MASSILLON, Ohio — Charlee and Lennix Pryor have come a long way.
Through every setback, every roadblock, and every doctor who told their parents they would not make it, these wonder twins have pushed through. We think that's worth celebrating.
“The moment that I saw them, I never once worried that they weren’t going to survive," says mom Alexis Pryor.
Her girls are six-years-old now. That's six years of miracles since they were born premature at just 24 weeks old. That's one of the first stages a baby can be born outside the uterus at, and stand a chance at survival. Even still, the likelihood of survival stands at just 40 to 70 percent.
Mom and dad Nick remember her pregnancy like it was yesterday, even though it happened in what felt like the blink of an eye. In just 20 weeks, they found out they were pregnant, learned the babies were girls, and Alexis found herself on best rest.
The girls' births were the first real milestone. Charlee was at risk because her sack broke a few weeks before birth, and she lost oxygen shortly before birth. After their birth, Nick was on his own; choosing the girls' names and seeing them for the first time while Alexis was in recovery.
“He puts them on the scale and all I see if the 1 pound, 1 ounce," Nick says about the first time he laid eyes on his girls. "I’m like woah. Like, so happy because these are my kids, but holy terrified.”
Then began the long road of NICU stays at Aultman Hospital and Akron Children's Hospital. Lennix spent 203 days in the NICU, and Charlee 226. Somewhere in that time, our Betsy Kling took notice of the girls' story. She followed mom and dad on Facebook, and watched the girls grow.
“As many times as people told us they weren’t going to make it, we weren’t going to accept it. That wasn’t their story," Alexis says.
The girls kept growing. Charlee was given a tracheotomy tube and doctors found Lennix had cerebral palsy, was legally blind, and non-verbal. The family credits so many doctors and assistants for coaching them through their daughter's setbacks, so much so that the idea of going home was terrifying. They felt a feeling all NICU families understand: their home, once a place of comfort and peace, now a foreign place where anything could go wrong.
“It was kind of surreal because again, she’s not supposed to be alive," Alexis remembers about taking Lennix home, the first of the twins. "Along Lennix's journey there were many many conversations of her not surviving through the night so for us to be carrying her out of the NICU was kind of odd but amazing.”
Nick says there were many nights Charlee would pull her trach tube out, as she began to grow. Nick and Alexis took turns not sleeping, just to watch over their baby. The few times Charlee did pull the device out, her mom and dad performed emergency CPR and replaced the tube all on their own.
“It was scary. Is her trach okay, is she breathing okay?" Nick remembers.
Now at six-years-old, the twins are doing exceptionally well. Charlee is at the top of her kindergarten class. Lennix has mastered a specially made communication device she uses to talk. Both girls are big sisters to little brother Neiko, and shined as flower girls in mom and dad's wedding, put off for years with so many emergency hospital trips getting in the way.
“Charlee could walk down the aisle and Lennix could in her wheelchair, and it was this magical, majestic moment and I’m so happy they could share that with us because it's part of our journey," Alexis smiles.
Their journey has even moved her to take a job at the Tuscarawas County Board of Developmental Disabilities.
“You don’t need to have be able to have an actual voice to speak. You don’t need to have vision to take in everything around you. You don’t need to not have everything attached to you to enjoy life," Alexis says.
The girls attend lots of events now as advocates for NICU families. You can find them at Akron's March for Babies and even on the wall outside Akron Children's NICU. So we wanted to introduce them to another advocate family who touched so many hearts with the birth of their daughter, Dakota.
MyKotaBear was started after the birth of Shirley "Jewel" Smith and her husband, former Cavaliers star J.R. Smith's, third daughter. Dakota entered the world at just 22 weeks old, and grew up in the NICU at Hillcrest Hospital. See Shirley's full message in the video player below:
MyKotaBear raises money to give back to NICU families with various donations. Along with the above video message, MyKotaBear gave the Pryor family three teddy bear, two journals, and a coffee mug. "Jewel" Smith thanked the Pryor family for "standing in the gap" for families like theirs.
Alexis and Nick credit each other the most for being where they are today.
“Hes my very best friend in the whole world and I love him dearly," Alexis says about Nick. He says the same about her.
“She's an amazing mom. I couldn’t have chose a better person to be in my life, to be my kids' mom, and yeah, I’m extremely proud of her.”
November is National Prematurity Awareness Month. To learn more about premature births and NICU care, and how you can help families like the Pryors and the Smiths, click here.