“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.
"I love his feeding tube. I hate his feeding tube. But I love his feeding tube because it kept my son alive."
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.
And I pumped breast milk for him to have and I thought it was so interesting because when he was born and you know being in the NICU anyway they need you to pump milk or they can be given formula or donated milk, because you're not always there. And I actually had been planning on exclusively pumping for Kimball anyway, before we even knew anything was wrong with him. Because with Wendy, I had a heck of a time trying to breastfeed her. And I think she was tongue tied we found out later, but it was a nightmare. And long story short, I had to exclusively pump for her (well, I didn't have to, I could have given her formula but I wanted to and so we did that).
And exclusively pumping meaning just using a breast pump and giving her the milk in a bottle. So basically living on the couch pumping all day and all night. It's it's a labor of love, but ya know, I thought it was easier, and I liked it more than breastfeeding, because that was such a nightmare. So ya know, fed is best. Anyway, that was really cool; So because of that, I felt a little traumatized from like the experience with Wendy trying to breastfeed her. And so, in order to feel brave enough to have another child I had to say Okay, I can do this if I just plan on not breastfeeding and just pumping like that's how terrible my experience was. So with Kimball I had already planned on exclusively pumping so I thought that was kind of a silver lining that I had already had the experience of exclusively pumping. That made it easier for when Kimball was in the NICU. And so I felt kind of like a pro and I really do feel like that sooo awesome, such a blessing that I already had that experience because everything else was so new and so scary and so unknown. And that was something I could do with confidence because I already knew how to do that. And I really feel for other moms that are trying to adjust to everything in the NICU and figure out exclusively pumping because that in and of itself is an art and a skill. A lot of people hate it. So, you know, I understand when parents don't go that route.
Anyway, so I pumped for Kimball. And it was kind of a--it felt really meaningful to me to be able to do that for him because I felt like I had a lot of my role as a mother kind of stripped away because he was in the NICU. And so, you know, I wasn't taking care of him, like I visited him. That's kind of your, you know, and helped make decisions but that kind of is where your role as a parent, you know, hangs out with a child in the hospital because you know, nurses and doctors are taking care of your child. And so I was really happy and it was kind of this like, therapeutic thing I had to pump for him because I felt like that was something I could do for him. And something I knew that would be really helpful for him. And especially like with his medical complexities and stuff, I wanted to give him an extra little shot at life and to be just a little bit healthier with that. And so that was a really a meaningful thing for me to be able to do. It was still a huge sacrifice and a ton of work and I kind of hated it, but it was also really therapeutic to be able to do that.
And I went a little crazy with it. So because I knew what it was like to pump for a year with Wendy, and she was my first so I didn't have any other children to take care of. And I was like, I don't think I can do that for a year. But I wanted Kimball to have that for a year (the breast milk) and so I decided that when was my milk was coming in, I just pumped everything. And the lactation consultant was like, I don't recommend doing that because you might end up with like way more milk than you want. Because when you take it out, it makes more and so you're telling your body to keep making more every time you empty completely and I was like Bring it on I want all the milk I can possibly get, so I can build up a stash because I'd heard of mom's doing that. And so I was pumping 42 ounces in a 24 hour period. So moms out there who have measured milk in some way, like, that's a lot. The average that a baby will eat in a 24-hour period is 20-24 ounces and that's like once they've gotten a lot bigger than Kimball was. And he was even off feeds for half the time because of his stomach and stuff. And so that's a lot of milk. I would have like this huge pitcher in the fridge of all my milk and I would just store it in there and then every, you know 24 hours we would pour it into the freezer bags and stick that in the freezer and bring them to the hospital for Kimball and the rest we would stick in the freezer. And we bought two chest freezers, like a really big one and then a smaller one, just for my breast milk because there was so much. In fact, I will post pictures of those, of the chest freezers in the show notes because I feel like it's impressive. I like looking at them like I'm a cow, like, it's so much milk. So I was able to do what I did at six months old--I'll go back to the NICU, we'll go back to that story. But at six months old, I was able to, when he was six months old, I was able to stop pumping, which was such a relief because it was such a pain and it was really stressful. But I stopped when he was six months. And we used the stash for the rest of his first year. So when he turned one I had just run out. And so that was something I was really proud of. I felt really accomplished with that. And I loved telling people that and seeing the shock.
