**If you're new to our blog, you can check the Scarlett's Story tab to learn more about Scarlett.
If you've been with us a while, you know that Scarlett has had trouble eating for a long time. For the first two months, she struggled to nurse, but was starting to get it. When the tumor was discovered and she was hospitalized, an NG tube was a necessity - when she was even able to be fed between surgeries. I tried to nurse as long as I could, but only lasted 3 months with a pump and the stress of living in the hospital. After that, she was on formula (Enfamil) by NG, but the chemo made her vomit multiple times a day. She could finally get a g-tube at about 16 months as things calmed down. A few months later, we made the choice to switch from formula (Pediasure at that point) to 100% blended food.
Feeding someone who cannot eat is challenging. It is frustrating to watch your child spit out food, drool out liquid and make a total mess with every bite. It is frustrating to be told by everyone around us that if we just gave her ____ (fill in the blank with every food imaginable), just used the magical ____ spoon/cup ("it worked for my kid - who has none of the same issues as yours."), if we were meaner, more insistent, cleaned her up better ("she thinks it's okay to make a mess."), or if we just tried harder, she would eat just fine. The fact is, after nearly 3 years of feeding this child, I have just come to understand that it will look different than others, and that's okay. One way I make it feel more normal for me is to blend her food myself; it makes me feel a little better about what she is getting, more like what I would have done if she was a "typical" kid.
Blending is not the right choice for every tube-fed person. It's good for Scarlett because:
- she has no known food allergies.
- she tolerates the food better than formula - less vomiting, better weight gain.
- she sees specialists regularly who agree she is getting what she needs from the food we make for her.
We've been blending now for more than a year with great success, so I wanted to share the process and a few details to help others who might be considering it. I know for a fact that I am not the most organized or creative when it comes to this, so there are others who might do it better; however, this plan works for us. Every kid is different, so some of what we do may be impossible for others.
Scarlett is almost 3. She weighs about 25 pounds. She is moderately active during the day - crawling, walking with the aid of a walker, climbing and cruising furniture. She eats some orally - pudding, cookies, cheerios, some string cheese - never enough for a full meal, and never a "balanced" meal. She swallows no liquids. She gets Zofran as needed with chemo, but no other medications. She gets four 8-oz. meals per day, plus whatever she wants to eat orally.
I blend once a week or so, usually on the weekend when I have the time. It takes me about an hour to blend enough for her week. We freeze everything and defrost as needed. Since our weeks are incredibly busy, it is a huge help to have a meal for her ready to go in a few minutes. We use Ball Freezer Jars in the 8 oz size. An 8 oz jar is one meal for Scarlett. These jars are plastic, so we are less concerned about them breaking. The lids are plastic and seal well for travel. They are meant to be frozen, and have a "fill to here" line, which helps me from having exploded jars in the freezer. We bought a large supply of them last year and are just starting to see cracks in a few, so I feel like they have a good lifespan. They are also available at the grocery store (near the baking supplies, with canning jars), so I can grab a pack if I need them.
We bit the bullet early on and bought a refurbished Vitamix blender. It is perfect, and I have no complaints. The company has great service - a refurbished product came with a great warranty, which we have already used (I chipped the blade somehow, and they replaced the whole canister for free.) Plus, when it's not making Scarlett's meals, it makes a mean margarita!
I do NOT use a specific calorie goal - none of the other parents I know (without tubie kids) count calories, so I refuse to. When we first went "rogue" from formula, we based her goals on being equal to the Pediasure we were giving her. However, once we got the feel for it, we just eyeball it.
|Raw materials - this time I used beets (pre-peeled and cooked, from the produce section), apples, apricots, pears and other goodies.|
|Another pre-blended layout - this time I roasted squash, sweet potato and raw beets with a little salt and olive oil before blending.|
With that said, I am pretty routine in my blends. Some people just make one blend for all meals, but I have this strange habit of making different colors to help differentiate her meals - i.e. a red, then a green, then an orange helps me to know she is getting a good variety. I get a little thrill from all the colored jars in the freezer - finding the little joys. We don't worry about separating breakfast, lunch or dinner meals - we just grab whatever is there, trying to mix up the colors within a day.
An approximate sample week of ingredients (what I just blended today, that inspired me to write this!):
1 C quinoa
1 C steel cut oats
whole grain bread
1 bunch lucinato kale
1 bag frozen, cubed butternut squash
1 can sweet potato (I usually dice and cook my own, but didn't feel like it today!)
