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Northwestern NICU app gives parents baby's vital signs, updates to ease their minds

Chicago Tribune - 7/19/2019

Jul. 18--One of the toughest moments for first-time parents Emily and Aron Dorner of Chicago was the day they left the hospital without their two-day-old daughter, born prematurely, who remained in the neonatal intensive care unit.

"You have this vision of delivering your baby and walking out of the hospital with a car seat," Emily Dorner said. Leaving without her "was probably one of the lowest points of the entire experience. It was really scary."

The Dorners were shocked when Emily, 30, started having contractions in late April, more than 11 weeks before her due date. Baby Sloane was born the next day, weighing 2 pounds, 10 ounces.

Because Sloane needed oxygen, a feeding tube and other supports, she had to stay behind in the NICU for about nine weeks after Emily Dorner was discharged from Northwestern Medicine Prentice Women's Hospital.

Although the Dorners planned to stay with their baby as much as possible, they had to return home at night to sleep. And due to Aron Dorner's leave policy, he had to resume work, so he could take paternity leave once Sloane was home.

Shortly after Sloane was born, the Dorners learned of an app called Smart NICU2Home, developed by Northwestern physicians and engineers, that allowed them to check Sloane's vital signs when they weren't by her side, and to receive other educational information as they navigated life as NICU parents.

The app -- now available to some NICU families at Prentice, but expected to be widely available at a later date -- was designed to give parents peace of mind and confidence during the often overwhelming experience of having a newborn in the NICU, said Dr. Craig Garfield, the Ann & Robert H. Lurie Children's Hospital physician and Northwestern professor of pediatrics who developed the app.

"These parents ... are really thrown into this crazy world," he said. "Parents are often in such a state of shock and stress that they really can't hear or take in the information that we're giving them."

Recognizing this several years ago, Garfield teamed up with engineer Young Lee, a Northwestern adjunct assistant professor of medical social sciences, to develop the first version of the app, which supplied parents with information once the baby neared discharge.

But parents provided feedback that they wished they had more information about their baby, specifically, and throughout their entire NICU stay, Garfield said.

That led to the revised version of the app, launched several months ago. It links to babies' medical charts and is available to parents as soon as babies arrive in the NICU, Garfield said. Because the group is studying how parents react to the app, it's only available to some patients, he said, adding that he hopes it will be available NICU-wide soon, and potentially at hospitals across the country.

The app updates throughout the day, providing various vital signs (like the baby's weight), and tracking growth and milestones. It also supplies information related to the age of that particular baby, Garfield said. Parents may also share access with relatives and include photos, like having a more private social media account.

Garfield said the app is also designed not to overwhelm parents with too much information and doesn't include some medical data that's best delivered by a doctor who can help parents decipher what it means for their baby.

But for parents who might worry about their baby as they return home for the night, it helps them "feel like they're included, helps them with their communication and helps ... so they are not as stressed in the morning," he said, pointing out many parents must work or take care of other children during their baby's NICU stay. "Even if ... they are at home, they are thinking about that baby constantly."

The Dorners said they would excitedly check the app each morning when they woke, even racing to see who could read it first. They'd celebrate at the number of grams Sloane had gained since they'd seen her the previous evening, or if she had had "no breathing events," meaning good oxygen levels throughout the night.

"That's information we wouldn't have had without the app," Aron Dorner said.

Emily Dorner said she appreciated a button on the app that would directly call the NICU, and she could also look up the names of each nurse and doctor currently assigned to Sloane. The ability to share updates with family and friends, including some in England, where Aron is from, kept them from being on their phones constantly, she said, instead focusing on Sloane.

The educational component of the app also "stopped us from Googling things," Aron Dorner said, keeping the couple calm and properly informed.

Since Sloane left the NICU last month and has settled into the Dorners' Near North Side home, they still use the app to aid in taking care of their baby on their own, without NICU staff. Aron Dorner said he recently used it to read about Sloane's sleep schedule.

Lee said the team that developed the app is constantly seeking feedback to fine-tune features. He said it's important to study how the app assists families to make sure it doesn't overwhelm and add further stress.

Friends of Prentice funded the app with a grant of more than $500,000, which President Cheryl Skender said is the largest the group has issued for a project. The app was chosen as a recipient because of the benefit it would provide to parents, Skender said.

"Not that (NICU staff) weren't exceptionally capable ... but how many times do we wake up in the middle of the night and our heads are turning in different directions?" she said. "We just thought it would be a very meaningful tool."

kthayer@chicagotribune.com

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