You’ve brought your NICU baby home. Now what?

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Bringing a baby home after a long stay in the neonatal intensive care unit is usually a joyful time, but it can also be a terrifying time.

Going from 24/7 care in the hospital to 24/7 care at home on your own is daunting for anyone tasked with keeping a tiny human alive.

Chase and Cortni Nourie remember their relief at being able to bring their son, Chandler, home after 88 days in the NICU, yet they can’t forget the fears they had from Day 1, namely could they get their baby to eat?

“I was terrified to start solid foods with Chandler,” Cortni Nourie said. “I didn’t want him to choke.”

Fortunately, the Whiteland couple have had the support of the Riley Children’s Health Early Intervention program through Indiana First Steps since Chandler was discharged last year.

First Steps is a program for children from birth to age 3 who need help to meet developmental milestones. Most babies who’ve spent time in the NICU require some level of support, particularly in the areas of feeding, speech and physical/occupational therapy.

While discharge marks the end of a hospital stay, it also begins a critical period of growth and development.

Chandler, 16 months old, was born at 28 weeks’ gestation, along with his twin, Carson, who lived for 13 days before passing away from necrotizing enterocolitis.

Last year, the family met Grace Anderson, a certified neonatal therapist with Riley’s First Steps program, and not only has Chandler bonded with the therapist, his parents are big fans of her as well. They are beyond grateful for the expertise and the compassion she has shown in the many months that she has been visiting the family’s home for Chandler’s therapy.

“Grace has been phenomenal,” Nourie said. “She’s a wealth of knowledge. We can see how invested she is and how much she truly cares about Chandler and our family and his growth.”

Certified neonatal therapists (CNT) receive advanced training in the developmental, medical and sensory needs of premature and medically complex infants. This specialized knowledge allows them to recognize subtle developmental concerns, implement evidence-based interventions, and support healthy development during the earliest stages of life, explained Heather Birk, manager of Riley’s Early Intervention/First Steps Program.

Babies like Chandler are why Anderson got into the speech pathology field and decided to become certified as a neonatal therapist.

“The NICU is the only ICU where you leave and go straight home, rather than to a step-down unit,” she said. (Riley recently opened a progressive NICU on its eighth floor to ease the transition to home.)

Providing continuity of care once a baby goes home is critical for the child and the family’s well-being, Anderson explained.

Therapists who understand an infant’s NICU journey can build on that care and create an easier transition to home. Parents get consistent guidance on feeding, positioning, play and developmental milestones.

“There are surgeries and things that have happened during their NICU course that will affect their first few years of life, so it’s important for us to get in there as early as possible so we are working together toward the family’s goals,” Anderson said.

When it came time for Chandler to begin eating solid foods, Anderson worked with his parents on what foods to buy, how to cut them and how to offer them to him.

“He has flourished with his eating,” Nourie said, adding that he even prefers to use a fork and spoon.

While Chandler did not require a feeding tube when he came home, he and other babies often develop a natural aversion to eating by mouth due to the lifesaving measures they underwent while hospitalized.

“They don’t see something touching their mouth as good,” Anderson said. “A lot of the therapy is to help the family understand how to safely and appropriately introduce feeding back to the child so they are coming to the table and wanting to participate in eating, rather than it just being something done to them.”

Along with eating challenges come speech and language difficulties down the road. When she is confident that feedings are going well, Anderson focuses on ensuring they are meeting speech milestones.

Chandler is a little behind in his speech, his mom said, though he babbles a lot and can say mama, dada and nana. Anderson has recommended books to read to him that encourage repetitive sounds and motions, as well as toys to help with those skills.

“I told Grace that I don’t know how people do this without her,” Nourie said. “I wouldn’t know to buy any of these books or how to talk to him using the correct terms, like saying bottle, not baba. I feel like a lot of his growth is because of her and all the things she does for him and how she cares for him.”

That is the goal, Birk said, noting that Anderson’s neonatal certification represents a commitment to excellence and to giving the smallest patients the strongest possible start through the Riley program.

“By combining advanced clinical knowledge with compassionate, family-centered care, Grace helps ensure children receive the support they need during one of the most important stages of life.”

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