Adapting to the G-tube: Our story

For some families, tube feeding is one part of a complex medical world into which their fragile babies are born. For others, it may be the first step on a long, unexpected journey. Either way, few couples enter parenthood expecting tube feedings as part of the package.

Here’s our family’s story…
Imagine a cute couple (that’s us, my wonderful husband and little ol' me) sitting in the specialty doctor’s office, hearing news that our once-healthy baby has a serious medical disorder. Then the doctor finishes the devastation by dropping this extra bomb: “Your child will need a g-tube within five years.”
It sounded to us like a death sentence.
It turned out to be a life-saving gift. More times than I can count.
For a solid year, I fought the doctor’s prediction.
I faithfully drove my daughter an hour and a half every week to see the feeding therapist. We worked and worked to retrain her chewing skills as her cheeks grew flat and her dimples disappeared.
For five worry-filled hours each day, I tried to spoon purees into my daughter's mouth. She sputtered, gagged, and mottled red in the face.
Do you see the red mottling around her eyes, nose, and mouth?
This was a sign of aspiration.
Oh, and the head? That's my dear hubby's, not mine.
Eventually she refused to open her pursed-tight lips. Her feeding became a battle of wills. And tears.
More times than not, our labor to get a tiny meal down her was rewarded with a vomit.
Between her second and third birthdays, she lost 4 pounds of body weight. Little girls should gain about 4 pounds that year. She suffered from constipation and poor resistance to illness. Both of these were directly related to her lack of adequate water intake.
A swallow study around her third birthday showed my daughter was aspirating food into her lungs. Her coordination to swallow had deteriorated to the point she was no longer able to safely take her nutrition by mouth.
Talk about mom-guilt! My daughter’s “stubborn refusal to eat” had simply been her effort to protect herself. I had been putting her at risk by trying to feed her.
Once we understood her aspiration and its risks, we stepped off the battle field. Her health needs made it clear that the time had come to quit fighting against a tube. It came almost as a relief to have the decision made and find ourselves in a truce.
Still, in the weeks of waiting for her surgery date, we wavered between worry and sadness and hurry to get-this-over-with.
We worried terribly about surgery, even if the PEG procedure to place a g-tube is a quick and relatively minor one. Our daughter had never had general anesthesia and we didn’t know how her body would react.
I felt saddened by defeat that all our hard work couldn’t beat the odds.
The idea of the g-tube was terrifyingly medical. I deliberately chose a career other than nursing; I don’t do needles or blood. Yet suddenly here I was to become a sort of “nurse” at home. I was worried whether I'd be able to handle that or not.
My husband felt silly for worrying if he’d still be able to blow raspberries on her tummy. That wasn’t silly at all. Not one bit.
We both felt sad over losing her perfect pink, unblemished tummy. I cried.
But our story ends happily ever after.
Surgery was a breeze. Recovery was fairly smooth. And within a week I no longer felt like I had five thumbs on each hand.
Best of all, the g-tube gave us an upper hand with our daughter’s health. Instead of bowing to her disorder, it gave us charge over it.
1) She no longer risks her life to get the nutrition she needs to sustain it. In fact, her swallowing actually improved once the stress of having to eat was removed. She continues to eat for pleasure; it’s a fun thing now.
2) She is well hydrated. This is a major factor in avoiding constipation. It also helps her fight illness and recover faster when it does hit.
3) She gets exact doses of her medications. No more wondering if she managed to swallow what she needed. No more struggles. (You can read how we prepare meds for her g-tube here)
4) Even if she is ill, seizuring, or sleeping off the effects of a seizure, she still gets the food and water she needs. Being able to tube-feed her during several pneumonias was life-saving. And since seizures are a daily thing at our house, being able to continue with food and water and medications while she sleeps afterward is monumental.
5) While not a reason for getting the tube, our daughter’s oral feedings had pretty much worn me out. The cost in time and frustration and worry was heavy. In many ways, it felt like her deterioration was destroying me in the process. The g-tube restored so much to our lives. It allowed us to spend our time together in pressure-free, pleasant ways instead of embroiled in battle over eating.
And it normalized our family routine in unexpected ways. When our daughter still struggled to eat by mouth, we had stopped having Girls Day Out because feeding in public was too demanding. We certainly couldn’t go through drive-ins, since feeding her took all my attention. Now with the g-tube and the pump to go along with it, we were able to do the small things that many people take for granted. We could enjoy restaurant meals without occupying the table for an hour past our welcome, since she could continue her meal while we drove away. It was very liberating to enjoy these freedoms again.
Oh yes. Raspberries on the tummy? MOST definitely possible. And the squeals are delightful.
What's your g-tube story?


vlmaples said...

You really need to write a book, Rose-Marie! You share your story in such an encouraging fashion, but full of depth, details, and hope! Thank you for all you are putting out there to help educate people and encourage those from a distance. :-)

Rose-Marie said...

Aw shucks, Valerie! You are so encouraging! I sure do hope this is helpful to someone. Actually, YOU could write a book, you know.

Anonymous said...

Encouraging to see someone say "her deterioration was destroying me..." while describing being beyond tired to death. Folks often talk about being destroyed by the diagnosis, but that emotional turmoil is different from being ground down by the daily demands of care taking. We are at that point with nighttime sleeplessness and screaming. I felt guilty putting her on sleep drugs, but trying to live on 3 hours of broken sleep a night takes too much of a toll after 18 months! It affects the ability to be a good parent. Things are better with the drug, but still not good. We continue our search for the sleep equivalent of a G- tube after ruling out the obvious causes. You always do such a good job of describing the pros and cons of everything, and you always include an exploration of the emotional costs as well. (here on the blog, and on rettnet as well.) keep it up! It's a great public service! Sometimes we need "permission" to think of ourselves, and our own needs. Knowing that other people also struggle can help with that.

Rose-Marie said...


I'm terribly sorry to hear about the sleeplessness at your house. You are right about lack of sleep affecting your abilty to parent and to just function. It's beyond grim--people who haven't lived as long as you without sleep have no idea, have they? I hope you find a solution soon. If only there were a g-tube equivalent for "pouring" sleep into your Energizer Bunny!

Oooh, ooh...and what if they could pour sleep into Mom and Dad at the same time, so we could get caught up on our physical needs without having to actually sleep? We could get so much done!

But seriously, I hope you either find a solution soon or that this is something a your daughter will soon grow out of. My heart goes out to you!
(And thank you for such nice compliments, too).

Mema said...

I adopted my grandson from my heroine addicted daughter. He was born with vacteral syndrome. He will soon be three and has never eaten or drank. His cognitive abilities are perfect. He has endured 13 invasive surgeries and so many bodily violations that a feedinG tube seems like a small thing. I wil tell him it is his badge of honor as it will make him into the strong beautiful boy he was meant to be.

Rose-Marie said...

Mema, thanks for sharing your beautiful story! Yes, with all the surgeries needed to address the issues that come along with VACTERL, the g-tube must seem small. But what a mighty contribution it can make to your grandson's health! He is so fortunate to have you in his life.