And I also remember that the NICU, they had a mother's pumping room and I don't--I hope they have this at every hospital, I don't know if they do, but the hospital Kimball was in, right across from the NICU they had a nice room where women could go in there and they had these really nice electric breast pumps in there and magazines and it was-- they had I have no talking policy, like no electronics and stuff so that it was just quiet and it was it was kind of an escape for me. Even though it was a sacrifice I was making for Kimball and I had to go in there every 2-3 hours to go pump, it was really nice to have like this set time that I had to go off by myself and just breathe and have a break from the NICU and kind of process, you know, what we had found out that day and the different news we would get. And so I actually really, I don't know I'm kind of fond of that memory of going in there and pumping and then being super proud because I had like all this milk to give him I think I know what it's like to also like to pump and then to not have as much as you want for your baby and I'm really grateful that that's not what I was struggling with with Kimball, (although I did with Wendy) because again, I think that would have added more stress to a really stressful situation. So with that, with the breast milk, we were able to feed it to him through his OG tube. And we also worked with some feeding therapists there to try to help him take milk by bottle because we didn't know yet if he would be able to take at least some, and he didn't do too well on that was pretty discouraging. He would take you know, probably 10 mLs And that would be this huge accomplishment, but it just was, it was a very small portion of how much he needed to eat. And we would take these like q tips, I'm trying to think of what they would be called, but they have like a little tiny sponge on the tip. And I'll put this in the show notes, we have this really cute video of Kimball, we would take it and dip it in my milk, and then we could like kind of like stick it in his mouth or let him lick it. And it was so cute. It was so cute because he really liked being able to taste milk. And it was kind of--it's kind of heartbreaking to watch that video but really sweet at the same time because, you know, my heart aches because he wasn't able to just drink milk like most babies can. But it was really sweet that he was still able to like, I don't have that experience that most babies have. He was able to taste milk and he really liked it. And that was really fun. So that was a fun thing for Juston and I to do in the NICU when a lot of things we were doing there were stressful and decision making and the getting of bad news. And so that was that's kind of one of those highlights for me at from our experience and the NICU.
So Kimball was in the NICU for only 22 days. It was kind of a sudden discharge, at least it felt I didn't like kind of out of nowhere. They were like, Do you guys like, I mean, he's doing pretty well. Do you want to just like take him home? Like he can come home tomorrow if you want and we were like, What? Like, we were so excited and so nervous to like, learn everything. But of course, we wanted him home as soon as possible. And so I feel like we really rushed through the training. So they trained us about how to do different things for his care, like his collar and stuff. And they taught us how to put in his feeding tube and how to use the feeding pump.
And for those who have not had a child or known someone with a feeding tube, it's very medical and it's a very technical and there are syringes and there's a lubricant for the tube to go down and there's taping and measuring and clamping off. To give you an idea, a few times I had my mom or mother-in-law take care of Kimball when we would go somewhere. And they would they would feed him. The notes for them was two pages typed up of like "first push this button and then do this and then rinse out this thing and then clamp that and then pull back for this", like just the steps. It's just you know, you get fast at it. But like there are a lot of technical steps and so it was really overwhelming when they were teaching us the stuff. But we were excited and we just wanted to get him home.
And so we left before we were ready, which I didn't realize till we got home and it was time for us to to be on our own and to feed Kimball. And so Kimball's feeding, like his feeding tube, and just trying to keep him fed... That was one of the most painful and challenging things that we've had with him. And that's saying something. It was really, really hard. And this is kind of--this is especially the time of life I don't love remembering and thinking about. It was very, very hard. And part of my takeaway from this episode is that we survived it despite everything And I, again, I mean, I know that people go through harder things. But like for us, like the fact that we survived this time in our life was like, looking back and like, Oh my goodness, how did we do that? And I feel really, really strong.
Kind of as a preface for this, I remember I was driving home from the hospital one day and was like--Kimball was quite a bit older, and we were driving home and I was listening to the radio, and they were talking about these people who were in prison. I don't remember like the exact context, but basically, they were on a food strike. And so they were refusing to eat but the people at the jail were like, well, we can't let them die. And so we're just going to tube feed them. And so they they shoved tubes down their nose, like to give them a an NG feeding to like these full grown adults. And then they force fed them; people had to hold them down and, you know, stick these in and stuff. And the commentary on that was like whether or not that was ethical. And they were talking about how this was a form of torture. Because they said the process is so painful and so uncomfortable, and it was against their will. And they said that it was like torture, to do that to them, when they didn't want it. And that really hit me hard. That was really hard to hear. And I know they weren't meaning it--like this was not something that was aimed at parents who've had to do that for their child. But that--I'll never forget that and that they called that torture.
