Tubie Kid!

Originally posted February 4th, 2021 -

I was asked to do a write-up about tube feeding for a Shaken Baby Awareness group and I have attached it here:

Jacob has been tube fed since he was shaken at 7 months of age.  He had a nasogastric tube for several months while receiving intense therapy with the hope that he would regain the ability to feed on his own, but he continued in a steady decline and we had his g-button placed right around the time he turned one.  The button is so much better than having that uncomfortable tube down his throat!  It takes some patience when the button is first placed to figure out what works best -- Jacob wears a split gauze pad and a fun button cover around his button every day.  We clean with mild soap and water daily and watch the area for signs of irritation, but it rarely bothers him.  Jacob is almost three now and takes all of his water, food and medication via his tube.  We use a pump to run each of his feeds slowly to keep from upsetting his tummy.  He eats every four hours throughout the day and each feed takes about an hour, and he receives 30-60ml flushes of water with a syringe throughout the day to keep him hydrated.  The feeding set-up comes with a backpack that makes it easily portable and we can just clip it on his stroller and go.  It does take a little time to get comfortable with the process of running the pump, priming the line, using the extension tube, etc., but it's a manageable process that parents shouldn't let overwhelm them.  You can do it! 

Our little guy is holding at a healthy weight and hitting his nutritional goals with tube feeding.  He smiles when he hears the beep of his pump because he knows we are about to fill him up!  Kids are fascinated with the way he gets the food right into his tummy without using his mouth and love to see his button up-close.  We are never bothered by their natural curiosity about how Jacob navigates his world and he loves the attention of other kids!  Tube feeding is a blessing for our family because it is the only way to provide the sustenance that keeps our precious boy alive and well.  It has become a normal part of our daily lives and I carry extra feeding supplies in every bag and purse like other moms carry toddler snacks!