Saturday, March 8, 2014

Freedom from G-Tube Dependency: Part 2

I apologize for the delay in the follow-up post to "Freedom from G-Tube Dependency: Part 1".  I could give you a whole host of completely valid reasons for our blogosphere absence (two toddlers, pregnancy, consequential exhaustion, volunteer work, travel, etc...) but when it comes down to it, I feel the need to confess: I hate writing about this topic.  I hate living this topic.  And even though I have three-and-a-half years of experience with this G-Tube thing, I still feel lost and frustrated and completely void of a way to summarize our journey and wrap it up with a pretty little bow for our readers.
But then I remind myself of the desperation I felt when my most important goal was to get Josie off of the G-tube and what I would have given had someone shared this information with me and I feel compelled to "pay it forward," if you will.  So forgive me if I struggle to find organization and coherence. If you are a parent who is in this boat, please do not hesitate to email me with further questions.
So, where were we?  Oh yeah, we were in a hotel room in Iowa after we put our lives on hold for a week to take a LONG road trip to seek help for Josie's oppositional behaviors at meal time.  The plan was that Travis would work from the hotel room while keeping Merryn , and I would take Josie to the intensive feeding clinic every day for evaluation and treatment.  Because I had to pack a wide variety of foods (preferred, non-preferred, various textures and levels of exposure), we got a room with a kitchen in it and we headed to the grocery store to stock up. 
And even though taking this road trip was not anticipated nor desired, there was a silver lining: Mama Hop and Aunt Leanne were able to take a road trip of their own and meet us there.
 Travis certainly appreciated their help with Merryn, as would anyone who has every tried to sound professional on a conference call while supervising a two year-old.
 Back to feeding therapy: exactly what happens at an intensive feeding clinic?  Is Josie expected to sit and eat for 8 hours a day?  No, but it did consume most of the morning with built-in breaks.  Travis would drop us off at 8am and usually pick us up sometime around lunch.  That schedule worked out well because after such intense mornings, Josie was really for an equally intense afternoon nap.  We all were!
 Josie began the week expecting to be fed, throwing plates/cups, and spitting out her Pediasure.  She ended the week feeding herself, tolerating having plates/cups on her tray, notifying us when she was "all done" so that we could remove the plate/cup, and consistently drinking her Pediasure without incident.  So what sort of magic was worked in the meantime?  Behavioral therapy operates in a very straight-forward and sensible manner reflective of how the world works in general.  One of the key strategies is positive reinforcement.  In Josie's feeding program, in order to earn a preferred item (for some kids it's a preferred food; for Josie, it's a musical toy/singing animal), Josie must consume a non-preferred food.  How is that reflective of how the world works?  Well, in order to earn a paycheck, one must go to work, right?  In order to maintain a healthy weight, one must consume a healthy diet and exercise.  In order to catch your flight, one must show up at the airport on time.
So what about oppositional behaviors?  Let's take throwing the plate as an example.  If Josie throws her plate, and mom cleans it up and then feeds Josie a preferred food just to get the meal over with, what is Josie going to do the next time she's presented with a plate full of food she'd rather not eat?  You got it - she's going to toss it on the floor.  So if Josie throws her plate now, she gets out of her chair, cleans it up (this may involve hand-over-hand or verbal guidance from mom), then she gets another plate of the same food, and is required to finish it (once again, this may require hand-over-hand).   Anyone who has ever had a toddler realizes that this scenario is not going to be easy - in fact, you can expect increased opposition.  But here's the key: Consistency and follow-through.  Once the child realizes the behavior will not produce the desired outcome, it will subside.  I can testify to that with Josie's mealtime refusals.
Another key component of behavioral therapy (and perhaps the hardest part for me): learning to manage my response.  Any reaction - even negative - is better than no reaction in a child's eyes.  So when Josie throws a plate of food, I don't scream and yell and lecture her for 15 minutes about respectful mealtime behavior.  I certainly don't put her in time out because that achieves exactly what she wants: to get out of the meal.  I practice my best poker face and I use as few words as possible to tell her that she will clean it up and resume eating.  And the only time Josie gets attention (which is her BIGGEST motivator) is when she's cooperating and eating well.  When she takes bites of foods she'd rather not eat, we have a BIG party and she loves it.

