13: Vulnerability Hangover and Sharing Leyden's Story

Hello, friends, and welcome to Grief Guts and Green Smoothies. I am your host, Melissa Dugalecki, and I am so excited to be here with you all to chat about ways in which we can all get through different adversities, challenges and loss, and how getting outside of our comfort zone and maybe having a green smoothie or two can help us do so. We will cover different topics, ranging from interviews to recipes to sharing my own stories of my grief journey and the loss of my daughter, Layden. And I'm honored to be able to share her light in hopes of helping you spread yours. Now let's dive in. Hi, friends, and welcome back. My name is Melissa. I am your host of Grief Guts and Green Smoothies. And today we're going to get a little real. We're going to go a little behind the scenes. I had the privilege and opportunity yesterday to speak at an event called Yoga Reaches Out. And those of you who are not familiar with Yoga Reaches out, it's this amazing event. I talked about it last episode with Jackie Bonwell, and it was started by this brave, courageous, creative woman, Sarah Gardner here in Massachusetts, who was really inspired after her son was treated at Boston Children's Hospital, to give back and to do so through the practice of yoga. What has evolved from this is now nine years of an event called Yoga Reaches Out. This is Yoga Reaches Out New England, where over a thousand yogis roll out their mat and they commit to raising money, practicing yoga, sharing support, all to benefit Boston Children's Hospital. Needless to say, as a yoga instructor, as a bereaved mom of Boston Children's Hospital, as someone who did prenatal yoga with Laden, and then actually really began to understand the power of yoga in my grief journey. I always say I practiced it prior to having Layden, but I didn't understand the power of it until losing her. This event is a lot. A lot of energy, a lot of emotion, a lot of just all the feels and a lot of meaning above all else. So when I was asked to be the keynote speaker, I was blessed away. I had the opportunity to speak there yesterday in front of over 1200 yogis and to share Leyden's light. And a couple of things came to hold. Very true that I wanted to share here. Now, first, I am going to share my little speech on here. Many of you have asked if it would be shared. I am working on having the sound from it cut and put on here. As you all know, I'm obviously not doing that because it involves technology outside of my zone of genius. But it will be done. But I wanted to share that. I forget how many people are curious about Leighton's story. I had some women approach me after and just say they always wondered and they wanted to know more. And the other thing is, I was reminded how very real that vulnerability hangover credit Brene Brown actually is. And it started back in the beginning of my grief journey. If you don't know what a vulnerability hangover, it's that feeling like when after you put yourself out there and you completely open up, and then after you do so, you kind of want to crawl into a cave and never come out. You feel sick, exhausted, wiped, drained, anxious, questioning all the things. And so Brene Brown, amazing, amazing woman, researcher, advocate, has termed it a vulnerability hangover. And, boy, was that true. So for me, my vulnerability hangover was compounded by grief. And grief is an intense manifestation of a lot of our challenges, a lot of our stuff. So for me, all of kind of my baggage, my stuff that I deal with and manage came right up to the surface. So I was really working through, you know, wondering if I had done Layton justice, if I had done, you know, well enough, if I had done the hospital justice, if I should have said something else, if I left something else. So much so that I was actually crying on the shoulders of some people and saying, you know, I didn't. I didn't do well enough. Because in my mind, I can never possibly do well enough for Layden. And so I finished a speech that was heartfelt and sincere and honest. I got a standing ovation from 1200 people. And my takeaway at first was just crying and feeling like I didn't do well enough for Leiden. I needed to go do better. And so for me, that was very much grief intertwined with that vulnerability hangover. Now, the good news is I was able to recognize it in the moment. I was able to hug a friend and be honest about it, and I was able to laugh at myself through the tears. And so I think that's really important. Whether you're grieving or supporting someone through grief, these things are real. We can't control them, but when we bring awareness to them, we're able to maintain a spot in the driver's seat, right? And to maybe surrender where we need to or let go or not make decisions or have, you know, important conversations from those places. But what's funny is when my first vulnerability hangover set in, I think it was shortly after Layden passed, and I posted on Facebook and I remember hitting post. I remember talking to my college roommates before doing so and going through the words and picking the picture and wanting to know what to say and being so afraid of what to put out there. And at the same time, while I felt the vulnerability hangover yesterday, I also saw such growth