I Love My Former Tubie!

This week is Feeding Tube Awareness Week, and although we no longer have a "tubie", we've been through it.  I'm posting this to help raise awareness of tube-fed kiddos.  There are several reasons why kids won't eat - for some it's because they don't have the oral motor skills to do so, some have severe acid reflux or gastrointestinal issues that make eating painful, some have neurological issues that cause them not to eat, and some (as in Cade's case) have severe oral aversion or swallowing issues or both.  People who don't understand what it's like to have a tube-fed kid may think that the kid just isn't hungry.  People even offered suggestions, "Have you tried __?" or "Well, if he gets hungry enough, surely he'll eat."  For tube-fed kids, it just doesn't work like that. 

When babies are born, the first thing they do is nurse or even take a bottle in their mother's arms - both pleasurable experiences for the newborn.  For micro-preemies, their first experiences in the world are breathing tubes placed down their throats.  This is followed by feeding tubes, suctioning, CPAP masks, and nasal cannulas.  They often develop oral aversions because everything that has been near their mouth is undesirable.  The last thing they want to do is put anything in it.  For Cade, he also had vocal cord paralysis due to his PDA surgery.  When he swallows, the right (working) vocal cord does not fully meet the left (paralyzed) vocal cord which can result in aspiration (food going into the lungs instead of the stomach).  He still uses sippy cups with stoppers or slow-flow nipples to avoid aspiration.


Looking back, I noticed that several of my posts revolve around our issues with feeding.  For those interested, here's a look back on our journey.

All I Want for Christmas is My G-Tube
Cade and the Adventures of His Evil Ng-Tube
Cade's Surgery
A Beautiful MESS!
Cade is EATING!
We lost something today . . .

They don't make a "I love a former tubie" so I'm posting this one.

Two Tubies - Both babies came home with ng-tubes.  Camdyn had hers for a little over a month after coming home until she started taking more volume.

Cade the night before his surgery.  I remember crying as I took this picture even though he's smiling at me.  I kept thinking that his tummy would never look like this again.  I'm sure my tears had more to do with the anxiety that I was taking my baby boy back to the hospital for another surgery than they did with the future scars he would have.

Here's a picture of what a g-tube looks like.  This is not a picture of Cade.  I found this on the internet.  I never took one of his tummy with the tube. 

Cade after surgery.

Cade after the tube came out.

Cade now with no tube.  You can see the scar on the left side.  I still plan on having a scar revision done.  Cade always looks even skinnier than he is because of the way his ribs are formed.  His ribs actually expanded when he was on the ventilator.  His bones were so pliable and fragile that the pressure from being on the high settings of the ventilator caused his rib cage to expand and form this way.  His doctor assures me that it does not affect his lung function at all.

We feel very blessed and fortunate that our journey with tube-feeding was relatively short compared to what many tube-fed kids face.  We pray for all those families who are undergoing tube surgeries, tube weaning, and feeding therapy.