Ok so am I the only heart dad out there whose kid (feeding tube or not) is kinda like the Borg from Star Trek? Yes…I went there. Growing up I LOVED Star Trek the Next Generation…loved it. I watched it every night before bed and watched all the movies. For those of you who are all like “Oh Lord here he goes talking about space ships and lasers and chew-tabacca,” hear me out for a moment. So in Star Trek the Borg was this alien hive mind, so to speak, who would pretty much obliterate other alien peoples and assimilate them into their hive, implanting robot parts into their body. Sorta like Pimp My Ride but with aliens…and body parts.
So where am I going with this? In Star Trek the Borg were by far the most fearsome enemy because they had powerful weapons AND they would acclimate to any weapons you threw at them. Shoot em with a phaser? Yeah it will kill 3 or 4, but then they would all acclimate and it wouldn’t work anymore. So you had to keep changing things.
Yeah, that is SO Nolan when it comes to eating. He’s like a little 20-pound Borg without the robot parts. I remember when we started this tube wean journey, he was tearing up some Banana-Mixed Berry baby food. That purple gloppity goop was his favorite, and I could get him to relatively eat the mess out of it. It became my go-to food whenever he wasn’t cooperating with something new. But then Nolan went full Borg and was like “Pfft…that don’t work on me, pops!” Then it got to the point where he flat-out refused to eat anything we gave him, even if it was like chocolate pudding or cheesecake. I mean C’MON SON, you gotta want that stuff right? Nope.
So there was a time there where we fought with him and he shook his head for everything we tried to give him. It was kinda like Star Trek First Contact (great movie, BTW). It was a struggle and sometimes you just wanted to jump out of your chair and be like:
But then…THEN something shook loose, and I honestly can’t tell you what it was. Now he’s back to eating a little better and even trying new things like crackers, mashed potatoes, peanut butter cheesecake, etc. And he’s not taking in any PediaSure at all, which is a major win. So why the change? No idea. Am I afraid he’s gonna go full Borg again…absolutely.
So tell me, Heart Parents: do you struggle with this? If so, how do you hold back the Borg invasion?
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