When the Rhythem Broke
There are moments in the NICU when you start to breathe again. When the alarms are quiet, the numbers look steady, and your baby’s tiny body seems to be finding its strength. You learn to take it one day at a time, celebrating the smallest victories and allowing yourself a moment of hope. But sometimes, just when you think you are past the hardest part, the ground shifts again. This post is about one of those moments with Imani. A moment when we thought we had made it through, only to find ourselves back in the fear, the waiting, and the not knowing. I share this because I know other parents understand what it means when the rhythm breaks, and because writing helps me hold space for everything we felt in those days.
A few weeks after Imani’s duodenal atresia surgery, we had started to breathe again.
She was still so tiny, still fragile — but she was stable. In our world, that meant everything. We were learning to take things day by day. To celebrate the smallest steps forward. Even the things that used to scare us — the wires, the monitors, the hospital smells — had become part of our new normal.
The next procedure was her esophagus that needed to be stretched regularly — every two weeks. Each time, we hoped for the same thing: no complications. We always sat and waited in silence, holding our breath. And each time she made it through safely, we allowed ourselves the tiniest sigh of relief. Just enough to get through to the next time. But the seventh time felt different.
My husband and I were there like always — side by side — but something didn’t sit right. It was a quiet, heavy feeling deep inside me. I couldn’t explain it, I just felt it. And more. It was taking too long.
Eventually, the silence between us became heavier than the wait. And then the phone rang after six hours of waiting. It was the surgeon. The surgeon explained there had been a complication. During the procedure, the lower part of Imani’s esophagus had been accidentally perforated.
I remember standing there in silence. My husband and I looked at each other, unable to speak. Tears ran down our faces as we held on to each other. Quiet. Shaken. But together.
We were asked to come to the hospital. Imani had been put in a medically induced coma, and the team needed to decide what to do next.
When we saw her again in the NICU, my heart sank. Her body was swollen. She looked pale and cold. She didn’t look like herself. And I felt the fear coming back — heavier this time. Why now? Why was this happening again? Everything had been going so well…
The surgeon told us there had been no mistake — it was simply one of those rare risks that sometimes happens.
But when it’s your child, the words don’t really land. They don’t make it feel better.
The plan now was to try a technique called FOKER — a way to gently pull the ends of the esophagus closer together over time.
We had no other option. We just had to believe it would work. Later that day, they took Imani to the OR again. The surgery lasted ten long hours.
When it was finally over, the surgeon called. The procedure had gone well. She was back in the NICU. But she’d need to stay in a coma a little longer, to keep everything calm and give her body the best chance to heal.
Five days later, she went back to the OR so they could check the progress. And it had worked. The ends of her esophagus had moved closer together, and they were able to connect them.
It was good news — news we had prayed for. But still, we didn’t feel relieved. Imani stayed in a coma to avoid any pressure on the new connection. And even though the operation had gone well, we were still holding our breath. We didn’t know if she’d make it through all of this. We didn’t know what would come next. We didn’t even dare to believe the worst might be over. We were exhausted. Worried. And still hoping.
But just knowing she’s still with us gives us the strength to keep going — and to keep fighting for her.
Writing about this part of Imani’s journey is hard because it brings me back to the fear and helplessness we felt, standing beside her bed, watching her fight again. It reminds me how quickly hope can be shaken, even when you try to protect it. Sometimes, there are no clear answers. No comforting explanations. Only the next step, the next surgery, the next day of waiting. We learned that we can’t control what happens, but we can choose to stay, to hope, and to keep loving her through every moment of uncertainty. Even now, we don’t know what tomorrow will bring. But seeing Imani still here, still fighting, reminds us why we keep going. She teaches us, every day, what it means to keep holding on — even when the rhythm breaks.
During those long days in the NICU, we placed a few small stuffed animals next to Imani. They brought Imani comfort during her toughest moments after surgery. Even today, she still finds warmth and safety with them by her side.
