Have you seen “I Love a Tubie” popping up on your Facebook feed this week? If you haven’t yet, chances are you will. It’s Feeding Tube Awareness Week!

You may or may not be aware that hundreds of thousands of kids receive or have received nutrients through a feeding tube. They may get all of their nutrients that way — or they may get supplemental nutrition that way. There are just as many reasons why these particular kids need a feeding tube. For most, it’s a temporary solution but every child’s situation is different.

Our Little Lion Man is one of those kids. Diagnosed with Pierre Robin Sequence at birth, he has received his nutrition through a feeding tube since the day he was born. I’ll be honest. Patrick and I didn’t think twice about feeding him through an NG tube while he was in the NICU or having the surgery to have a Gtube put in before he came home. Not eating was never an option. The circumstances aren’t necessarily as black and white for other families and the decision can be immensely stressful. No one wants to put their child through surgery.
Feeding Therapy Ideas for Tubie and Non-Tubie Families - (cool) progeny

I like to look at it the way the Bug does: her brother needed a second belly button.

{Kids have a way of making things easier, don’t they?}

Our family has been incredibly lucky to work with some wonderful speech and feeding therapists over the past seven months as we worked to teach the little guy how to swallow and enjoy eating. I have been beyond grateful that his feeding tube has allowed us to take this process at his pace without having to worry whether or not he was getting enough nutrition. That said, for LLM, the feeding tube is a temporary solution. The goal is to have him eat entirely by mouth.

Feeding therapy is a process. Things that work for one child may not work for another child. In addition to the oral stimulation exercises our therapists have suggested, these strategies and tools have been incredibly helpful for our family. Whether your child is a ‘typical feeder’ or a ‘tubie,’ hopefully these thoughts will help if you are transitioning your little one to eating “real” food:

Feeding Therapy Ideas

Make a Mess: Play with Food!
When you’re first starting feeding therapy, this can be a little daunting: If he gets too much on his fingers, will he choke? For us, the trach adds an extra level of complication because we need to keep that area clean and clear. But as the little guy has become more comfortable with swallowing thicker foods (we thicken all of his fruit and veggie purees with rice or oatmeal), I’m more comfortable with letting him have at it. Sculpt with mashed potatoes. Finger paint with pureed carrots. Go for it kiddo. Ultimately, some if not most of it ends up in his mouth. If he’s particularly reluctant toward a food, that’s the one I’ll put on his tray and let him play with. After a few avocado shampoos (and subsequent licks), he know takes it mashed off a spoon.

Feeding Therapy Ideas for Tubie and Non-Tubie Families - (cool) progeny

Our Favorite Tool: The NumNum
There are lots of different tools out there to help with oral stimulation, but our Little guy took to none of them. He loved chewing on them — but if they started to vibrate or were too tactile he would go into hysterics. Fairly early on we learned that he liked to be independent and wanted to feed himself, but the deep well of a spoon wasn’t conducive to scooping food or easy for him to physically get food off of the spoon. Enter, the NumNum. Designed to be an introductory spoon for typically developing feeders, it works beautifully for our guy. The dimpled head holds onto thinner first foods and the flat design means there is no wrong way to hold it. When we first introduced it, LLM could chomp away on the soft texture and get a taste of food — and swallow if he was up for it. Now, since he’s swallowing thicker pureed foods like a champ, he can  “dip” and feed himself quite easily.

Involve the Whole Family: Make Eating Together a Routine
I think it’s easy for all parents — whether or not your child has medical concerns — to rush through the ‘needs’ checklist: bathe, nap, eat, diaper change, etc. But eating by mouth isn’t a ‘need’ for the LLM; at least, he doesn’t perceive it as a need because he’s never experienced ‘get hungry and drink/eat until satiated.’ So we’ve had to make eating an experience and quite frankly, part of his feeding therapy. We sit down and eat as a family together every night. Sometimes it coincides with his last ‘bolus’ feed of the day and sometimes it doesn’t; but he always has food to eat/play with on his tray when the four of us (+ whomever happens to be at our house at that time) sit down for a meal. I’ll be honest. Sometimes it’s painful actually getting to the eating together part with schedule juggling/cooking… but seeing us all sit together and literally break bread has made the LLM want to be a part of the routine/ritual. ESPECIALLY when he sees his older sister eating. Motivation is key.

Practice Patience: Patience. Patience. And More Patience.
Some days, LLM scarfs down 2 oz of pureed food in one sitting. Other days, he takes an ounce at four sittings. On average though, he’s eating about 4-5 oz. of ‘real food’ each day.  Every once in a while, I have to resist my own frustration when he doesn’t take an entire 2 oz container down because it  {momentarily} looks like a setback. It’s not. It’s a process. We’re introducing new textures and flavors and — as with any ‘typical feeding’ child — he  likes some of them and spits others right back at me. Literally. Yes, I have wondered if the kid might only eat apples and oatmeal for every meal for the rest of his life. I’m guessing probably not, but for right now? That’s 100% ok. The task right now is to make sure he likes eating. If he associates eating apples and oatmeal with pleasure, we’re doing something right.  {But no, it doesn’t mean we stop introducing everything else.}

What feeding therapy ideas have worked with your child?

Disclaimer: I am not a feeding therapist, just a mom teaching her child to eat. These are simply things that have worked for us!  Take ’em with a grain of salt; just like you would your margarita.