S3/E25- Parent Stories: Marnie, part 1

In the first of three conversations, Marnie from Colorado opens her heart to share memories of her daughter, Joey—the devastating medical diagnosis, countless hospital visits, and the daily fight to keep her alive, as well as the laughter, adventures, and everyday moments that filled their life with love. Recorded in a cozy coffeehouse, this episode invites you to see Joey through her mother’s eyes, before the tragedy that changed everything.

Transcript

Bruce: 0:35

Welcome to Don't Forget to Breathe. I'm your host, Bruce Barker. At the start of the season, I shared that I'd be inviting parents onto the podcast to tell their stories of loss and grief. Today we start that journey. This is the first episode where a parent speaks in their own words about what they've been through. My first guest is Marnie from Colorado. In this first of three episodes, Marnie introduces us to her daughter, Joey. You'll get to know a little bit about their life together before Joey's tragic death. We met at a local coffee house to record, so you might hear the hum of espresso machines and voices and clinking cups in the background. I invite you to listen beyond those noises and into Marnie's heartfelt story.

Marnie: 1:25

So my story about grief is more than just the loss of my daughter. Loss of being her caretaker, how I identify when I talk about her tragic life that was beautiful, and she took everyone she met along the journey of her story. Everything in pregnancy was normal, tests, ultrasounds, um, every step until she was born. I was 30 years old. I knew what to expect being a new mom because I have four other daughters. So brought her home from the hospital, her sleeping habits, feeding amounts. I knew all the stuff that was supposed to happen, and I was surprised that those all weren't true for her. She was sleeping a lot, which at the time I think you can go back and go, oh hey, that was a red flag. But it was comfortable because I'm like, oh, how relaxing for me with the other girls and stuff. But the feedings were so small. I mean, like it was like an ounce or two every six hours, which is not a lot. And all that to say that, you know, nine days later, I had one of my daughters holding her, and I was making dinner or doing something, and I kind of looked over, and she was like kind of squished up in a little like you know, when you have a little kid holding another baby, you know, a little kid, she's kind of squished up, and and I thought, God, you're squishing her, she can't breathe. And there, you know, this labored breathing, and I thought, well, that's weird. Maybe you know what? Maybe I better call the nurse. I'm not gonna get crazy, but I'm gonna call the pediatric care line or whatever for my doctor. And in the next 24 hours, nothing, nothing would ever be the same from that. I mean, I called, they I described what was going on. She had me start counting how many times she was taking a breath, you know. Um, and then after that 30 seconds or whatever, she proceeded to put me on hold, and then she needed to figure out what the doctor said if we needed to come in. And all this, you know, the year 2000. My husband's at work at the time. Three of the daughters were at home with me. You know, we lived about three blocks from the fire station. And while I was on hold, I heard I heard the sirens. I didn't think that the nurse, you know, I didn't know what to do. You didn't know they were coming to the house. I didn't know I didn't know. Um, but she on my behalf, then she um came back from hold to tell me they were coming and they were gonna take us to children's hospital. And I was like, so everything just slowed down. And I thought, well, what am I getting? How am I doing? Okay, so I called my mom. She lived fairly close, and I said, You've got it, can't tell you the story. I don't know the story. You need to come take care of these other kids. And I'm getting in an ambulance with Joey. Like, I'm gonna, you know, they I'm just sitting on the bed in the ambulance and holding her. And they're putting oxygen on, and they're, you know, trying to do all these little trying to get an IV started, and and we're just and the the drive was chaotic. It was, you know, you're just trying to sit still and hold the baby because they didn't have any other way to do this. We get there, we're in a um a room in the emergency department, and I don't know. Maybe my mom called my husband. Anyway, he showed up from work and all these tests are happening, you know, x-rays and blood tests, and all of a sudden a cardiologist pulled us out of the room and had a standing in the hallway and said, he said, you know, your your daughter's heart is enlarged. Um, and there's some issues going on. Um, it's like ginormous, you know. We we think that there's we're not exactly sure everything that's going on. You know, we're just standing there looking at him. My husband is now crying, and I ask, Well, is she gonna be sick forever? Like, what's gonna happen? You know, like I needed to know what was where was what what were we gonna do here? Um, and he said, She'll either live or die, but she will never be sick. That was his exact statement. Exactly. Um, he still works for the hospital at children's. Wow. And I just remember I'm thinking, even if if you're a new doctor or you didn't know, I mean, it was just the worst statement to hear, because then that's how I did the rest of her 21 years. As I'm like, oh well, she'll she's not gonna be sick, but what does that mean?

