“Dear NICU Mama, I see how much courage it took to watch your baby leave the room without you, scrolling through those few precious photos alone and trying to rush through your recovery just to see them again. I see the courage it took to visit them while knowing others could reach over and hold theirs at any time. I see the courage it took to count the days, holidays, and seasons that passed before you could take them home.
You continue on even when things look their worst. You confess, “I’m not alright,” when asked how you’re doing. You show up each day, even when every ounce of motivation is gone. You laugh. You cry. You learn.
Courage doesn’t have to mean willingly venturing toward the unknown. It can be an unthinkable situation forced upon you—one you wish you didn’t have to relate to. And sometimes you may think you can’t handle any more sadness, any more fear. I promise you, dear NICU mama, you can do it. And one day, I hope you’ll look back with pride and realize you did it courageously.”
Love,
Samantha
More of Our Journey:
“Melanie was born at 36 weeks with several congenital anomalies, some known, others a surprise. It was confirmed shortly after birth that she had tracheoesophageal fistula, esophageal atresia, and duodenal atresia. 12 hours after my c-section, we took her to the OR for her first surgery to fix her TEF/EA. Handing her over to the anesthesiology team was more painful than any part of my recovery, and I’ll never forget the kind nurse who showed us back to my room in the staff elevators so my sobbing didn’t have to be seen by others. After a long afternoon and evening, her surgeon came to update us. He was able to repair her TEF, but her EA was long-gap and they were unable to do the repair. He said they would check again in 3 months to see if her esophagus grew. Never in a million years did I think we’d have a long term NICU stay and truthfully in that moment, I did not think I’d survive the heartbreak I felt.
Seeing her that night devastated me. I already felt like my body let her down and allowed for defects to happen, so I wanted nothing more than to comfort my baby. Nothing could have prepared me for how she was post-op. Intubated, sedated, and with a chest tube, she seemed too small and frail to ever come back from that surgery. Boy, did she prove me wrong.
Melanie had a total of five major surgeries while in the NICU. In addition to her TEF/EA and duodenal atresia, she developed hydrocephalus and had two separate brain surgeries. Her last surgery was her long gap EA repair, and while it was a success, recovery was far harder than we anticipated. Her chest tube stayed in for three weeks so we were unable to hold her, and she coded twice after failing extubations. Despite all our struggles, on day 148, she was discharged. That day remains the happiest day of my life, because it was the first time she got to meet her 2 year old big brother.
Looking at Melanie now, you’d never guess what she went through. She’s so happy and social, it feels impossible to imagine the start of her life, even for those of us who lived through it. With her condition, we still have a long road ahead, but I know Melanie will continue to amaze us.”