I’m staying up late to write this. I have another hour to go until I feed my son his last meal for the day. He’s asleep, and he will sleep during the feed. It’s one of many blessings I remind myself of when I think about his feeding circumstance. Matthew is fed via g-tube.
We went 6 months after his birth trying to develop his swallowing skills since he was born with micrognathia (small, backed-up chin) and a cleft palate, among other 22q.11 Deletion Syndrome anomalies. Doctors were hopeful that he’d feed better after his jaw surgery. I pumped breastmilk like a heifer, and we used all sorts of great bottles. He was still struggling.
Finally we consented to the g-tube surgery as an add-on to some other surgeries he was having at the time. Doctors were confident he just needed some time and that he would have great success after his cleft palate repair scheduled out another 6 months.
It wasn't until he had multiple swallow studies, sometimes called “cookie swallows” that we learned he had some other swallowing issues. His cricopharyngeal sphincter (cry-coe-fair-in-jele) was supposed to open and allow food down into the esophagus. His often closes halfway through a swallow, forcing the food to get stuck or move back up the throat and into DANGER land. That’s what happens to solid food.
Liquids are worse. They have a one stop ticket to the lungs. There are flaps that are supposed to protect your windpipe or trachea when you eat and drink. “His are lazy” said one techie. I like to think of them as just not knowing any better. They could learn after all. Lazy is hard to fight. Ignorance can be tackled, and since he has low muscle tone, he might need to bulk up to get those flaps in shape.
|Matthew took photo while I fed him.|
So now we are in a long term relationship with the g-tube. Matthew may be able to develop the skills to help him swallow, there may be surgeries in the future that could help, or he might always have this extra belly button that supports his wonderful, beautiful life.
- Can be fed while sleeping
- Can be fed while sleeping in the car
- Can be fed while driving down the road (if someone else is driving)
- Can still get calories in when sick
- Making food can be fun and way healthier than what non-tubies might eat
- There are amazing communities on Facebook to offer support and advice, especially with blending foods.
- This device helps so many people survive.
- The button is quite small. It barely shows under clothing, and you don’t have to be extra careful with it.
- It’s easy to change. Avery helped me replace his last week. Check out her video.
- All food is in contact with plastic, most likely with BPA and other gross stuff
- It’s extra work making food, cleaning equipment, and feeding.
- Food squirting on ceiling, furniture, and people happen more often than not.
- Doctors often push formulas. Ugh. No thank you. Would you drink that every day?
- Most people don’t feel comfortable feeding him like this, so NO being away for more than 3 hours.
Well, it’s time to go warm up his food. On the menu tonight, we have kefir milk, regular local whole milk, avocado, carrot, swiss chard, plum, kiwi, blackberries, hamburger, whole grain cereal, coconut oil, and red palm oil. Yum.
Want to suggest something else for a meal, like something I can get at the farmer’s market? Comment below, and may God bless you all!