When her 6-year-old son Jace was born, they quickly recognized how difficult it was for him to breathe. A NICU stay, rare diagnosis, several intense surgeries, and 4 years later, they welcomed their second son Emmerson to the family. Once again, they were facing difficulty breathing, a NICU stay, and surgeries all caused by the same rare condition their older son has.
In this episode, Chelsea tells these stories and share how hard it is to make big medical decisions for her children because, so little is known about the rare conditions they have. We also discuss how blindsided they were when their second was born with similar issues, and the way that emergent medical situations with her sons affect her.
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Madeline Cheney 0:00
Hi Chelsea, welcome to the show!
Chelsea Denham 0:02
Hi, thanks for having me.
Madeline Cheney 0:04
Yeah, I'm really excited to chat. I think it's such an interesting dynamic, to have both the boys with similar medical complications and, starting with Jace, after he was born and when you first start noticing anything that was going on medically, what that was like for you?
Chelsea Denham 0:25
Yeah. So I actually wanted to have my first delivery without medication. And so I went into what's called the ABC room. And so I didn't have anything hooked up to me so that I could be able to have him on my chest and have that moment that I feel like every mom really desires when they give birth, especially to their first. And there was a weird thing that happened. So hit his cord was very short, like the size of my husband's hand. Sure, it was very, very short, and they could not put him on my chest. And so I had asked to delay clamping for the cord. And they immediately said, like, Chelsea, we can't do that. Like, it's so sure I can't I can't put him on you. And so I remember him. After delivery. He was actually on the bed near my legs. And he was just blue, like grayish blue. And they were like vigorously rubbing him and he hadn't cried yet. And I remember asking, like, Is he okay? And they were like, oh, yeah, just take some time. And it was taking too long for me. You know, like, I'm no professional or medical professional. But I was like, something just doesn't see. And he let finally he let out this the weakest cry. Like it was barely even anything and everyone, you know, all the nurses were like, oh, you know, all excited. And I'm like, Okay, that didn't really seem like a scream cry that you hear. I mean, in, you've probably been there, but like you have babies, and then you hear all of the other people are having babies and the babies are screaming, you know, and you're like, Oh, I heard baby just be born or whatever. And that was not the case. And then I had to be transferred to a different room because I had some significant tearing and stuff like that. And so they they needed me to go to a different room. And my husband had him, which I question too. Like, I wish I fought a little bit harder to be like, I want him on my chest. Like Why can he not be with me? And I was away from him for 53 minutes. I remember looking at the clock because I wanted him on my chest. And I felt like I didn't have that time with him. And so my husband had him. And he said to me, like I asked them five plus times, like something just didn't seem right. Like every time he breathed in, like his whole body was shaking. And he was so squeaky and like we associate it with like a dog squeaky toy. Like that's exactly what it sounds like. And he's like, I kept asking the nurse like, what is wrong here? Like, is this is this okay? Like, is this okay? And she just kept putting it off. Like, yeah, sometimes they have mucus in their lungs, and they're just trying to clear it out like this is normal, all this stuff. And he was like, By the fifth time I was like, This is not like, I've never seen a newborn, but this just doesn't seem right to me. And then by that time, I was being wheeled back into the room. And they had already called the NICU to have someone come and check them out. Because by that point, it was kind of like, okay, someone needs to look at him.
Madeline Cheney 3:51
Wow, I just love that. Like, it was Jacob. That was like noticing that, like you felt that too, obviously, but that he was the one advocating like that because I feel like a lot of times in a lot of people's stories, right? It's the mom, but the mom get like, something's wrong and you check them out. And I think that's really tender and really awesome to picture him noticing that and feeling that even though the nurse maybe thought it was okay or just was reassuring, but like that he took that initiative and was like, No, something's wrong, especially where you couldn't be there. So I don't know. I really love that.
