And why using formula doesn’t bother me
I have a strong belief that fed is always better than not. But I also believe that nutrition that comes directly from nature is preferred. I have been very blessed that my body produced milk for both of my children, but Maddison has almost always needed to be supplemented with formula feeding, and I’ve never been bothered by it.
A quick look at our feeding journey
Maddison is 100% tube fed. Always has been. NG, then G and now GJ. But we don’t know if she will always have to be. When Maddison was born we were able to give her breast-milk through her feeding tube, but because of her hypertonia (high muscle tone) she would eat through those calories far too quickly. Increasing her intake wasn’t an option due to her reflux, so our dietitian recommended we add powder formula to my breast milk to increase the calories.
As Maddison grew older we started to introduce a simple blended diet through her tube in addition to her formula intake.
This worked until Maddison’s swing in body tone changed to hypotonic (low muscle tone). Her motility decreased, and she just couldn’t handle the rich formula recipe we were feeding her. Her reflux and feeding spiraled out of control and she was hospitalized.
Fast forward a couple months (after my milk dried up).
Maddison is now fed a full formula diet which is concentrated to 100kcal per 100mL. I’m able to achieve this by following the recipe our dietitian gave us (basically I just add more powder to her mixture to increase the calories). She has been gaining weight, and growing well.
I’m going to start by saying that not all tube-dependant people are the same. Some are able to put all the yummy and nutritious food they want into a blender, strain it, and put it through the tube. Some people, like our family, can’t, or don’t.
But whether the tube-dependant patient is formula fed, or fed a blended diet – it’s a lot of work.
Right now there are a couple reasons why we aren’t doing a blended diet for Maddison:
- Maddison’s overall development is delayed, including her digestive tract.
- Her body is still in recovery, so infant formula is preferred because it is easier for her to digest.
- She is gaining weight with her concentrated formula, and we aren’t at a place where we are comfortable to make changes.
- I am not at a place where I am ready to start the conversation with her GI and dietitian about introducing more foods.
- Blended diets are more work: Maddison is continuously j-tube fed. This means she is fed 22 hours out of the day. With the formula we can have Maddison’s feed bag hang 8-10 hours* with an ice pack (so we do 3 bag washes a day). Blended diets of real food need to be changed and washed out every 2 hours (that would be 12 bag washes a day). That would be too much work for me right now.
*Always talk to your health care professionals about feed hang times, some formulas are different.
Grocery store analogy:
I’m not ready to take on all the extra work that goes along with feeding a fragile child a blended diet, and I don’t even know if it’s a possibility. But think of it this way:
There is a grocery store within walking distance from our house. I can drive to the grocery store, or I can walk. We all know that walking is good for us, but sometimes time just doesn’t allow us to walk to the grocery store, so we drive. Driving can be easier sometimes, but we don’t get the benefits of walking. Both options do the task of getting us to the grocery store. One may have more benefits, but the goal is to get to the grocery store. Getting to the grocery store means the child is fed, and fed is best, however you get there.
A parent feeding their child through a tube has a million and one things to do – and that’s on top of what all other parents have to do. And some children may require a special formula due to their unique medical condition. There should never be judgment on a parent whose child could be fed a blended diet, but supplements with formula. Parenting is hard, and sometimes you need a break.
Although I would love to do a blended diet
I would love to get to a place with Maddison where I could make all the food she gets from the fresh section at the grocery store. But the work is just way to daunting at this moment in time. I still don’t know when we may be able to make the switch, or what her tube-feeding journey will look like. So for now she is fed formula, and it doesn’t bother me at all. Maddison is happy, healthy, and growing, and that’s all I can ask for now.