Back in June we embarked on another journey to blended diet land. I must admit that in the beginning I was unsure, overwhelmed, a little lost, but I knew one thing...I just wanted Christian to be healthy. And no vomiting.
Just a quick synopsis of what led to the decision to go blended: Christian threw up from the first formula feed he had after his accident, sometimes multiple times a day, but every day without fail. Then we changed to an elemental formula that was easier to digest. But the vomiting and reflux persisted for months. We finally visited our first GI doctor who gave us the miracle of Renitadine (an acid reflux med) and that cured all, it seemed, for about a year. Then we switched to the keto diet, which didn't give us any stomach issues with vomiting but did give Christian a lot of constipation. As soon as he came off of the keto diet he started throwing up again. And then it got worse and I couldn't understand why! It was the most frustrating thing! How could something that used to work just no longer work anymore? We were using the same brand of formula, the same medicine for reflux, the same volume, what the hell?!?!
Enter the blended diet.
I first started to introduce it when Christian just wasn't holding feeds. Or he would throw up at least one a day in a large volume. In anticipation of starting the blended diet soon I had purchased a Ninja chopper/blender. So I had that on hand to blend up some banana and avocado. I really didn't know what I was doing. I just tried to figure - what would I feed him if he were sitting down at the table right now asking for food? He held it down better than the formula because, at the very least, the blends were thicker.
And the blending commenced.
I've learned a lot about calories, foods, allergies, and combinations. See, it's all well and good to think - Oh, I'll just give him this! It's 300 calories. But Christian has issues with volume and speed. This means that he can't tolerate large amounts of food pushed into his stomach at once. That is a sure fire recipe for it coming out Exorcist style all over you. So if 300 calories makes a blend that is 300mL and Christian can only tolerate half that in one feeding, well that's only 150 calories. And we're shooting for 1000 a day! This is where it gets hard and this is where we have to get creative. In the beginning of our blended journey he actually lost 3 pounds and I freaked out thinking I was doing a horrible job and what was I thinking and why am I doing this.
But we finally got into a groove. The most immediate benefits were his digestion and constipation. He went from constipation + Miralax = earth shattering, spackled blow outs every few days that were so vile we needed a hazmat suit to change it, to consistent regularity. They don't smell nearly as bad and they come every day without fail without Miralax. They don't hurt him, he doesn't strain, and he's a lot more comfortable. By the way, I have never talked about poop in my life as a conversation topic as much as I have in the last few months, just for the record.
Other benefits are that he's a lot more alert, he gets a variety of foods, it feels like he's eating what we eat and it feels less medical. Benefits also extend to me - the Mommy! One of my favorite things about Christian's new diet is that I get to prepare it and I take a lot of joy in that. It does take work, it does take a lot of preparation, but I do it lovingly counting calories and blending knowing that I'm cooking for my son.
We are not perfect at this. We are not purists. So if we have something for dinner that is well rounded, it goes in the blender for Christian. I also have some quirks I've developed like I make two blends every day. Here are examples of Christian's menu:
1 Greek Yogurt
1 cup of Cheerios
8 oz. apple juice
1 jar of baby food (peaches, apple cinnamon oatmeal, or something high calorie)
Frozen strawberries or blueberries
...and some other stuff
1 Bushel of Kale or Collard Greens
1 jar of baby food (high calorie meats)
1 jar of baby food (squash or sweet potato)
8 oz. of apple juice
1 boiled chicken breast
1 cup of whole wheat pasta
2 tbl. of olive oil (for calories)
1 scoop of protein
...and some other stuff
I make two blends because I just don't like the idea of blending everything together. Nobody told me this was bad and if I can bring myself to do it, it won't be so hard to think of things to make these two blends 1000 calories each. It's just a quirk I have. Fruit and meat blended together? Gross! Some of the fruit blends I make him I'd eat myself, they're so tasty! I should get over it, because, like I said, it would be easier to make one blend a day. But right now, we're doing two.
The examples I provided above are by no means absolute. We trade out. I've added peanut butter and Nutella to boost calories but it seems he has tummy troubles when I add these so I don't anymore. I've added Nutrigrain bars, apple sauce, graham crackers, and homemade mac and cheese. I use apple juice because it's great for constipation. The dietitian isn't a fan because of the sugar but it also has calories so for now we're sticking to it. It's harder to find calories when you can't add a lot of dairy. And another thing, I'm not really that comfortable with cooking meats for his blends other than boiling chicken breast. So for now we do baby food meats, which are already blended and have the calorie count right there on the jar.
We found out Christian was having trouble with dairy after I took him off of it for a week to see what would happen. Nothing happened when I took him off the dairy but when I put him back on it, he started having some diarrhea. The pediatrician suggested adding Greek Yogurt (which is super delicious, by the way, and I think Christian should share this with me) so we do that and we also sometimes add scrambled eggs and instant breakfast powder for extra calories.
With us, it's all about the calories! That's why we use olive oil, too. Since Christian doesn't like a lot of volume, we have to pack as much into each blend as possible. The bigger the blend, the more calories we have to fit into it. And each blend is loosely calculated to 1000 calories each, which gives us 2000 calories for two to three days.
Because I'm paranoid about calories, I also added in 200 calories on a slow feed over night of his old formula. This gives me piece of mind that he's won't be seriously hungry when he wakes up. It also gives me piece of mind that he's getting that extra oomph of calories at the end of the day.
Good things for Christian's body - Kale and collard greens and banana and avocado. Both banana and avocado have a good amount of calories. Avocado is like calorie gold. Kale loves Christian's digestive system and Christian's digestive system loves kale. Do I ever eat it? Hell no. But it's great for Christian, so it's a regular on our menu. I just steam up a whole bushel and it all goes in.
So that's what Christian's menu looks like. It's a work in progress and I'm always experimenting with new things and new ways of giving him food. We don't use a pump for his blends because they're too thick and his stupid pump won't budge. So we bolus the blends (push the food in by tube with a large syringe). But we have to do it slowly. I leave him hooked up to a tube with the syringe at the end with food inside. Then I leave him to sit and play with a toy or watch the window blinds (he loves that) and every time I walk by I push a little in. It works for him. And since I've been doing it like this - no reflux or throw ups.
There you have it. Christian eats food through his tube. What I've explained works for us and us only through trial and error. I tried many times to follow what others were doing and when it wouldn't work for Christian I'd get really frustrated because that's how it's SUPPOSED to be! I had to ditch that attitude and go with what works. 80% blends is good enough for now with the 20% formula over night easing my calorie stress.
Just for your information, Christian is doing amazingly well! I seriously thought he would be out of it for days but he is alert, moving around, his incisions are looking good, and I'm excited about it.
We got a couple donations so thank you - you know who you are! We are so grateful! Please consider donating to help Christian and his friends participate in their first race!
This is the story of Christian and his family. On July 8, 2009, Christian suffered a near drowning at the age of 11 months old. Miraculously, he was brought back to life and has been fighting ever since. Because of the lack of oxygen to his brain, Christian experienced an anoxic brain injury. He is now relearning everything from moving to eating to even thinking. As his family, we're faithfully and devotedly along for this beautiful ride as Christian's journey is still being written.