A 5-month NICU stay. A lifetime of devotion to parents of preemies.

Heather Hucks delivered her son when she was just 24 weeks and one day pregnant. “Tucker was born literally one day past the viability point,” she said.

Twelve years later, she remembers every detail of that time – and of the following 151 days Tucker spent at the Hemby Children’s Hospital NICU within Novant Health Presbyterian Medical Center.

He was a micropreemie – a baby born before the 26th week of pregnancy or one weighing less than 28 ounces. At 1 pound, 7 ounces, Tucker weighed 23 ounces.

He was a micropreemie – a baby born before the 26th week of pregnancy or one weighing less than 28 ounces. At 1 pound, 7 ounces, Tucker weighed 23 ounces.

It wasn’t just those days in the NICU that were fraught. Hucks and her husband, Darrin, didn’t know for years if, and how, Tucker would be affected by his early arrival.

A neonatologist had warned her that a baby born at 24 weeks could face significant, potentially long-term, challenges. He said that about a third of babies born then face big, lifetime obstacles requiring significant intervention, Hucks said. “Another third will need several years of therapy, but over time, can thrive and meet typical milestones. The other third may only need a small amount of help in that first year, but that’s it.”

But here is the scariest part: You don’t know which third your baby is in until they start missing milestones.

So, they watched. And waited.

At 18 months, Tucker needed feeding and occupational therapy, but that turned out to be the extent of it. He has no long-term effects from his prematurity.

During her family’s NICU days, Hucks found comfort in a quote that she still shares with other NICU moms and dads: “The mighty oak was once a little nut that stood its ground.”

Says Hucks, “I love this quote from Anodea Judith because it so closely personifies Tucker and all babies in the NICU. These babies are born with so many obstacles to overcome before they can go home. But what I have witnessed is that the babies in those isolettes are so resilient. They may be tiny, but they stand their ground, and they thrive.”

Today, Tucker plays the drums in a rock band. “It’s all seventh graders, and they’re called The Throwbacks,” said the proud mom. “They play The Beatles, Van Morrison, Bon Jovi, Michael Jackson, Guns & Roses. To watch him play is amazing – especially knowing that for years, we didn’t know if he’d be OK.”

And because she still recalls Tucker’s frightening early days with such clarity, she’s made it a mission to help other families at Hemby who are facing their own anxious days.

Forever friendships

A NICU social worker helped the Huckses, who live in Concord, secure a room at the Ronald McDonald House in Charlotte. They couldn’t imagine being 45 minutes away from their son. “That was great because we both work full-time,” said Hucks, an executive at Coca-Cola Bottling Co. Consolidated in Charlotte. “Doctors make their rounds at 8 a.m. every day, so we made sure we were at Tucker’s bedside at 8 every morning.”

Each night, they’d return and read to Tucker. “The Very Hungry Caterpillar” and “Good Night Moon” were in heavy rotation.

“Routines for NICU parents are super important because this is not where you want or planned to be,” Hucks said. “It’s not how you imagined your baby’s first few days, weeks, months. So, every little thing you can do to create some normalcy helps. The NICU nurses let parents do as much as we’re able to. It makes a big difference.”

NICU babies are assigned primary nurses. “Whenever ‘your’ primary nurse is on duty, they’ll be assigned to your baby,” Hucks said. “The primary nurses get to know your baby as well as you do. We had three primary nurses for the day and three at night. We still keep in touch with all six of them. They are angels, and I will never think about Tucker’s first year of life without thinking of those nurses.”

Phyllis Waddell, NICU nurse manager at Hemby, works hard to earn parents’ trust.

“We want the family to be comfortable leaving their baby with us,” she said. “Obviously, that doesn’t happen overnight. We do our best to promote that through primary nursing. Primaries form bonds with the family, and those bonds can last a lifetime. Primaries get invited to their former patients’ birthday parties and graduations.”

Bonds form among NICU parents, too. Lasting ones. The Huckses are still in touch with some of the NICU families they met during their stay.

Paying it forward

The NICU experience profoundly changed Hucks. “It affected me much more than it will ever affect Tucker,” she said.

The Huckses wanted to help other NICU families. When a NICU nurse suggested Hucks meet Candace Richter – another NICU mom – Richter shared her idea about starting a nonprofit to help other families. That’s how Bee Mighty was created.

Today, the nonprofit is led by founders Hucks and Richter with another NICU mom, Lindsay Franks. It serves NICU families in the greater Charlotte area by providing resources, including grants for medical equipment and therapy, free mental health counseling, “bedrest bundles” for moms and peer-to-peer mentoring. The group serves roughly 100 families each year.

