BRAT (the diet, not the unruly child)

A week ago, perfectly timed with Mother's Day, Isaac started throwing up. We braced ourselves for the stomach bug to take over our lives for the next week or two, as Walter and I assumed we'd all drop like flies--on the bathroom floor. We took our preparation seriously, and thankfully, it wasn't needed since Isaac was the only one who got sick. As a result, my house was really clean. It isn't anymore, since Isaac spent his recovery days screaming, and I spent his recovery days telling him I had to go potty (frequently) so that I could shut the bathroom and pretend I was alone for three minutes. Tuesday night Walter said, "I really can't wait for Isaac to get back to his old self. Well, not really his old self, since I try to forget the past two and a half years, but his new self, as of three months ago." We love both his old and new self, just his new self a tad more.

Isabella actually wanted to get sick, because she knew she would then be allowed to drink Gatorade. I tried to impress upon her that the benefit of drinking Gatorade does not outweigh the amount of time she would spend feeling miserable. In the end, I let her have some Gatorade so she would stop willing the stomach bug to descend upon her.

If you've been reading this blog for any length of time, I'm sure you've come across the fact that Isaac has a feeding tube--a mini button (not a Mic-key, although they are practically the same) g-tube, in case you want specifics. Now, there are some benefits to this: he doesn't complain about what I cook for meals, and I don't have to pin down a screaming child and pry open his mouth for a teaspoon of Tylenol--nope, I just shove it in the tube. Doesn't that sound fabulous?

It does. Aside from the major fact that my three year can't eat with his mouth.

Pretty much everyone who knows anything about or deals with a feeding tube, assumes the adult/child with the feeding tube, is on formula. This is usually an accurate assumption. Before the tube is placed, a plan is set up with the GI doctor about what sort of enteral nutrition that person will receive, and unless there are other medical issues that require more specialized formula, you get Pediasure. Plain and simple, right? The medical supply company delivers your Pediasure to your door, and you are on your way to "complete nutrition"...or something like that.

****Disclaimer: First of all, I'm not a doctor, even though I like to think I'm Isaac's doctor, but I'm not going to pretend to be your child's doctor or assess your needs. Secondly, I have an opinion about nutrition, you may not agree, that's cool. I like to agree to disagree with lots of people, and you may be one of them--we can still be friends. Thirdly, formula is very essential to keeping many adults and children alive, and for that, I fully appreciate the benefits of formula and do not judge its use. We do use formula for Isaac. He is on a fifty-fifty blended diet/formula diet (Organic PediaSmart). 

Anyway, back to the stomach bug and our Walking Puke Bomb, as Walter lovingly nicknamed Isaac. We had some Pedialyte on hand from Isaac's last surgery, so he was strictly on Pedialyte for about twenty-four hours, then he was begging to eat, and I think he was truly hungry, although we really don't know if he actually feels hunger or relief of hunger because he can't tell us. I can literally be holding him and giving him a syringe of yogurt, and he's screaming that he wants to eat--dude, you ARE eating! That's where this whole lack of communication/comprehension/I have a kids with special needs comes in to play, and can become very frustrating.

So, I'd given him a slow feed of formula, and he really did perk up, and started to get some energy back, until later that night when his whole body practically exploded vomit all over my body. It was pretty spectacular, if you can think of volcanic vomit in a spectacular way. I told Sarah it was all my fault that he threw up again, and he shouldn't have had formula...The Blame Game--it's super fun and the mom ALWAYS wins, and I love to win so I'm really good at it!

Since Monday, he's had eight ounces of formula. I haven't been starving him, I'm just severely cutting back on his formula intake, not that that is what gave him the stomach bug in the first place. He just had some sort of virus that was completely unrelated to food or formula. Tuesday, I replaced Pedialyte and formula, with coconut water and rice cooked in chicken stock. Then added applesauce to the rice, and gradually worked up to yogurt in the blend in an attempt to replace the good bacteria in his gut. The BRAT diet for a tubie--it can be done. The last few days his blends have been back to normal. On any given day, his blend may include (not all at once): whole milk, almond milk, coconut milk, chicken stock, whatever we have dinner, carrots, spinach, lettuce, turkey, yogurt, kefir, almond meal, almonds, flax meal, avocado oil, avocado, mango, eggs, celery, rice, oatmeal, our leftovers that we're tired of eating, ground beef, peanut butter, almond butter, honey, etc, etc.