Bruce: 5:40

So it's just a black and white, live or die. Um was this like when you from the moment you were on the phone with uh with the nurse and then the ambulance coming, arriving at the hospital. Is this just some like crazy little dream? Like you're like a is it just a swirl, or are you like you're locked in and you know exactly what's going on?

Marnie: 6:04

Um there's definitely moments, right? So my brain locks in on the the one daughter holding her. That moment exactly sticks in my mind, and then the ambulance ride. But there's so many like blackout parts, you know, it's kind of like life where you're you're remembering these impactful moments, but then forgetting everything else. And after they um took her to a room in the in the NICU at the child at children's to figure out what was next, I think I went into to a fight or flight kind of for the rest of my for the rest of the tw next 21 years. I just survived. And my brain shut down to anything else that could kind of like anything else that could hurt me, or I just needed to protect myself, whatever that meant.

Bruce: 6:56

Um kind of like a tunnel vision or something. Like there's just nothing outside that tunnel.

Marnie: 7:01

Yeah. And it was keep her alive. You that is your only job in this world is to keep your daughter alive. You gotta do it, you know?

Bruce: 7:11

Which for every parent is your is the keep your daughter and your your son alive. But in your case, you had everything stacked against you. So what it sounds like to me is that something is trying to take her life that you're you're fending off. So it's not like you know, you let them go outside and play and and something may or may not happen. And you know, so we're we're certainly the protectors as parents, but in your case, that was amped up to like a single solid focus that there is something that's almost actively trying to take her life. And you're is am I getting that right?

Marnie: 7:47

Yeah, yeah. I I'm just um kind of picturing, I mean, the rest of my girls like you never know. I mean, they're they're out living their life, you know. You just because you you just try and be in the moment and live life with them. But with with Joey, you're I we're just continually getting to that next thing and keeping her alive to the next thing and keeping her alive to the next. And there was just moments of like, ah, I just love this instant, you know, we another successful surgery or another new whatever, and but it was just never enough, and it just never felt safe enough. Yeah, you know. I I remember walking out of the NICU, and I hadn't even called my mom to update her or anything. I just walked through the hospital, and obviously this is way back in 2000, so I was like, I need to call my friend. My friend lives in Nebraska, but you know, she's still my best friend, and I go down to the payphone, call her up, and then I lose my mind. I just let it go. I mean, I just was bawling, and she's like, What is you know, she and she thought that what are you talking about? There's an accident. I'm like, no, no, no accident. Like something's wrong. Like, and she is a NICU nurse in Omaha. And so um, I just I'm like, fit, fix it, help me fix her. Like, I just I knew nobody else. I mean, I obviously I knew she couldn't, but there was that like parent mom to mom kind of, you know, what would you do? What should I do? What what's the answers? If I tell you what they say is wrong, can you help me navigate through this? And she got on a flight that next day, flew out. I mean, there's still nothing that anyone could do, but I needed advice. And uh, and I knew that there was gonna be, even if, even if there was something tiny wrong with her, okay, because we still didn't know the whole story. What was gonna like what was next?

Bruce: 9:46

Yeah, like with yeah, yeah. Because that was just day one.

