Jamysen Howard during her NICU stay in 2010.
From premature babies to complex conditions, the Neonatal Intensive Care Unit (NICU) at James and Connie Maynard Children’s Hospital sees the youngest patients at ECU Health Medical Center and provides high-quality, compassionate care while looking after families throughout their NICU journey.
Along the way, many families find a community and support system around them as they navigate the experience.
Thriving 12 years later
Tonya Howard found out at her 11-week ultrasound that her daughter would be born with her intestines outside of her body, a condition called gastroschisis.
While baby Jamysen grew, plans were lining up to have a pediatric surgeon join the team at Maynard Children’s Hospital at ECU Health Medical Center just in time for Jamysen’s arrival. However, when she came four weeks early, the pediatric surgeon received emergency privileges and successfully operated on her just after her birth.
Tonya said the supportive care team helped her and her family immensely during their time in the NICU. While they took care of Jamysen, they also kept the family up-to-date and informed.
“The NICU nurses who, probably about four or five of them I still talk to, kept me up with Jamysen’s progress,” Tonya said. “I had two other children at home, so I’d go home and spend the night and when I’d get up in the morning, the first thing I’d do is call the NICU to see how she did that night. The nurses were the ones that took care of her and they were with her all night.”
Jamysen is now in 7th grade, excels in school and plays volleyball for her school and travel teams.
She also said the NICU community is very strong and has been happy to serve as a support to other NICU families, including one that experienced gastroschisis, just like Jamysen.
Today, Jamysen is 12 years old and thriving. Tonya said while they were told there was possibility Jamysen could experience trouble with physical and mental development, she is now an honor roll student and plays volleyball with school and travel teams.
“We’ve always told her that she can do anything she wanted to do,” Tonya said. “I was like, ‘before you were one day old, you’d already been through a five-hour surgery so you know what, you can do anything you want to do.’ And she’s done just that. She knows she’s tough, she’s never had much fear and she’s headfirst into everything and always has been.”
Jamysen frequently participates in Children’s Miracle Network events as well.
Tonya has a unique perspective on the Maynard Children’s Hospital as a former team member in the pediatrics department, including time before the Children’s Hospital was built.
“At one point the NICU was just one big room. When Jamysen was born, the NICU was what it is now and each baby had their own individual room,” Tonya said. “Everything from the beds to the Child Life
Sorry, no posts matched your criteria.
and now they’ve progressed to where the parents can even log on and see their babies when they’re not able to be there. We didn’t have that while we were there but that’s just amazing.”Rallying around Waylon
Waylon Denny is shown in a crib after having a tracheostomy.
On July 23, 2016, Waylon Denny was born at 23 weeks, weighing 1 pound, 4 ounces. He spent the first 298 days of his life at the Maynard Children’s Hospital, beginning with about four months in the NICU.
Following a surgery for young Waylon, he became sick and needed immediate intervention. His providers knew one treatment, called extracorporeal membrane oxygenation (ECMO), could be lifesaving.
“I mean, they all really rallied right around us,” Waylon’s mother, Sara, said. “They got the doctors and everybody in the PICU that had anything to do with ECMO to come down to look at him to see if he would be a candidate for ECMO. And I truly believe if it was not for his respiratory therapists and nurses fighting for him that day I really do not believe that he would even be here.”
ECMO is a treatment where blood is pumped out of your body and into a machine that removes carbon dioxide and then flows blood back to tissues in the body. One of the providers fighting for Waylon was Dr. Shannon Longshore.
“I remember Dr. Longshore telling us that in a baby his size, 23 weeks, he was already swollen,” Sara said. “Everything he had been through, she should not have been able to get the [tubes] in his neck. And I remember her telling us that she looked at the team in that room and told them that she was going to keep trying because we were two weeks away from going home. And she closed her eyes and told God if it was his will or for him to live, they would go in. Well, those [tubes] went in.”
Waylon started kindergarten this year.
Sara was a first time mom and said it was hard to know what questions to even ask. Luckily, she said, the doctors, nurses and respiratory therapists were there to help. They explained things to her and the family and checked on them frequently.
Six years later, the check-ins have not stopped, she said.
“We’ve had so many nurses, doctors, respiratory therapists, physical therapists and occupational therapists friend us on Facebook just so they can keep following him and see how he’s doing,” Sara said. “And then when we were able to go to the hospital before COVID, and we would go and visit the NICU and the PICU and everywhere where he had been.”
Waylon is six and starting kindergarten and has met every challenge he’s faced in his young life head-on.
September is NICU Awareness Month and Sara said that she and Waylon have NICU Awareness Day (Sept. 30) t-shirts that they wear each year and she’s looking forward to celebrating and recognizing the day once again with her miracle son.
Twins fight through NICU together
Twins Molly and Lucy Davis are shown during their NICU stay.
Owen and her husband Garrett Davis were expecting twins and enjoying a family vacation before welcoming the new additions to their family. But their vacation was cut short when Owen could feel something was not right and she went into labor at 22 weeks.
Molly and Lucy Davis came into the world each weighing just 1 pound, 9 ounces and were immediately placed in the NICU at Maynard Children’s Hospital. The twins were both fighting infections early on in their lives and experienced many tests, treatments, procedures and exams over their 128 days in the NICU.
Owen said they experienced the full range of the NICU rollercoaster during their stay, but they were comforted along the way by the supportive and caring team at the hospital.
“One of the biggest things that I remember were the nurses and our neonatologists,” Owen said. “We still keep in touch with them really on a daily basis. Some of our nurses babysit for us, which is really special. Just the people that we encountered throughout our long stay made it bearable.”
Along with the great support of care teams, Owen said some of her family’s closest friends came from their time in the NICU. She said it is a special bond and shared experience for families of NICU children.
Recently, Owen had someone reach out to her on social media saying their friend was about to have a child at 23 weeks and the two got in touch with each other.
The Davis family takes a photo at the beach.
“It’s really cool to have that connection and to be able to provide insight and support to other families going through what we’ve been through,” Owen said. “So I’ve been in touch with basically a stranger from across the country who saw our story and reached out for some guidance and just a listening ear to be able to bounce questions off of and support and vent. It’s hard to understand unless you’ve been through it.”
Being open with her family’s story has brought comfort to others and she’s happy that her twin daughters are beginning to understand their own story as well.
She said it’s important to her that Molly and Lucy know how strong they are and that their parents advocated and fought for them from the time they were born.
“It was super hard and trying, but it’s also their testimony and they understand that at 3 years old. It’s really two miracles that we were able to witness,” Owen said. “They know, as much as a 3-year-old can. We have their blessing beads, these little beads that they got for every procedure and every test they had, we have them hanging up on their beds and we have their first diapers that are about the size of a credit card. We keep two of those on our entryway table in our living room as a constant reminder of what they’ve been through.”
Owen said she has a video that she put together of her daughters’ NICU stay that shows up in her memories each September and serves as a reminder of the importance of the month for her family — and so many others.