If you want to know more about creating a blended diet for your tubie, there is a blenderized diet facebook page, web-sites where parents share their blends along with calorie counts, and you may want to look into getting the book, Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets by Eric Aadhaar O'Gorman.

Isaac does not have any food allergies, so I don't have to think twice about what I throw in a blend. Your situation may be different. If you're just starting out, you may need to follow the typical "first foods" as you would with a typical six or nine month old. Once you get the hang of it and have a rough estimate of what food combinations equal the necessary caloric intake for a day, then you are on your way to limiting the amount of formula you need. Because of Isaac's growth issues, he has to receive 1300 calories in 24-hrs. We try to fit all of that in while he is awake because I can't stand over-night feeds--inevitably the medicine port pops open and feeds the bed with stomach contents (fun!), or I just can't sleep because I'm waiting for that lovely beep from the pump.

Some things to keep in mind:

-You need a high powered blender for a blended diet.
-Avocado makes blends annoyingly thick.
-Have a strainer on hand. Some people say they don't have to strain their blends. They must have magical powers or more tolerance for a beeping clogged pump, or they do bolus feeds, which would not require the use of the pump. Isaac is very attached to his pump, and doesn't believe that we are feeding him unless he is hooked up to the pump.
-I should say, consult with your doctor before doing this. Nutritionists tend to live in the dark ages, so don't be surprised if they are against a blended diet. They like numbers, so give them numbers. Write down everything you have tried, or considered putting a blend, and they can whip out their little calculator and go to town, and then they'll look up from their numbers, and say, "Just make sure you give him enough water." Done.
-I should also say, I did not consult with anyone before doing this. When I did finally tell his GI doctor, she said, "anything that makes him look this good, I'm happy with". I love her, did you know that? I knew from the start, I didn't want my child stuck on formula, and I certainly didn't want a nutritionist to tell me that, "formula ensures that Isaac is getting a complete nutrition and is meeting all of calorie, fat, and protein needs." When I have heard that (because as you can tell nutritionists and I don't get along), my response was: "So you're telling me, every two or three year old, or eight year old should be on formula all day long, every day? Do you have a child? Would you be satisfied opening a can of Pediasure and feeding that to them after you get home today--and then before bed, and then for breakfast tomorrow morning." Hmmmm...that's what I thought.
-Yes, it does take more work, and it's okay to grab your can of PediaSmart, or Pediasure, or whatever you have on hand, because some days are just too darn complicated.
-During warmer weather, you will need to keep an ice pack in your tubie's feeding bag.

Unfortunately, the whole blended diet vs. formula debate for enteral nutrition becomes this heated thing that is very similar to breastfeeding vs. formula for an infant. Though I firmly believe that breast milk is best for babies, I gained an understanding through Isaac, that there is a time and a place for formula. I didn't have that appreciation a few years ago, and I do believe I am better person for being able to accept the use of formula. Your child's medical needs may be so involved that you cannot possibly think of adding one more thing to your daily routine. I get that, and that is okay, because formula is made for those situations. You have to do what you believe is right for your family and your situation. I choose to give Isaac sixteen ounces of formula a day, and sixteen ounces of blended food--that's what I've found is doable for me, though this week I have almost completely eliminated formula from his diet, and will try to maintain that.  

We did find that once Isaac began receiving whole food through the tube, there was a marked improvement in his energy, development, skin tone, and overall appearance, and for that reason, I cannot ignore the benefit of him receiving a blended diet. Also, because I work to provide healthy foods and meals for my family, I get personal fulfillment knowing that I am feeding Isaac those prepared meals as well. Learning that he was going to have a feeding tube was extremely disheartening for me, and I compensate for that in providing him with beef stew if we have beef stew, or whatever meal that I've worked to prepare for the rest of us.

I'm still learning--if you have a child on a blended diet, what works for you?