Chelsea Denham 4:28
Yeah, he actually took a video for me to win, we still have that video to this day, because he just felt like something was not right. And he was like, I wanted you to be able to hear him just in case they might have taken him before you came back. I could like hear and see what he was talking about. And so I do like really appreciate that because, you know, after you have a baby, everything is like spinning around, you know, and like your body literally feels like you got hit by a Mack truck. So you're just like trying out I try to do all the things. And that was not something that I was thinking of, you know, like, I thought something was kind of weird and off. But I also like worry about a lot of things. And that's kind of like in my innate nature. And so I was just trying to be in the moment, they did put him on me for a split second. And when I was trying to like nurse him, he wasn't really doing that. And I thought that was strange, because usually they're so eager, you know, when they come out to nurse, and he just didn't really have the suck that I pictured and all these things and like, I love babies. And so it was my first baby, of course, but like, I still had an understanding of what it should be like. And that just wasn't lining up with what I thought, well, that was definitely the first and foremost, like, once the NICU came, there was actually this pediatric resident in the NICU. And she had come down and she was the first person who actually that's the first time we ever heard learning of laryngomalacia. And she came over to my bedside after, you know, she checked them all out. And she was like, so I think what he has is called laryngomalacia. And it's just another word for a floppy airway floppy tissue. So he's got a lot of tissue that's loose. And that's kind of the noise that you're hearing when he's breathing. And so we were like, okay, like, I was very naive, thinking, like, everything was okay. And I don't even think the nurses really knew the extent of how severe it was. And so I was just kind of going off of what everybody else was going off of in the room, like, Oh, he's so cute, and oh, my goodness, and he'll be right back with you. And they told me that observation was six hours, and that he would be back with me. And that was that kind of thing. And so we were, like, excited. But then at the same time, I was sad, because I missed a lot. My parents were there, and they had come in and like, they both got to see him for a very short period of time. And then that was it, you know, and then they took them away. And so I was sitting baby list, you know, in my room that I had just delivered in and it was just my husband and I and I felt like, Okay, this is not what's supposed to happen.
Madeline Cheney 7:34
Yeah, like a lot of unmet expectations.
Chelsea Denham 7:38
Yeah, totally. And it was more of like, I can't believe that this is happening. And I think more of that, naive, kind of went out while I was sitting there going, like, okay, like, when is six hours gonna be over? Because they told me six hours, I wouldn't be able to have him back. And then that's what kind of this part of the story I actually don't share a whole lot. But he was in the NICU for two days. And they looked at everything and said that he was okay that he was going to just, you know, have a little bit trouble breathing. He's just going to sound really noisy. But other than that, kids with learning on Malaysia, they, they tend to be okay. They told me that 6% of babies have surgeries. And it's very unlikely. I mean, his learning in Malaysia was severe, but he was presenting himself to be okay. And so they sent us home. So he was born really, really early on a Thursday morning, and we were sent home on Saturday. And that was after we met with e and t and I remember like sitting there going like, I am not equipped for this. Like I have no idea. Like I went to school for early childhood education. I have no idea what the heck I'm doing. Like this little tiny baby. That's life depends on me. And I don't know what I'm doing. Like very noisy, and I am scared to take him home and take care of him. And so we left in the hallway home I just like cried like he was just sitting in a seat and his nose was all bloody because he had sculpt multiple times. And we got home and less than 24 hours later, he was blue and lethargic. He wasn't eating. He wasn't even like rooting on me. And that's when I called his doctor and they immediately sent us to the ER because they knew what he was born with. And the e and t when I was in the hospital, he told me like, you need to know two things. If he turns blue, this is what you do. And if he does, I want to know. And so that is what happened. And we were right back where we started. They essentially don't take dirty babies. Once you leave the NICU, you're considered a dirty baby, which is an strange term. But it means you've been outside of the walls of the NICU. And so they usually do not let you come back in, but because he was three days old, and he had severe tracheal, tug, and severe retractions, and so they immediately call a NICU and was like, Hey, we have this three day old baby. And he's like, really struggling, and his oxygen is not staying up. When we went in there, his oxygen was like, in between the 70s and 80s. Without him eating, wow. And at that point, he was starving, because he, and he was just trying to survive, really. And so I told them, like, He's choking and sputtering and turning blue. Every time I tried to nurse him, I think he's like, drowning. Like, I really it sounds like, he's like drowning. And so they were like, Okay, let's see how he eats. And I put them on, and I nursed him for like a second. And they were like, that's all we need to see. And they took him back to the NICU, where we spent another 24 days, oh, my
Madeline Cheney 11:21
gosh, how traumatizing because like, think about how different that might have been, if he were, quote, unquote, safely, you know, at the NICU, where he's being monitored, and the doctors are watching this, and the nurses and they could like, I don't know, they probably would have intervened a lot sooner, but then to have, like, where you were the one handling this at home? Like trying to decide when to go into the hospital? And you know, watching him just struggle like that. I mean, that just sounds like, I'm sure that added a lot more trauma for you than if he had just stayed there. Yeah. And they just, you know, taken care of him there. And I know doctors are so human, they were making their own judgment call, but like, Oh, I feel for you. Because that kind of emergent situation, I think is just so scary.
