For Those About to Nom: We Salute You
Hey friends: as promised, I would keep you posted on Nolan’s progress with the g-tube wean. First thing’s first, I have to admit that this is a major challenge, so if you’re thinking about weaning your child off a g-tube, prepare for a marathon…an uphill marathon…an uphill marathon where you’re carrying a boulder….you get the picture.
Nolan started off his feeding journey like a boss: he ate two containers of baby food each day while being supplemented by PediaSure. Then he continued to do better: he’d slowly get up to 3 containers and we sensed victory on the horizon. Then Nolan did what Nolan does best: he got stubborn. Some days he’d fight us tooth and nail when it came time to eat…then other days he’d eat like he’s never seen food in his life. So there were days he’d eat 2 containers, and one day where he ate over 4 containers. A lot of times when we sat him down to eat, he’d clamp his mouth shut like a jerk and just shake his head. Ugh.
To add to it was the struggle to maintain his calorie count so he doesn’t lose a ton of weight during this process. Weight loss is expected, but you don’t want it to get out of hand so we wanted to get him as close to 1000 calories a day as possible. This is where things got tricky, especially with the PediaSure: we started off by feeding by mouth while pumping in his formula through the tube. Problem with that is we didn’t quite know when his belly was full so he would throw up. Sometimes the PediaSure would fill him up – and he’d know it – and he would stop eating. We wanted him, then, to associate eating by mouth with being full, not necessarily the g-tube. So we’d only do tube feeds when he’s asleep for naps and at night. Otherwise it’s through the mouth.
In the midst of this hard work, it’s cool to see Nolan’s tastes coming to light. He loves the banana-mixed berry baby food and anything with mango. One of his favs, though, is this Happy Squeeze Greek Yogurt stuff:
He tears it up, which was great….until we ran out. Then we couldn’t remember where we bought it. We took to the interwebz and found out it’s in lots of places: Target, Food Lion, Harris Teeter, Wal-Mart, etc…we went to SEVERAL of those stores and struck out each time. We were freaking out: I mean he was eating other stuff, but this was his fav! We almost had to order some off amazon, but my wife finally found some at Target…and bought 2 boxes of it!
We’re going to keep pushing: we’ve been getting creative with ways to add calories to his diet. Olive oil, whipping cream, looking into Duocal…whatever it takes. The goal is to still get him off that stupid g-tube, but admittedly it’s been a frustrating process
Posted on August 25, 2014, in feeding and tagged CHD, congenital heart defect, feeding, G-Tube, g-tube wean, Happy Squeeze, HLHS, hypoplastic left heart syndrome, Razzleberry. Bookmark the permalink. Leave a comment.