Editor’s note: A mother with a terrifyingly tiny preemie. A hospital volunteer who has been there herself. And a nurse whose mission is being there for moms. This story follows the intersecting lines of three women and the bonds created on the floor of a neonatal intensive care unit.

A pregnant Meagan Lilly came to Novant Health Forsyth Medical Center in Winston-Salem Feb. 9 with terrible pain under her right breast and dangerously elevated blood pressure.

The problem initially seemed to be her gallbladder. A doctor told her it needed to come out; nurses assured her that her second baby – she was already mother to a 4-year-old daughter – would be fine during the procedure.

But then, further investigation revealed her platelets were low, which changed her diagnosis. She had HELLP Syndrome – Hemolysis, elevated liver enzymes, low platelets. That’s a rare and life-threatening pregnancy complication and a type of preeclampsia, which is high blood pressure that can develop during pregnancy.

She was only six months along, but she needed an emergency C-section. While being prepped for surgery, she talked to NICU doctors about what would happen with her newborn right after delivery. “This was not the birth plan I expected,” she said.

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She and her husband, David, didn’t even know if they were having a boy or girl. They had planned a gender reveal for an upcoming baby shower. Lilly marvels at her timing. If she’d waited much longer to go to the ER, “neither my baby nor I would be here,” she said.

The Lillys’ son, Hudson, weighed just 1 pound, 6 ounces at birth. He went straight to the NICU, so Lilly didn’t get to hold him right away. Two days after Hudson’s sudden arrival, she held him for the first time.

“It was heartbreaking, breathtaking, wonderful,” she said.

‘Home away from home’

Lilly, who lives in Yadkinville, said, “There’s so much uncertainty during pregnancy. You can do everything right and still ...” Her voice trailed off.

Even when you’ve taken good care of yourself during pregnancy, you may still find yourself in the NICU. Nearly three months after Hudson’s birth, he’s still there. And so is she. Day … after day … after day.

She appreciates that she can come to the NICU anytime – 24/7. She’s usually there, holding Hudson, about three hours every day. “We’ve definitely bonded with him,” she said. “He opens his eyes and looks at us. We help take care of him – change his diapers, take his temperature.

“A lot of things are unfair” about having a preemie, she added. “You didn’t get to take your baby home when you were supposed to. You didn’t get to carry your baby for as long as you wanted or have that pretty bump. You didn’t get a baby shower before.”

Yet she feels blessed that Hudson is in such capable hands. “I couldn’t ask for better care than we’re getting here,” she said. “Everyone’s been amazing.”

Lilly is being cared for, too. There’s a sisterhood among NICU moms, nurses and volunteers. “It’s important to know you’re not alone,” Lilly said. “The women in the NICU have seen it all, and they know the right things to say.”

One day at a time

Martha Harrelson, NICU nurse manager, has certainly seen it all. This July, she will celebrate 44 years of working with newborns at Forsyth Medical Center. Harrelson advised Lilly, as she does all the NICU moms: “Take one day at a time.”

FMC  Nicu Mothers Day group shot
From left to right: Meagan Lilly, Martha Harrelson and Amy Hooker.

The NICU is a rollercoaster. A baby can be doing well for several consecutive days and suddenly have a setback. After being on an upward trajectory, Hudson recently developed a UTI and was put on antibiotics.

“There was one day I just couldn’t come because I was too heartbroken,” Lilly said. “But my husband came. It’s difficult to see your child hooked up to all that machinery. I’m his mom, and I’m supposed to be protecting him, and I can’t.”

Her support system, including Harrelson, is a life raft on tough days. “Martha has been so supportive,” Lilly said. “She came over and gave me a big hug one day when I was falling apart.”

Every family is precious to Harrelson. “Every story and every memory are a part of me,” she said.

She recently returned to the NICU after several years in another department – but one that still allowed her to work with new moms and babies. “God brought me back,” she said. “Being able to finish my career doing something I absolutely love – I can’t put it into words. To see these moms go from being scared to touch their babies to being able to take their babies home and be the mamas they were meant to be is so special.”

The staff forms close bonds with the babies and their parents. And NICU families form lasting bonds with staff and other preemie parents. Amy and Jason Hooker – NICU parents two decades ago – met another NICU couple, also named Amy and Jason, during their son’s NICU stay. They’re friends to this day.

“Connecting with other families is so important,” said Amy Hooker, “because you can feel very isolated and lonely.”

