Published: March 11, 2025
Estimated reading time: 7 minutes
Little fingers curled around ours as we waited in Room 3 in the early hours of Jan. 29, 2025. Blocks, Bluey and books splayed on a hospital blanket on the floor; tiny, socked feet with hearts stitched on the ankle strolled down the hall of Norton Children’s Hospital. Our daughter was about to undergo open heart surgery, and I was struck by the weight of the love and worry I’d carried so deeply since the moment she was born.
Only three months earlier, we learned about the hole in Lily’s heart. An echocardiogram revealed an unexpected result: atrial septal defect. Dr. Delwyn McOmber circled the area of the hole on his heart diagram, tracing how the right side was enlarged from the excess blood flow. My husband, Paul, immediately began asking questions, while the shield of protection I’d been strengthening for a year and a half fell into place. Lily was none the wiser. She didn’t know the gravity of what lay ahead.
Lily was just coming into her own — new words spoken daily from her sweet, small voice and the steps of a characteristic first-born, late-walker’s steps growing steadier. I looked at her baby curls, rosy cheeks and button nose in disbelief of the journey that lay ahead.
Dr. Maria Bowling, Lily’s pediatrician, sent us for a cardiology appointment after she noticed a high heart rate and murmur. Her instinct and expertise became the first step in healing Lily’s heart.
We left Dr. McOmber’s office facing a waiting period, as Lily’s case would be presented to the Norton Children’s Heart Institute cardiology panel, which ultimately confirmed she would need open heart surgery. Weeks of asking for recommendations, debating where to receive the best care and spiraling on Google led us back to Norton Children’s.
Dec. 17, we arrived for pre-op testing. Lily was dressed in her wizarding best awaiting her suite in the Jennifer Lawrence Cardiac Intensive Care Unit. Bluey greeted us in the X-ray waiting room, while a ladybug stuffie from registration found its way into our hands. That ladybug would become a symbol of love and strength that would guide Lily’s journey. Over the next several weeks, Lily’s Lovebugs—a circle of family, friends, and supporters—rallied around her, wearing ladybug prints and sharing messages of encouragement. After several hours of waiting for the results of a nose swab, we learned she wouldn’t be receiving her Hogwarts letter that day, thanks to the common cold.
After a month of waiting, we walked onto the eighth floor of Norton Children’s Hospital for pre-op, clutching the ladybug and smiling at our nurse friends from our last attempt. Gone were the Christmas trees and Santa hats, but what remained were the calm confidence and patience of the staff. Our only worry was not what to expect for the day, but if we would finally be able to move forward. A few hours later, we got the all clear.
The next morning, in Room 3, the nerves set in. Lily didn’t understand the monitors, the beeping machines or why she needed the stickers on her belly. But she did what she had always done —she smiled, she squeezed my hand, and she faced the unknown with the kind of quiet courage only a child can.
A piece of my heart was carried down the hall to the operating room: the small child who just moments before had quacked at Dr. Ryan Swain, her anesthesiologist, because his mask looked like a duck bill. A small cry as she left the room, and then the quiet curiosity as she went past the nurses’ station she frequented that morning. Paul and I were ushered into a private waiting room where our families soon joined us.
Dr. Bahaaldin Alsoufi, Norton Children’s chief heart surgeon, introduced himself before stepping into the operating room, He would lead the team to heal Lily’s heart. Regular check-ins from the nurse assured us everything was going according to plan. For roughly 30 minutes, our daughter’s heart was stopped, the steady rise and fall transferred to a bypass machine keeping our tiny miracle alive. Her heart in the hands of incredible surgeons for a few hours but held in ours for more than a lifetime.
Time ticked on. Each click of the door handle brought updates, good news — anesthesia prep complete, bypass on, hole repaired (no patch needed), bypass off, taken down for recovery.
Like an aggregation of ladybugs, we migrated to the fourth floor, the cardiac intensive care unit. Paul and I entered Room 434 to see Lily in her recovery crib. Her long lashes fluttered ever so slightly as we caressed her hands and whispered how brave she was, her lips slightly pursed as soft moans responded to our voices. I was struck by her strength, tethered by the fragility of lines, drains and IVs in her body.
A small, hot-pink heart adorned the bandage where her chest had been cracked open only hours before. A nurse would be by her bedside for the next 24 hours, taking care of her body and our concerns. In the span of one shift the nurses become friends, bonded by the rhythm of monitors, the trust we placed in their hands, and the chitchat that relieved our minds if only for a moment.
Day became night and night became day as doctors rounded, syringes refilled, and medicines adjusted. Lily slowly came back to us as the anesthesia wore off.
Saturday morning, we got word we would be moving to the seventh floor, but first the dreaded chest tube would finally get removed. Not 12 hours later, Lily was demanding to walk laps around the unit, visiting the book cart, playing coy at the nurses’ station and ultimately finding her way to the playroom. By the end of our stay, she would test every walker and scoot car available.
We experienced the extremes of it all in just a few short days inside the walls of Norton Children’s, and continued to feel the unwavering dedication from the nurses and doctors. We came to know them as they gave medicines and slowly removed bandages and lines. Some signed Lily’s stuffed Brave Hearts heart, while others played with her in the hallway, and others advocated with insurance providers on our behalf. We left them with lovebug Valentine’s Day decor made by Lily to remind the other families of the hope and love we felt by the team.
Perhaps most poignant was our discharge nurse, who shared the news of her expecting her first child. It was then I realized the biggest equalizer I’ve experienced thus far was motherhood. I realized this strength was different, less of an expectation and more of a determination. And I realized holding on to love would get us through.
Bahaaldin Alsoufi, M.D., is chief of pediatric cardiothoracic surgery at Norton Children’s Heart Institute.Maria T. Bowling, M.D., is a pediatrician with Norton Children’s Medical Group.Delwyn E. McOmber, M.D., is a pediatric cardiologist with Norton Children’s Heart Institute.Ryan D. Swain, M.D., is a pediatric anesthesiologist at Norton Children’s Hospital.