Just One Bite!

This is our story about oral aversion, tube feeding and blending. This is what has worked for our family, based on my own research and opinions. 

THE HISTORY!

From the day he was born, my sweet boy Chase had a hard time eating…just never quite got it. It didn’t matter if it was a boob, bottle or spoon – he was not interested. At about 10 days old and losing weight quickly – due to lack of food volume and increasing energy he was burning trying to eat, it was getting concerning. It was time to place a NG Tube, a tube that goes down the nose into the stomach. Formula or Breast milk would flow through a pump into his tummy – Initially, one ounce per hour/ 24 hours per day. He received constant nourishment, but vomited most of it. It was a vicious cycle, battling doctors and debating with therapist. Needless to say, having a tube down the back of your throat and excessive vomiting did not help the oral aversion – it made it worse. I would attempt to give him a bottle during the day and he would scream/twitch/turn his head - refused.  The goal was survival and calories, the feeding tube won.

First, I thought it was my overly engorged breast, latching issues. Tried all positions, Lactation Gurus, attachments, you name it – there was no change. Then we switched to bottles, tried every nipple, temperature, holding position – no change. I purchased every invention imaginable to help increase his oral skills – Nuk Brush, Boon Spoon, Chewy Tube, Mesh Rattle, fancy straws, Honey Bear Cup, Nosie Cup – and many, many more. I guess it was just wishful thinking, that the right tool would change his mind. Maybe it was the comments from family and friends..”Is he eating YET?”, “Have you tried green beans, mac n cheese?”, "Did you burp him first". “You just having found anything he likes to eat!”, “Don’t worry, he will just grow out of it!”

Then, I thought it was me? So, I let someone else feed him, again, no change. It was time to get help, We started with our Early Intervention program at 4 months old.  Chase had OT (Occupational Therapist) and SLP (Speech Therapist). OT, provides assistance with daily living skills, like eating and working on textures, sensory etc. Speech Therapist work on the function of the mouth, swallowing and of course speech.  Speech is greatly impacted by oral aversion/delayed eating. If you don’t learn to use these muscles when eating, using them to make sound is very challenging. 

I remember having a SLP who would strap Chase in his high chair (barely 6 months old) and turn on a timer. She would shovel baby food in this mouth until the timer went off (5 minutes later). He was crying, I was crying, he would start vomiting - she was fired. I really didn’t know any better, but was looking for someone who had the right answer.

Over time, we found out (through numerous swallow studies) that he had mechanical issues with swallowing. A video swallow study watches the food (in our case, liquid) go through a complete swallow cycle. Unfortunately, most of our studies were limited, due to Chase’s lack of interest in swallowing ANYTHING. But, we did find that he had a delayed swallow, aspirated and had pooling. Basically, swallowing was difficult from day one and it still is. He “wants” to eat,  it is a Challenge. For me, it’s like a child who has paralysis and “wants” to walk, but, it just doesn’t work.  We have accommodated Chase and cheered him on along the way. He has made great strides and I will share some of the tips that have proven successful!

FINDING THE RIGHT BUTTON!

At 9 months, after consistently torturing my son with sticking a tube down his nose.  I finally convinced the doctors to move forward with a Gtube – a “permanent” option that is a tube directly into his stomach. I change this tube every 3 months. I think it looks like the valve on a beachball – we open it, use a connector and enter his food. It is out of sight, it is easier to manage and better yet, he can’t pull it out “as easily”. Side note – I highly suggest the AMT Mini One Gtube.  Our provider used a Mickey Button, which was nothing but problems (leaking, yeast, granulation tissue)...it was horrible and very painful! The Mini is a smaller product and I think that it is made out of a different type of material – Chase has zero “reaction” to this tube!

There are things like decorative Tube Covers and Belly Covers to brighten things up. You can get your kids initials, or favorite sport or cartoon character...nice...they are cute, they are pointless. The tube should never leak! If you need to put a pad around it, then you need to get a new tube. When we had the Mickey, we would use Polymem (dressing around the site)..it would help the moisture, then create more problems. Chases tube gets no special care, it is washed in the tub and dried when he gets out.  It is part of him, he is used to it. He is active and plays rough– it has came out a few times, its no big deal. The only thing I am extremely cautious of is keeping it clean. He gets daily baths and is NOT allowed to play in a lake, stream or pond. We are careful of standing water (water table and kiddie pools). We are also careful of “accidents” in the bathtub. Any “dirty” water that could get under the tube could cause an infection. We are lucky, his tube looks fantastic!