Chelsea Denham 12:08
Mm hmm. It was definitely, I think that was like my huge breaking point. And for my husband as well, like, it was just kind of just an overwhelming sense of like, okay, this is really serious. And clearly, like, we're missing something like they're missing something here. And this is way bigger than then what I really expected or thought. And that's kind of started to get like more serious where like, this is not just oh, he's going to be a little noisy baby and be okay. Times got a little bit harder. Like, as soon as I took us back to the NICU, we saw the EMT that we had saw two days before we left. And he said, Remember I told you, you know, 6% of kids have surgery, and that you didn't fall in that 6%. And he's like, Well, now you're falling in that 6%. And I really think that it's important that he had the surgery to open up his airway, and kind of help him to be able to eat and breathe at the same time. Because right now, his body is in fight or flight. And he's going to take breathing over eating. And so we had to decide right then and there. And my first question to the doctor was, okay, so have you ever done this type of surgery on a two week old? Because at the time we met with him and and Jace was one week old, by the time we were having the discussion of surgery, and I needed to know what what, how many times have you done this? And how many times on my little tiny baby like, you know, and he was seven pounds, 13 ounces when he was born. And now he was 610, six, eight, he was so tiny, because he was just working so hard to breathe. And he was honest, and said, I've never done the surgery on a two week old. But I have done plenty and six week goals. And their airway is somewhat similar from two weeks to six weeks. So that was always been that I had to like, go on and say like yes or no, we're going to do the surgery or we're not going to do the surgery. And of course, like as a parent, you're trying to make the best decision. But we're in a whirlwind. You just have this baby and now we're making a decision on an airway surgery, which is a huge surgery. And people don't really realize that because you don't see scars on the outside. Everything is on the inside. And so we just kind of had to pray and believe that like this was the decision that we were making, and that it was going to be the right one for him and we had a slew of people telling Unless otherwise, we should go to this doctor. And we should do this. And we should really seek a second opinion and all this stuff. Meanwhile, like, no one knew and had heard of learning of Malaysia, and this was the first time we had heard it too. And six years ago, there really wasn't a whole lot of information on learning of Malaysia. Now there's, there seems to be more thanks to social media and all of that stuff. But there was not. And we were grasping at straws and trying to pull what we kind of thought Google wasn't maybe the best decision.
Madeline Cheney 15:41
So scary. I mean, like with these rare diagnoses, because Kimball has a few of those to where, like, he has his overall syndrome was rare, but also his birth defects are rare, too. And it's like, okay, this, like super experienced surgeon, or the specialist is guessing, you know, what is best and, you know, to trust their guests, and your own guests is really scary. But at the same time, I feel like, I don't know if you feel this too, but I feel like, as time has gone on, and stuff, I've gotten, like, more used to that, like, Oh, he's guessing that yeah, that sounds about right to Yeah, let's go for it, you know, like, now that you don't value their life and you know, as much as you used to, but I think you just kind of like learn to accept at some degree, the fact that this is uncharted territory in a lot of ways, and you're gonna do the best you can, and they're doing the best they can. And hopefully, everything works out, right. Like, that's kind of just I don't know, I feel like a lot of these rare diagnoses, you just have to kind of get used to that, which is so scary. But
Chelsea Denham 16:43
yeah, and then not knowing, you know, I really like our new doctors in Tennessee, the one thing that the e and t are in our initial like, meet and greet kind of with him was he said there is not enough information on learning laryngomalacia and genetics that we know of. And so making decisions based on you know, what your boys have is very difficult because it's there's not enough the geneticists broad spectrum of learning in Malaysia and floppy tissue and trickier Malaysia and all of that he's like, there's such little information. And to them, not all of it makes sense, because sometimes it's connected to certain diagnoses. And then sometimes it's not or, you know, some other kids might have some rare disease, or they don't, or they have, you know, Down Syndrome and sometimes kids with Down Syndrome have learning in Malaysia, but you know, that it's not associated with just learning in Malaysia and tricky in Malaysia, and essentially, like, Malaysia's and so it's, it's a hard thing. And hearing that sometimes from the doctor is like, okay, like,
Madeline Cheney 18:04
No, you need to know everything, tell me what to do!