Marnie: 9:50

Yeah, yeah. Just within a few hours. And so what did that look like? That was like now what? Yep, yep. What did that look like? And and you come, you come back to like financially, what's that gonna be like? The other kids, how am I gonna how am I gonna do that and stay at the hospital? Who who's now gonna jump in that role? It was so confusing. It felt like I was drowning, you know what I mean, instantly. Um because I it was harder to research those kind of things. You you just know that when you talk to a doctor, or at least you think you do, that they know the answers, that they're they're smarter, that they aren't just risking stuff, that they're not gonna just try and figure it out that they know. But it's always been any surgery that she's had moving forward, they have come out of the surgery going, you know, she's just built a little bit different. There was just a little bit. So you look at this mold of of how a heart's supposed to look. Hers was just a little bit different when we got in there. Or that artery was a little bit smaller than we thought. Or we couldn't do exactly what we wanted because it wasn't the it wasn't agreeing with us while we were there. I mean, all those things, not so much excuses. To me, it felt like there was excuses. Maybe it was mistakes, who knows? But there was always more to the story. And as a parent, getting that word out that you gotta, I mean, and and it's so easy nowadays, just do your research, just get a second opinion, just advocate for your for yourself, for your kid. Because maybe it didn't need to go that way. I think I just we needed it to be fixed, and we didn't know that there was other resources out there. And I I think there gets to be a point where you're just like, do something.

Bruce: 11:40

Can I ask you what was a diagnosis? What did they say? Hey, this is you know, this is this disease, this is this, you know, what like what is uh disease, uh uh abnormality, like what did they say? Like, hey, here's what's what we have diagnosed is not right with your daughter's body.

Marnie: 12:03

So um, so after all the tests, the blood tests, all that stuff, they said that she has um a VSD, which is a ventricular septal defect in her lower chamber. Uh it gets the blood gets pumped back into her lungs instead of her body, an aortic stenosis and a coartation of the aorta, which is narrowing in the aortic valve that leaves the heart and delivers the oxygenated blood to the rest of the body. Associated, it's all associated because she has the VSD, which is the hole between the left and right ventricle. So they, you know, it's congenital heart disease disease. They they started off by saying that they could fix the one thing in what's easy to fix, right? The VSD seemed to be the easiest thing, which is the hole, pretty big hole between on the bottom chambers of her heart. Um, but they needed her to be stable before they need before they could do anything. They needed her to be stable enough because she was in a bad place when we got her there, you know, because she was had not been eating right, um, and she was not breathing right, and she so she wasn't getting oxygen. So they needed to put her on some kind of uh medication, you know, give her a blood transfusion because her blood was getting all it, it just wasn't getting through her body. So they said, well, you know, um, if if you wanna if you want to reach out and get her baptized, or if you want to have um grief people come up, or if you want to have somebody to talk to, we recommend that because we don't know. She's awfully small, um, and it's really hard to do these kind of surgeries or these procedures on a baby this small.

Bruce: 13:36

So they're prepared, they're wanting you to prepare for her to die. To die. So she's how many days old?

Marnie: 13:43

Nine. Yeah. So we had, you know, I I've never had any of my kids um baptized. I just figured you when you grow up, you just decide if that's something you want to do. So we we decided, yeah, we'll do that. And we, you know, we had the the church chaplain and come in and you know, just sit by her. And and that was that was surreal. I mean, I I I can picture being in that room and watching that happen and and not thinking it was ever gonna happen. Like, that's crazy. We'll just do this as precaution, like it's not gonna happen. But in the back of my mind, always thinking that it is probably gonna happen and in a surgery, you know, that's how that has to be the way that's gonna happen.

Bruce: 14:21

Okay, yeah.

