Blended Diet: Bye Bye Formula

compare to a tiny apple

Noah's eating has been a yo-yo of a journey as you all know.  He started out on breast milk, then was drastically switched to formula.  He was introduced baby food around 4.5 months old and took to it really well and then over some time all oral eating started to decline.  Yada yada yada....(insert many months later)...(add in surgeries)...(with a dash of oral aversions and GI complications).....and now he has the infamous G-tube (feeding tube directly in his stomach).  It's a small "button" that has a cap that is attached to him at all times (the balloon part is inside his stomach).  Yes, we change it out if the button gets old and no it doesn't hurt him at all.  It has a plug that keeps it closed when you do not have a tube/extension attached to it.  As you can see the tube is really narrow and the button is very small so it's not like we can just push a steak through it.  You are extremely limited as to the texture and consistency of food that can be pushed through the tube, past the button, and into his stomach.  Liquid of course being the easiest.  Doctors are very quick to put children on feeding tubes and yet there is very very very few ways to get them off the feeding tube.  ***hint:  Looking for a profession?  Become an experienced Medical professional that ONLY deals with getting children OFF feeding tubes.  You will make millions!!!  No lie.

When Noah was put on his feeding tube at 1 1/2 years old it was because he stopped eating orally and never really could drink orally anyway. This was a means to keep our boy hydrated and nourished.  We were given a choice of either pediasure (dairy based) or Bright Beginnings (soy based pediasure type drink).  Basically a high calorie formula.  How many "typical" 1 1/2 year olds do you know that is still surviving solely on formula or breast milk without any other type of food or drink given.  Not too many I am sure.   Why should Noah?  A question that haunted me since we left the hospital.

Have you ever read the ingredients on a can of pediasure?  Um...water, sugar, more sugar, stuff I can't pronounce, and even more stuff I have never heard of.  And this is what the medical field was telling me over and over and over was the best choice for my son.  I just didn't get it?  He was eating many types of baby foods and ground up dinners that my husband would make for the family.  He never once had an allergic reaction to any type of food including all those that they tell you to be careful of.  He loved spices and avocados and beets of all things.  Then BAM....insert gtube....and then take away all real food?!?  Can you see why I was so put off by forcing my toddler to now only consume formula.  It just wasn't right and I could tell that Noah's body also didn't agree with his new forced diet plan.  He got constipated every single day, he threw up more days than not, his reflux was horrible and his GERD/Sandifer's Spasms intensified.  He was always full of gas.  He was always crying during therapy or tummy time.  He didn't like to be hugged tight.  He was always sickly looking from always feeling like he needed to vomit of from constant bouts of vomiting.  He would wake up every single night.  Not always crying but usually tossing back and forth from discomfort.

We had to rework our lives and everyone who ever watched him to fit in his new feeding schedule that was so strict that with the slightest alteration you would be sorry to not have a puke bucket handy.  Here was his "formula" schedule that we lived by.

8am, 11am, 2pm, 5pm: 4 oz of formula dripped in by pump over 1+ hours while he was sitting angled upright to prevent puking or reflux.  Then he would have to continue to stay in that upright position for more than 30 minutes while we prayed he didn't puke.  Then if we were daring enough and had a towel handy we could then try to lay him down for a nap or to play on the ground and again say a prayer he wouldn't lose all that went in him and choke.  He never just lost a little bit.  If he gagged or refluxed hard enough he would have three rounds of projectile vomiting.  I am sure every inch of everything we own has been a victim by now.  Then we had to "try" to give him free water in between meals to increase his fluid intake and again hope he didn't lose it.  Then we also had to slip in two different types of medications to reduce the acid in his reflux so his throat wouldn't get damaged from all the vomiting.  We would have to line his crib rails, under his bouncer chairs, and under his high chair with towels.  We even had to keep a towel draped over the backseat of our car when he was sitting in his car seat.  If we won the feeding lottery he was able to keep that 4 ounces in him and he/we would have 1-1.5 hours to get in as much as we could with play or therapy or errands before we had to start the cycle all over again...every single day.  Those were good healthy days.  Toss in a running or stuffed nose, a cough, an upset stomach, constipation, teething, fevers, crying fits, too tight of highchair belt, or just too hot of weather and the whole process got much much harder and the rate of keeping in any of that formula would literally be an act of God. We just kind of expected him to throw up and it became a new norm for us and we had the whole Operation: Puke Patrol down and could do it with our eyes shut and one hand tied behind our backs.

