|Dominic trying out a gait trainer... still a little too small for it!|
Often I receive praise (very uncomfortably I might add) from people who perceive me as some sort of super-mom for feeding Dominic real food. While the sentiment is kind, the reality is they would do the same thing if they has a tube-fed child and were expected to. Just as we are all expected to feed our typically developing children good, wholesome, nutritious food, we should also be expected, taught, empowered and encouraged to feed our tube-fed children the same!
With the exception of the children who require specific diets with very close supervision due to medical complications, beginning a blended diet is not that hard. If in fact your child does have specific issues that real food would affect, I would encourage you to look high and low for a knowledgeable and supportive dietitian to guide you through, even if this means contacting the woman who literally wrote the book about blended real food (as I did in a moment of despair). Because Dominic isn't typical and his motor development isn't either, he doesn't fit into any of the pre-made growth charts pediatricians use. Thus after searching and asking in many different ways for some guidelines of feeding him, I once again took matters into my own hands and now have him followed by a dietitian from Early Childhood Intervention. All this woman does is come out once a month to weigh and measure him. We then look at his growth velocity curve and decide if he needs more or less quantity, fat, calories, etc. I then adjust that next months blend to fit that.
At the urging of our hospital dietitian, I, in the past, made complex spread sheets with everything weighed and measured out to the ounce, charting everything from calories, fat, cholesterol, sucrose, etc. per ml of blended food. I found this to be a ridiculous waste of time. My new method of following his growth velocity curve seems to be working much better for us (and is MUCH less work). As a small example, if he is gaining weight too slow, I increase his meat and coconut oil in the blend. If he needs to slow down on his growth, I substitute lean chicken breast for roast and cut down on the coconut oil and butter.
I want to give you a brief outline of how we started with Dominic in hopes of empowering you to give it a try!
Just as any typically developing child, you want to start with one food at a time to check for intolerance's. You can begin to check for intolerance's using jarred baby foods since you won't be using enough to warrant making a huge batch of real blended food. We have never used a pump for our blended foods, we bolus every feeding with a 60 ml syringe over 15-20 mins (this time got much fasted after introducing real food- less spit up issues). Some people use a pump, but this seems to be more work than it's worth. The pump could get clogged, you have to worry about the food spoiling hanging in the feeding bag for so long, and how in the world could you possibly clean all the bag and tubing to ensure safety? Some people so it. Not I. (Side note: often beginning blended foods decreases the need to feed over such a long period of time, thus making bolusing the food more practical. It also, in our case, reduced then finally stopped his spitting up and reflux). Here's how we started:
Week 1: 10 ml green beans via med port (in place of 10 mls milk)
Week 2: 10 ml green beans, 10 ml carrots (in place of 20 mls of milk)
Week 3: 10 ml green beans, 10 ml carrots, 10 ml butternut squash (in place of 30 mls milk)
..and on and on until you get a good variety of food being tolerated.
We continued along this path until we had a good amount of usable food to blend. He now receives 180 ml blended food bolused 3 x day and 180 ml cow/breast milk mixed with yogurt and prunes 3 x day. He gets all of his milk needs during his 3 milk "bottles" and gets the grunt of his nutrition during his 3 "solid meals." Please be sure to consult a pediatrician or dietitian to make sure your child's milk need is being met. We fill this need with our "milk bottles" between solid meals. We also do not feed him over night, one more thing the blended food allowed us to cut out.
PLEASE comment (or e-mail) with questions! I want to be a resource to any momma's out there to give this thing a try. I promise you'll be glad you did!