Happy feeding tube awareness week!

Isaac has had some form of a feeding tube since two days after he was born. It is a part of him now. We owe his life to his feeding tube (among other things!). We love Isaac’s feeding tube – not only do we use it to feed him, but we allow him to do cool tricks with it, like eating ice cream and opening the tube to watch it all pour out.
Initially Isaac received a feeding tube for pretty obvious reasons……… when you do not have a connected esophagus you cannot swallow – which means you have to be fed somehow. At points in his life Isaac has had two different types of feeding tubes – a GJ (feeds into the intestines) and a G (feeds into the stomach). Each serves the same purpose, nutrition. Each also has it’s own pros and cons. GJ tubes help kiddos like Isaac avoid reflux, but they also cannot simply be changed out at home. When a GJ tube comes out (and this almost always happens at the least reasonable time) it has to be replaced under the supervision of a radiologist. The beauty of a G tube is that it CAN be replaced at home when it gets yanked out, and it allows us to feed Isaac at a higher rate for a shorter period of time – more like a real person. Of course, with food going into his belly reflux is also an issue.
Feeding tube awareness week is pretty important to us – since our Isaac is a “tubie” in the truest sense of the word! Any tube can be cause for attention, particulary on a child. Isaac does get a lot of attention, both for being cute and for his accessories 🙂 It’s not always easy to have a tubie, we can’t just order him a meal at a restaurant. We have to keep up with feeding volumes, an annoying pump that clogs a lot (probably because mommy likes to blend normal foods and put them in his formula to give him some normal calories!), lots of spilled formula and the occasional spilling of stomach contents when one forgets to close the extension after giving a feed! There have been times in Isaac’s life when he was on his feeding pump 20 hours a day – for 20 hours each day he was connected to the pump and had to learn how to sit up, stand and walk with the feeding pump backpack on his back.
Even though it’s a pain, we obviously love that feeding tube. We don’t have to fight Isaac to finish his dinner, or take medicine that doesn’t take very good. As we are learning more and moving forward with Isaac we are able to blend normal foods and throw them in his tube, and we are able to do something called a “bolus” feed – feed him a lot over a short period of time – much like a normal kid.
At this point in his life Isaac is making huge strides in many areas, even though he now chooses not to eat – imagine all of the horrible things we had to do to him that revolved around his mouth early in life – a tube down his throat suctioning spit for 3 months, many intubations, many tubes down his nose and into his throat – couple that with the fact that he just wasn’t able to eat for the first year of his life, he’s come pretty far! We now have a boy that helps us connect his tube feedings and give meds, that alerts us when his tube is open and leaking, that eats pudding and ice cream and lollipops, that loves to lick any food we let him… He is a remarkable child, we say that a lot. He is also opening up doors and showing us all that a lot things that don’t seem too normal can become such a blessing in our lives.

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