Atlas Turner was born with most of his abdominal organs on the outside of his body. His parents, Sara and Kevin, learned of the defect, called omphalocele, while Atlas was in utero at 24 weeks old. After a long stay in the NICU, the Turners remained connected to the care team from home thanks to the Remote Patient Monitoring Program.
Before their son, Atlas, was born, Sara and Kevin Turner were well-prepared for an extended stay in our Newborn Intensive Care Unit (NICU).
Doctors explained how Atlas had a rare defect, known as omphalocele, in which the bowel, liver and sometimes other organs remain outside the belly in a sac. Atlas would require surgery after birth, as well as extra care and monitoring.
For Atlas, he would remain in the NICU for a total of 75 days, with doctors performing the necessary surgery six weeks after he was born in November 2018.
Before leaving the hospital, though, the Turners enrolled their son in the Remote Patient Monitoring (RPM) Program through the Center for Telehealth. The program is designed for fragile babies who are on feeding tubes, oxygen therapy or both.
The goal is to provide ongoing surveillance by the RPM nurses and NICU clinical team after babies arrive home.
Babies remain in the program until they achieve certain developmental milestones. The average stay is 55 days.
In Atlas’ case, he was no longer on oxygen therapy when he was discharged home, but stayed in the program for approximately 60 days.
“When Kevin and I brought Atlas home after such a long stay in the NICU, it felt a little scary not having nurses and doctors nearby,” said Sara. “RPM was so helpful to us. It gave us great peace of mind knowing that someone else was watching over Atlas.”
Kylee Peppers, an RPM nurse, cites some of the program’s many benefits:
“Being at home allows them to develop a more predicable eating and sleeping schedule, and they tend to gain weight steadily,” said Peppers. “RPM benefits parents and the rest of the family, too, because they aren’t going back and forth to the hospital.”
Sara, in particular, liked having someone to go to for questions.
“As a mom it was great to have an avenue to contact someone immediately with an issue, to know someone else was watching – an extra set of eyes,” said Sara.
The RPM program allowed for two-way communication between the Turners and the nursing team. Twice a week Atlas was weighed at home on a special infant scale which transmitted biometric data to the RPM nursing team.
Additionally, three times a week the Turners answered questions about Atlas via a mobile app, including: how much was he eating, is he holding his food down, etc.
If problems were noticed, RPM nurses could use video or a phone call to communicate with Sara and Kevin in real time. If NICU nurses were needed, they were included as well.
“Even though we were using technology, we felt like we had a personal connection with the nurses,” said Sara. “It was an on-going conversation. It didn’t feel robotic or automated.”
Atlas continues to do well. He’s no longer on a feeding tube, and his oxygen and heart rates are still being tracked by his parents so they can remain informed. Atlas goes to the NICU for follow-up appointments, and upcoming surgeries are planned for hernias and tubes in his ears.
“So far so good,” said Sara. “He’s incredibly resilient. He teaches us so much about strength every day.”
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