Many of you know that Daniel has a feeding tube and that it’s important to me that he eats normal food anyway. I just have to blend it.
The tricks with a blenderized tube-fed diet:
1. Volume… you have to add lots of water to everything to make it runny enough to squirt through a tube. Lots of water equals meals that can get bigger than his stomach!
2. Hunger cues… when I feed him constantly all the time as much as he can possibly hold, he rarely gets hungry and regularly feels over-full. Learning to eat orally is impeded by feeling full all the time.
3. Reflux… liquid food and large volumes of it is easy to throw up or burp up or generally reflux. Daniel used to do this often on purpose and definitely developed preferences for different meals!
4. Having food available right when you need it… I pre-cook and blend a lot of foods, because some foods just don’t blend easily in small, meal-sized quantities. They stick to the side of the blender cup and that’s that. I have a baby bullet (Thank you, Robin, for the replacement!) for blending meal-sized meals out of foods that are soft.
5. Varying metabolism and gut speed… when Daniel’s metabolism slows naturally or due to stress or pain, his gut moves more slowly. His stomach doesn’t empty as fast. Nothing is as fast. And then he drops weight, because he can’t eat enough. Bummer dude.
We’re hiring a nutritionist/dietitian to review Daniel’s diet. His pediatrician wants a professional opinion about his meals and I want any suggestions she may have for weight gain. I typed this up today and am hoping for some good feedback soon. Thought other “real food tubie” friends might appreciate seeing what we do.
Daniel thin and Daniel squishy
Introduction to Daniel
Daniel is 6 years old, has Noonan Syndrome and arthrogryposis, both of which are associated with small stature and low weight curves. (Other diagnoses include low muscle tone, autism spectrum disorder, and developmental delay.) His biological parents include a very thin, petite mother and a very barrel chested, heavier father. Daniel has a feeding tube and cannot eat high VOLUME of food, so we give him a meal (pushed through his tube with a large syringe, called “bolus feeds”) 6 times per day.
Our concern is occasional weight loss. If we miss meals or if his snacks are low calorie, he drops weight, so his calorie needs are mildly difficult to meet on an average day and very challenging to meet if his gut slows down (either due to natural metabolism variability or due to pain/stress/medical treatment/anesthesia/etc.).
Physical size: 36-37” tall and 27-32 pounds. Looks much better at 30+ pounds than below 30.
He dropped a significant portion of his body weight when he could not eat sufficient volumes, due to his gut slowing down… which was related to high levels of stress and pain during 2 weeks of orthopedic treatment. (For example, he could only eat 1-4 fluid ounces per meal, including straight water, instead of his usual 4-6 fluid ounces per meal before throwing up.)
Usual schedule – assume ounces are fluid, not weight:
1. Breakfast (4-6 ounces food plus 2 ounces water)
2. Morning snack (4-6 ounces food plus 2 ounces water)
3. Lunch (~6 ounces food plus 2 ounces water)
4. Afternoon snack (4-6 ounces food plus 2 ounces water)
5. Dinner (~6 ounces food plus 2 ounces water)
6. Bedtime snack (4 ounces food plus 2 ounces water)
Total daily volume: 12 ounces water + 28-34 ounces food = 40-46 fluid ounces
Total daily fluid: Most of his blended foods can count as about 75% fluid, so 12 ounces + 21-25 ounces = 33-37 fluid ounces fluid daily.
Total daily calories: 28-34 ounces food x 30 calories/ounce = 840-1020 calories/day
Calorie goals: Daniel gains and maintains weight when he is able to eat everything I prepare… so over >1000 calories/day. More would be great, but he just can’t fit more volume so I have to be creative.
Blenderized-diet-related issues: Volume and consistency! My goal is to make his foods a minimum 30 calories per fluid ounce. It’s also a goal to have lots of carbohydrates in his diet. Both are difficult to do, since carbs are usually sticky/thick when blended and I have to add a lot of water to thin them down… which makes the volume much larger. Sugar and fat are easy to add, since oil is liquid and sugar dissolves into anything… but I try to get as much complex food in before topping up the calories with either food or sugar.
Diet restrictions: Nothing severe. He is mostly dairy free as he seems most comfortable that way.
I’ll type examples of usual meal recipes below.
Everything has to fit through that button/tube into his tummy.
Breakfast:
4-6 ounces of “Fruity Chocolate Oatmeal” plus 2 ounces of water.
Recipe is a changing-every-time combination of:
• Rice milk
• Rolled oats
• hemp seeds/chia seeds/ground flax/cacao powder
• nuts (walnuts/almonds/pecans/etc.)