After treading through the first 18 months with the vomiting and refusal. I decided it was time to make big changes. Personally, all of these changes were made by my own investigation and trial/error. I have found a couple of good providers/therapist. But, in general, I found that they didn’t care if he vomited, ate or was on a feeding tube the rest of his life.  I have gone to 4 major hospitals and their pediatric feeding clinics, no one had an answer. I spent countless hours on the highway, nights in various Ronald McDonald Houses and left with a new chewy tube. I took matters in my own hands. Blending his food was NOT suggested (actually discouraged), sticking to the can and moving to a GJ tube was in order.  I was not going to settle for a more invasive tube (GJ) – food doesn’t get digested the same, requires 24 hour feeds. I had a plan for my son  to move forward, not backward.  I was going to constantly strive and never settle.  I put my foot down and started making small changes, with or without professional approval.

THE FIRST CHANGES

The first thing I did was call our DME and say “the feeding pump and pole are ready to be picked up”. I hated this equipment, my baby was getting tangled around it and the beeping ran my life. I decided to go to a “Bolus Feeding” Schedule. Bolus basically uses a syringe and tubing and instead of a feeding pump pushing the meal through, the parent does it manually. I put Chase on my kitchen counter and do his feeds. We feed, break for 15 minutes and feed again. He eats 3 times per day (10 oz. each time) and gets 2-3 water boluses. Chase likes water out of a straw cup; he does this with caution and sometimes uses a Thickener – Thick It.

Bolus Info:

http://www2.mskcc.org/patient_education/_assets/downloads-english/565.pdf

I might mention, when he had most of his issues he used a product called Simply Thick. My son was very sick, had horrible, frequent slimy stools on this product. I remember asking the doctor it this could be the issue, they laughed at me. A few months after I stopped using this product for my son, it was RECALLED by the FDA. I have attached the article; our local children’s hospital first only stopped use on NICU, and then later pulled it completely off the shelf. We rarely use thickener now. My goal is to have minimal synthetic products put into my children, as you will see below, his food is adventurous enough!

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm256250.htm

TOOLS SUGGESTED

The only “expensive items” I would suggest – The Chewy Tube, The Nuk and The Mesh Rattle:

The Chewy Tube- (Chewy Dog toy for Kids) Works on building chewing muscles. Can use alone, dip into sauces or fill the holes with purees. Dishwasher safe – Last forever!

http://www.amazon.com/KNOBBY-TEXTURE-CHEWY-TUBE-GREEN/dp/B00175ROGU/ref=sr_1_3?s=toys-and-games&ie=UTF8&qid=1373903125&sr=1-3&keywords=chewy+tube

The Nuk Brush – (Similar to a soft toothbrush), can use alone or dip into foods, dishwasher safe – Last forever!

http://www.amazon.com/Gerber-Nuk-Brush/dp/B001UZ31SC

The Mesh Rattle – fill with your favorite fruit or veggie. Tot can suck through holes and doesn’t get any large bites. A great way to introduce flavors – Hard to clean. Kids with sensory difficulties may find the mesh an odd texture – this was hit or miss with Chase.

I have a similar item except mine is a fabric, not plastic mesh

http://www.amazon.com/Award-winning-Kidsme-Feeder-Small/dp/B005KWL0OI/ref=sr_1_fkmr0_1?s=toys-and-games&ie=UTF8&qid=1373903215&sr=1-1-fkmr0&keywords=mesh+food+rattle

FIRST FOODS

Regardless of your child’s age, when a child is orally adverse it is suggested you start from the beginning. Think babyfood, think 6 month old. Unfortunately, we are not there yet. We are still working on very small bites of Jell-O. We are working on tastes and miniature bites that dissolve (I call them, “Sprinkle Sized”). I do not count calories from oral eating; he gets enough through his tube. Due to Chase’s small stature, we are not able to “regress” on tube feedings at this point to encourage hunger (Another school of thought – Tube Dependency).  I keep this info in my back pocket and as he gains more weight, I will try decreasing feedings!

Here is the info:

https://www.notube.com/info/early-eating-behavior-disorders

I use the above mentioned tools with flavors listed below.

In the beginning we used novelties – this can cause an argument with the families who are “tree huggers” and focused on natural. I was desperate to get my son to eat, and I was willing to start with anything.