And I was thinking about Kimball and in all these, you know, sweet little kids that we have to do that for to keep them alive. And I kind of felt like a monster which I know was totally twisted because I'm his mom. And I was doing that because I love him. But it kind of gave another validation to watching him suffer when we would try to feed him. And so going back to when we got home, we would have to--like his tubes would come out all the time. So in a perfect world, the tubes will stay taped to their face. And so, you know, whether it's going in their nose or their mouth, so you don't have to keep putting it in because that's like, I mean, I haven't had one but they say that's the--they don't say, I just see that. That's the worst part is when you're trying to shove this tube down their throat. And so in a perfect world, it stays put and you don't have to keep putting it back in. But in our experience, it would come out once or twice a day. And so there we were trying to struggle to shove this tube down Kimball's throat. And this tube, it literally just goes in his mouth, down his throat and into his stomach. And when they were training us, they said, Once he starts choking, you know that you've gone in the right spot and just keep pushing it down, if they are gagging and choking. Okay, so that's our cue, cool, we're doing this right because our child is gagging and choking. And then they say to take the syringe and you hook it up to the tube and you do what's called "pull back". So you pull back the plunger thing, and you're supposed to see if you get stomach fluid, and then (I hope no one's eating right now), once you get stomach fluid, you know that you've put the tube in their stomach and not their lungs, because if you put it in their lungs on accident, which you totally can, then you will fill their lungs with fluid, which as you can imagine, is really bad.
And so we would do that. We'd pull back. And, by the way, when I told my mom about that possibility she like turned all white and looked like she was gonna pass out like, Oh, it's so much pressure! And it is! It's so much pressure. And the big glitcher for Kimball is for some reason, we very rarely would be able to get any stomach fluid back on him. But like, you know, he didn't--nothing happened, luckily, but that was really stressful to be like, I'm not getting any fluid back, but I'm pretty dang sure this is his stomach, and then we just go for it. And luckily he lived and all was well. That was all in the haze of the new, you know, the first few months. And so yeah, like, needless to say, Kimball would be screaming and writhing and super upset and fighting us and one of us would have to hold him down and hold his hands down and hold his head straight or the other one tried to get the tube down. And it's kind of like watching your child get a shot, but like way worse and like all the time. Where you know, you feel like you're a traitor because they're suffering and they're looking at you like How are you letting this happen to me? but like that happened all the all the time. And so we would try to shove it down and sometimes it would curl in his mouth and not go down his throat it just kind of come out his mouth other end and we try to shove it in again. Because when he'd be screaming it kind of restrict his throat and we just be sweating and like so stressed trying to get this down as fast as possible so we could feed him. Then we'd tape it to his face.
And it was really awful. That would happen in the middle of the night. Sometimes it would slip out, anytime it could slip out. And so there were just--it's just so medical, just all of it is so medical, like you have to like work the machine and the pump and you know what buttons to push, prime the pump and rinse out the pump afterwards. And there were just--there were syringes all over the house and bits of tape and lubricant for the tubes and tubes and just our life had just become so medical from just the feeding tube alone.
Kimball would take some milk by mouth, we would give him a bottle while the feed was going, while he was being fed. And so that was trying to build up like his stamina, and help him learn to eventually just take a bottle. And so we were hopeful, we were hopeful that he could just get off the tube and just have it for a couple weeks, and then like just be able to take all of it by mouth instead through a bottle and that didn't happen. Anyway, so we would feed him by mouth with a bottle during his feeds. And when the tube would come out, and we'd be struggling to put it back in or I would just really, really not want to like this is a very unpleasant experience to do that. And so I would put it off. And I'd be like, well, maybe he can just take enough milk and not need it. And so we'd feed him and like, just really push him, which I think also caused issues later with eating because you're not supposed to force them. But I was so desperate and I would just keep pushing him and pushing him trying to get him to eat more, and he wouldn't, he would kind of fall asleep, which is a stress response and he was tired and so I'd be like, oh, maybe he'll be fine. Like he had, you know, half his feed that he's supposed to have, but you know, he fell asleep, so he must be okay. And I'd put him to bed. So that would happen and that happened to for a few days, we were just really resisting putting the tube in because we hated it so much. And we were just trying to get by with just giving him what he would take by mouth. But then we found that he was losing a lot of weight from that. And so you know, that was great. I was like, wow, I feel super guilty now like, like I'm starving our baby.