And if I've learned anything from my experiences in behavioral therapy, it's that I have the power to prevent so much oppositional behavior simply by adjusting my approach.  What do I mean by that?  Well, on days when we're in a rush to get out the door and I'm feeling stressed and impatient and I'm barking at Josie to eat, I am met with equivalent levels of resistance from her.  However, if I approach each meal as though I am a cast member on Sesame Street; if I use my most upbeat mom voice and I make up silly songs like "It makes mama happy when you eat (clap, clap)" to the tune of "If you're happy and you know it" - I can get Josie excited to eat even the most dreaded foods.  Granted, I'm only human and I can't always bring my parenting A-game.  Likewise, Josie has good days and bad days as well.  This is why it has been so crucial for me to learn behavioral therapy methods.
Clearly, that is an oversimplification of a program that is run by people with PhD's and years of experience in behavioral psychology.  How does it look for Josie since her trip to the University of Iowa Children's Hospital?  Well, Josie starts her meal by taking 10 bites of the least preferred food on her plate.  For example, she would prefer not to eat a sandwich.  So I cut a sandwich up into small pieces and I put five bites on her tray.  During this time, she gets LOTS of attention and encouragement from me.  After consuming 5 bites, Josie gets a brief singing animal break.  Then she consumes the other 5.  At this point, she gets another singing animal break followed by a plate of 2-3 higher preferred foods which she consumes independently. 
 It seems so straight-forward and even though we've been successfully implementing this method for a couple of years, I still learned so much.  For example, foods we thought Josie did not like may not actually be rejected on the basis of taste.  For Josie, she may reject foods based on effort.  For example, it takes a lot of oral motor effort to chew and swallow a dry sandwich.  Likewise, for a kid with fine-motor challenges, pasta is difficult to eat because it takes some higher level utensil skills.  So take a kid who doesn't like to eat to begin with and then give them foods that challenge their oral and fine motor skills, and you can expect opposition. 

We also learned the importance of introducing new foods to Josie and maintaining variety.  When we set out on this journey, we worked with a dietitian who helped us understand the importance of the nutritional values of the foods we presented to Josie.  To help Josie achieve her daily hydration requirement, we fed her lots of water-rich foods (predominantly fruits and vegetables).  Having both heart and lung defects, Josie's cardiologist and pulmonologist stressed the importance of teaching Josie proper eating habits to help her maintain a healthy weight throughout her life for the benefit of her heart and lungs.  Once again, we focused on fruits and vegetables.  Josie's typical meal would consist of a lean meat (grilled chicken, sliced turkey, ham, etc), a fruit (apple, cantaloupe, banana, blueberries, strawberries, etc), a vegetable (cucumbers, green beans, carrots, avocado, broccoli, etc), and a slice of string cheese or Greek yogurt for calcium.  For kids that are underweight or need extra calories, those can be added in a healthier way with high-calorie, nutrient-rich foods like peanut butter, avocado, full-fat Greek Yogurt, and whole milk or Pediasure.

The benefit of feeding her this way is that she learned to eat healthy foods because she'd never been exposed to an alternative.  Imagine our surprise when we were told in feeding therapy that foods she'd rather not eat (and that we never worried about feeding her because they have little nutritional merit) were also important.  Josie had macaroni and cheese for the first time in feeding therapy and it went in the "non-preferred" category along with all other pasta.  Josie had waffles and syrup for the first time in feeding therapy.  So why would we take a child with healthy eating habits and introduce her to new foods that aren't necessarily healthy? 

Yet another light bulb moment: We don't want Josie to get into the habit of having a small handful of foods that she's willing to eat (even if they're healthy) and rejecting any other food that's presented to her just because it's unfamiliar.  We want Josie to go to school or a birthday party and eat whatever is served be it pizza or peanut butter and jelly.  This doesn't mean that we need to offer her a consistent diet of mac and cheese and chicken nuggets.  It means that we need to introduce her to new foods that she is likely to encounter throughout childhood and follow feeding protocol so that Josie realizes that even if she's unfamiliar with a food, she must still try it.  Most of the time her healthy diet is ideal.  But pancakes once a week are beneficial.  Even if Josie would rather have Greek yogurt and fruit, she needs to try new things.