because, you know, now I mindlessly post on Facebook and I host this podcast here to talk about laden and grief and everyone's journeys and the lessons and offer support. So to think of how far it's come. So even though these vulnerability hangovers continue to be real, let's say my quote unquote tolerance for being vulnerable has really strengthened. So through the challenge, that was something I found a lot of strength and comfort in and just feel really grateful to this entire community for being a part of that. So that was one thing I wanted to share. And then, of course, Layden's story. So, you know, I really never shared a whole lot about Leighton's actual story. And I figured, inspired by yesterday, you know, Leiden's anniversary coming up in the next almost two months, this was kind of a good time to celebrate her life and to talk about that a little bit more. So many of you held space and celebrated her birthday. So I'd love to share a little bit about Leiden and her story. So Leiden was born with congenital heart disease. We knew when I was pregnant that she had heart defect. She was diagnosed with ASD and vsd, which are relatively simple in the world of cardiac, though, of course, no heart disease can be taken lightly. I had an ASD repair when I was a child at Children's Hospital. Say it's not genetic. I don't know. Jerry's still out for me. Maybe it's the mom guilt of carrying around that Leiden inherited this from me. I'm not sure. But because of that, when Layden was born, we had my cardiologist, my delivering doctors, nurses, Layden's delivery team, the ICU team, the NICU team, the cardiac intensive care unit team. And then, as I always share, my favorite were the students from Harvard who literally looked up and said, we're just here to observe. And I thought, okay, welcome to my labor. And so Leiden was born on February 20, 2014, to 19 sets of eyes. And when she was born, I looked over and her father was fumbling with his phone, which I was slightly annoyed at. And then he held it up, and it was actually the song Three Little Birds. That was a song we had picked prior to her being born when we decided that our unborn child needed a theme song, because everybody needs a theme song. Side note, I Encourage you to think about what your theme song is, because it's really fun to have a theme song to play before a big interview or conversation or a workout and just kind of pump yourself up. So Laden's was Three Little Birds. As many of you know, that's something that still remains really significant for me. We were at the hospital for a couple of weeks. I think it was about 10 days while they monitored to see if they were going to do the full heart repair, and they thought it looked a lot better than they had anticipated. So we went home and we were told that the goal was for Laban to grow and that we'd come back in about six months or so and do the heart repair. Leiden was awesome. At home, she was so great. We did a lot of shopping. We even went for jogs. We did workouts. She had her baths. We did coffee dates, play dates, all sorts of stuff. But what she didn't do was grow. And we weighed her every day. We had a nurse that came in. We were fortifying my breast milk, meaning I would pump and then add formula to it, and even a little bit of vegetable oil they had us doing to really up her caloric intake. But she still wasn't growing, and she was getting really fussy. So after about three weeks or so of being at home, they had us come back in. So we were readmitted to Children's Hospital. They were going to do her repair that Monday morning. We went in on a Saturday through the emergency room, got a bed, and stayed through the weekend. And on the morning of her scheduled heart repair, I actually went out and took a quick yoga class, came back, and they had said, we're not going to do the full repair. There could be a complication. We observed some blood in her stool, and it was her nurse who had observed some blood in her stool. And ironically, it was her very, very first nurse that she had at Children's back when she was born. Her name is Lauren, and Lauren has a son whose birthday is the same as Leighton's. He's just two years older. So there's just always a really special connection with them. And in a way, I think Lauren was a little guardian angel, because had Laydon gone in that morning and had the full heart repair, we may have lost all that time with her that we had. So they didn't do the full heart repair. They did a partial repair where they put a PA band on her heart to constrict blood flow, basically, that would increase her blood pressure and allow her to get larger and grow and stronger, which of course reduces the risk of the full heart repair. So that was the goal. This was on March 23rd and we were going to go home. As soon as she gained weight, she had more another episode of Neck Watch. She went dairy free. There were times where she couldn't eat, there's times where she refused to eat. It was this kind of this waiting game of getting her to grow. And by mid May of 2014, so we'd been at the hospital for just about two months now, she still had not grown. She was 6 pounds 3 ounces and she had been born 6 pounds 2 ounces. So, you know, I mean, on a day to day, she presented great. If you see pictures of her, she's