Meet Mighty Madelyn: Our Newest Mighty Bee

Every Mighty Bee has a story of strength, resilience, and love behind them. Madelyn’s journey began before she was even born and continues today as she grows, learns, and thrives with the support of her family and therapies that help her communicate with the world around her.

Her mom, Stephanie, remembers the moment she first learned she was pregnant.

“My husband and I were trying to have a baby, so I found out very early on that we were pregnant,” Stephanie said. “I remember being in such a hurry to get pregnant since I was older than most, and when it happened it was a shock that it was actually real.”

A High-Risk Pregnancy

Early in the pregnancy, Stephanie was diagnosed with gestational diabetes. Doctors also monitored her blood pressure closely, which was often borderline high. By around 29 to 30 weeks, there were concerns about possible preeclampsia. At 33 weeks, Stephanie was admitted to High Risk Maternity due to high blood pressure. “The intention was for me to be there for seven weeks if stable,” she explained. “If not, they were going to take her around 34 weeks. I knew she may have to stay in the NICU, but I wasn’t sure how long or what to expect.”

Like many NICU families, Stephanie entered the experience with uncertainty about what was ahead.

Meeting Madelyn

Madelyn arrived early, and her first moments were filled with both relief and worry. In the operating room, Stephanie was able to hold her daughter briefly after doctors stabilized her breathing. “She needed the bubble CPAP for a few minutes but was able to breathe on her own after that,” Stephanie said.

Soon after delivery, Stephanie was taken to recovery but stopped by the NICU on the way. Even in those early moments, Madelyn’s personality was already shining through.

“I remember the nurses telling me how impressed they were with Madelyn because she was trying to look around,” Stephanie said.

Later that night, Stephanie was able to return to the NICU in a wheelchair to see her daughter again. “It felt surreal having a child that small. I was terrified because I really had no idea what I was supposed to do.”

Despite her tiny size, Madelyn surprised everyone again when she latched for the first time. “The nurse was impressed with her doing it so early on,” Stephanie recalled.

Three Weeks in the NICU

Because of Stephanie’s gestational diabetes, Madelyn initially struggled with regulating her blood sugar levels. At one point, doctors needed to quickly re-establish IV access and placed a line in her scalp. “Seeing that was scary,” Stephanie said, “but I understood the importance of the line.”

After the low blood sugar episode, Madelyn became very sleepy during feedings and had difficulty latching or drinking from a bottle. Most of her feedings were delivered through an NG tube while she gained strength. Madelyn spent three weeks in the NICU until she was consistently able to drink at least three ounces of milk on her own.

During that time, Stephanie and her husband were able to stay at the hospital in a “rented room” in the mother-baby unit. “That was nice instead of having to go home and figure out how to get a ride back and forth because my husband only got a week off work,” Stephanie said.

Still, the experience came with emotional challenges. “It was stressful because you would see the moms pushing their babies around or getting discharged home with them,” she shared. “I had three people I knew give birth at the same time I was there.”

Managing the NICU Emotions

The NICU can be an emotional rollercoaster for parents, but Stephanie found ways to cope.

“It’s very hard to manage your emotions when you’re a NICU parent,” she said. “We were blessed that Madelyn was not medically fragile, and we didn’t have that added level of stress or anxiety.”

Something as simple as the walk to the NICU helped her process everything. “The walk to the NICU from my room was a bit of a hike. I think that helped me de-stress a little.”

Stephanie also found comfort in connecting with other families. “There was a parent support group there that had regular meetings, and that was also nice to attend.”

Discovering Madelyn’s Needs

As Madelyn grew, she met many early developmental milestones. She walked at 13 months and even said “da da” early on.

But between 16 and 18 months, Stephanie noticed something concerning.

“She stopped making noises at all.”

Trusting her instincts, Stephanie made a self-referral to the CDSA for an evaluation. During the assessment, Madelyn underwent a hearing screening and did not pass. Madelyn eventually needed ear tubes, and the family hoped this would resolve her speech delay. When her communication challenges continued, a formal evaluation at age three led to a diagnosis of autism.

Finding the Right Therapies

One therapy has made a particularly powerful difference for Madelyn: Applied Behavioral Analysis (ABA).

“ABA has helped us with potty training—still a struggle,” Stephanie said. “They taught her how to use the PECS, the Picture Exchange Communication System.”

From there, Madelyn progressed to using communication technology.

“They eventually taught her how to use her first AAC device, which was Proloquo2Go. They helped when we transitioned her over to TouchChat with WordPower.”

Stephanie believes these therapies have been life-changing.

“Without ABA, Madelyn would be years behind where she is now with her functional communication—or she wouldn’t have any at all.”

Challenges After Coming Home

For Stephanie, one of the biggest challenges wasn’t just the therapies themselves—it was accessing them. “Finding a way to get her back and forth to all her different therapies and funding them,” she said.

Insurance limitations made things even harder. Madelyn’s commercial insurance only covers 52 combined therapy visits per year for speech, physical therapy, and occupational therapy.

Once those visits were used, Stephanie had to pay out of pocket while still managing copays for ABA therapy. “My insurance wouldn’t cover more because they said her autism won’t go away,” she explained.

Finding Bee Mighty

Madelyn’s connection to Bee Mighty came through a social worker at her doctor’s office.

“A social worker gave me a list of grants to try to help pay for her therapy,” Stephanie said. “One of them recommended Bee Mighty since Madelyn was a NICU graduate.”

Stephanie applied hoping for support to continue the therapies Madelyn depends on.

Life Today

Today, Madelyn is a busy second grader. She participates in a special program at school called Communication Social Skills, where she receives support throughout the school day. After lunch, she heads to ABA therapy, where she works until 5 p.m. On top of that, Madelyn attends private occupational therapy and speech therapy weekly. After a full day of learning and therapy, evenings are spent as a family. “Then she comes home where we play a little, eat dinner, take a bath, and go to bed,” Stephanie said.

Advice for Other NICU Families

Looking back, Stephanie has powerful advice for other families walking a similar path.

“Live in the moment with your child. Celebrate all the milestones, no matter how small.”

Even the smallest victories matter. “Your child kept their O2 sats up? Have a dance party to celebrate!”

She also encourages parents not to compare their children to others. “Be mindful of comparing your child to others. Each child is unique and these NICU babies are not on anyone’s timeline but their own.”

And perhaps most importantly, she reminds parents to trust themselves.

“In the same breath, trust your parenting instincts and get your child early intervention if they are not catching up.”

Madelyn’s story is one of perseverance, advocacy, and the incredible power of support. We are honored to welcome her as our newest Mighty Bee.