The focus is BIG flavor and Disolvable. Our first goal was moving the tongue around simple, small items.  Chewing and swallowing complicated textures will come later – it is our biggest challenge.

-suckers

-cotton candy

-sprinkles

-DIPPING sauces – BBQ, Marinara, Ketchup, Steak Sauce, etc. (we use Gluten free Pretzels, cheese straws, veggie sticks as the DIPPER)

- Jell-O

-Peanut Butter / Jelly

- Pop Rocks – popping candy – a small party in his mouth

- M&Ms – broken up in 4 pieces

-Popsicles (the cheap kind) with Real Fruit and Sugar (We do not use artificial sweeteners – you shouldn’t either!)

-Cinnamon and Sugar mixture – he loves this, often use as a motivator after trying a non-preferred food

-Corn on the Cob (with corn handles), dripping in Butter

-The Blended Diet – yes! He likes the way it tastes

-Frosting

-Apple - cut to sprinkle size – use toothpick to pick up and eat

-Orange Slices (sucks the juice out)

-Strawberries with nondairy whipped cream

- Watermelon – great texture and juicy!

-Very cold sparkling water, though a coffee stirrer (looks like a mini straw)– it’s small enough to get to the back of the tongue – it wakes the mouth up!

Didn’t work: Raisins, peas – anything small and round would cause gagging and frighten chase. Strange liquids do not appeal to him – Coconut milk, juices - not interested.

He Always has ice water within reach through out the day. I have tried every sippy cup ever made. My favs are a old school Tupperware with my own straw, cut to size. And, mini sports bottles with a spout lid from the dollar store. They are both easy to clean and if you lose them you are not out $12!

BLENDING!

When Chase was about 18 months old, I started to Blend his food – with Careful Consideration. Getting a Blendtec super power blender and researching techniques, I gave it a shot. It is a lot of work. But, I will never, ever have anyone talk me into giving my child nourishment out of a can again!! I am embarrassed to say that he had 18 months of Crap in his system; he was fragile, vomiting and miserable. We tried about 10 different kinds of formula – elemental and not – with the same reaction. I cringe when parents give their kids formula, when it is so easy to blend! FYI – My blend is thin, like formula – it is NOT thick.

Immediately after Blending we starting noticing improvement, then when I eliminated Dairy and Gluten – he completely stopped vomiting and started to grow! Most noticeable, his hair, skin and nails looked much healthier!

DO NOT BE SCARED OF BLENDING! It is the best choice I could have ever made for my son, he gets fruits and veggies and lean meats. I can pronounce each and everything that goes through his tube! Everything is fresh (nothing from a can) and NO PRESERVATIVES!

FYI – Blendtec and other similar blender companies will often offer free or price reduced blenders to families with Tube Fed Children.  Our Blendtec will turn an apple into apple juice – it is FANTASTIC!

We started small; I researched, asked other parents and stressed out about every calorie. Then I realized that the “proof was in the pudding”…Is he getting sick? NO is he gaining weight? YES! I stick to a general recipe, alternating the fruits/veggies and meats. I make 48 hours of feeds at one time and I never freeze or make large quantities ahead of time. It is time consuming, I am at the store often and I would not change it for the world. It gets easier!

Chase takes Zero medications, he Does take Probiotics

The items in his blend include:

Meat, Fruit, Veggie, Avocados, Raw Local Honey, Coconut Milk, Cod Liver Oil, Real Butter or Coconut Oil and Peanut Butter, Poly vi Sol (multi vitamin)

Blending Resources:

http://www.feedingtubeawareness.com/diet-nutrition.html

https://www.facebook.com/foodfortubies

-          Prior to getting his tube feed, Chase is offered food at the table – He is required to taste his food- it is great if he takes a couple small bites. While getting his feeding a 10ml syringe is filled with the blend or a small plastic medicine cup and he drinks the blend while I am completing his feed. This is extremely important – EATING = getting FULL.  You do not want your child to think that the only time he gets full is through a feeding tube.

Well, Chasers is embarking on his 3^rd birthday and we are still relying on the Gtube. My boy is active, healthy and thriving. His weight is climbing and tube feeding is a huge part of our life.  The tube and I have a love/hate relationship. I am so very grateful for it, and for my baby! It is a lot of work and I feel like I live in the kitchen. Traveling is tough and our life revolves around a feeding schedule. But, I have found something that works for us. I am grateful of the technology to allow my son to have a tube to provide him nourishment and I will continue to encourage his appetite and ability to enjoy food!