smiling, she was engaged, she had cute outfits. We love to go out and hang out in the garden at Children's Hospital. She loved to snuggle in my little bed space with me. And through all this time I was living at the hospital. So I would get up in the morning, check in with Layden or nurses, go to work for a few hours, come back, work from the hospital, have dinner there, go for a run. From there it became the new normal. In hindsight, it was so far from normal. But anyone who has endured the trauma of living at the hospital will know like it just becomes your new normal. You go into survival mode. They had put an NG tube in Laden, which is that tiny little yellow feeding tube you see in pictures of her that went through her nose that was gonna give her her feeds because she was refusing them. But as I said, come in May, she still hadn't grown. So it was the Wednesday after Mother's day, it was May 14, where they said, we're gonna do the full repair. So she went in for her full repair. They closed both holes. They said it went beautifully. We were so excited. We went out to dinner, we celebrated. The next night she had her first bottle, she downed it, we sent a picture of her in her empty bottle, so happy that she finally took a feed to her cardiologists, who are so wonderful. And they celebrated. And a couple hours later, Leiden's stomach began expanding. And we didn't really know what was going on. And just, you know, in hindsight I wish I had been a little bit more urgent in my advocacy, but you know, we do the best we can. And it was two days later that her stomach had really still expanded. She was getting becoming really pale, bloated and fussy and just had this really kind of like knowing look in her eyes. And I I'll never forget it. And we have videos of it, pictures of it, but just this kind of distant stare. And they said, we're going to do an abdominal surgery. And they went in and they did an explorative surgery. They found dead intestine. They removed the dead intestine. They closed her abdomen and said, this will be a two week delay, and then you're going to go home. This is just a two week delay. So we said, okay, we can do that. Like, come on, Leighton. And we always called it game day of her surgeries, and it was overtime. That was double overtime. We'd give her little pep talks and have her tell her to put her game face on. So we just stuck with that. But Leland did not respond well. It was. It was from there, it was kind of, you know, the wheels fell off. And there was one night where her nurse, you know, after the surgery, literally, I think, kept her alive by manually pumping her blood pressure. Just laden was leaking out of all parts of her. She wasn't moving anything around. They went back in and did another abdominal surgery. They said they found no more dead intestine, but that it was very angry. So they left her abdomen open. A couple days later, they came in. Her attending cardiologist had returned. He'd been away. They came in and decided they were going to put Leiden on ecmo. And at this point, we didn't know what to do. The jury was out on whether or not this was the decision to make. We trusted and went with the opinion of the attending cardiologist. Now, ECMO is basically a life support machine. The theory is that it does all of the work for, you know, the child or whoever's on it so that the body can rest and recover. The counter argument was that Leiden's body wouldn't learn to do it on her own. But we went with ecmo and Leiden did not respond well to it. She was on it for two weeks. You know, arguably it's what kept her alive for two weeks. You know, it could go in a million different directions, but it was. It was a lot for her. And she had, you know, green stuff coming out of her nose. She was very jaundice at this point. She was very bloated. So through all of this time, essentially from her first abdominal surgery, we couldn't hold her and she couldn't eat. So this was really. The time was really kind of increasing on this, and it was hard. She would hear our voice, though, and she would want to connect. So she would wiggle her fingers and she would kick her feet to the point where she was on max dosages of morphine and sedatives. And she would still do these things. And it was a little bit of a risk because with the catheter, with the echo machine going into her, she couldn't be wiggling around. So I would sometimes have to whisper to the nurses, hoping she didn't sense me, but they didn't, always would. And of course, have a little mom pride in that and how what a fighter she was. And, you know, she would be on these max dosages of sedatives. And when I'd go over and put my face into her, she was opening her eyes so incredibly brightly, so wide. And, you know, I would just always whisper to her, keep fighting, Laden, keep fighting. And I worry that with all the machinery and with the lack of touch, you know, I couldn't hold her, I couldn't snuggle her, I couldn't feed her, she couldn't eat, that she was going to lose her will to fight. So I thought, how can I really fight for her? And so we had a meeting with the team to really rearrange all the wires in the bed space so there were more spots for us to touch. We asked for the lights to be dimmed. We got a recorder and recorded our voices reading book