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Details of our Feeding Protocol

Thursday, June 16, 2011

So, here are more details about our Feeding Protocol.  What follows is what we spent 4 weeks learning to do at the hospital.  It may seem easy but try it and you'll see it'll send you to a 16 ounce Margarita as fast as you can say, "frozen."  Let's just say, the feeding protocol is intensive.  

The Feeding Protocol includes putting Bennett in a high chair in view of the DVD player and with access to alot of stimulating toys that might motivate him to eat.   

I must prepare 2-3 foods and 1 drink for him.  His foods, at this point, include 2 pureed foods and 1 chewing food.  His drink is chocolate milk (whole milk) with a Vanilla Carnation Instant Breakfast included.  All of Bennett's foods are made to be as high fat and high calorie as possible.  We use 1 tbsp of Duocal in one food to help increase his calories.

Before I can sit down to feed Bennett, I must weigh all of the foods (which I place in the same type of bowls).  I weigh the foods so I can keep track of how much Bennett has eaten after each meal.  We must be very precise with keeping track of the exact amount that is eaten in order to count his calories, fat and protein and monitor his weight gain.

Once I am ready to feed Bennett, I start a 25 minute timer.  I feed Bennett the foods in the same order each time.  First, he is given a pureed food.  Then, he is given a chewed food.  Then, he is given a pureed food (either a new one or the first one, depending on whether I am feeding him two foods or three at the time).  Then, he given a sip of his drink.

Bennett is required to "clear his spoon" each time he eats.  So, we do not allow him to eat with his teeth or eat only a part of the food.  We also require Bennett to drink 5ml of his drink each time.  If Bennett does not comply with our requests, we without the movie and toy until he does.  The goal is to teach Bennett how to eat off of a spoon correctly and how to take big drinks from a cup.

Bennett uses a toddler spoon, which is fed to him.  Bennett drinks from a medicine cup.  The medicine cup is small and flexible.  It holds only a small amount of fluid and wraps around his lips correctly to help support him in drinking.  A medicine cup also helps me know if he has drunk enough to move to the next bite.  The goal is to move him from 5ml per sip to 10 ml to sip and up from there.

The Feeding Protocol has been designed to allow Bennett to control one and only one thing: if he eats.  The rest of the meal has been decided beforehand.  He cannot choose what he eats, how he eats or when he eats.  (He may choose his toy within reason.)

It is imperative that we follow this protocol to the tee.  Doing so will help Bennett's brain and body learn to eat correctly and when prompted.  Eventually, Bennett's brain will eat without the need for a caregiver.  And, eventually, Bennett's body will develop a natural hunger cycle so that he eats when he wants, rather than when he told to.

When I am ready to start feeding Bennett, I present his spoon of food near his mouth and say, "Take your bite."  Bennett can choose whether or not to eat.  I never force him.  If he eats, he receives his toy back and gets to continue watching his movie.  If he does not, I repeat, "Bennett, take your bite."  If he continues to refuse, I say it again in a very neutral monotone way.  I am not to show any frustration towards him or any enthusiasm.  I take my own feelings out of the situation so that even that is controlled.  Nothing he does is going to get any reaction of me...unless he "takes his bite."  If he continues to refuse, I eventually put the bite down and show him a toy.  If he is interested, he will take the bite and can get the toy.  If he is not, I can choose another toy.  After a second toy, if he is not interested, I just keep directing him to "take a bite."  Ultimately, we can have show down for 25 minutes.  At the end of that time, if he has not eaten, the meal is over.  

If Bennett does take his bite, I praise him, "Good bite, Bennett!  Good eating!"  I never use the phrases, "Good boy!" or "Good job!" as those are too broad and non-specific.  I will start the movie again if he has complied.  At which time, I give him about 15 seconds to play with his toy or watch his DVD as a reward.  After that, I stop his movie, take the toy and offer another bite.

This goes on for 25 minutes.  I must make myself a mark on a paper nearby in order to remind myself on which bite I am on.  I cannot change the patterns of bites.  Bennett needs to know which bite I am offering and know that even if he likes a food, he cannot have it until he has taken the other bites.  This process keeps Bennett from refusing foods he doesn't like and limiting himself to only a few foods he will eat.  