Marnie: 14:22

Um, so uh I think it was day 11. So they had to wait two days, then they took her in, open heart surgery, and they um place a patch. So, I mean, it was like a thin little patch in there between the two. Um, and that's the only thing they could they could fix. That's the first, you know, when they start. She comes out of surgery, and we had been just waiting in the intensive care, like waiting room. We finally get the word, everything, you know, she's stable, she's in the NICU. We should just let them do their work, hook her up to stuff, get everything going. She's on oxygen, all that, or still has a breathing tube in all that stuff. So they're like, why don't you guys go take a break, go down to the cafeteria, get some coffee, whatever, and then come back up in an hour, hour and a half, um, and you can see her. Okay, so we hadn't seen her yet. We go downstairs, we're like, oh, shoo, what a relief, you know. I mean, I can't even tell you how long that surgery was, don't remember. But we're downstairs, and kid you not, over the loudspeaker, they said, Can the parents of of Joey come back up to the NICU? And we're like, it was almost like the white paging phone from the airport, you know, you're like, what? And we took the stairs. We were running, right? Running, running, running. And we get up there, and it was like um to get into the NICU, there was like these doors that you have to go through security because you have to be scrubbed in, right? So we're standing at those doors, and then there's like windows you can see in, and we're washing our hands, and people are standing around, and there's probably 10 doctors and nurses standing around, and she's in the bucket. They it looks like a little bucket, it's not even really a bed, that's how small you know these things are. And so we're like, Oh, we got to get in. We're you know, we're her parents and stuff. And so then we walk into that door area, the door shuts behind us, and all of a sudden, this lady comes up from the side. I'm trying to get to her, and she grabs me and she's like, I'm a grief counselor, I need to talk to you and over here. And I'm like, No, I will not talk to you. Do not talk to me, don't look at me. I was like mad. I'm like yelling at this lady. No, no, I'm not doing it. And uh then all of a sudden a nurse turns around and she's sobbing. And I'm like, so what had what had happened was she went into cardiac arrest and the doctor yanks open the fresh closed wound of her baby little heart, right? Opens it up and has to like massage her back to life, right? So as we're walking up, they have now have a like um, it's almost like a protective little patch over that because they cannot close it now because it's so in inflamed and swollen and and so they have to leave it open. And you can see her heart beating in there. You're like looking at her looking at it. And the doctor looks at me and he's like, I don't know what happened. I don't know, she just she just was trying to give up and I wasn't gonna let that happen. And and it's just a shock. And I'm like, what's happening? Right? Yeah, and so I'm like, okay, all right, yeah, yeah. So now what? And he's like, Well, we're just gonna watch her for the next, you know, 36 hours. This is gonna be the the rough part. And I'm like, okay, the rough part, the rough part, right? So he stood by her bedside for 36 hours eating crackers, just like he he didn't even leave. I mean, maybe maybe there was a spot that he'd go step aside, but the whole time he needed to be there because he didn't know if it was gonna happen again. He was so dedicated, and um, I I felt comfortable in that. So maybe that the next night when we finally decided to go sleep, they had a room for parents at the hospital. You go in there, lay down there, like, we'll come get you if anything changes. Yeah, if anything's weird, we're like, okay, finally fall asleep. Of course, doctor comes, knocks on the door. We need you. They're putting her on dialysis, her kidneys are shutting down. I'm like, What, but why is that? But what does that mean? Like, I don't know. Is that bad? I don't know. He's like, it's it's it's we're just helping her. Like her organs are having a hard time. We're gonna just help her. Is that okay that we do that? I'm like, yeah, okay, yeah, do that. Let's do that. I mean, do anything. Do anything to keep her alive. And saying those words right now, I don't know if that's the right thing because I did those exact words for 21 years. I'd do anything to keep her alive. Good, bad, whatever. I will do anything. And, you know, it took probably three, I'm thinking it was around three months before we could take her home from the hospital. Because in between all of that, you know, they they finally ended up pulling all that skin over and stapling it, um, closed. Yeah. Um, and then one of the nurses over gave her some medication and that put her back into a weird rhythm. And then they were like, we don't know, we're now we don't know what we're gonna do. Finally, we got stable enough, they put her in a nip a different area of the hospital. Then they noticed that she wasn't gonna keep any of her feedings down because she was uh yeah, for being put under breathing tube. The breathing tube. So from having that taken out in out and inflamed it so much that it was making it hard for her to keep feedings down. So even if they tried to like just not even feed her from the bottle, but from the nose, she was gagging so much that she was pushing that out. And so then they went in and they tied the top of her soffice shut, right? So that nothing would come out. It's food would go in, but it wouldn't come back out. It's called a nissin. And then they ended up putting a G tube. So that's how we were feeding her for the next two years. Now, she I mean, she got to an age around one that she would start to put things in her mouth and kind of keep them in there, like but we'd always have to have that for um to keep the nutrients and stuff and keep her because she was skinny tiny skinny baby just because it was so hard to keep all that stuff, you know. It was a continuous 22-hour a day pump that we carried around with us everywhere we went. And I remember people coming up going, hey, is that oxygen? But clearly it's going right to her stomach, but I mean, I get the questions, you know. So there was some just so it was so happy to have her, but it was so overwhelming every day, feeling like I was just keeping her alive. I mean, I had a schedule of medications and I just listed them all over the counters and the the cabinets, and it said what time, and I put them in little um syringes because they were labeled out into the refrigerator, and um, you know, when the doctor's appointments because they were weekly, and then you had the cardiologist appointment besides the regular pediatricians, and then um the the feeding, and then the food, the specific food was so expensive. And then they went through the feeding tube. Yeah, yeah. And I forgot that I was still a mom to these other kids, and then turning around and I'm like, um, you know, one of the one of my daughters was just like in her room all the time, and she was nine. I'm thinking, what's I mean, she's being good. She's just she was depressed. She she literally at age nine was so depressed that you know, and I never saw, I mean, I don't remember it. Just like that's a part, that part is a blur, but she wasn't coming out of her room and she wasn't engaging, and I think she was maybe worried, but you know, you don't know how to really talk about it, and yeah, and we weren't all having those conversations because it was scary, it was scary for everybody. And then she ended up getting put on some medication for depression, and there was just so much else going on, and I was blinded. I had blinders on. I'm gonna keep Joey alive.

