Cute as a Button: Tubie Awareness Day 2019

Happy Feeding Tube Awareness Week!*

Robbie got his G-Tube/G-Button and Nissen Fundoplication when he was 3 months old. I included some pictures from those days when he was throwing up 20 times a day with severe reflux, was silently aspirating, wouldn't gain weight (took him 8 weeks to get back up to birth weight and dropped off the growth chart), and doctors said scary things like Failure to Thrive and he wouldn't survive outside of the hospital without a feeding tube. We were still processing his rare diagnosis of Arthrogryposis, so this was really hard on us. He has come a looooong way since then. And, frankly, so have we.

I took these pictures to show that Robbie and his tube are amazing, and to emphasize how thankful we are for this life saving technology. Managing his G-tube is difficult and CONSTANTLY on my mind as I frequently look at the clock and set alarms to give medicine, vent (tube burp), flush (tube drink), and run his feeds 5 times a day through his pump. Or when I clean up messes when the medicine port opens and he 'feeds the bed'. Or when I wake up in the middle of the night to the sound of his pump beeping because he has rolled onto the tube and stopped the flow of formula. Or when replacing the entire button when it gets yanked out (like it has 7 times). Or when stressing about paying $536 each month just for feeding supply deliveries. Or figuring out who I can teach to use the pump so they can help occasionally babysit him--but we will ALWAYS be grateful it has allowed him to thrive, develop, and grow. And look at that sweet Button Build-A-Bear the hospital gave him after his surgery.😊 #tubieawareness #buttonbaby #cuteasabutton

*I know it was actually last week and I'm using a 2014 image because it makes me look like I'm not late, but the onesie I ordered wasn't here until yesterday so I waited to make my post. Tubie fun fact: Using onesies is easier than t-shirts because they protect the button from curious little hands that want to play with it. Onesies are less plentiful in bigger sizes, but that's a problem that can wait for a different day since he still fits the 24 month ones!