No foods are given until they have been approved by his Speech Therapist for safety and ability to eat correctly.  Since Bennett "pockets" food (allows unchewed food to sit in the "pockets" of his cheeks and under his tongue), he cannot be given many solid foods. Once he is taught to chew his food correctly, these foods will be introduced more during his meal times.  

Bennett is given many pureed foods because he does not have to chew them.  This is an effective use of his jaw and of the meal time.  If the goal is to get as many oral calories in his body within 25 minutes, pureed foods work best.  The goal is to help Bennett chew efficiently over time so that eventually he can eat more difficult foods quickly and pack the calories that way.

Once the timer goes off, I say to Bennett, "Bennett, your meal is over.  Good job taking all of our bites." Or, if Bennett did not take his last bite before the timer went off, I say, "Bennett, your meal is over.  You did not take your bites/finish your drink so you may not play with your toy.  You can try again next time."  It seems robotic to say but it is very directive for a small child and helps them learn how to behave correctly.  I have been told to ignore all negative behavior, including throwing toys, spitting food out or screaming.

I take Bennett down from the highchair once the timer goes off. Then, I must weigh all of the food to find out how much he ate.  Later, I figure out how many calories, fat and protein he ate for the day.  This helps me (and the dietician following Bennett) sort out if we need to change how many ounces of formula he needs at night.  The goal is that eventually we cut down on the amount he takes at night.

I must make his food daily or at least weekly.  This includes blending all of his food and preparing it in tiny containers.  Since he eats 4 times a day, I must have everything ready before the meal begins, preferably before the day begins.

This process is intensive and will be difficult to teach to others.  But I agree with the hospital that if we can do it, it will be very effective.  Bennett is eating 50% more than he was a month ago.  That is the success I am holding on to as I sit there staring at my son in my monotone voice stating, "Bennett, take your bite."  It's the best feeling when finally, he does.


3 Responses to “Details of our Feeding Protocol”

  1. I usually read your posts at 3 am when I wake up, so I don't always make it back to comment. Please know that we are with you guys through this though! I'd be interested to hear how his feeding stats change in the days at home. You have quite a bit going on, so definitely keep those margaritas coming!!

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  2. hi! i'm a former tube mom and work with our local pediatric hospital to change how tube-fed kids are managed and making sure that there is a path to weaning. we use different methods, not behavioral, and i'm wondering whether your protocol includes any calorie reduction so that there is an *internal* motivation to eat? (in other words, so that your bub is allowed to be naturally hungry, like we are before a meal, and then eat in response)? good luck! it's not easy process, for sure.

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  3. Hi again! Just popping in to send you encouragement. These feeding protocols are so tough, but they really do work. Stay strong, take lots of deep breaths, and remember that today may be not so great an eating day but tomorrow could be THE day when it all finally clicks. You will know it the instant that it happens, to you as the primary feeder following the protocol it will be like a neon sign above his little head. And you will see him leaning in for bites, not because he's anticipating and trying to keep his reward, but because he actually likes it. Stay strong, it will work.

    (Oh and hopefully this is okay, but I thought I'd share our experience per Olga's question. We did/are doing a very similar feeding protocol with my twins, one who is now tube free and loves eating and the other who's hot on his tail and slowly eating more and loving it. We were not able to wean the calorie reduction to create an internal motivation to eat (a hunger drive so to speak) until the data showed that the boys were consuming enough by mouth that they were gaining wait consistently (approx. 4 to 10grams per day on average over the course of one week). Once they met that rule, and their compliance behaviors (taking a bite or sip willingly) were met consistently we were able to decrease the daytime formula boluses and eventually their night boluses too, as well as adding the medication Periactin to stimulate greater hunger drive. Periactin makes my kids famished and they want to eat usually two to four times the volume of food and liquids. Now we are weaning our tube free boy from using Periactin, and still using the medication for his twin brother regularly until he's totally tube free. It's a miracle drug for us, because we'd hit a wall with volume and desire to eat and this really helped the boys get over their last hurdle.)

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