“Tubie”: Do you know what it means? Before Kimball came along, I hadn’t a clue what the term meant (a word among many I learned courtesy of my medically complex parent status). Whether you know that term because you have a child known as a “tubie” or “tubie-graduate”, or you are only now catching on to what it means because of contextual clues, this episode is meant for you.

In this solo episode, I share my intense love/hate relationship with my son’s feeding tube and give a little peek into our personal experiences with it, in all it’s convenient, hellish glory. I also share a bit of what it was like for me to exclusively pump for Kimball’s nutrition.

For comments, pictures, and the full transcript, visit the website. https://therarelifepodcast.com

TRANSCRIPT:

Madeline Cheney  

Hi, you're listening to Episode 13 of The Rare Life. I'm your host Madeline Cheney, and I have a solo episode for you today. I have chosen to give an entire episode about Kimball's feeding journey. This is actually a topic I don't love thinking about or talking about because it has been something I don't try to remember. I have a lot of hard, traumatic memories from trying to feed Kimball. He is a G-tube graduate. And he now is able to eat by mouth, which we're really excited about. At two years old, he still has his G-tube button as needed, that's for surgeries. It's also been like really helpful when Kimball is sick. So let's talk feeding tubes, both for people who can relate and have children who have been tube-fed or still are tube-fed. And for those who wonder what it's like to have a child with a feeding tube.

So, Kimball needed a feeding tube straight off, right after he was born. He never has breastfed and it took him a long time before he would take a bottle because of his nose and I've I've talked about this in previous episodes, but really quick just as a review, because he does no nose bone, his nasal airway is really restricted like he has hardly any opening in his nares (which is a fancy word for nostrils). And so before he was born, we kind of knew that that was a possibility for him to have feeding issues, because babies need to breathe through their nose while they're taking a bottle or nursing. And so that is kind of his main reason for needing a tube. Later I kind of--that's what they always blamed it on. But later I kind of suspected also that his low muscle tone had a lot to do with his inability to take a bottle because I think he just tired out really fast. And as he got bigger, and a little bit stronger and older, he was able to take a bottle really well, but I still noticed his nose didn't seem any more open, like he still had a lot of issues with his nose. And so I was like, I think that maybe more of his muscle tone. So anyway, that's kind of my suspect, but we don't really know. But I think it's a combination of his airway and his low muscle tone.

So, when he was born, he was given an OG tube, and I looked at what that stands for, and I'm not even going to read it because it jibberish it's medical stuff but it's just a feeding tube that--typically they go in through the nose called it's called an NG tube. But for Kimball, he was given an OG tube going through his mouth so just threaded in through the side of his mouth and then down his throat right into his stomach. And so that is a pretty rare thing for kids to have I think because it's less pleasant so that goes right in through your mouth and it's harder to keep in but he didn't have an NG tube because of his really narrow airway to begin with. And so he had an OG tube in the NICU....