Bruce: 22:04

How many surgeries did she wind up having?

Marnie: 22:07

She had 51.

Bruce: 22:09

My God.

Marnie: 22:10

51 surgeries.

Bruce: 22:11

Um 51 times she's under general anesthesia?

Marnie: 22:15

Yes.

Bruce: 22:16

Wow.

Marnie: 22:17

So yeah, so over the period of 7,848 days, I had her. She died five times, including that that first time she went under into cardiac arrest. And I witnessed three of those with my own eyes in front of me within a period of five months at the hospital in Nebraska, um, in in the year 2021. And it was it was so frightening just to see, I mean, if anybody's ever, you know, to watch as you're because there was different things with all three of those that I witnessed happening where you just don't know where where your place is. You know, you know you're pushing a button because you know, cardiac arrest, and you push the button on the wall because me and her were the only ones in the room, and then doctors come in, and then a nurse pulls me and I'm screaming, and nurse pulls me aside, and she's like, Oh, I'm so sorry, your mom's gonna be fine. I'm like, My mom? No, my my daughter's in there. Oh my gosh, you know, just I nobody expects it to be a kid, a 20-year-old kid. There was so many unanswered questions, so many times I didn't ask questions. If you don't know, find out. If you you know, find out why is what is this, is this the only medication she can be put on? Hey, it's super um toxic for your body to be put on this medication, but it's really the only thing that we have. What? Just those those things that you don't know. As soon as she turned 18, she didn't necessarily have to have a surgery again until she was 20. Then the decisions were hers, right? And and I'm not I'm not mad at her. I'm mad that that I wasn't in control anymore. And would it have been different? Would it have been fair? Would it have been what I wanted? I I'm not exactly sure.

Bruce: 24:15

Yeah. When she turned 18 and then her medical treatment became her choice? Um is that what you mean?

