From the NICU to Museums: Felix’s Story of Resilience
April 22, 2024
A story about two hardworking Denver-based parents whose 3-and-a-half-year-old, Felix, was born at 25 weeks and diagnosed with several lifelong conditions, the partnership they forged with their RMHS service coordinator, and the lessons they taught each other along the way.
Felix is a three-and-a-half-year-old who loves to laugh, talk, peruse the local library, and visit museums. It is not uncommon for him to go to two or three different museums in a single day. He just started school a mile down the street from his house and currently enjoys listening to his relatives read his favorite books aloud via a Toniebox, which allows people to record themselves reading books.
Felix is also a three-and-a-half-year-old who was born almost unresponsive at 25 weeks. He weighed just 1 pound, 6 ounces and measured just 10 inches long. He spent the first four and a half months of his life in the NICU, where he received care from dedicated medical professionals and the unwavering love of his parents, Melissa and Keenan.
After being diagnosed with cerebral palsy and chronic lung disease, the projected list of things that Felix would not be able to do later in life was a long one, according to his doctors at this time. They weren’t sure if Felix would maintain eyesight after his retinas fully detached from both eyes due to what his mother described as one of the world’s worst cases of retinopathy of prematurity (ROP). They didn’t think he’d be able to talk. They weren’t sure he’d be able to eat orally. It was extremely unlikely he’d ever kneel, crawl, or walk.
But Felix’s calm, sweet demeanor shone through despite the constant care and monitoring, poking and prodding, and three and a half months of vigilant eye care, which ultimately saved his eyes and sight. Nurses described him as an old soul, always watching and taking in information.
“He never cried, he very rarely moaned, even doing all these exams, he just had the most wonderful demeanor,” Melissa said.
A collaborative partnership: Felix’s family meets their RMHS service coordinator, Kelsy.
After four and a half months in the NICU, Melissa and Keenan finally brought Felix home. He was on a feeding tube and was still “teeny tiny,” but he was home. It was at this time that they connected with Kelsy Drummond, an early intervention service coordinator at RMHS.
Kelsy is passionate about empowering families and making sure that parents and caregivers feel confident using their voice to advocate for their children.
Setting the stage for success through partnership and advocacy.
Kelsy listened closely to Melissa throughout their nearly three years together, grasping not only her direct requests, but also intuitively understanding other paths that could lead to success in their life. As Melissa put it, “Kelsy was amazing at hearing between the lines.”
To support Felix in his development, there were many supports and services that Melissa and Keenan requested, including speech, occupational, and physical therapy.
Thanks to the RMHS Denver Mill Levy program, which distributes a designated portion of city property taxes to support Denver residents with I/DD in meeting individualized needs, many of the services and supports requested by this family were funded partially or completely by Mill Levy dollars.
“[RMHS] did a lot for us,” Melissa shared. “It was my main source for finding PT and OT and I really relied heavily on Kelsy to understand who I am and what I need. I’m particular and Kelsy was able to find people that suit me.”
Melissa explained that sometimes she worried that the amount of work it took Kelsy to find the right providers who were just the right fit made her reluctant to pursue a new request. For example, Kelsy pushed them to consider finding a speech therapist, although Melissa and Keenan originally didn’t think they needed it. “I’d say, ‘But we might not find the right person,’ and Kelsy always said, ‘I will find the person for you. Let me do that.’ And then she’d find us an awesome therapist.”
Additionally, because of Felix’s cerebral palsy which causes stiff, rigid movements, he benefited and continues to benefit greatly from twice-a-week at-home visits from a baby massage provider. They have utilized Michele Belcher with Kids ‘n Touch and appreciate that not only does this support with Felix’s physical development, but it also reduces his parents’ stress knowing that an expert with a deep familiarity of Felix’s body can advise them when something was off.
“Michele is able to keep track of all the things that happen in his body, so that Keenan and I can relax just a little bit knowing that we have someone looking at his body,” Melissa explained.