Chelsea Denham 18:07
Yes, please tell me what to do and I want you to tell me that have a diagnosis and the right answers and all this stuff. But I think through that, without having a diagnosis specifically, is like, it kind of makes you a little bit stronger as a parent when you're going through it. Because, yes, you have to put somewhat of your faith and doctors and yourself, you know, to know that you're making the right decisions as you know, individuals for your kids, but also, I think it just makes you a little bit stronger to know that, like, it's okay to not have like an actual diagnosis for an answer. Because so much in life, like sometimes we don't have answers to things and that's, that's beyond diagnosis. And we have to kind of like sit there and be okay with that. And I think knowing that and kind of coming to terms with that makes life a little bit more easier. And I'm not saying that a diagnosis is easy by any means. And, you know, we have two kids with the same diagnosis. So like that is hard in itself. You know, our first child was like, Okay, this might be a fluke thing. And we're just going to, you know, roll with the punches and kind of figure out what we need to do. And then our second was kind of like a gut punch, because we weren't expecting it. Where we were prepared. Yeah, I guess I would say it was more prepared, but I wasn't necessarily expecting that to happen. But then again, I think we come into the like, if we can do this and get through this, it only makes us stronger on the other side to then go through what we need to get through one another drama or something happens
Madeline Cheney 20:00
Yeah, absolutely. Let's jump right into that. When Emerson was born, like you said, with the same medical issues as Jace but unexpectedly so, how did that feel? What was that like, adjusting to that reality that you found yourself with?
Chelsea Denham 20:26
That one, I think was a little bit harder. So my first I felt like I was kind of being taken away the opportunity of like, being a first time mom and having all those first. And then the second time around, I felt like, the decision of having more kids was like already being made for me. And that's, you know, like, obviously, it's our decision to have more kids. But I felt like, I don't know if I can physically and emotionally handle doing this, again, because being blindsided once was a lot. And that's why, you know, we waited so long in between to try having more kids, because I didn't know if I could handle that. And what if we did have another one with the same thing? Because we didn't have answers. And then, you know, having our second it was, it was definitely more rough, I think, emotionally and just for my husband and I, like he even admittedly was like, I don't think I can do this again. Like, it's just, it is so much because like, he sees me and my keys, like you're a mess. And for good reason. Like we have to that we are now like, in this question box full of we have more questions than answers to anything. And now here we are adding more questions to this box than ever, and still not getting really any answers. And so I think the second time around, that was a little bit more hard, for sure. And there was a whole slew of things. You know, Emerson had a G two. And we had a lot of medical things attached to that. Plus, it was COVID. And like, all these things, man, this like, this on top of it was just, it was a lot.
Madeline Cheney 22:26
Yeah, and people who have heard other episodes, I'm sorry, because this will be redundant, because I said this before, but like, I think there is something to be said, for fatigue and of kind of the same heartache or the same worry, or the same trauma. Like when something keeps happening. I don't know. It's like on that same spot of our heart. And, you know, for me, like with Kimble, I feel like it kept happening over and over on the same part of my heart about Kimble, right, like, oh, no, you know, he's hospitalized again, or like, oh, my gosh, this is so hard to watch him like struggling with this, or whatever it is. And it like, I don't know, I just like you get so tired and so worn out from that, but then to have a second child with similar stuff going on. And similar things going on for you. I mean, I just, I'm in for your husband, too. I imagine that that probably just feels like you're just so much more tender there. Right? It's like almost like scar tissue or something like, Oh, I've already been wounded there so many times, like, how much more can I handle the same spot of my heart being wounded again? And again?