Marnie: 24:22

Yeah. So so once she turned 18, obviously, that it it is she's an adult, so it is her choice. She would she would ask for help. We we still had insurance for her because we had to use a buy-in program along with our own health and you know, like my own insurance through my work. It was a buy-in program that we had to pay that way, it would pay for all the other things. Because it, you know, we're into millions and millions of dollars, right? Over the course of her time. So she she would take her medication. She wasn't vigilant about getting her regular tests done. And she, right before she graduated high school, she had had a defibulator, because so she had a pacemaker when she was eight. She had her first pacemaker put in. And then they took that out and replaced it with a defibulator one that would shock her heart intense. So it would actually do all that stuff by itself if if her heart decided to stop. So it was a little bit more intense. So she knew she had to be on medications. Now she was after graduation, she decided to stay with uh one of my older daughters for I don't know, I think it was about six months. She wanted to just kind of leave home, right? And see what that felt like. So she went up to Loveland and stayed with her sister. And mind you, her sister's early 30s, early 30s, and super like she like this is the mom of the family, right? And she um she was very, very protective and you know, hey, you need to be really good about washing your hands. You need to, you know what I mean? So so she was keeping keeping Joey on a really good path. Like, hey, you know, please, please take care of yourself. Please be careful, don't stay up late, you know, get some sleep. So then Joey decided to come back home. And I think, you know, she just wanted to be an adult, but didn't ever know where she was supposed to fit in and how she was supposed to feel and how she was supposed to take over because we were all on her, right? And then in a way that we just wanted to help her. We wanted her to survive, right? So we weren't letting her make those mistakes and those choices. Um, so then she came back home for a little while, and then she's like, you know what? I think I'm gonna go live with my dad in Nebraska, Iowa. Let me let me try that for a little bit. And that lasted three months. Um, and she's like, maybe I should go back, maybe I should go to college. Maybe, you know, she wanted to try all these things, but if you don't have the support and somebody letting, and that that's that's uh bad on me as well, because it's it's hard to relinquish all of that and go, here's all your pills, good luck, like fill them on your own, get some help. It's it's a big thing.

Bruce: 26:59

But at the same time, trying to respect that she is trying to do some adulting like any anyone that age would try to do. So you mentioned the like the defibulator thing. So is she hooked up to something this whole time that when you know where she's like can go here and there and everywhere? Does she or is it just totally remote?