Felix’s family also received Mill Levy funding to attend an intensive therapy camp in Texas twice a year for one month, which they have attended since leaving the NICU.
There, they work with one of the world’s leading experts in physical therapy for young children like Felix. The first time they attended, Felix learned to roll over, which is something doctors said he’d never be able to do. In their most recent trip, the expert worked with Felix on kneeling and bearing weight on his arms.
“Actually, this is the reason he’s able to sit in a seat and participate in the classroom,” Melissa explained. “She showed us the way that he can use his body. He can now play on his knees, which opened a whole world of things for us. The fact that he can kneel and grab things right- and left-handed and the fact that he has a stable way of sitting that we don’t have to physically hold him, she gives us hope.”
“I love our time in Texas for so many reasons, but especially for the skills it has given Felix that he wouldn’t get otherwise and for the time we can all be a family together,” Melissa said. “It’s a safe space for believing in having hope in your children and you guys [RMHS] have given us that opportunity numerous times.”
Back at home, with the support of the Denver Mill Levy program, Felix also became a frequent museumgoer and a Sensory Club of Denver member, both of which support his development and growth and have brightened his love of life.
A new chapter begins: Felix’s journey beyond early intervention services.
Felix graduated from the RMHS Early Intervention program this past October just as he turned three. He continues to receive services through the Family Support program of RMHS and utilizes Mill Levy support to pave the way for continued success, but their time with Kelsy came to an end.
When asked how she would describe the impact Kelsy had on her family, Melissa shared, “She was like this warm fuzzy blanket on the bottom of all my worries and fears. She did a wonderful job managing expectations so that I always knew that she was there, and I was able to ask, but while she gently reminded me that my requests may or may not happen, it was always worth it to ask.”
Kelsy explained it this way, “I invest a lot of myself into all my families. I just want the best for all of them. No matter what situation they are in. That’s why I do this job. I was just as invested in Felix as they were.”
Melissa shared that while their time in the NICU was unbearably trying, she does now recognize the importance of accepting help as it’s offered. For her, RMHS and its dedicated service coordinators and providers have been that source of that help.
Today, in part due to Kelsy’s support and encouragement, Felix attends school three days a week at a Denver public school just a mile from their home. During their time at Denver Public Schools (DPS), they’ve watched Felix defy original expectations and realize that he is capable of much more than they ever anticipated, like his gift of speech. He was recently heard shouting, “More school, more school!”
Through their time with DPS so far, they’ve realized that Felix is more neurotypical than they originally believed. “… because of Felix’s past, we assumed he was probably significantly behind,” Melissa shared. “We learned there’s no reason why he shouldn’t catch up and there is no reason why he shouldn’t be in school.”
Felix will attend school full-time in the fall, which opens possibilities for Keenan, as he has been a fulltime stay-at-home father since Melissa returned to work.
Looking Ahead.
Felix’s growth over his first three-and-a-half years of life has been immense, outperforming what his doctors originally believed he’d be able to do. Much of that growth occurred through the partnerships and dedication of various hardworking, talented providers, which were at least partially funded by the Denver Mill Levy program and thoughtfully selected by Kelsy, their caring RMHS service coordinator. He will, no doubt, continue to defy expectations as he continues RMHS supports through the Family Support program, attends school in DPS, and grows under the unwavering love and care of his parents.
When Kelsy was asked about Felix’s growth during her time supporting him, she beamed. “Oh my gosh, he grew so much. His family was able to wean him off the feeding tube. He was eating orally by the time he aged out of early intervention. He has so much more mobility than anyone originally expected.”
His language development also defied expectations and one of the most poignant moments for Kelsy occurred during her final phone call with the family in October as they prepared to exit him out of early intervention services.
“His mom put him on the phone and told him to say thank you,” Kelsy shared. “And he was able to repeat it word for word. It was amazing.”
If you know someone with a child who could benefit from the services and supports that RMHS provides, please share this article with them, direct them to the early intervention website at RMHS, email Birthto5referrals@rmhumanservices.org, or call 303-636-5600 for more information.