My youngest son, born with CHARGE Syndrome, received his feeding tube once he was stable enough to endure the surgery at just 6 weeks of age. From that day forward, it’s been a battle. That not to say that we wouldn’t have had our battles otherwise, but it has just been a never ending, get-on-my-nerves, drive-me-crazy, issue.
Can you tell my true feelings about the tube?
Did the reasons for the tube outweigh the risks of not getting the tube? (At the time, of course we thought so but that is when we were ignorant to what having the tube would mean for our boy) Today, I don’t know, and it doesn’t matter now, but I will always ask myself if I’d make the same choice again. But that is a whole other story.
With our son now being almost 5 (weight gain has ALWAYS been a struggle) I really wanted to get him off formula. I was seeing all these great stories about blended diets and how much better the kids were doing on them. Not to mention, we couldn’t seem to get Kolt past about 28 pounds.
So with a bit of research and a crap ton of hesitation I dove in head first. It wasn’t pretty. So far, not one bit of the process has been duplicated. Each time I have spent the day blending foods, had been a different experience. And a learning one at that.
I was able to get a Vitamix blender through our nutritional department at ACH which was a huge blessing! Vitamix does offer discounts to families with certain feeding or swallowing problems.
I have a lot to learn.
Kolt’s feedings give him full nutritional value. He doesn’t require anything else. We started small by just adding in baby foods to his formula. When I began I had a few things to keep in mind.
- His total volume( per feed for a week/month)
- His calorie need (per feed for a week/month)
- His recent onset of constipation
- Because we were still using the feeding pump, the blends were going to need to be very thin.
Kolt gets roughly 6oz per feed 3 times a day. ( He is also fed overnight ) So monthly, he needs 90 feeds/ 540oz of blended meals. That’s a whole lotta food. 90 Meals takes me about 2 days to make and put away for storage.
Some of the ingredients include
- Frozen Fruits and Veggies
- Tuna, Beef Liver, Turkey
- Beans (all sorts), Lentils, Peanut Butter
- Sweet Potatoes, Wheat Pasta, Brown Rice
- Baby Rice Cereal, Quina, Flax Seed
- Avacado, EVOO
- Coconut Milk, Almond milk
- Cottage Cheese, Yogurt
- Greens, Spinach, Beets
We haven’t taken Kolt back for a weight check since we began BD, but it is obvious that he is gaining weight because it. He also seems to be more alert during the day so I hope we will see some progression in cognitive functioning as well.
So far I can tell you this about blended diets
- It’s a lot of work, but you can do it.
- It is so much more beneficial for your loved one than formula
- No one really eats like this, so this isn’t a one way or the highway kind of deal. I have been trying to save Kolt’s blends for school ( he gets 2 a day while at school) and giving him something from home after school and on weekends all of which he has done well with so far. I had found that the Vitamix really couldn’t handle such a small volume, so I purchased a Nutribullet with individual serving cups that you can blend right in and they have been working really well.
A few of the things I’ve blended on hand for him are:
- Left over lasagna
- Beef pot pie
- Eggs, biscuits, gravy, sausage, hash browns, chocolate milk
- It’s a learning process
- It gets easier over time
I’m still learning and trying to be easy on myself. It’s a big step, for both Kolt’s body and myself to take on the responsibility.
You find more tube feeding resources here.
Feel free to email me if you are needing more information about blended diets!
I just stumbled upon your site while doing a search for Scriptures on fear and I’m sitting here fighting back tears. We have a 2 year old with Down syndrome and complications from that have caused him to always be tube-fed. We recently started blending his foods and it’s been a deal here too. We can’t get him to gain weight, despite all the calorie boosters he’s getting in his feeds. But he’s just started showing an interest in chewing and swallowing, so we’re thrilled about that. I’m looking forward to going through your whole site as I get a chance. Sending hugs. I see you wrote this in 2017, so I’ll be interested in how things are going today.
I check in 2 or 3 times a year, but I’m really unable to move forward with my blog at this time. Lots have changed with my kiddos diet and I’d love to share that with you. Find me on FB!