‘A mom who gets it’

Hooker’s second child, Caleb, was born in 2003 at 24½ weeks. He weighed 1 pound, 11 ounces.

She appreciated the support she got so much that she’s been coming back to the NICU to support other moms of preemies for 15 years. She spends 12 hours each week in the NICU as part of her volunteer role with the Family Support Network, an outreach of The Centers for Exceptional Children.

“I don't have a medical degree,” she said. “But I’m a mom who gets it. Just walking up to the bedside to tell moms I’ve been where they are, there’s an immediate connection.”

Harrelson, already a NICU veteran in 2003, was Caleb’s first nurse.

Hooker recalled her own fear, but said, “Martha made us feel at ease and answered every question we had. And she made me hold that baby.”

Harrelson is astonished by Hooker’s vivid memories of that day. “Amy remembers every detail,” she said. “I love that about working in the NICU: You get to have an impact you don’t even know about until many years later.”

Indeed, the details are cemented in Hooker’s mind. “Caleb’s eyes were still fused and his skin was transparent,” she said. “I will never forget being at his bedside when he was 5 days old when Martha said, ‘You are going to hold Caleb today.’ She didn’t ask; she told me. I sat down, and she put him on my bare chest. I remember him feeling sticky. He was as wide as my thumb.

“How could I ever forget Martha? She gave me the greatest feeling in the world – holding my baby.”

The Hookers experienced the NICU rollercoaster Harrelson warns families about. Caleb’s bowels perforated when he was just a week old, and he was transferred to another hospital for surgery. But the Hookers never lost touch with Harrelson. “Here we are 21 years later, and Martha still asks how Caleb is doing every time I see her,” Hooker said.

The Hookers are parents of six. They have two biological children – Madison 25, and Caleb. Between Madison and Caleb, Hooker had two miscarriages. The couple later adopted four siblings. Shelly and Beau are 15-year-old twins; Jacob is 14 and Piper’s 12.

Caleb isn’t the couple’s only preemie. Madison had a 10-day NICU stay at Forsyth Medical after being born at 34 weeks. “I was devastated to leave her when I went home,” Hooker said. “I remember meeting a family who had been in the NICU for three months, and my husband and I couldn’t imagine having to stay that long.”

That was before Caleb’s five-month NICU stay.

Happy and sad tears

So, when she volunteers in Forsyth Medical Center’s NICU, her perspective is invaluable to the parents she meets. She’s there as a sounding board and support, but she also plans crafts and other group activities to bring NICU families together.

“She’s so encouraging,” Harrelson said. “She’s helped create a community among the moms.”

When meeting a family for the first time, Hooker explains that she’s a family support coordinator and, more importantly, a mom to two NICU babies. “You can see an immediate change in their posture, their eyes and their voice,” she said. “It's an instant connection.”

Parents are always interested in how Hooker’s now-grown NICU babies are. “I’m very careful about how I answer that question,” she said. “NICU babies have different outcomes. I have seen a 12-ounce baby survive and go home, and I’ve been with families who lost their baby. I have shed happy and sad tears with these families.

“Caleb is an amazing young man who has taught me so much,” his mom said. “He’s smart; he had a 4.0 (grade point) average in high school. And he’s kind and funny.”

But he also has conditions related to his premature birth – mild cerebral palsy, a visual impairment and septo-optic dysplasia. That’s when two or more of the following conditions are present: optic nerve hypoplasia, midline brain abnormalities and pituitary gland abnormalities. It’s rare, impacting only one out of every 10,000 babies.

FMC nicu mom and hudson
Hudson has been in the NICU for more than 2 months. Lilly looks forward to the day she can take him home, just as she's seen other moms do with their children.

When Hooker approaches a new family, it can feel like 2003 all over again. She felt it when she saw Lilly for the first time standing beside Hudson’s isolette. “It’s like seeing yourself,” she said. “All the feelings come back. Meagan and I made an immediate connection.”

​Hudson has now been in the NICU for more than 80 days. ​Lilly has seen other moms take their babies home and is eager for the day she can do the same. “We’re in similar situations but on different paths,” she said. “And it’s emotionally exhausting for all of us.”

Hudson’s due date was May 14, so they’ll likely remain in the NICU until at least then. Progress is slow – and not always linear – but NICU families learn to celebrate milestones along the way. Hudson is now up to 4 pounds, 11 ounces – a big achievement. Said his mom, “God is amazing, and so is the NICU team.”


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