after book. We recorded the sound of her mobile, which she had loved so much. We recorded sounds of music so that essentially we could put this recorder by her and she would hear all of these things instead of the machines, and took pinwheels and pulled them off of, like the little plastic part. And I hung them from string up above her. And I wanted her to have something to look at that represented a mobile. And I took pictures of her and I covered her entire room with them for all the doctors and the staff and the nurses and the interns and everyone who came in to see, because I wanted them to know that Bladen, in the version that she was unable to move or eat, swollen, puffy, jaundiced, like she was more than that version of her. And I needed them to see healthy Laden. I needed them to know who they were fighting for. So we did all of these things. She had been on ECMO for two weeks. I believe it was June 3rd when they said, she's coming off and she won't live. And so obviously that was devastating. It was just a morning. I was honestly heading to work. And obviously that quickly got derailed. Our families came in. Her father's family flew in. Our church came in and we did our promises to Layton. So her father and I wrote down our promises, you know, all the things that we would promise to Leiden. And we did what at our church is essentially kind of like a baptism. I was raised Catholic, currently Unitarian Universalist, but it's a dedication ceremony. It's like a welcoming ceremony. And our reverend did it, and we recorded it, and it was beautiful, and we were crying. And, you know, one of the promises made to Layden was, we'll fight this battle with you as long as you lead. We'll fight this battle with you as long as you lead. And I'll never forget that. And, you know, late in that night, came off of the ECMO machine and we were back in the. In the waiting room. They'd given us a private space, and we had families there. So many pictures and videos and crying. And they came back and they said, laden lived. And I remember looking at them like, what? And I sprinted as responsibly as I could, sprint in the cardiac intensive care unit back to her bed space and just buried my face into hers, just buried. And I just thought, she's not done fighting, and we are going to fight with her. And so she did. She kept fighting. The next day, she had to go on to dialysis. Was a really, you know, she was already very vulnerable. She had had so many interventions, right? Two heart surgeries, two abdominal surgeries. She'd been put on ecmo, she'd been taken off of ecmo. Now, mind you, she was only three and a half months at this point. This was a lot. And going on dialysis wasn't going to be easy. And I was scared. And I remember going to the bed space, the parent bed space, and just wanting to wait in it. And they were putting her on dialysis right in the room. So I was right there. But I needed a little bit of space. It was like my heart was so shattered, you know, yesterday, literally saying goodbye and thinking she wouldn't live, and now facing that fear again less than 24 hours later. And her father looked at me and was like, lada, need you here, and I need you here. And that was one of the moments where I really learned that I had to shelf my own fear, my own pain, to go show up for somebody else, because I had to go show up for Leiden. I needed to take my pain and my fear and just put it to the side and go show up. And that's what I had to do in that moment. And Lena went on to dialysis really successfully. And dialysis went well for her, you know, at this point, you know, she was already jaundiced. She was in organ failure and renal failure. But they were able to take a lot of the fluid off, the puffiness. And we continued to fight, and we put little signs out that said, keep fighting late and win the day. And I wanted to make sure everybody knew what our goal was. So the goal was getting fluid off. So I went and took baby bottles, like, big baby bottles. And with every shift, I would find out how much fluid was taken off, and I would fill it with that many ounces of water. And then I took the little marker, like the ink from the marker. I took it out of the marker. Sorry, children, everyone's markers. And I dropped it in the water bottle, and I would shake it up so that you'd have colored water in the water bottle, because I wanted a visual for everyone to see how much fluid we were getting off, because that was the goal. And I wanted to feel like we weren't motivating staff. I guess it's the athlete in me to continue to get fluid off. So we continued like this for a couple weeks. And I'll never forget, it was Father's Day, and I was with Leighton and looking down at her and reading to her, and she was just staring. She looked sad. She looked really sad. And for the very first time in all of these interventions, all of them, she started crying, and there was no sound because she had a ventilator in her mouth. And I'll never forget, I just saw these tears coming down. And of course, I started bawling, you know, and I held her hand, and I pressed my face against hers. Oh, I just said, keep fighting, Leiden. You know, we love you, and we are here. That night, I took some time away from the hospital and went to see my dad. And my family asked, you