How specialized pediatric care helped one infant grow stronger while waiting for her next heart surgery.
When Avianna Grace was born with complex cardiac medical needs, her parents knew their journey would look different than they had imagined. Instead of bringing their newborn home, they entered a world of NICU stays, pediatric specialists, surgeries, and months of waiting.
Following her initial hospitalization, Avianna reached a point where she no longer required the intensity of an acute care children’s hospital. However, before she could safely undergo her next heart surgery, she needed more time to grow stronger. She needed to gain weight, improve her feeding skills, and continue developing while remaining close to the specialized cardiac care she would soon need again.
For Avianna’s family, living several hours from a pediatric cardiac center posed challenges. This meant staying close to her medical team was an important part of her care. That’s when Totally Kids Rehabilitation Hospital became the next step in her journey.
At Totally Kids, Avianna received individualized care designed around her unique needs. Her interdisciplinary team included pediatric nursing, physician oversight, nutrition management, and speech, occupational, and physical therapies to support her feeding, strength, and developmental progress. Although she was not participating in an intensive rehabilitation schedule, every therapy session and every feeding had a purpose: helping her grow stronger for surgery.
“For babies who aren’t yet ready to return home, our team provides specialized pediatric nursing, nutritional support, feeding therapy, rehabilitation services, and family-centered care,” said Averyl Narvasa, MSN, CPNP-PC, Pediatric Nurse Practitioner at Totally Kids Rehabilitation Hospital. “Every milestone moves them one step closer to the ultimate goal of going home.”
During her stay, Avianna doubled her weight, growing from just over three kilograms to nearly six. Her feeding coordination improved, her endurance increased, and she continued reaching developmental milestones with the support of her care team.
The progress was so meaningful that her anticipated heart surgery, originally expected in October, was moved to August, bringing her family two months closer to the next chapter of their journey.
For Avianna’s parents, the impact extended beyond her medical progress.
After months in traditional hospital settings, Totally Kids gave them the opportunity to focus on being a family while remaining close to the specialized care their daughter needed. They celebrated milestones together, welcomed visits from loved ones, and found moments of normalcy during an otherwise difficult season.
“TK has become our second home and our nurses and therapists have become like a second family,” Avianna’s mother shared. “Every day feels like we were moving forward.”
Today, Avianna continues her cardiac journey stronger than when she arrived. Her story is a reminder that healing is often measured in small victories, an extra ounce gained, a stronger feeding, another developmental milestone, and the support of a team working toward one shared goal: going home.