And then there's one time in particular, we just couldn't get the tube in. And we were going to a feeding therapist then. And I told them, I was like, we just have had really bad luck. Like, we just can't get the tube to go down. And I think maybe Kimball was just getting really good at like--I don't know, I don't know why it wasn't going down. It just wasn't. And so we kept trying, and it just wouldn't work. So we were at the feeding therapist, and I was like, Yeah, like, we can't get it down. Can you help me like, put it back in? And they were like, Wait, it's an OG tube? And I was like, Yeah.. And they were like, We know how to do NG, but we'd never done, we don't know how to do an OG. I was like, Oh, so what should I do? And they were like, Well, we can find out your pediatrician can. And so I think they called the pediatrician right there and asked them if they knew how and they were like, No, we don't know how to do an NG, like the whole pediatricians office. And we were like, That's weird. And they're like, Well, you could go to the emergency department because they're good at inserting tubes. And so they might know. So maybe just go to the emergency department at the hospital and see if they can do it. And were like, Are you kidding me? Like, nobody knows how to do this. And that was really scary. Because all these people that we, you know, would go to, to know this stuff. Like they didn't even know how to do it because of OGs being so rare. And so I was like, I'm not dragging my butt and my baby to the hospital because we'd already had enough of the hospital and we were going there for appointments. And it was a 30 minute drive. So I can't complain. That's not too bad, but I really didn't want to do that. And so luckily, our home health nurse who would just come in and help us at different points, we called her and she came and she was able to successfully get the tube down. And then after she did, she was like, That was my first time doing an OG tube, like they'd been trained on it, but she had never had to do it. So that you know, that was a fun adventure.
And we even tried with her, we were like, let's just try an NG because it just didn't for some reason it doesn't seem as awful. I don't know why, it's probably just as bad but we tried that and that came out quickly because he couldn't breathe and he started struggling and so we pulled that out. So that confirmed our our suspicion that that would not work.
So there are some really convenient things about a feeding tube, that I also feel like I need to like take a nod to. So it is so convenient to be able to take your baby after they wake up and you know, they're super hungry like when they're newborns and all they do is sleep and eat and then go back to bed. So Kimball would wake up, and we would have a feed ready in the feeding tube and I had like the backpack all ready to go and we would just get him out of bed. And pop him in the car and head to the library or go on a walk. Because, I remember like with Wendy, you know, you feed them and they're ready to go back to bed or like shortly thereafter, and I was like we're not going to be able to go anywhere. And so we were able to, like, just feed him through his feeding tube wherever we were, and even when we were driving, so that was really convenient.
And he had a lot of appointments for the first few months at the hospital, which was 30 minutes away. And so we would a lot of times either on our way to the appointment or on our way home, I would just have the feeding tube running. And he would be fed while I was driving. Like, I really love efficiency, and I love hacks like that. That was so cool. Like we'd come out of an appointment and be like, Oh, he needs to be fed. That's okay, I'll hook him up and he'll eat while we're driving. And then there's like that delay of like where he doesn't know he's being fed because he's not you know, getting the bottle or the breast right in his mouth. But after a few minutes of fussing then he'd realized like, Oh, I'm getting more full, and have a pacifier and stuff, so that would help. But that was like, really nice.
And then, like, while we would be on walks, we'd have the feeding pump going, and I just have it hanging on the stroller and he'd be eating and we'd be able to, you know, go on our merry way. And so like, you know, that was really nice.
And he also was able to eat while he was sleeping. So he would like be sleeping. He slept a lot. He slept extra because I think it's because of his low muscle tone. I think he just tired out easier. But um, you know, after like two or three hours, I'd be like, Oh, he should be eating and especially because of his weight-gain concerns and so I would just, I didn't do this all the time, but sometimes I would get the feeding pump all ready and then I would sneak in his room, hook him up--if the tube was able to stay in. Because you know, sometimes it come out but if it were still in him, then I could just sneak in there and screw the end of the feeding pump to his feeding tube that was coming out of his mouth and then hit run and sneak out and he would be fed while he was sleeping and he would sometimes just take a longer nap because he was fed. And that was kind of a desperation to just to have a little more time with just Wendy, or trying to pump or whatever it was. But that was a really nice I don't know if you're really supposed to do that. In fact, I think the feeding therapist told me not to do that and so I had to stop because then he does not get the natural process of like, Oh, I'm-- he was supposed to be like drinking his bottle while he was getting full from his feeding tubes that he would learn I need to suck in order to get nutrients. But I did that and that was really cool.
