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Growing @ Home program helps NICU babies go home sooner, develop better

New study details the OHSU Doernbecher Children’s Hospital program’s success in leveraging digital platform for remote care, monitoring
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OHSU Doernbecher Children’s Hospital’s Growing @ Home program provides seamless transition from hospital to home for babies, such as Jaron and Julian Lucas, and their parents, allowing them to return to their home communities while keeping around-the-clock care. (Courtesy of Kelsey Lucas)
OHSU Doernbecher Children’s Hospital’s Growing @ Home program provides seamless transition from hospital to home for babies, such as Jaron and Julian Lucas, and their parents, allowing them to return to their home communities while keeping around-the-clock care. (Courtesy of Kelsey Lucas)

Almost three years since its launch, the OHSU Doernbecher Children’s Hospital program “Growing @ Home” has successfully facilitated early discharges for nearly 200 infants in the neonatal intensive care unit, NICU, who required ongoing feeding assistance.

The study, completed by OHSU physician-scientists and published in the Journal of Perinatology, found that of the first 104 babies sent home with the program, more than 85% successfully transitioned off their feeding tubes to normal feeding. Babies required, on average, only five days of tube feeding at home.

Since OHSU Doernbecher serves families across the Pacific Northwest, Growing @ Home allows babies and their parents to return to their home communities sooner, with continued around-the-clock care from clinical teams.

Jamie Warren, M.D. (OHSU)
Jamie Warren, M.D. (OHSU)

“Infants develop better in their home environments, so our main goal is for babies to return home with their families, to a more quiet, relaxed and comfortable space,” said Jamie B. Warren, M.D., associate professor of pediatrics in the OHSU School of Medicine. “This also opens up beds in our NICU for babies who need critical care.”

Before a baby can be discharged from the NICU, they need to be able to breathe on their own; maintain a stable body temperature without the use of an external heater; and achieve feeding by mouth. Even if other health milestones have been reached, oral feeding can extend a hospital stay significantly since hospital staff still need to feed them, record how much they ate and weigh them at regular intervals.

Realizing that parents could easily perform many of these tasks on their own, providers in the Doernbecher NICU established the Growing @ Home program, which uses an innovative digital platform to help parents at home do the feeding and monitoring that would typically be done at the hospital.

Transition to home care

The program offers access to the same tracking capabilities available at the hospital. Parents are sent home with an iPad, where they can easily log their child’s vitals into a specialized medical app, which links seamlessly to the hospital and is reviewed daily by their medical provider. They can even upload photos and videos of potential health concerns, and the app then provides red-flag warnings to parents and directs them on next steps.

“We’re proud to say that since launching Growing @ Home, we’ve been able to safely send home 180 babies,” Warren said.

Warren adds that the 15% of babies who still needed long-term tube feeding support weren’t unsuccessful in the program, but rather had more complex NICU stays, which often require longer transitions to oral feeding.

“This smaller subset of babies is typically born extremely prematurely or have had surgeries or other medical procedures, which can affect their growth and development,” Warren explained. “Still, the program provided a benefit because it allowed them to go home and work together remotely with their care team to figure out what is needed to reach those important milestones.”

Warren says the study not only provides a proof-point for success of remote care and monitoring, but also describes in detail how OHSU implemented the program, so that other hospitals around the country can consider developing similar programs.  

“It’s beneficial, it’s safe and increased capacity and cost savings for hospitals,” she said. “Most importantly, it’s the right thing to do for families.”

Reuniting families

For Kelsey Lucas and her husband, Cassius, it was life-changing to be able to bring their twin boys home early.

The couple was overjoyed to discover they were expecting twins, but experienced significant challenges throughout the pregnancy. Early on it was discovered that the babies had a potentially life-threatening condition called twin-to-twin transfusion syndrome, or TTTS. The condition required an in-utero surgery, followed by constant appointments and ultrasounds to ensure the twins were both developing healthily.

Defying the odds, the twins, named Julian and Jaron, were both delivered at their target due date of 32 weeks. Jaron was born just over three pounds, while Julian weighed in at only about one and three-quarter pounds.

To donate to the Growing @ Home program, visit the OHSU Foundation.

Julian and Jaron spent 61 days in the NICU before they were stable enough to be discharged under the Growing @ Home program. The Lucases were thrilled when they received the news that they could take both babies home.

“It was so exciting to find out we could go home and be together as a family again,” Kelsey recalled. “My other children were really struggling having me gone so much and with not being able to meet their brothers. We also live over an hour away, so it was incredibly hard to get back and forth all the time.”

Even though the twins were no longer at the hospital, the Lucases were prepared with detailed instructions on feeding and monitoring, and were also required to take CPR and safety trainings to prepare for any emergencies that may arise. They continued to receive around-the-clock virtual care and support from the NICU providers.

“We were so well taken care of, which made a hard transition much smoother,” Kelsey said. “I was on the phone with the doctors every day, which was so reassuring. Even with the little things, I felt like I could call them they would support me however I needed.”

Several years later, Julian and Jaron are healthy, happy and thriving. While they’re physically smaller than their 3-year-old peers, Lucas said that doesn’t hold them back from anything in life.

“They’re going at a slower pace, but they’re totally healthy and catching up all the time,” she said.  

Looking forward, Warren is prioritizing research that will investigate the economic, psychosocial and nutritional impacts of the program and hypothesizes that being able to return home earlier may aid in achieving other developmental milestones.

“We believe that for most babies and families, home is the best place to be,” Warren said. “What we want to show is that Growing @ Home is safe and effective, and potentially even more beneficial than receiving care at a hospital.”

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