Tuesday, August 2, 2011

Food Rebellion

I definitely have turned a over a new leaf. I am a rule follower. When it comes to Maggie's health, I have done exactly as the doctors have told me to do. Up until recently that is. First the alternative doctors, now her food. Let me explain:

Maggie doesn't eat anything by mouth, so she gets all nutrition through her feeding tube. Since her g-button was placed last September, she has been on every kind of "enteral" formula (which means it can go through the tiny hole in her stomach). We have tried everything from the mildest, broken down formulas all the way up to the more common formulas like Pediasure. But none have seemed to make much of a difference in her vomiting. I never thought it was her formula causing vomiting, but we still went through the process of ruling it out.

When Jessica (her nurse) started working for us, she told me that she's seen a lot of moms make their children's feeding tube formula. I thought it was an interesting fact, but it never crossed my mind that I would do something like thatMaking your own g-tube formula was  for the "au naturel" hippie types who balk at the idea of putting a commercially made formula into their babies, right?!

Don't get me wrong. I made most of Mary Lawrence's baby fruits and veggies. But not because I was a super nutritional freak. It was more because it made me feel like I was doing something right amidst of all the self-doubt of being a new mom.  (Plus, back then I actually had time to chop, blend, and freeze!)

As time went on, though, I started thinking about more making Maggie's formula. I mean, would a pediatrician tell parents it's okay for their toddler to eat nothing but pediasure? Absolutely not. So why is it okay for tube-fed children?

I know they have their reasons - it can clog the tube and the doctors can't calculate the exact nutritional contents as easily as they can with commercially made formula. But still, it just doesn't seem good to never have anything fresh in your stomach. Think about it - all she ever has in her stomach is processed formula sloshing around. Nothing thick, full, or dense to weigh it down and, well, keep it from coming back up.

So we're at feeding therapy a few weeks ago and talking about foods she likes to put in her mouth and things she doesn't. I told her that Maggie hates anything sweet and gags when we give her fruit or milkshakes or Popsicles. But she loves to suck on sour and spicy things. Why? Well we think it is because all she's ever had in her stomach -thus all she ever throws up -is her sweet-tasting vanilla formula. (I'm so sick of it that I want to gag when I open a can!) So no wonder she acts like sweet fruits taste gross; everything she ever throws up is sweet. She does, however, like to suck on pickles, pickled okra, jalapeno ranch dressing and wasabi peas - not kidding about the last one.

Her feeding therapist then suggested we try making her formula, and commented that a lot of her patients are on homemade formula. She said that when a child on homemade formula burps (this is gross, sorry), they learn what real foods tasted like and that is good from a feeding therapy standpoint. "But the doctors tell you not to do that," I countered. It's then that she said something that hit me like a ton of bricks, "Well. sometimes, you have to take the reigns of your child's health and make the decision you think is best for her." Hmmm. .

So I went home and ordered some literature on homemade formula. And I poured over it for weeks. It was all very overwhelming for a non-math person. You have to calculate everything perfectly to make sure they are getting their exact nutritional needs for their weight and age. They can't get too much of a vitamin or too little protein (which makes me think of other toddlers that eat nothing but goldfish and chicken nuggets but that's another question for another day!)  And there is not one magic formula that works for every child, so you kind of have to figure it out on your own. This stresses me out big time. I am a Type A person: if someone gives me a plan, I'll follow it exactly. But there is no set plan, and with homemade formula it's kind of trial and error with what agrees with your child.

The exciting part was that everything I read about blended formula from moms is that their child's reflux got so much better once they were on it, and some children actually showed interest in eating.  I also read stories of incredible weight gain and overall changes in happiness. It all sounded so great! But still, did I have the courage to take this step??? (I am a wuss, I know!) I mean, what if her tube clogged and I had to go sheepishly to the GI clinic and explain. Or what if it made her sick and she threw up peas and pureed turkey all over everything.

But this past weekend I hit a point where I couldn't take the vomiting any more. So I ventured off to Whole Foods and got everything I needed to make my first "concoction." Her nurse offered to cook the organic chicken in the Crock Pot overnight. The next morning we attempted to puree the chicken in the food processor. We gagged so much that we almost had to stop the process. (Tip: never grind up meat at breakfast time). Unfortunately we couldn't puree the meat enough to put in her tube, so I'll have to settle for jarred baby meat. (Oh darn). But the good news is that we were able to blend up the other ingredients into a formula that was thin enough to go through her tube. The first time we put it through her tube, Jessica and I held our breath we were so nervous to see what would happened. But I have to say, there was something so satisfying about putting real food into my child's stomach!

So how did Mags react to it? Well, since we started the homemade formula three days ago she has only thrown up once. That is very good compared to our most recent average of 2-3 episodes a day. Maybe this will change everything....

Here are some pictures of my food "rebellion":

Some of our ingredients this first go round: Omega oil, soy milk, olive oil, avocado, real fruit juice.

About to blend it all up!

Finished product: Four 8 ounce servings out in containers I found in the Target dollar bins. So satisfying.


  1. yum yum yum;) okay, i know you've been in touch with abby some, and i know there is a difference b/w a 7 year-old and a toddler, and i know that virginia does eat her food and doesn't have a tube, BUT abby has always made va's food. probs not processed enough for a tube, but close to it.

    also, do you have a vitamix? they are pricey, but from what i hear they make stuff like this a ton easier. all my mom friends who make their own baby food (i am too lazy) think it's amazing. i really want one b/c we're into soups and smoothies, but def not in the budget right now. anyway, if you find that you will be making mag's formula from here on out, i think the vita mix will make it easier.

    glad to hear a bit of promising news, lee. know that we think of and pray for y'all a lot. you have more on your plate than i can imagine.

    love to all the cordons...

  2. This is so great! keep us updated please. I'm super pumped this is working. You are super mom, never forget it!

    Still praying for y'all,

  3. Nicely done Lee!!!! You are going to be a gourmet baby formula cook once you are finished! Maggie is so blessed to have such a caring mom who would move mountains for her. I pray the success continues sweet friend. HUGS!


  4. AWESOME! I will pray that God keeps this working!!!

  5. Good for you. With all of your frustration over things I think it's time you started trying other things like this and the new spinal doctor. Why not give it a chance it just might be the best thing.
    Keep up the good work super mom!