I thought to myself the other day that I should update on Brenna’s oral eating and gluten-free diet…and then I remembered when we actually started this whole tube weaning process and realized something: it’s been almost a YEAR.
In February 2013, we forged ahead with a plan to get Brenna to eat by mouth. At that time, she was taking one or two small sips of water from a sippy cup and maybe 4-6 tiny bites of foods like pizza sauce.
And in less than a year, using her g-tube is not even on my radar anymore.
Our feeding pump George sits alone and isolated in a closet somewhere in our new house. The syringes and boluses and tubing previously used multiple times a day are now untouched in a drawer in our kitchen. I haven’t even called the medical supply company from our new address, which we’ve been at since August.
We haven’t used Brenna’s g-tube since last summer.
The first couple of weeks with the tube wean were all-consuming and very tough. Because her body uses up so many calories to make skin, Brenna needs a huge amount every day just to maintain her weight. She lost weight very rapidly during those first weeks, and even throughout different points in the first few months of the tube wean, and we had to monitor her weight and her hydration so closely. At several points, she was extremely close (within tenths of a pound) to hitting the maximum amount of weight that her feeding team would let her lose before pulling her off the wean.Within 12 weeks, we finally were able to stop feeding Brenna her night-time feeding. Not having to hook her up to a machine while she went to sleep was a huge turning point for us!
And then finally during the fourth month of the tube wean, we saw a break-through: not needing her feeding tube except for medicine.
Oh, the freedom. Oh, the celebration.
To be able to wash bibs. To be able to go visit someone’s house without George the Feeding Pump packed into the van. To be able to participate in mealtimes, both at our house and and others’. To be able to pack snacks and sippy cups.
And to be able to stop blending up food and using syrgines to feed my child. To get to stop cleaning up green gooey spills when the syringe would pop out of the tubing…and the vomit that plagued our house. Because when you’re tube feeding a baby? They can’t tell you they’re too full. They can’t stop eating like oral eaters can. And you have to decide on JUST the right amount that will keep your child gaining weight and growing, but not so much that it all comes back up. That balance, my friends, is a hard one to achieve…and I’m not sure I will ever forget the sounds of Brenna throwing up in her crib during a night-time feed and the smells that followed.
And then somewhere along the lines during the 6th or 7th month, Brenna began drinking all of her meds by mouth. Any medicine, any time – she has never seemed bothered by the taste.
And we have never looked back.
Her weight gain is slow. But it’s there, as each weigh-in produces a slightly higher number than the date on the chart above it. She’s tipping the scales now at 21.5 pounds.
And I actually had the thought this winter that I’ve been too afraid to dream about since her g-tube was placed: if her tube came out, I think everything would be OK.
Sure, I might be worried. She’s entered a slightly picky stage where she doesn’t like to try new things…but then again, she’s 3. And we still haven’t experienced an actual illness where she continues to eat and drink through being sick (knock on wood – stay away, flu!) But she has been eating and drinking so comfortably, so confidently, so naturally, for 6 months now, that you would never know she was completely tube-dependent for half of her life.
Even trying a gluten-free diet has not been much of a challenge because she loves meats and dairy products so much – and those are the ones that pack in the calories, so I’m definitely not complaining! Unfortunately, I’m just not convinced that going gluten-free has been impacting her arthritis very much at this point. Her fingers are still so swollen, her toes and feet are really puffy and she asked me to rub her toes a lot, and she’s showing some signs of joint discomfort in her hips and knees.
Other than that, Brenna eats like a champ – even in the midst of her newfound picky-ness. Dinner times are struggles, because she just wants her favorite foods and doesn’t bother to give new things a chance, but we’re just continuing to expose and to require that she tries everything at least once before making up her mind. Quite honestly, we probably enforce dinner rules much more out of fairness to Connor, who has the same rules, than the fact that we actually care what she eats. Because she’s eating and a lot of it.
I don’t miss George the Feeding Pump.
I don’t miss my blender.
I don’t miss tube feeding.
It’s been nearly a year, and we’ve gone from a tube-dependent child to a kid who can be bribed using food because she loves to eat so much. Oral eating, for the win!