And it was also like--with the feeding pump and being out and about I also got a lot of stares and a lot of like, I mean, we like stuck out. Like there's this tube coming from my baby and he's eating and I think most people have seen feeding tubes or maybe even know what they are, but I definitely stuck out and my personality is such I didn't mind sticking out like, I kind of liked the idea of like, bucking off like the, you know, the stereotypes or whatever, so that's good. I think if I think it'd be hard if I hated, you know, like having attention. But I remember that in particular, we went to this work party for Juston's work and we were there and I just remember thinking like, man, Kimball's-- I just feel so different than everyone else here. We had the feeding tube, or the feeding pump in my little backpack carrier thing and I had that on my back and he was sleeping and I had like the tube hooked up to him and, and like people just, I mean they notice you know, they they notice it looks different. And so I felt very like--kind of just different.
But I also am very proud of the badge of special needs mom like I feel like the people I share that that title with are generally just awesome people so I mean I really like was, like proud to you know look different and have this medical thing and have the feeding pump and stuff and stand out. But it also just-- it also feels a little isolating because people just don't understand and they don't, you know, get it unless you seek them out. But I felt very BA, not gonna lie.
So at three month old Kimball got his G-tube and that is when they surgically make an opening in his stomach. So basically you have an opening that you can connect the tube to that will just shoot whatever they're eating into their stomachs directly. And that was a very natural decision for us. It wasn't hard to make because I knew it would make our lives and Kimball's life better and we wouldn't have to mess with sticking tubes on his throat anymore. That was really interesting because I like knew it would make everything easier but I was not expecting--They kept telling us how minor of a surgery that is. But I was unpleasantly surprised at how the recovery was. So I think it was at least two weeks of him being really sore and I mean, I assume he was sore because he was crying all the time. And you know, you have to like clean the stoma (which is the fancy word for like the surgical site like where they cut it open). And there's something also that is just kind of jarring or unpleasant about seeing this hole and your child that you opted in for. Like just seeing that, it was kind of like Oh, my baby has a hole in him, like that I told them they could cut. That was hard for a little bit and then I was like It's good for him and it's good for us like this will help. Anyway that's worth a nod to that.
And having a G-tube was just really really really, really awesome. Like once he recovered and it just bypassed his his throat and all that and we just could stick it right into his stomach. And I quickly learned how to do that. And that was so great.
So, at nine months old, I'll never forget this, I swear. In his Kimball-likeway, we were just sitting in church with my mom, visiting her. And I had this feeding backpack with us with the pump and everything. And I also had the bottle, where we would try to feed him some with that, and then the feeding pump. I was like, I'll give him his bottle first, and then I'll hook them up. So I gave him his bottle, and he drank the whole stinking thing. And I think at that point he hadn't ever eaten like more than half of it and he ate the whole thing. And I was like, How long have you been able to do this? It was so exciting. And so it was just so much like Kimball because like when he took his first steps, and when he first stood, it was like, we just happen to try, I'll just see if we can take a few steps. He just did it. And so I think he like is just chill and he's like, I guess I can, yeah, I can do that like, sure if you want me to.
And so he was able to take the whole bottle, and within one month he completely weaned off his feeding tube. He was taking all of his milk by bottle. And that was like, that was a huge weight off of our shoulders, just being able to eliminate a feeding tube and all that entails was so big. That relieved so much stress and so much pressure and just a lot of extra work like then we were able to just like take a bottle and feed it to them. That was like the best victory ever. That was so exciting.
And so in conclusion. I know I talked a lot about things that were hard, but I'm also just so grateful that I survived it, that we survived it, that we are still here to tell the tale and that things are easier. I'm also so grateful for the miracle that kept him alive because the the eerie and you know kind of shaking truth of it is that without a feeding tube and a feeding pump and that technology Kimball would have starved. And that is very chilling to think about. And it makes--I love his feeding tube. I hate his feeding tube. I love his feeding tube because it kept my son alive. And that is something that is so precious to me. And I'm so grateful to live in this time where he has all the other medical interventions but specifically, specifically the feeding pump and feeding tube and the medicine that is available to him.
And I'd also like to end with a shout out and to to all tubies and tubie parents and especially to those out there that are in this for life. Props to you.
You can follow me on Instagram at the_rare_life. On there I post updates about episodes that come out and musings about special needs parenting. If you are interested in supporting this podcast I invite you to donate on the website, the rarelifepodcast.com, or leave a review (that is awesome). Or just tell your friends about it, people who you think could benefit from it. Join us next week to hear my conversation with my awesome cousins Candace and Shawn as they share all about their son Miller with Angelman syndrome. See you then.