1.5 C frozen blueberries
2 C whole milk yogurt
1 C applesauce
sunflower seed butter
Whole milk - probably close to half a gallon
coconut oil (not blended - we add at mealtimes)
We don't use meat for Scarlett's blends. If she wants to eat some, that's okay, but we don't much at home (Chris is vegetarian), so she doesn't get any either. Most everything is organic, but only as it makes cost-wise sense. If there's a good deal on conventional berries, I choose them. However, I always choose organic dairy products.
I cook the quinoa and oats together with the flax and a little salt. This is the grain base for most of my blends; I might use them separately or substitute some whole grain sliced bread. I've thrown Cheerios or cereal bars into the blender, too - anything she would have eaten can be blended!
Other food warnings: blackberries clog the tube no matter how I blend them. I blanch kale before blending, though I don't think it really makes a difference. The seeds in some breads can clog - I often have to strain these blends with a fine mesh strainer.
I mix things for color and flavor - she might taste a few bites, or at least the essence of the meal in a burp (though I can't ever make the puke taste better!). I try to mix fruits, vegetables and other ingredients, but I'm not really careful about this, since she will get a mix throughout the day. Not every meal is perfect!
An ideal blend texture for me is like a smooth...pureed soup? Slightly melted milkshake? It pours easily from the blender (though some might stick to the sides), has no chunks, seeds, or solid pieces; thinner is better, especially when freezing because it will thicken in the freezer. I add milk until it is the consistency I want. If there is any chunkiness, I reblend it - I always prefer to take the time to correct it at this stage rather than trying to feed a blend that will clog the tube! I try to avoid straining so that I keep all the good fiber and as much texture as I can.
We feed warmed blends. I am sure others go about it differently, but I just microwave jars on low power. I usually stir in some additional oil - coconut (which is solid until warmed) or olive, and that helps to thin a blend after the freezer thickens it, and adds some valuable calories.
Scarlett sits in a high chair, and we attach the extension tube under the tray so she can't pull at it. She typically eats some food orally before we start pushing anything into the tube; if she has a particularly good eating session, we give less via tube. We give 30-60 ml of water before a meal. We use 60 ml syringes to give boluses - 4 syringes full from the 8-oz. jar. Some people use a pump, but we prefer the syringe method. It takes about 15-20 minutes to give a whole meal, pausing every 20-30 ml to give her a chance to catch up. We end each meal with another 30-60 ml of water.
I can tell when she is getting full, and we sometimes stop before we have given the whole jarful. We've been puked on too many times; I'd rather get only 6 oz. in than have the full 8 oz. back in my lap.
We have done several weekend trips, and one week-long trip since Scarlett was born. Plus, each week day she eats once at school. To make all of this easier, we use the baby food pouches when we travel. I like the Plum Baby Stage 2 with grains. The pouches are easy because the syringe fits directly into the spout and sucks the food out with zero mess. The pouches are about 3 oz. volume, so we use 2 followed by some milk (the boxed Horizon or Silk Soy are great for this). It's not a long-term solution, but for a few days, it gets her through with no problem. It's much more expensive, so we try to avoid it whenever we can. The Ball jars are very securely sealed, so we often throw a few into a cooler if we know we will be able to warm them later.
I've never taken the blender anywhere - it just hasn't been a necessity for us.
I think that's the basics. Scarlett has made amazing progress since we transitioned to blended food. There are many factors to her success, but I think that real, healthy food is a major player. She "eats" better than any toddler I know. I feel better about letting her eat what she wants (or what she is willing and able to try) knowing that she is getting what I want her to have by tube.
Of course, one day I hope she will be tube-free. It would be great if we didn't have to elicit stares or strange looks when we feed her outside the house. I'd love to not need to wipe the food off the ceiling after I accidentally slip the syringe too fast, or have her tube leak on my shoes.
If you made it through this and don't have a tubie yourself, congratulations! You're ready for a great smoothie.
If you have questions about how we manage blending, you can ask questions here, or e-mail me at ScarlettGrace2010<at>gmail<dot>com.
I have to give you amazing credit. I have followed Scarlett's story since the Feb after her diagnosis, and it amazes me how you can handle it all. I am a single mom with a 3 year old, and as everyday can be hard I can't imagine the challenges you face.
Thank you for sharing the information on blending foods it was very informative...and to anyone who looks or stares at the way you feed your child...I wouldn't be too polite when telling them to go to h*ll !!!
You are doing a great fantastic job!!
(((hugs to everyone))))
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