“Even great insurance doesn’t cover a lot of what these kids need once they come home,” Hucks said. “It might cover 25 or 30 therapy sessions a year, but if your baby’s had a brain bleed, for example, he’s probably going to need 100 sessions across multiple disciplines throughout his development. What insurance doesn’t cover, Bee Mighty steps in to help with – medical equipment; occupational, physical and speech therapy; and more.” The organization also provides free mental health counseling for families.

“Life in the NICU and immediately after is traumatic, and it can be really hard to know where to find support,” Hucks said.

Bee Mighty, which launched in 2012, receives money from donors, grants and fundraisers to help fund operations. Hucks serves as chair of the organization’s board of directors, and the nonprofit has a part-time executive director plus two other part-time staffers.

Bee Mighty volunteers – including Hucks and other former NICU parents – bring supper to the NICU once a month. Hucks stays to talk to and comfort NICU parents, often for up to two hours. “Sometimes the only thing that helps is when someone who has been down this same rocky road sits with you in the ditch and just listens,” she said.

That’s not all. The Huckses facilitated in 2013, the construction of “Tucker’s Room,” a comfortable, private space dedicated to NICU families. It was made possible by support from Novant Health Foundation through a generous grant to Novant Health from Speedway Children's Charity.

“At the time, there was only one big, open space shared by families on the maternity and NICU floors,” Hucks said. “The space was sometimes difficult to navigate for NICU families who have just been thrown into a very emotional circumstance. Families awaiting news of critical procedures for their fragile NICU babies were waiting in the same space with exuberant grandparents of healthy babies.”

Being a NICU parent isn’t easy, but Hucks found a silver lining. “I tell people all the time that the gift of this very difficult experience was perspective,” she said. “The most profound difference in the person I was before and the person I am after is an opened space in my heart for service. When your baby is in the NICU, there is so little you can do to control outcomes. You must trust and rely on other people.

“My husband and I knew when we left the NICU, we would work to serve our community in a way that honored all the people who served us so well.”

A NICU journey: One family’s story at Hemby Children’s Hospital

Hucks had three miscarriages before getting pregnant with Tucker. So, she was nervous throughout her pregnancy.

She had gone to Novant Health Huntersville Medical Center when she began bleeding at about 22 weeks. After two nights, she was transferred to Novant Health Presbyterian, where she delivered Tucker by emergency C-section after more bleeding.

And that’s when their NICU odyssey began. The Huckses saw their son, whom they couldn’t hold until he was three weeks old, reach many milestones while in Novant Health Hemby Children’s Hospital’s NICU.

A PICC line

“Micropreemies usually need a PICC line inserted,” Hucks said. “That’s how they get medicine and nutrition. But micropreemies’ veins are super small – the size of a spaghetti noodle – so you can imagine how difficult it is to get a PICC line in.”

When Tucker was three days old, all the NICU doctors tried to insert one – without success. They thought they’d have to do surgery, but operating on a three-day-old, one-pound baby is risky. A neonatologist, Dr. Jay Kothadia – we love him – called to say he was giving the PICC line one more try. He got it!"

Infant clothing

Babies this small can’t regulate their body temperature, so they can't wear clothes – only diapers. A major milestone for parents is when they can finally dress their baby. "It’s a big deal,” Hucks said. “Parents have this vision of what we’re going to bring our baby home wearing. Trying to find onesies that fit a one- or two-pound baby isn’t easy. Luckily, the hospital gift shop sells onesies to fit micropreemies.”

Hucks takes Tucker’s first onesie with her whenever she speaks to people about their NICU experience. “You just can’t imagine – without seeing it – how small a onesie for a micropreemie is,” she said. “People gasp when they see it.”

That first onesie has a bit of a famous story, says Hucks. She and Darrin were speaking to a group of golfers at a Ronald McDonald House fundraiser in Charlotte many years ago, and they showed the group the onesie. Michael Jordan was playing in the tournament. “He actually signed the onesie for us,” Hucks said. “We tell Tucker how amazing it is that MJ signed his very first outfit. You better believe we framed it, and it hangs in our house today.”

The car seat test

Brain bleeds are common in micropreemies, and they can have long-term impacts. “When we found out Tucker didn’t have a brain bleed, that was another big milestone,” Hucks said. (He did, however, have a small hole in his heart – common in micropreemies – and he was monitored for that.)

The last milestone for most NICU babies is the car seat test. Before parents can take their baby home, the baby has to sit strapped in a car seat for 90 minutes. Their heart rate can’t drop below a certain level during those 90 minutes. The only thing standing between the NICU and home is that test – and Tucker failed it three times. “When he finally passed,” his mom said, “that was a huge milestone.”

And they set out to use their experience to ease future NICU families’ burdens. Since Tucker Hucks came home, hundreds of NICU families have benefited from his parents’ experience and generosity.