Food Talk and Bennett Update

I know it's been a week since I last posted, but I have been so crazy tired during this first trimester. Not sure if I'm making this up, but I'm guessing there are twice the hormones with a twin pregnancy? Even if not, I am telling myself that's what it is. Or maybe I've had one too many Girl Scout cookies and the sugar is draining me. My personal favorites are the Samoas, Tagalongs, and Thin Mints - in that order. Anyone else feel me on that?

The Girl Scout cookies haven't been my only craving lately (I swear, it's just this time of year that I crave them, so thankfully January is almost over). We went to Dallas this weekend for my niece's 2nd birthday party and on our way from Austin to Dallas, I made Ross drive me through Waco to get me Taco Bueno and then after Waco, I made him stop at the famous Czech stop (obviously) for some strawberry kolaches.
One thing that Ross and I always joke about is how good of eaters we are. And then, wouldn't you know it - we give birth to a son who has a feeding tube and has no clue how to eat.

The thing with Bennett is that from the get-go, we heard "whimpy white boy." In a sense, it's a super degrading term, but in another way, it's kinda sorta applicable so it honestly doesn't bother me anymore. Bennett has never been motivated. The boy will do something when he's good and ready, but not before then. Since he was born so prematurely (25 weeks & 1 day), he never got the chance to safely learn how to suck, swallow, breathe in utero. Long story short: he needed a more permanent solution to being fed (not just an NG tube which goes down babies noses) and that's why he now has the G Tube.

He got the G Tube TWO years ago and honestly it gives me so many emotions to think about. When they placed the tube, they said, "he'll be off it in a couple months." Then a couple months came and went. Next we heard, "he'll be off it by two years old." Well, the boy is 2.5 years old and there's no end in sight.
Our Bennett in a nutshell. Wearing cowboy boots and showing off his tummy. The cloth around his button is to protect his skin from getting irritated (like his mama, he has sensitive skin).

All of that being said, a lot has changed in the last 1 of 2 years in Bennett having a feeding tube.

  1. He doesn't throw up nearly as much as he used to. Which is a huge game changer. For about a year straight, he was throwing up daily, several times. This leads me to ...
  2. He can handle a slightly higher volume than he previously was able to. In year 1 of his feeding tube, he couldn't handle 2oz of Formula in any normal amount of time. Instead we were on a continuous feed (which is exactly as it sounds) just to help him get nutrition. Now, Bennett can handle 6-8oz of blended food within a 30 minute period.
  3. Bennett previously couldn't accept texture into his mouth. He would immediately gag and throw up. Now, he will try basically anything and has even started learning how to chew. But, he still doesn't swallow 80% of his food. Therefore, it just sits in his mouth and we have to scoop it out. 
One huge silver lining is that even in the process of having him dependent on the G Tube for nutrition, Bennett successfully learned how to suck out of a straw. Y'all - he can drink by mouth! Granted, he doesn't take in as much fluid as he needs, so we still help him out by giving extra water in the tube, but it's truly an incredible thing that he mastered the straw.

Another thing: not that it really matters to me at this point what people think about Bennett's unique eating situation, but you have to admit that he looks like he knows what he's doing in that video. He looks like a perfectly normal and healthy growing baby boy. What you don't see is us scooping the chicken out of his mouth after 30 minutes of him just sucking on the flavor.

The G Tube is an absolute blessing. But the biggest frustration Ross and I have with it is simply having to do double work. It's our responsibility to offer Bennett food by mouth EVEN THOUGH we know he's likely not going to swallow it. In addition to prepping food for him to try by mouth, we also have to blend his food to go through the tube (for nutrition sake). Bennett eats what is called Real Foods Blends which is basically packaged, blended food that the DME (medical supplier) sends us every month. We add in oils and fats to make it more caloric. Then, we put the food straight from a syringe into his belly. The Real Foods Blends are actual foods which are already blended up and are specific for tube fed patients. Funny story about that: a few times back in the day, we actually fed him these blended foods by mouth because we had no clue what we were doing. And to our surprise, Bennett liked the flavor even though it sounds awful eating blended up eggs, apples, and oats together.

There are some major benefits to having the feeding tube though, I will admit. My favorite though: giving medicine is so easy AND can be done while Bennett is asleep. If he's sick and sleeping, no problem - we just open the port and insert medicine. Boom. It really doesn't get any easier than that.
The last 2.5 years of Bennett's life has been a wild ride, but also wildly joy-filled too. He is the biggest fan of Mickey Mouse, smiles so easily, gives the best kisses on the lips, is friendly to every single person, recently started talking SO MUCH, and he sleeps 12 hours straight every single night. Now tell me what could possibly be better?

1 comment

  1. Sleeping 12 hours a night totally for the win!! I love your positive attitude about this and the way you look at the perks, like giving the medicine easier. He is such a cutie pie!!