Marnie: 27:20

No, yeah. So um back when she had that implanted, um, the the one that she got when she was eight, it came with like a little phone cradle that you so we had to have a landline. So that you and you held this thing up and it would take all that data and then it would send it over to the cardiologist at children's and then it would say, Hey, everything looks good, or hey, there's been some evidence of a couple of disturbances or some irregular beats that we've noticed. We need to check. So it was just a a magnet that went around there and that would check. But then when she got the defibrillator, she would have to go in and have that checked. I think it was every three months, where they would kind of like do that same kind of test. But since it was a defibrillator, it wasn't as um intense, right? Where you would have to go in because this thing is is in her underneath. And when she got it put in, the doctor's like, hey, you know, she she's she's always had it right on her left side above her heart, and it's big, right? Or it was bigger. Where it would you could almost see the square box, you know, on her little, you know, because everything else was, I don't know, she just had a different frame anyway, small frame. And they're like, hey, we do this new thing now where we put it underneath her arm. And I'm like, oh, okay. Well, I mean, her being a 15-year-old kid, she probably wants it underneath her arm instead of right on top of her chest. So I'm like, yeah, let's do that. They because they asked me, it was my, I mean, not necessarily my choice. I'm like, Joey, is that something you want? And she's like, Yeah, under my arm, perfect. A little box under my arm, cool. Go in, they do the surgery because they're replacing the battery, giving her to the new, the new machine. And then they come out and they're like, you know, it was all good and stuff. And then we put her arm down after we put it in there, and it made the wires come out. And I'm like, What? Yeah. I'm like, oh, okay. She's like, so we're gonna have to put her back under and we're gonna have to fix it tomorrow. I'm like, tomorrow? Oh, okay. And so, you know, the whole family's sitting out in the waiting room again. I'm like, hey guys, like this is what she said. They're gonna have to, and they're like, Oh, that's that's awful. Why does this always happen, right? Things like this. So they take her back in, they they hook up all the stuff, they're like, it looks good. We put her arm down that worked really good. Take her out, do something else with her arm, does it again? And then they come out to us and they're like, Again, we're gonna do this again. We can actually take her back today, but this is what we're gonna have to do. We're gonna have to take it out from underneath her arm, put it back on the top, right? Put it on top, put it back where it was, but she'll just have to have it there. I'm like, geez, how was that even an option? Why why did we what just happened? So she she wakes up and she's of course, yeah. I mean, she knew in between that she was doing that. I mean, it wasn't like she was out the whole time, but she wakes up and she looks at me, she's like, We're never doing this again. I'm like, like this surgery? Or she's like, No, we're I'm never having surgery again. I'm like, um uh, okay. Like, all right. I'm just thinking, does she really know what that means or not? Or I mean, I get I've had surgery and it's awful. And That that whole waking up and being sore and all that stuff. And the nurses. And I'm like, okay. Once she fully woke up, she's was crying and she's like, I'm miserable. But this kid never wanted to have pain medicine. She never. She's like, I don't want that. I don't, I hear stories. I mean, even as a little kid, she's like, I don't want it. I don't like it. I don't like anything to make me feel weird. Um, it was hard to even get her to take Tylenol, you know. They had to almost force her to do that. They have the the pump, the the morphine pump, and they're like, if she needs it, if she, you know, she wasn't she's 16. They're like, if you need it, Joey, push this button, right? Right. Um, and you can only you can't overdose yourself because it won't let you, but you can push it, and then I think it's like every nine, 10 minutes, you can if you need it again, but you won't hurt yourself. You can make yourself comfortable. She's like, Yeah, okay, whatever. And she laid there for hours and she was just crying. And I'm in the bed with her, like laying at the bottom, like scooched into her little, you know, between her knees. And I'm like, You're fine, you're okay. And I'm trying to like pat her. And I'm like, okay, yeah, you know, and she's just crying and she's like, I hate this, I hate this, you know. I did the worst thing ever. I took that thing and I pushed that button. And Joey looked at me and she's like, What was that noise? I'm like, no, it was nothing. And then maybe 15 minutes later, she finally calmed down and fell asleep. I didn't know that that machine records when you do that. And the next day, when the doctors were doing their round, they're like, Oh, Joey, I see that you needed morphine last night. And she looks at me and I gave her that wide-eyed, like, you better, I don't know what's happened. I'll talk to you about this later. And she's like, Yeah, um, I guess she's just kind of like, Yeah, whatever. And the doctor's like, How are you feeling now? And she's like, crappy, but I don't, you know, I just want to go home. Yeah. And then after they left, I'm like, I'm so sorry. I'm so sorry. I knew it wasn't gonna hurt you. I just wanted you to, I just felt like I couldn't help you. And I knew that that was it. Yeah. So we had that unwritten like look on our face where we were like, Oh, did that just yep, I just got in trouble. I I did that. There was another surgery after that. It was supposed to be, you know, she was having this weird pain in her chest, maybe a year later. Um, and she kept going, Mom, it feels like something's poking me, you know, just at the top of her breastbone. She's like, Something's poking me. I'm like, what is poking you? Like, I don't see anything. It doesn't look like you have anything. Take her to the doctor, children. I'm like, she has something hurting her right here. And they're like, oh, it's one of those original staples, is now worked its way through other open hearts, you know, because she ended up having five open heart surgeries. Anyway, ended up working its way and turned around and was poking her, right? And they're like, well, we don't normally do anything because that does doesn't normally happen. But if we need to, we can go in there and just just make a tiny little cut at the top and just take it out. And I'm like, oh. And I look at her, I'm like, did you hear that? The doctor just said it's super easy. They just, it's just a little, you know, they give it a little baby cut, like smaller than the size your, you know, half of your pinky. Cut it and take it out, you know. And I'm always like, it's okay. Like they can do that. They take air in, they take it out, you know. Uh, I think she goes home the next day. They just want to make sure she was okay. And her body was never really good at recovery, whether it was like her her eating habits and her just her the blood flow and her heart just was never working right. So she wasn't, it wasn't healing. She ended up having to have a wound vac on that that would just constantly suck and pull out and try and heal and pull the blood to the surface to kind of like get the blood into that spot. Wow. She had to take it to school with her, right? And it would, she had to sit in the back of the class. I mean, it sounds funny now, but because she tried to make a joke of it and plug it in, and it would make that vacuum sound. And kids in in the class, she was tenth grade, and kids in the class would turn around and go, Um, Joey, could you keep it down back there? Like with the the sucking of that whatever you have hooked up to you, you know what I mean? Yeah. It was a and I'm sure she was mortified, but she made it funny, like, yeah, I'm just the kid in the back with the you know, and that had to, and then it was just still wasn't working. We go back in and the doctor looks at this nurse. She was like a one of the helpers to the doctors. I don't know. She looks at it and she's like, um, and Joey's like, don't touch it. She was always like, Don't touch it. And the doctor's like, hang on, just one second. And she snipped it and opened it up again. And Joey's like, what? And she had to dig in there because now there was an infection. We're like, Oh no, oh, you're joking me. But it was so funny because this little lady was so cute about it, and she had always known Joey for, I don't know, 15 years or whatever. And Joey's like, What hey, why did you do that? You know, it was always that joke. So every time after she that she saw her, she's like, Hey, remember you cut me open right there, you know? And I think that if she was any of my other kids or any kid that I know, she never walked around like why me crying about it, feeling sorry for herself, feeling I think she just developed a resiliency to all of that and then dealt with it with humor.

