Born at 26 weeks, NICU baby is doing all the hard work it takes to go home, with help from a team of therapists and other specialists.
By Maureen Gilmer, IU Health senior writer, mgilmer1@iuhealth.org
Nicholas Nedza is the center of attention in the hospital room – just as he should be.
The little guy is surrounded by his mom, his music therapist and his occupational therapist, while a photographer and others record his every yawn, gurgle, sneeze and smile.
He has just turned 4 months old, but he tips the scale at a slight 7 pounds. His mom, Liz, coos to him, “You’re the size of a real baby now!”
Born three months prematurely in November at the Riley Maternity Tower, Nicholas entered this world weighing just 1 pound, 8 ounces.
He might have been content to stay in the cocoon of the womb longer, but it was his mom’s health that necessitated an emergency C-section.
PRE-ECLAMPSIA SCARE
Liz Nedza’s blood pressure was elevated at her 24-week checkup, so doctors admitted her to Riley to monitor her and baby, hoping to hold off delivering Nicholas until the pregnancy was further along.
The dangers of pre-eclampsia, however, were too risky, so Nicholas was delivered at 26 weeks.
He has spent the past four-plus months in the neonatal intensive care unit at Riley Hospital for Children.
That’s where music therapist Kalin Hagedorn and occupational therapist Brittany McFarland teamed up to treat baby Nicholas recently, with mom right there, watching, learning and participating in his care.
As Hagedorn gently strums her guitar and begins to softly sing, “Hello Nicholas,” McFarland carefully places the baby on a blanket on the floor, speaking quietly, while he slowly wakes up and takes in the view around him.
Near the window, where his gaze lands, are paper chains – one link for every day that mom and Nicholas have been in the hospital.
“I started it while I was still pregnant in the hospital, one for every day while trying to stay pregnant, which only lasted about two weeks,” Nedza said.
She continued it in the NICU, writing a little something on each link and adding it to the chain, which the couple plans to drape around their son’s nursery when he goes home.
“There were lots of scary days, but also lots of really great days, so we can look back and cry and laugh.”
POSITIVE TOUCH
Nicholas is soon alert and seems to be almost giggling as he is surrounded by soft music, soft touch and soft lighting.
“Babies born prematurely often are overstimulated, especially here with the beeping and the sticks and the pokes,” McFarland said.
“So, we’re typically fighting an uphill battle just getting them used to positive touch, positive sounds and positive interactions. This is great that he’s able to tolerate the music and being on the floor, changing positions and being touched – all at the same time.”
It’s a marked improvement from the early days, she said, when he was super tiny and had to be swaddled before she could even lightly touch one arm.
The same is true for Hagedorn, who has been able to add more songs to her repertoire when she visits Nicholas.
“When I met mom, I could just tell she cared so much for Nicholas, and she’s here every day. It makes such a difference,” Hagedorn said.
“She shared with me that she’s never been a music person but that she so appreciates this time with me and Nicholas. She and her husband have written two songs for Nicholas. All I did was provide a template and they did the rest.”
The process helps new parents bond with their baby and feel supported during the songwriting, the music therapist said.
The music therapy team also provided a voice recorder to Liz and Kory Nedza, so they could record family members’ voices talking to Nicholas. Also on the voice recorder are songs sung by Hagedorn, so he can listen to them when he goes home.
Seeing the therapists work together for her baby, Nedza can easily get emotional.
“I cry more, but it just shows the well-rounded care,” the first-time mom said. “It’s not just the doctors and the nurses; it’s everybody. For him and for us. We’ve been here five months and it’s exhausting, but with Brittany, just to see the strides he’s making. And with Kalin, it’s just so beautiful. He gets mad when she stops playing.”
“SWEET BOY NICHOLAS”
By now, he recognizes Hagedorn’s voice, so he opens his eyes a little more when she begins singing and his heart rate slows a little.
To the tune of “You Are My Sunshine,” she sings one of the songs written for Nicholas by his parents.
“You are our baby, our sweet boy Nicholas. You make us proud when you are brave. We’ll always be there when you need us. We love you more and more every day.”
As Hagedorn sings, McFarland positions Nicholas on his side, encouraging him to get used to how his body can move, stretching his little muscles.
When Hagedorn shifts into a more upbeat song, “Annabelle Pancake,” McFarland moves Nicholas onto his stomach to build up his core strength. Next up is “The Ants Go Marching” and a little gentle percussion action.
At one point, Nedza laughs at her little boy and his “old man expressions,” wrinkled forehead and all.
“His happy place is sitting up and looking around.”
“HE’S DOING ALL THE HARD WORK”
It’s not been an easy journey for Nedza or her husband, but they tag-team to be by their son’s side as much as possible. Liz Nedza, a teacher, is on leave from Brownsburg Schools.
The positive attitude she exudes might come naturally, but she acknowledges that in the early days after Nicholas’ birth, she was in a state of “ignorant bliss.”
“I was positive everything was going to be OK, and then looking back, I’m like, oh my gosh, there are so many things babies don’t make it past, and he did. I just feel like at this point, look at this guy,” she said. “We have no choice but to be positive. He’s doing all the hard work.”
Nicholas still requires some respiratory support and is working on feeding, but his progress has been impressive, even after surgery last week to repair a hernia and place a G-tube, she said.
“We’ve gotten lots of extra snuggles this past week, and I definitely have no problem with that.”
She credits their support system at home and at work, as well as at the hospital for her upbeat attitude.
“We just feel so well taken care of and loved by the doctors and nurses and therapists and lactation specialists,” she said. “Everybody is here not just for Nicholas, but for all of us. We just feel embraced.”
Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org
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