So while we took the dietitian's advice and introduced and established healthy eating habits, we also learned that we need to keep introducing different foods to avoid getting in a rut. 
Whew!  I'm exhausted.  If you've made it this far in the post, God bless you.  Once again, if anyone has further questions, please do not hesitate to email me.  But for now, I'm going to wrap it up with a big thank you to the staff at the University of Iowa Children's Hospital Pediatric Psychology staff for literally changing our lives.  For those interested in learning the behavioral approach to cope with feeding problems (and/or other behavioral issues), here is a small list of resources representing the East and West coasts as well as the Midwest:

University of Iowa Children's Hospital - Iowa City, IA

Kennedy Krieger Institute - Baltimore, MD

Monroe-Meyer Institute - Omaha, NE

Seattle Children's Hospital - Seattle, WA

 For more information on how you can learn effective strategies for coping with the difficult behaviors that come with the turf in parenting, I highly recommend the following books:
I love, love, LOVE this book!  It's not about feeding (although it could certainly help with that) This book is filled with so much common-sense advice for dealing with kids of all ages in an easy-to-read manner complete with real-life examples.  I plan to read this book again and again as my children grow because I truly feel like the advice is designed to help prepare children to be competent and successful adults.  Learn how to get your kids to respond to your directive without having to raise your voice and other extremely helpful advice for establishing a peaceful household and raising respectful little people. 
This book is geared towards those of us that are in the trenches with defiant little people who are determined to test boundaries every minute of every day.  It's for those of us who are sick of hearing ourselves say "No!  Don't!  Stop!  Wait!  I told you not to.."  It stresses the importance of recognizing and praising positive behavior and it helps the reader understand why time out isn't always the optimal solution (see Josie's feeding example listed above) and what you can do instead.


  1. I'm sure this was a difficult post, but as a pediatric therapist, I readily admire how well you articulated the process! I'm so glad that it is working for you:)

  2. Hey Little Mama - sounds like an excellent program and you and Josie are on your way to having it mastered! Thanks for the book recommendations!
    My question is, and I am just totally curious here, (NOT trying to be smart)... does Merryn follow along also? I am asking because I can just picture her eating her regular meal and then sitting patiently - (while Josie is still on her first five bites of sandwich) - and saying "OK, Mom, what's for dessert? :-)"

  3. Wow that was a marathon! Glad you were able to go and glean some great stuff from it!

  4. Wow - kudos to your awesome committment to being great parents. I am praying Josie will pass thru this difficult stage and master self feeding. You guys rock as parents. Thanks for sharing.

  5. Thanks for yet another wonderful post. :) Though we do not use a feeding tube, Mya and I have encountered many feeding issues. Currently she is refusing any textures and though she can eat most whole foods is refusing to and just wants pureed. Your post was a wonderful reminded of how we dealt with Big brother Landon when he would toss his plate on the floor for every meal, and we would have to make him get up clean it up and resume eating. It is incredible how you forget the techniques you used with an older child for the next. Love the book recommendations too.

  6. That was very interesting. I know this is a serious subject and you put in a lot of effort, but
    I laughed when I read that Travis was going to work in the hotel room while watching Merryn at the same time. Glad you & Travis had the support of Mama Hop and Aunt Leanne during that week.

  7. I finished your series and it was great advised! Thank you for taking the time and writing about such an hard subject for you. It is for us as well and I felt identified in many of your statements about the reasons why Josie eats or not some foods… not because of taste but because of the level of hard work it takes to eat certain foods… my son is still a work in progress in that aspect, to this day he won’t eat a piece of steak, but I know one say he will. Most of the behavioral tactics you’ve explained we use on a daily basis at my house. Keep up the good work and thank you for being so inspiring!