Bruce: 35:30

Oh, yeah. She was just super funny and joking.

Marnie: 35:32

She was always super funny. But I think instead of being scared, uh instead of being made fun of, instead of crying about it, she just would laugh and make jokes. And they were clearly uncomfortable jokes and they were clearly inappropriate stuff. But she would do it because she knew it would get somebody else to look and laugh, as opposed to this is me and this is the bad things that are happening. Yeah. So yeah, I mean, but after that surgery, she did not have another one until 2020, January 2021. You know, she did have all those tests, stress tests, you know, which she always hated, despised them because they'd always go, go harder, push harder, and she's like, I can't do it. You know, she just she would go out and try and do things like I'm gonna go swimming, and then she'd get out there. We'd take the whole everything to the pool, and she'd get in there and she'd swim for about maybe five minutes. She's like oh, I'm exhausted. She would poop out really quick. So that always made her a little angry. It would make her mad that she was tired, even though she never would say I'm tired, she would just get super mad. So she did have a temper, but there's just so much of her story that gets forgotten when I say my daughter died of congestive heart failure, or she was born with congenital heart defects, or she ended up with a left ventricular assist device, and there was no there was nothing else doing research right now. There's nothing the percentages of having a mechanical heart and living capacity here with with the medications and stuff, it's like 75%. There was only eight other people at the University of Colorado here once we got back to Colorado from Nebraska that actually have it. And all of them are 35 to 55. So we had nobody.

Bruce: 37:21

I mean, she And this is basically an artificial heart.

Marnie: 37:24

Yeah, yeah, yep. Um, it just does anything that the the left side would do. The right side was failing, but but there's no there's no such thing as a right-sided assist that is outside of the hospital. She did there is one that's in the hospital, but you can't, there's not one that's available for you to leave the hospital. That's only an intensive care, and that's only like she actually was on one to get her healthy enough to get the left one, if that makes sense. But her lungs were failing. She was gonna need a uh lung and heart transplant. And the chances of that happening, even if you were healthy, they never, it was never a thing they talked about. They were just like, she's she's gonna live or die, she's not sick.

Bruce: 38:05

We'll pause here for now. And in parts two and three of our conversation, Marnie will share more about Joey, her tragic death, and what living with grief has been like for her since that day. After you've listened to these episodes, if something resonates with you and you'd like to share it with Marnie, please reach out to me by email. She's open to connecting, and I'll share that email address right after the show. So until next time, thanks for listening, and please be kind to yourself.