Special Needs Sunday: Weaning from G-Tube

14 Sep

Jenna still receives all of her calories and nutrients through her “Dinosaur Juice” formula via her g-tube and Infinity pump.  Since we switched her formula in April, she hasn’t taken anything by mouth (except – weirdly – popcorn and fruit smoothies, and even those she doesn’t eat much of).  In spite of taking nothing orally, she’s gained weight wonderfully and done some fantastic catch-up growth.  She now weighs 28 pounds, 3 ounces!  Our next appointment in Boston will be next month, and we want to ask about the possibility of starting to give her less formula so that she gets a little hungry and is hopefully more motivated to eat.  We’ll see what they say.  What they’ve been watching are her stats on the Pediatric Weight-to-Height charts.  Previously, she wasn’t even registering on the chart.  Now, she’s solidly in the tenth percentile.  I’m not sure what the docs’ criteria are for weaning.  We are encouraged no matter what, because we have multiple friends with three-year-olds who aren’t that far off of Jenna’s stats, and no one is fretting about them “failing to thrive.”  Specifically, Jenna has two friends who are almost exactly a year older than her who are the same height as Jenna and weigh 30 pounds.  If you simply look at the Pediatric Weight for Age chart, Jenna’s now considered “average.”  I know the doctors have to have some objective means of measuring and making decisions, but I also know that almost any mom will tell you that comparisons to those charts are frustrating and often discouraging.  Sigh.

Yesterday, Hubby and I had a wonderful day away while my parents watched Jenna.  Sometime during the day, I had a small epiphany.  I think getting out of the house and away from the craziness cleared the fog that had settled in my brain.  Anyway, I realized that the sticker and reward system we used for potty training worked so well with Jenna that there’s a good chance that it would work for eating behaviors as well.  Especially since we’ve started backing off of stickers and prizes now that she’s got the hang of using the potty.  She still asks for them and would LOVE to have another reason to earn some.

Our first goal is to get her off of her pump.  This would be great in so many ways.

  • Freedom from a backpack, pump and tubes in public = she looks like every other “normal” kid.
  • No more worries about tangled or disconnected tubes during sleep times.
  • Significant cost savings in tube and bag supplies.
  • Easier to go out/travel with her without having to haul a pump and supplies.

Here’s what we’re going to do, starting tomorrow.  When it’s time for her feeding in the morning (the one she does while watching a movie), I’ll put a small amount of chilled formula in a cup and present it to her with a straw, which she LOVES.  If she drinks all of the that, she can get a sticker.  If she does it twice, she can choose a prize.  (Plan B will allow for the possibility that she totally resists drinking the first portion, and will shift to allowing a prize as soon as she finishes the first time). Each day, we’ll build from that by increasing the portion size by tiny increments and increasing the number of portions consumed that are required to get a prize.  Our initial goal will be to get her to drink her 90 mL morning feeding relatively quickly (not having to sit still for one hour like she does with the pump) from a sippy cup.  I think I’ll also incorporate the movie-watching as a reward, since that’s something she looks forward to every day (and we don’t have TV).  I think we won’t start the movie until she drinks her small portion.  Drinking will result in immediate movie privileges with a sticker and/or prize.  Eventually, we’ll hopefully be able to say, “Drink your “Dinosaur Juice” and then you can watch your movie.”

I’ll keep you posted on how it goes.  I’m off to make another reward chart…..


Posted by on September 14, 2008 in Jenna, Parenting tips, Special Needs


7 responses to “Special Needs Sunday: Weaning from G-Tube

  1. Marinka

    September 14, 2008 at 3:15 pm

    Congratulations on getting on the charts (and isn’t average wonderful?) I’m glad that you and your husband had a nice day together, and I totally know what you mean about having an epiphany when you get away for a while.

    It sounds very promising, so I hope that it works. Please keep us posted!

  2. anymommy

    September 15, 2008 at 1:16 am

    You inspire me as a mom. I think this sounds like a wonderful plan. I’ll be looking forward to your post saying that it worked! And congrats on the tenth percentile!

  3. Michelle

    November 12, 2008 at 12:13 pm

    I’m glad to hear (from reading the other post) that this is working for you. Also, if it makes you feel any better, Little Miss is 3 1/4, 38″ (50-75th) and 26 pounds (3-5th). She started out in the 50th in weight and by 1 year was down to 3rd. She’s been consistently there since then, but they’re ok with that. Partly because even at the low percentile she continues to gain *some* weight (and I know this was an issue for you… I do get the difference) and the expectation that because she’s so active, that keeps her weight down. Here’s hoping she continues to make progress!

  4. Sylvia P McGuire

    January 12, 2010 at 4:40 am

    My daughter is 9 months old and just got her gtube. From birth until 5 months old she was at the 10th percentile then decided to slowly stop drinking her milk, maybe reflux? maybe aspiration? we do not know…. Now she is 100% fed by gtube but I worry she will loose her eating skills as before the gtube she would eat 12 ounces of solids by mouth and 5 to 10 ounces of milk. Any ideas to share?

  5. psychmamma

    January 18, 2010 at 1:17 am

    Sylvia –

    At this stage with your daughter, I’d mostly recommend that you make sure to offer her a variety of teething options that are different textures. You can even freeze them sometimes to offer more variety. This will help prevent oral aversions and keep the muscles in her mouth active (plus help with teething!). Jenna STILL has “chewies” in the freezer that she requests sometimes. Beyond that, I’d just say to keep offering her food by mouth, even though she’s getting her calories via tube. As much variety as you can give her would be great. Again, this will help keep her interested in tastes and food, and will help prevent oral aversions. Unfortunately, it’s quite likely that, like Jenna, she won’t be too interested in food by mouth, since she’s basically full/satisfied from tube feeds. This has been an ongoing struggle for us, and I don’t think there are any easy answers. We’re currently seeing a pediatric speech and occupational therapist to help with eating behavior, and she’s given us many great ideas for oral exercises and ways to encourage/teach eating. If you have more questions, or want to talk in more detail to someone who’s been there, you can email me at:

    Wishing you all the best!

  6. elizabeth

    July 22, 2011 at 12:47 am

    I found your post while looking to find tips on g-tube weaning. My daughter is also named Jenna and just this week at her 2 year well check up was finally back on the growth chart for weight (5th percentile) for the first time since she was born. I love your idea and need to try stickers for eating well!!!! Let us know how your Jenna does!

  7. PsychMamma

    July 22, 2011 at 9:35 am

    Elizabeth –

    Glad you found me! Hope the stickers work as motivation for you. They helped our Jenna, as well as oral-motor therapy, peer interaction (at preschool lunches & w/friends at playdates), and LOTS of patience. She’s eating more and more all the time, but still not enough to sustain the calories her body needs. We just keep taking it one day at a time! Wishing you all the best!


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