NICU grad: And so the adventure begins

By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org

There was a lot of pomp and circumstance on the fourth floor of Riley Hospital for Children last week, which was appropriate, given the “graduation” of a tiny tot who spent five months in the hospital.

Surrounded by his beaming (and tearful) parents, Nicholas Nedza gazed quizzically at them and all of the team members who gathered to send the young family home after 147 days in the NICU.

Wearing a graduation cap crafted by nurse Courtney Hancock and a tiny onesie emblazoned with the words “And so the adventure begins,” 5-month-old Nicholas was ready to see the outside world for the very first time in his young life.

“Welcome to the chaos,” Liz Nedza laughed as she and husband Kory absorbed last-minute instructions from nurses and packed up their son’s hospital room.

“He’s a popular guy today,” she said, noting the line of people in the hallway ready to sing goodbye to Nicholas. “Considering how this all started, none of us thought …”

Her voice is swallowed up by the hoopla surrounding Nicholas’ farewell parade.

How it started was with Liz Nedza being admitted to Riley’s Maternity Tower with dangerously high blood pressure last November. Nicholas was delivered there at just 26 weeks, weighing 1 pound, 8 ounces.

The C-section saved Nedza’s life, but it meant a long, uphill battle for little Nicholas, who suffered many health problems common in premature infants, including NEC (necrotizing enterocolitis), respiratory issues and feeding challenges.

But on discharge day, he was up to 8 pounds, 10 ounces and was going home on nothing more than a G-tube for feedings.

Alongside him since early January has been one of his primary nurses, Anna Schmidt, who was delighted to see Nicholas being discharged last Wednesday, but also a little sad to be saying goodbye. In fact, she said, the entire family has been “a light in the Riley NICU.”

“Being a part of seeing him grow has been such a joy,” she said. “Taking care of Nicholas and getting to know Liz and Kory was one of the most impactful experiences of my nursing career. I learned so much from my time with him about the importance of advocating for patients and partnering with families to educate them to advocate for themselves and their children.”

Their “faithful presence and support” for their son helped ensure that he received the best possible care because they worked closely with his team every day, Schmidt said.

“Liz was such a strong presence of communication, and her voice was welcomed by the medical team. It can sometimes be difficult as a bedside nurse to believe that our voice matters or has the power to change the way that care is being delivered,” Schmidt said. “The Nedzas had such a passion to see our team bring all of our expertise together to see Nicholas do as well as he could.”

That collaboration was key, of course, but the love Nicholas’ care team showed him didn’t go unnoticed by Liz and Kory.

“This is also why Nicholas is doing so well,” Liz said, referring to the crowd of people in their son’s room and those waiting in the hall to see him off.

“He has a team of people who check on him, even when they don’t have him that day or they’re not working,” she said, adding, “We love Anna so much, and Nicholas loves her. She knows all about him and what he needs, and she advocates for him. It’s so great to have that continuity of care.”

Abbey Benjamin, a nurse practitioner in the neonatal unit, is one of those people who has come to see Nicholas off.

“It’s your time to shine, bro,” she says to her little patient. “Are you ready to break free?”

Watching the interaction, Liz quipped, “He’s breaking hearts left and right.”

That includes music therapist Kalin Hagedorn, occupational therapist Brittany McFarland and other team members who have connected with the Nedza family over the past several months and gathered to say goodbye.

The positive vibes in the room have rubbed off on Nicholas, who patiently tolerates one last temperature check, diaper change and clothing swap before the wagons are loaded and the family heads out to cheers, applause and final hugs.

When he gets home, his stroller will be waiting for him, Liz said, and both parents were eager to take him for his first walk outside on a beautiful day.

“We are excited,” she said. “We are terrified, but mostly excited.”

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

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