Luke pulled up his child care center’s parent engagement app to see the photos and videos the center had sent him of his son, George. Luke was accustomed to getting daily updates of his son’s activities, milestones and more, but he wasn’t fully prepared for what the center had sent him that day.
“Both my wife, Samantha, and I were holding back tears when we saw that video,” Luke said.
To understand the impact this video had on Luke and his family, it’s important to first look at what happened in the life of Luke’s son leading up to this point.
A Very Early Arrival
George, who just turned four years old in June, was born at 26 weeks, which is referred to as an “extreme preemie.” A premature birth in that range can result in a lot of time spent in the neonatal intensive care unit (NICU). For George, that meant 145 days, and when he finally came home, he was on oxygen full-time.
However, just six weeks after he got home, George almost died from pulmonary hypertension, a condition that occurs when a newborn’s circulation system doesn’t adapt to breathing outside the womb – not a surprise given George’s very early arrival. This led to another seven months in the hospital before George could go home again, where he had to be fitted with a tracheostomy tube and was put on a ventilator full-time. He also had a gastronomy feeding tube (G-tube) inserted into his stomach to allow for feeding, hydration and administration of medication.
“We used to call him our little octopus because he had so many tubes coming out of his body,” Luke said.
George is a fighter – after spending the majority of the first two and a half years of his life on a ventilator, doctors said he could start weaning. At that point, Luke and Samantha, who were living in Pennsylvania at the time, decided it was a good time to move to Colorado, where Luke grew up.
“We wanted to be closer to my family and have that additional support nearby,” said Luke. “When you have a kid with medical challenges, you need all the help you can get.”
Finding the Right Daycare
In Colorado, George began attending a medical daycare, staffed by nurses and other medical personnel trained to address George’s unique needs. However, Luke soon realized that while George still had medical challenges, he wasn’t getting the right level of learning needed for his cognitive abilities.
“Cognitively, George is just like any other kid his age, so it was important for us to find a place where he could interact and socialize with kids like him,” Luke said.
Since George was no longer on a ventilator, the main challenge for Luke and his wife was to find a daycare that could manage George’s feeding tube.
“When we called our current daycare, they told us they were taking classes to learn how to administer food through a feeding tube,” said Luke. “It was amazing to see how much this center wanted to work with us to give George the best experience possible.”
The Challenge of Eating
Since birth, George hadn’t eaten anything through his mouth – all of his food had been administered through his feeding tube. Luke and Samantha had tried giving him food, but George had no interest in eating. Even after months in hospitals, sessions with physical and speech therapists, and time spent in medical daycares, no one had been able to get George to eat. That is, until George began attending his current child care provider.
Teachers at the center told Luke and Samantha that they’d like to try to see if they could get George to eat. They had created a supportive and loving environment where George felt safe and protected, and they figured with the encouragement of the kids his age who were eating, they might be able to make it happen.
“I had my doubts, but those were completely removed when I received a video through the parent engagement app on my phone,” said Luke. “I clicked on the video to see my son eating real food – stunned would be an understatement of how awesome it was.”
Luke said his mom, who is also included on his parent engagement app account, texted him almost immediately to share in the celebration.
“This was one of the biggest moments in our lives, and we all got to share in it thanks to our amazing daycare and its willingness to use technology to bring us along on our son’s journey,” Luke said.
Luke said since that video, George is eating every day – an activity he’s excited about now.
“George’s friends cheer for him when he eats now,” said Luke. “And just the other day, he called his grandma and said, ‘Grandma, I ate yogurt and bananas – aren’t you proud of me?’ It’s amazing how quickly his attitude toward food has changed.”
Parent Engagement is Everything
When it comes to daycare, Luke said a parent engagement app is a must-have for him and his family.
“As a parent of a child with special medical needs, it helps so much to get photos, videos and other updates from our daycare so I know he’s doing okay,” said Luke. “Now that we know what it’s like to be able to connect with our daycare through an app, we’d never go to another daycare that didn’t have that capability.”
Luke added that the app has allowed him and his family to immerse themselves in George’s growth and development, and celebrate those “normal kid” moments that at one point seemed so far out of reach.
“After experiencing numerous emergencies and spending years inside hospitals and medical facilities, it’s incredible to finally see my kid be a kid,” said Luke. “And thanks to the support of our child care center, I get to see George do normal kid stuff, like playing with his best friend on the playground, learning new things and of course, eating.”
*Names have been changed to protect the privacy of the people featured in this story.
