I am writing this after spending the past 140 days, 1,000 miles from home in the Advent Orlando NICU. I came to Daytona Beach for vacation in July of 2024, not knowing I would be forced to deliver my baby mid-vacation, barely over halfway through my pregnancy. My vacation was indefinitely extended when my son was born at 23 weeks. He weighed 1 pound, 0.6 ounces. To say the birth of my premature son was the scariest moment of my life would be a massive understatement; however, from the moment he was born, the staff at Advent Health gave my husband and me hope for our small boy.

This hope was what the three of us needed to persevere over the next four and a half months, months which my husband and I would spend facing the highs and lows of the NICU as transients, alternating between the Ronald McDonald House, hospital recliners, and the charity of nearby friends.

I'll never forget the pride in my heart when an RT first referred to my son's fiery personality. Seeing our tiny, 23-week, one-pound baby treated as a person touched my heart in ways I'll never be able to adequately put into words. During his NICU journey, we deeply appreciated the care, compassion, and dedication shown not only to our son but also to my husband and me by the team at AdventHealth for Children.

In the spirit of J. Patrick Barnes, my son, husband, and I would like to show appreciation in particular to our primary nurse, Mrs. Aime Gomez. Without Aime's care, compassion, intelligence, ingenuity, and unwavering advocacy, our son would be leaving the hospital with a G-tube, and we certainly wouldn't be going home to Ohio in time for Christmas. Though a zealous eater, my son, like most 23-weekers, would ultimately face some hurdles. Although he wanted to eat very badly, his bottles were punctuated with serious bouts of choking and screaming frustration.

As parents, our hearts broke to see him struggle and choke, eating less of each bottle. As discharge dates and his due date came and went, we knew that sooner rather than later, conversations were going to turn toward G-tube surgery. I spoke with friends and desperately combed mom groups for a solution to his choking. They recommended ultra-preemie bottles, which slowed down the choking but ultimately did not help his eating.

Aime never acted as though our sons' special needs were an insurmountable obstacle, nor an inconvenience; rather, a puzzle to be solved, a challenge to overcome. She fiercely advocated for our son to be put on an acid reflux formula. She was outspoken that it was worth a try, even when others were opposed. It turned out that Aime was right. All he needed was a thicker formula.

Her knowledge, ingenuity, and advocacy paid off for our sweet, hungry boy. He went from eating 8 mls and throwing fits to voraciously eating as much as he could. We'd found a solution, but with this solution, another problem arose. The thicker formula didn't come out of the standard hospital nipple fast enough, which was taking a physical toll on our son, wearing him out before he could finish the bottle. He was never going to get the nutrients he needed without the NG tube.

I went back to the mom groups and did some research, discovering the Mam Quick Start Anti-Colic. I thought it would be a good solution as it had a faster flow for thicker formula and had a unique shape that worked well for babies who struggled to fully open their mouths, like our son. We purchased the bottles but were hesitant as to how they'd be received if we brought them in. There were no issues with us bringing in our own bottles however, these bottles were already used by the hospital.

When I confessed to Aime that we'd purchased the bottles, but were hesitant to try them as I didn't want to make any waves, she left the room and came back with the proper paperwork. Aime said, "You're going to have to advocate for him for the rest of his life. May as well start now." Aime's continued advocacy wasn't just the reality check I needed, but exactly what our son needed as well. Though we ran into some bureaucratic opposition, since switching to the Mam anti-colic easy starts, our son has had his NG tube removed and eaten every bottle.

After seeing his success with this bottle, Aime explained this accommodation to me in an analogy that someone from a background in education would understand. "Your son wasn't failing the test because he didn't know the answers. He was failing the test because he couldn't read the questions. These bottles and this formula are his glasses."

Without Aime's skilled knowledge and impassioned support, there's no doubt in my mind that our son would be scheduled for another surgery. Amie's out-of-the-box thinking exemplifies the extraordinary efforts honored by the DAISY award. We are forever indebted to Aime for the care she showed to our tiny baby. Because of her, I will never stop advocating for my son. It is early December, and today is our son's 141st day in the NICU. Tomorrow, we are going home.