by Ashlee Colley
Before we were thrown into the whirlwind of becoming preemie parents and the NICU life, if I was asked what a feeding tube was, I would have had no idea even what the purpose was or why a person might need to be tube fed. Fast forward over 3 years later, and tube feeding is all my son has ever known and we are grateful for the nutrition it has provided him to grow and thrive, and guess what, he gets all the veggies and fruits he needs of every color of the rainbow! Obviously, we would be GRATEFUL to serve our toddler dino shaped chicken nuggets on demand, but life had different plans, and that’s okay.
So what does a feeding tube mean to me, Jensen and my family?
-It means my son can grow and thrive.
That’s the big one, there are a ton of options for tube feeding, and what is right for one family may not be right for the next. We choose to use a mix of blended commercial food like nourish to supplement our home blends, throw everything in the blended, with some extra salt and multivitamin, press start and as Jensen would say, “That my food mama!”
-It means over packing as grabbing something on the go isn’t an option, making sure we have our extension and syringe at all times, because without it we cannot give our son water or food and let’s face it, you can’t grab a extension and syringe at the local gas station. I always keep a back up in our bag just in case something breaks.
-It means stares from people in parking lots as I give my child food before buckling him up in his car seat because I am taking way too long.
-It means getting excited when he asks for goldfish, even if it is just to feed them to our dog.
-It means celebrating everything lick, kiss, touch of food. Even though I know it is likely just for today, but that’s okay.
-It means walking by his favorite character snacks you know he’d love, but will actually be a waste after the last 3 times.
-It means baking a birthday cake that he won’t touch year after year.
-It means not getting to breastfeed.
-It means not getting to hold your baby while feeding them a bottle.
-It means having to move a sleeping baby because if you don’t start their feed at the right time they won’t get enough calories to continue to grow.
-It means venting and spilling stomach contents everywhere.
-It means becoming an expert in catching throw up in a bucket and bringing throw up bags with you because how many times can you get an associate at target to help clean up (and Costco, the mall, doctors appointments, and car rides).
-It means getting unsolicited advice on how to get my kid to eat.
-It means answering the dreaded question, when will the tube go away?
On behalf of all tubie Mom’s (and Dad’s), we don’t know. If our children didn’t need it, they wouldn’t have it. Period. All of our children rely on their tube to support their growth, that growth supports their development.
-It means we can focus on developmentally appropriate things like playing, exploring, and learning.
-It means my son can be a kid and not be forced to do something he isn’t physically capable of doing properly.
It means all of these things and more.
Bringing awareness to feeding tubes lets the world know having a feeding tube is okay and having a tube is just a different way to eat, even while you sleep. Jensen has grown from a tiny 2lb baby to a nearly 30lb toddler with a huge personality that loves animals, cars, and being outside. Currently we are working building up the proper muscles and getting down the coordination of bite, chew, swallow in order for Jensen to take in his nutrition orally. Until then, I will continue to chase him down for his next meal.
Ashlee Colley is a stay at home medical mom to a fun toddler and bonus son juggling therapies, doctor’s appointments, medical supplies, tube feeding and suctioning. Ashlee has a passion for advocating for Jensen and helping other parents find their voice to get their children exactly what they need. In her huge amount of free time, she is a mentor for Graham’s Foundation, enjoys crafting, listening to music, reading, and writing. As a family, they love spending their time outdoors with their animals, going for hikes, and spending time near any kind of body of water!