeks we would monitor Bennett closely to ensure he wasn’t overworking those other parts of his heart. On my birthday, January 24th, we went back to get the results of an echo and blood markers to see what that intervention had done for his dysfunction. When Dr. Curzon’s nurse, Ann, called with the results, it was the world’s best birthday present. Through Heart Heroes, we have continued to give birthday presents and Valentine’s Day presents to the nursing staff of CCU to honor that special moment.
We knew Heart Heroes was special that very first superhero walk we did in 2023. To feel the strength of community come together was extremely moving for us and for our friends and family to have a space to celebrate that strength was special. They’d supported us through the dark times, but the Superhero run lets them see the light that we get to see every day now in watching Bennett grow and flourish.