• Some kind of fruit, dried or otherwise
• Some kind of sweetener (sugar, honey, homemade jam that failed to set, chocolate chips)
• Thinned to tube-feeding consistency with 100% juice (such as TreeTop Apple Juice)
30-70 calories per ounce. (I think 40 is a good average)
Lunch and Dinner
~6 fluid ounces of soup that is about 30 calories per ounce plus 2 ounces water. (~180 calories per meal)
Prepackaged options are:
Real Food Blends (any meal option) – about 30 calories/ounce
Nourish – about 40 calories/ounce
Cream of Carrot Soup
1 cups Olive oil 1920 – or butter
10 cups Sliced carrots 530
8 cups Chopped potato 928
4 cup Chopped onion 136
8 cups Chopped celery 128
3 cans Coconut milk 2250 – or 3 cups heavy whipping cream
9 cups Chicken broth 600
4 lb. Chicken breast 2992
4 tsp Ginger
4 tsp Curry Powder
4 tsp Salt
1/2 tsp Black Pepper
Total calories 9484 – 41 servings of one cup each – 230 calorie per 8 oz. (29 calories/oz.)
Blue Ribbon Chili
6 lbs. 80/20 Ground Beef 6918
4 cups Chopped onion 136
(3) 30 oz. cans Tomato Sauce 780
32 oz. Salsa 640
(8) 15.5 oz. cans beans (kidney or other) 3360
1/4 cup dried seaweed 13
2 tsp Garlic Salt
1/2 cup Chili Powder
Total calories 11847 – 48 servings of one cup each – 245 calories per 8 oz. (30 calories/oz.)
Tomato Soup
1 cup Olive Oil 1920 – or butter
4 cups Onions 136
3 cups Carrots 159
2 tsp Garlic 8
(7) 28 oz cans Diced Tomatoes 1470
2.5 lbs. Chicken 1870
6 cups Bone Broth 300
2 cans Coconut milk 1500 – or 4 cups heavy whipping cream
0.25 cup Dry seaweed 13
4 cups Chopped Spinach 28
2 cups Brown Rice (uncooked) 1368
1.5 Tbsp Dried Basil
1 Tbsp Italian Seasoning
1 Tbsp Salt
Total Calories 8798 – 36 servings of one cup each – 244 calories per 8 oz. (30 calories/oz.)
Corn Chowder
2 pounds Bacon, undrained 4400
7.5 pounds Russet potatoes 2685
4 cups Onions 136
9 cups Bone Broth 450
8 cans Creamed Corn (Kroger) 2520
4 cans Coconut Milk (Chaokoh) 3000 – or 8 cups half and half
4 cups Chopped Cabbage (or other veggie) 88
1/4 cup Dried Seaweed 13
2 1/2 Tbsp Salt
3 cups Water or broth as needed
Total calories 13292 – 48.5 servings of one cup each – 275 calories per 8 oz. (34 calories/oz.)
Creamy Chicken Rice Soup
3 cups Chopped Carrots – 156
3 cups Chopped Celery – 42
6 cups Chopped Cabbage – 126
3 cups Chopped Onion – 201
3 cups Spinach – 21
1 cup Olive Oil – 1920
12 cups water
12 cups Homemade Broth – 600
5 lbs. Chicken – 5425
3 cups Brown Rice – 1920
2 Tbsp Salt
1 tsp Pepper
1 Tbsp Parsley
1 tsp Rosemary
1 tsp Sage
4 cans Chaokoh Coconut Milk – 3000
Total calories 13411 – 46 servings of one cup each – 292 calories per 8 oz. (36.5 calories/oz.)
Creamy Chicken Rice Soup II
4 cups Chopped Carrots – 208
2 cups Chopped Celery – 28
4 cups Chopped Kale – 136
3 cups Chopped Onion – 201
3 cups Spinach – 21
1 cup Olive Oil – 1920
9 cups water
15 cups Homemade Broth – 750
5 lbs. Chicken – 5425
3 cups Quinoa (uncooked) – 2040
2 Tbsp Salt
1 tsp Pepper
1 Tbsp Parsley
1 tsp Rosemary
1 tsp Sage
4 cans Chaokoh Coconut Milk – 3000
Total calories 13729 – 43 servings of one cup each – 319 calories per 8 oz. (39.9 calories/oz.)
Snack foods
PBJ in Rice Milk – 150-210 calories per snack
• 1 slice bread or 3 Tbsp baby food cereal (bread has about 90 calories per slice vs. baby food cereal just 45 calories for this amount)
• 2 tsp homemade jam
• 2 tsp peanut butter
• Rice milk to desired consistency (1/3 cup?)
Blended leftovers – unknown caloric value
• Pancake and syrup and butter and rice milk
• Blueberry muffin and rice milk
• Banana and rice milk
• Low calorie options are applesauce based snack pouches… 70-110 calories per pouch
• Graham cracker, peanut butter, rice milk
• Baby food cereal, butter, brown sugar, rice milk (we call this “cookie in a cup”)