Chelsea Denham 23:24
Yeah, and that's definitely. And we also had a miscarriage in between our kids. And so when it when it came to kids, you know, like, in our, like, why is it that we, you know, everybody struggles, and everybody has pain, and everybody has heart ache, and everyone knows how that feels. And so like, for us, we were always like, why is it that we struggle with our children? You know, like, why is it that we can't struggle with something else? Like, why is it that it's our kids like, and even like, when our second was born, I was like, Okay, God, like, I think I don't know what you're trying to teach me here. But I'm pretty cool with you like trying to teach me something through our kids, because I'm all done. Like, I was kind of just like, this is a cruel joke at this point. And we would like to move on from it. And so that I think you're right, like those scars. It does, it feels like it's just being like you're being hit or punched, like in the same spot over and over again. And then when something happens, you know, like, right, we left the NICU and four days later, Emerson's G two fell out it had a faulty balloon and with G tubes with brand new G tubes, you're not supposed to put it back in the you know, a doctor supposed to put it back in and place it because there is things that can happen and like their stomach can literally collapse and they have to go back into surgery and do all this stuff. And of course, I like freaked out like, full on panic mode and me thinking that I got all my stuff together, like I was not I didn't have anything together. He was crying and screaming, and everything was soaked because his feed had just finished. And so everything that was in his belly was now all over. And his G tube was like sitting in the side of his pajamas, and I just panicked. And it's like, all of that all those little things that now we laugh at, you know, because JC would always he'll always remind me and be like, Mom, remember that time that I was like, oh, because he was standing right there. And he's like, Oh, that's not good. I'm like, No, it's not, you know, and the trauma of having to bring him back again, you know, he was just turned a month old, and he had multiple trips to the ER, and just all these things out, you know, you don't necessarily think of it in the moment you just get through it, you know, you're dealing with the situation at hand. But then after you're like, oh, my gosh, I cannot believe what just happened, or I cannot believe we're in this position. Again, I always say that surgeries are one of the easiest things now, going through it because you have time to prepare. And they're not I shouldn't say they're the easiest, because they are not. And I always get like so anxious, and my kids going under and all that stuff. But when there's trauma that you cannot prepare for that is, I think the worst thing, versus having something that is scheduled and prepared. And I can write and think about it and pray through it and all the things that I have the time to do, versus when there's trauma, there is no time you are thinking and you are just like actively moving and getting through it. And those things can really like sucker punch you because those are the things that we'll play over and over as a medical parent, just because those unknowns happen way too often, then, most people really realize. Yeah, I
Madeline Cheney 27:15
Yeah, I think like a lot of it too, is like you mentioned this, but it's like all the stuff that's happened before it to all kind of like it's not like you're not just dealing with the failed G Tube like you're dealing with, like all of it is I feel like it all kind of floods back into your mind. Like you said, like, oh, and and this has happened and this has happened. And And now here we are again. It's the again, right? They again, that makes it so much more intense than just it's not just an isolated hospital trip. It's all of it is in your previous childcare. I'm sure all of it just all of it combined. Because we're humans, like we're not robots, right? This is all it's all connected. And so trauma.
