Little Heart Warrior

Lily Newcomb’s Heart Story

Little fingers curled around ours as we waited in Room 3 in the early hours of January 29. Blocks, Bluey and books splayed on a hospital blanket on the floor, tiny, socked feet with hearts stitched on the ankle ambling down the hall. Our daughter was about to undergo open-heart surgery, and I was struck by the weight of the love and worry I had carried so deeply since the moment she was born.

Only three months earlier, we had learned about the hole in Lily’s heart. An echocardiogram revealed an unexpected result: atrial septal defect. Dr. McOmber circled the area of the hole on his heart diagram, tracing how the right side was enlarged from the excess blood flow. Paul immediately began asking questions while the shield of protection I has been strengthening for a year and a half fell into place. Lily was none the wiser, she didn’t know the gravity of what was in front of her.

She was just coming into her own - new words spoken daily from her sweet, small voice and the characteristic first-born late-walker steps growing steadier. Her normal look was one of suspicion—squinched eyebrows and a careful gaze—softened by bright blue eyes, brimming with curiosity just beneath the surface. I looked at her baby curls, rosy cheeks and button nose in disbelief of the journey that lay ahead.

Dr. Bowling, Lily’s pediatrician, sent us for a cardiology appointment just as a precaution – she’d noticed a high heart rate and murmur. Even she can recall the day she first suspected something was not quite right, a hot summer day when the office was having HVAC problems. Lily was her normal “chill”, not fussing in a hot doctor’s office room as we were sweating trying to get blood pressures and hear her heart. 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 cardiology panel, which ultimately confirmed she would need open-heart surgery to repair her ASD. Weeks of asking for recommendations, debating where to receive the best care, and spiraling on google led to the calendar on the fridge showing December 18 with a heart encircling it. Norton Children’s Downtown would be our home leading up to Christmas, or so we thought.

On December 17 we arrived for pre-op testing, Lily dressed in her wizarding best awaiting her Hogwarts suite in the CICU decorated by Dr. Kozik. Bluey greeted us in the X-ray waiting room, while a ladybug stuffie from registration found its way into our hands—a symbol of love and strength that would guide Lily’s journey. After several hours of waiting for a nose swab we learned she wouldn’t be receiving her Hogwarts letter that day thanks to the common cold.

Admittedly, we were sent into a bit of a tailspin. We’d already kept her out of daycare for two weeks, wrapped up work projects in anticipation of the recovery period, and lined up our family to join us in support for the procedure. Now, we faced another six weeks of waiting for her procedure.

From that point I did what most mothers would do and made the holidays over the top for our girl. Our new house we had just moved into before Thanksgiving received the Whoville treatment with pink and red ribbon decking the halls. Christmas morning was filled with Bluey stuffies, toys and books as Santa, or “HO, HO, HO” to Lily, delivered on her biggest Bluey dreams. We celebrated as “normal” a holiday as one could have as we prepared again for a hopeful procedure on January 29.

For a month we held on to the countless well-wishes, prayers, meals, and gifts as reminders that the support around us never wavered. As we waited, those gifts became a source of quiet strength sustaining us through the uncertainty, and ultimately inspiring Lily’s Lovebugs. We lined up the Mimis for the month of January to keep Lily home once again from daycare to ensure no setbacks.

We walked onto the 8^th floor for pre-op clutching the ladybug and smiling at our nurse friends from our last attempt. Gone were the Christmas trees, tacky sweaters, and Santa hats, but what remained were the calm confidence and patience of the staff. Our only worry this time 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. She 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.

As they carried her away, the song I sang to her as I rocked her those first months played in my head. A song written for another Lily by her father Phil Collins:

“For one so small you seem so strong.

My arms will hold you, keep you safe and warm.”

A piece of my heart was being carried down the hall to the operating room. The small child who just moments before had quacked at Dr. 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 was walked past the nurse’s station she’d come to frequent that morning.

Paul and I were ushered into a private waiting room where our families soon joined us. In our moment of solitude together, our embrace was one of new depth - heavy with worry and anticipation. Our room filled with red as Lily’s Lovebugs were all wearing matching sweatshirts for support, and friends and neighbors who worked at Norton’s delivered food and necessities. Pockets and bags were lined with prayer kerchiefs and highlighted bible passages from friends of the family.

Dr. Alsoufi introduced himself before stepping into the OR, a brief interaction with the surgeon who would lead the team to heal Lily’s heart. Regular check-ins from the nurse assured us everything was going according to plan in the OR. For roughly a half hour 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, mundane conversations and social media scrolls soothed the constant buzz of nerves in our conference room. Each click of the door handle bringing 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 Jennifer Lawrence Cardiac Intensive Care Unit. As our family nested in a corner of the waiting room, Paul and I entered room 434 side by side 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 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 chit chat about upcoming wedding plans, pup pups, and daily gossip 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, snuggled in homemade blankets, reaching for her stuffies, calling out to her family and her beloved Bluey. Voceras called Minnie and Baby Shark while nurses listened to her stitched heart and “stickers” got removed. Dr. Perrotta’s calm demeanor and simple explanations of next steps and potential side effects were welcomed in our weary state.

Saturday morning we got word we would be moving rooms to 709, but first the dreaded chest tube would finally get removed. Not 12 hours later Lily was demanding to walk laps around the 7^th floor, visiting the book cart, playing coy at the nurse’s station, and ultimately finding her way to the playroom. By the end of our stay she would test every walker and scoot car available to play with, her chosen one being the Minnie shopping cart that held her stuffed Dunkin’ therapy dog and mini Bluey toy.

We entered the step-down unit on the first day of heart month, our first heart month that carried a whole new meaning.

Fear. Joy. Love.

We had experienced the extremes of it all in just a few short days inside the walls of Norton Children’s. In the Pediatric Care Unit, we continued to feel the unwavering dedication from the nurses and doctors. We came to know them as we stood with them to give medicines and slowly remove bandages and lines. Some signed Lily’s Braveheart heart as their last as they shared news of new career opportunities, others played with her in the hallway as she took her daily rounds to get steps in, and still others advocated with insurance providers on our behalf. We left them with lovebug Valentines decor made by Lily to remind the other families of the hope and love we felt by the team.

Perhaps most poignantly was our discharge nurse who shared the news of her expecting her first child, and I realized the biggest equalizer I’d experienced thus far was motherhood. I realized this strength was different, less of an expectation and more of a determination. The quiet determination of a small girl who doesn’t yet know fear, and the way a mother learns the tiniest intricacies of her child’s desires, needs and love. I realized holding on to that love would get us through.