We crossed the feeding tube marathon finish line!

Gabe got his feeding tube on Sept.11, 2009. That's 11 years, 7 months, and 5 days to be exact.  It was meant to be temporary to combat his reflux and get him through heart surgery. His reflux was causing his airway to swell - throw in sleep apnea and heart failure and things got complicated quickly.  His heart surgery was complicated with some ventilator and high flow requirement due to his ET tube being too large for his floppy airway. It was during this period that the developmental stage of 3-4 months kicks in and most babies lose their natural suck reflux and it becomes a learned behavior. Gabe had nothing in his mouth for over a month. With the heart complications behind us, we had to reteach Gabe how to suck, swallow, sip, eat, tolerate textures, temperatures, and tastes. The feeding experts told me in those early days that it is a marathon, not a sprint.    

I have all the feels today. Eating is still not his favorite thing to do. We still have work to do on cutting food, balancing thin liquids on a spoon, and picking up the chewing pace some. I have some hesitency - what if he has a stomach bug? what if he has a really high fever? - could he hydrate himself through it? He drank enough when he had a head cold. I can monitor him just like a typical kid. If dehydration becomes a worry, take him to the doctor. All these hypotheticals run through my head, but at the end of the day, we haven't used the tube in over 2 years. He's been taking his medicine by mouth for almost a year now. He's meeting his fluid goal. He's gaining weight and height. He's thriving....it's time. No more Infinity feeding pump alarms. No more backed up Farrel bag b/c I forgot to unclamp. No more bed full of formula b/c his line got disconnected in the middle of the night. No more carrying around a gtube replacement kit. No more trying to find sitters who will learn gtube care. No more backup plans for gtube care if we want to go out of town for a day. No more negotiations with GI on how we can motivate him to get him hungry if we are constantly pumping him with formula. No more sippy cup graveyard. No more therapy tools.  No more curious stares because his stomach looks different.  The stoma should close on it's own over the course of a month.  It's kind of like  pierced ear that closes up.  We are keeping it bandaged for a bit to help with any drainage and watching it close.  For Gabe it feels weird without it. 

 Gabe said "my belly looks like yours, and Dad's, and Alyssa's". We finished the marathon buddy. Never give up on Gabe. Gtube removed 4.16.21