Chelsea Denham 27:55
You're I feel like if we were robots, because then it would just be it would be hard to get through it. But our our oldest that was kind of similar. So like he had his first surgery at two weeks old. And then we were told, it's okay, they usually have one surgery and done like they have one Supraglottic plasti surgery, and then they tend to you know, start doing better. We're like, okay, and then come four months old, he's still turning blue, and having difficulty with even gaining weight. I mean, he was so tiny, and his coloring was so off. And then we were back in the EMTs office, and he's like, Okay, we really need to consider going in and doing a second Supraglottic plasti on him. And I was like what like, happen with our odds here, like all is they're just thrown out the window like we are just if you're going to tell me that it is rare for X, Y and Z, it is going to happen to us at this point, because it's just like everything that too. And so we went in there and he was scheduled for surgery. Then next week, he had his second Supraglottic plasti, which was even more intense that when they took out a lot of tissue. And then we went and saw a second opinion because his end was just telling us like, well, we don't really know what's going on. Like usually, they're better. You know, by two years old, they're better and they're, you know, you would never know that they had learned the Malaysia and here we are. He was over two and he was still very noisy. He was still very stressed. He was still on failure to thrive because he just everything he ate, he would burn off. And so his body was working so hard to breathe, that he couldn't really sustain anything that he was eating and a kid would eat all the time. I was exhausted from trying to feed him. They even you know at five months old was Like, hey, we might want to think about possibly getting giving him a G tube if he's, you know, if he can't sustain his feeds, and it's, you know, he's burning off a ton. And I like begged, like, I was like, we have gone through so much in the first five months of his life, like, please, like, we're really working hard. And you know, hindsight is 2020, because now I wish he had it, you know, now, I wish I went back, because lack of oxygen and lack of nutrition do a lot to your brain. And I wish that I spoke up more even, you know, when he was in the NICU of saying like, no, he should come home on oxygen like this, this kid oxygen was not passed at. And just because he had a surgery does not mean it's going to be over 80. Again, you know, but I didn't know. And now we're struggling on the other side of things, him being almost six, and he just has a really hard time in some areas of school and things like that, because his brain lacked the nutrition and the oxygen when he was an infant. And so, I try not to like beat myself up for that. But like hindsight, is 2020 where I wish that like I could go back and be like, No, give them a gene to. Yeah,
Madeline Cheney 31:22
I mean, I know, we kind of previously talked about this, and we're like off the hook. But that guilt that you can feel, I think there's just I don't know, I know, mom guilt is totally a thing, just in general with parenting. But like, I guess it's just these really big calls that you're you have to make, right? Like and you don't know, you don't know what's best. And you know, again, the doctors don't always know either. And so that responsibility that we feel, to make the right choices and the right calls. And then like you're talking about, like the guilt when you realize, Oh, dang, I should have done this other thing. I think it's the worst. And I guess so like, as a wrap up question. What would you like to say to a listener who may be sitting here being like, oh, yeah, I totally feel you on that. I feel so guilty about XYZ, too, because I should have done this, instead of that, and I know better. Now, what would you like to leave with that? That listener
Chelsea Denham 32:22
I would just say to like, give yourself grace, in the moment of like making decisions, because it's not an easy thing to make a decision for your medically complex kiddos. And so the decision that you make as a parent, regardless of anything, or regardless of what people say, or what some people might, you know, think you know, your child the best. And so the decision that you make for your child, is the best thing for them. And there is something to be said about mom, gut, and mom intuition. And so, you know, when you start to beat yourself up over things, it's that that grace that you really need to take for yourself. I think sometimes as medical parents, we tend to give more grace to others, and we give to ourselves. And sometimes we're even guilty of giving more grace to doctors than ourselves. And we are with them, way more than anyone. And so I think just allowing yourself that space, and that time to be kind of frustrated with maybe the decisions that you've made that you're like, oh, shoot, I wish I didn't do that. And to give yourself so much grace and patience when making those because truthfully, we're all just we're all trying to make the best decisions with what little information that we have. And no one can tell you, you're not doing a good job, or you've made this bad choice. And so now you have to deal with it. Like that is not something that would ever feel good to sit in as a parent. And I think we beat ourselves up enough, honestly, on the day to day things, that allowing ourselves to just have that moment of, you know what, I did do a good job, and I'm so thankful that I did and that I had the courage to say, Yeah, this is what we're going to do and no, I don't want to do that, or vice versa. And so I think honestly, that would be the biggest thing just to give yourself grace and love because we're all trying to make the best decisions for our kids.
Madeline Cheney 34:48
Yeah, I really like that, And recognizing how difficult the situation is and like well you did it you made a call even if like you regret it now or you know, whatever because he'd like no better because you know, hindsight, is 2020 But like, you still stepped up to the challenge to research into you know, really consider it and to make the call like that was a difficult call to make. Yeah, I really liked that. Well, thank you so much, Chelsea. I'm so excited to share this conversation and it's so relatable all the stuff we talked about is so relatable. So thank you so much.
Oct 27 2022, 1:25pm
And now I realise why babies are considered "dirty" when they leave the NICU - that the NICU is a very sterile environment by design.
I came here from the Nora Project - and Nora Notes Blog mentioned you in "five to know; avoid and grow". #therarelifepodcast