None of this should be normal.  None of it should sound right.  None of it should ever happen.  Our lives should not be turned into fear of feeding our child and then sorrow for not being able to keep anything in him.  We told any medical professional that would listen.  All of his many many doctors.  Nobody would ever consider that it was the formula. All they did was make us change the type of formula.  "Try a non- dairy based one, try a soy based one, try a special anti protein one, ect."  We tried to listen to them but we knew...I knew! It's the formula that isn't working not my son's body. I am not against formula in general but for Noah specifically it just wasn't working for him and I needed to figure out what would.

a great book to get you started

I took a very controversial and highly debated route and switched Noah over to what in the tube world is referred to as "The Blended Diet"  BD for short.  Basically, real food, blended very thin, and fed through the tube instead of the formula.  Not rocket science but try finding one medical professional that promotes such a diet is like finding a needle in a haystack. Yes, many are intrigued with the idea of the BD and some will even give you the go ahead to try it.  However, nobody is really there to help you get started and you pretty much have to research it all on your own.  Most insurances will not cover a dietitian for the BD either.  Thankfully there are networking sites full of BD families and even a couple books now published that help with some of the in's and out's of starting and living with a BD. 

Not sure why doctors and therapists are so hesitant to learn and promote the BD.  A variety of reasons have been brought to light but no real definitive answers.  Some are too scared of causing their patients to have an allergic reaction.  Some are nervous that the families will not take on the full responsibility of the BD and harm their child's bodies.  Some are afraid parents will just throw in PB&J's or Mac and Cheese for every single meal and call it good.  Whatever the reason is I have not had a single doctor get excited about me even mentioning the idea of starting Noah on the BD.  So, I didn't tell most of them and really would only talk to his Dietitian up at Shriner's (because my insurance would not cover a dietitian) and she and I would work out the logistics  to the BD...because their are many.  She has been a lifesaver for me and has been the only person I could turn to for help coming up with recipes to fit Noah's specific needs.  Since meeting with her I have been given a few other food ideas by a couple of his doctors that I have admitted doing the BD with.  Not full recipes but ideas of different foods.  That has been helpful. 

So active these days

I will go into all these logistics in a separate post for those who might be interested. For those of you who are just looking for Noah updates I am proud to say that we are currently two months into the process of a blended diet.  We had to start slow and transition him (doctors orders) but now I wish, for our own situation, that we would have jumped in head first.  It has only been in the past five days where Noah has been on a full blended diet with little to no formula. 

This week alone Noah has made strides.  I mean that when I say it.  He is sleeping through the night completely.  He has found his voice and is really letting everyone know how much he likes to hear it.  He is so much stronger I can't even describe it.  He is consuming four times as much food per feeding than he was in half the time= more free time to play :)  He is so much happier, doesn't have really any gas, is going potty unaided daily, has energy like I have never seen before, and the MOST rewarding thing of all.  We are now FIVE full days vomit free.  We have been able to cut out one of his reflux medications and we can actually lay him down on the ground mere minutes after feeding him.

Yes, the process of a BD is tedious to start out but it has literally changed our lives for the better.  It has been one of the best decisions I have ever made for my son.  It's almost been a little miracle for my family.


****Update (one week after drafting this post) Noah has run into some major constipation issues. The motility of his GI tract isn't functioning properly.  I am pretty sure it has something to do with one of the foods I was putting in his BD.  Recipes have been adjusted, we have cleaned him out, we have started using Miralax daily again, and I now know what signs to look for to prevent future GI issues.  This should be a warning to all of you who chose to start the BD.  Make sure to keep them going regular.  If you find that their motility is slowing down then you need to take action immediately to prevent a total shut down..  Also, makes sure to add a fair amount of fiber to their BD.

I still stand by my last statement that the BD  has been a lifesaver and the best decision we have made for Noah.  Even with this past weeks hiccups.  Learning as we go :)