Fed is Best- Feeding Tube Awareness
Last week was FEEDING TUBE AWARENESS WEEK so
Let’s talk feeding!
We use what body parts for eating?
- tongue
- mouth
- esophagus
Guess what make all of those function. MUSCLES!
And muscles are directed by neurons firing from the brain, instructing them what to do. So while there can be countless reasons why someone may need alternative nutrition, Kaylee needs it because of the impact cerebral palsy has on these muscles.
I will share more about Kaylee but let’s begin with the installation and initial care. Whether you’re a parent who’s considering the switch or just a reader who wants to learn (yes please! education creates normalcy!), I hope you’ll gain from this description.
A Gastrostomy Tube is just one version of enteral feeding/hydration. (Because I don’t have direct use with NG, OG, J, or GJ tubes- I won’t be educating on those but I will share what we experienced with a Gtube)
This version is surgically inserted directly through the skin and into the stomach. The most common is a low profile button.
You do remain in the hospital for a couple nights to manage pain, ensure it works properly, and for all the education caregivers will need. Kaylee did have a good bit of discomfort so she used pain relievers quite a bit.
A protective “patch” is placed behind the tube, called a duoderm, so the skin isn’t irritated. This will be removed in a couple weeks.
Caring for the site in the early days includes keeping it clean and turning the tube so the skin pathway can form properly. They will teach you all about it!
So you’ll also be turning the tube several times a day as a tract forms.
Think of it like an ear piercing— there’s a hole that needs a permanent “tunnel”. The skin wants to seal back up so while it’s healing, turning and keeping it dry will help a healthy channel and no granular tissue (painful scar tissue formed in the stoma).
At home you’ve got so many new supplies! The hospital will connect you with a medical supplier and they will ship to you monthly. It’s new. Give yourself time to have a rhythm and system.
Here’s our feeding journey (well some of it at least):
Kaylee struggled to eat from birth.
She couldn’t latch to nurse so I pumped and used adaptive options to attempt it for a while with no success. After trying it all in the NICU and having “tests” to pass in order for her to be discharged, we would squeeze as much of the 2oz little bottle of breastmilk into her as we could. She passed the test enough to go home.
To keep Kaylee home & not in the hospital, we had to keep her weight up which required daily weights for several months on a hospital scale they set up in our house.
We landed on our own devised method— let me tell you, parents of disabled children are the most innovative people you will ever meet!
We began feeding K with a syringe. We would tilt her head back in a cradle position & squirt drips on the back of her tongue. We then would blow gently on her face to force a swallow reflex & sit her up slightly as the milk went down. It took a long time but it worked.
We spoon fed her thickened formula when she was pronounced “failure to thrive” at 3 months old.
I quit pumping breast milk and had to give her high calorie formula.
She never gained the ability to drink from a cup but we did find an adaptation with plastic straws she can bite and suck simultaneously.
She’s always had a regular diet but without crunchy items and monitoring for choking.
She struggled and choked on water because without a flavor, her tastebuds don’t activate which tell her mouth there’s something there to swallow. (Crazy stuff how our body works right?!)
Through diligent exposure throughout her life- Kaylee maintained the ability to eat and drink in a modified way enough to keep her healthy.
We watched so many “losses” as she developed that we just wanted to try to avoid any surgical intervention we could.
Kaylee had a Gtube placed 3 years ago for hydration due to severe dehydration leading to debilitating migraines. I will never forget what the surgeon told us.
He was stunned that Kaylee could eat. He said “on paper she should’ve had a feeding tube as an infant & she would’ve never learned to eat. You gave her that gift by never giving up”
Seriously the kindest compliment I’ve ever gotten.
Having a Gtube placed was a big decision.
Kaylee is part of the 20% of people with CP who need a feeding tube.
It wasn’t defeat.
It was a new season & we needed to adapt.
Mama- it’s an incredible thing for you to push and advocate and over deliver for your child, but there’s no shame in adapting when the need arises.
It’s not failing or giving up.
It’s looking at your circumstances and finding the “best scenario”.
Remember my mantra— we make decisions, not contracts.
Deciding on a feeding tube isn’t irreversible.
It’s not a contract/permanent solution if you don’t want it to be.
Using medication isn’t a contract, change it, discontinue use. Changing formula isn’t a contract- change it again. Trying a new method or therapist is just a decision for now- it isn’t a contract & you can stop anytime.
Feel the freedom that gives. You’re not failing. You’re trying something else on.
It can feel like a lot to process but you have done so many hard things already. You’ve done things you didn’t imagine you could do. You can do this too. There’s a whole community backing you. ❤️