Feeding

This image is not usually what comes to mind when you think about food.

For the past 23 months, Ezra has been getting the bulk of his calories directly pumped into his tummy via a feeding tube.

This is what "food" looks like to Ezra.  His current regimen is a combination of two blended foods (Nutren Junior and Liquid Hope), 1/4 tsp of salt, and probiotics.  I make one day's worth of food in the morning using a formula blender.

Once Ezra transitioned from baby formula to the junior food, I was really horrified reading the ingredients list.  This is a Nestle product, and just like any of the mainstream pediatric food supplements, it somehow manages to provide kids with the necessary calories and vitamins without seeming one bit nutritious.  

So I began looking for an alternative and discovered Liquid Hope.  

Liquid Hope is medical grade food and our insurance will pay for it, so after switching supply companies (a total nightmare) we were able to try it to see how Ezra would tolerate "real" food.

This particular formulation is intended for adults and we are finding it to be too high in fiber for Ezra....which is why he's consuming a combination of both types.  Our supply company will hopefully start stocking a newly available pediatric blend made by the same company called Nourish, and when they do, we will be trying that.

Parents have the option to make their own blenderized food for a tube-fed child and I have looked into doing that.  It's something that I plan to revisit later.  Currently, having a shelf-stable food option is really convenient with all of the travel we do for Ezra's appointments.  And because Ezra's gastrointestinal system is not like ours, I'm really terrified about the consequences of experimentation.

One of my primary jobs has been making sure that we have all the tools on hand to keep daily operations running smoothly...there's always the knowledge that the things which keep Ezra fed are not readily available---which means our bedroom and basement are stocked piled with supplies.

One of the most difficult adjustments (for me) has been dealing with a home full of medical hardware and products.  Now, almost 2 years later, I don't bristle at the sight of an IV pole being a permanent fixture in our kitchen.  I'm getting better.  Although, during my last morning jog, I kept hearing (in my imagination) the beep of Ezra's feeding pump.  I look forward to a future of sharing meals with my family without tubes, cartons, and alarms.  You can join me in continued prayers for that.

xoxo