know, how's Lena doing? And that was kind of just the normal question at this point. You know, how's Lena doing? How's it going at the hospital? And I said, you know, she looks really sad. She cried today for the first time. You know, everyone was concerned, but at this point, there had been so many things. We just had to keep showing up for her and sharing love and working with the medical team. And so that Wednesday, just a few days later, I was at work, I was in a meeting, and I got a phone call from the hospital. And I'll never forget, I was meeting with somebody, and I looked down, I said, oh, you know, this is just the hospital. They changed leavens bandages today. They're Just going to let me know how it went. Hold on one second. And I took the call and essentially they said, you need to come back. And I said, I need more information than that. And we went back and forth a little bit. I went a little mama bear, not gonna lie. I got some more information, enough to know I needed to get back and left that meeting and drove back to the hospital. And the whole way, her father and I were kind of in silence. Normally we'd call one another and kind of game plan for the meeting, but we knew this was bad. We had been informed that they found more dead intestine. And so we knew that was gonna be really bad. And we got back and they said, you know, we found more dead intestine and bladed can beat this, but she'll never live. And I said, I don't care. Like she will be that blonde hair, blue eyed, though the jury's still out and what color her hair would be. We're still not sure. She'll be blond hair, blue eyed, kindergartner who says I can't eat a cupcake. But I have my life and this is my story and that's my job. Like, I'm gonna teach her as her mother to own her truth and to be grateful for her life and to share love and she'll teach others and she's going to enjoy her life. And they said, well, we need to have a team meeting and I'll talk about it. And I got a little defensive and I insisted on only having a team meeting with one of the attending cicu, so cardiac intensive care unit, one of the attending doctors. And she was the person at this point I felt really safe with. And they said, she isn't working. And I said, well, then I guess we're not meeting. And they ended up bringing her in and we had the meeting. And she looked me right in the eye and said, you know, the team has met. We've wanted to have this conversation. We haven't wanted to have this conversation. We probably could have had it earlier, but we believe Leighton has no chance to live and that she's beginning to suffer. And I thought back to Layden crying on Sunday for the very first time. I thought back to how sad she was and how much pain she was in. I thought back to our promise to her of we'll fight this battle as long as you lead. And we really believed and we felt that Layden was leading. And we knew that it wasn't our job as our parents to put her in a position to suffer and to work with the medical team. And that night, her nurse, guardian angel, Lauren, who had first found that blood in her stool that arguably saved and gave us that gift of those last three months, was working. And she helped us get special bonnet and sweater for Layden. We cleaned the hospital room out and packed our car, and then we read to Laydon. We reread our promises, we told more stories to her, and then we were able to hold her in our arms and hear her last breath. And it was one of the most beautiful, painful, traumatic sounds I've ever heard. And yet there's no place I would ever want her to be to hear her last breath than in my arms. Because she knew she was safe and she knew she was loved. And knowing that allows me to sleep at night. And leaving that hospital without Leighton was probably one of the most surreal feelings. You know, leaving there with all of her stuff and without, you know, our child. And it was at that point where my grief journey really began. And it was been a slow journey. And I share all this because I've never shared the hidden story before. And so many things that, you know, I promised her so that I'd help her light always shine. And when we were in the hospital in those days, back on what's called in the world of Children's Hospital, 8th floor, kind of the good side, which is 8 East, which is the side you go to before you're going to go home, not the intensive care unit. When we were on eight east, just waiting for her to gain weight, we did a lot of crafts and online shopping, and one of the things I had ordered on Etsy was a print that said, all the world is a light for you to shine. And it was for her nursery, and it was a lyric from one of my very favorite songs to sing to her Princess and the Cowboy. And I saw that print in her nursery when we got home. And I knew that it was going to be my job now to help Layden's light shine. And so as I share her story, I hope that it helps you understand what's behind this podcast. What's behind my drive, what's behind my goal as her mother and my goal as a human, to support other people in trauma, other people in grief, other people experiencing loss in different capacities, relationships, jobs, moving, change, all of these different ways that these difficult energies can manifest. And I thank you all for helping me remember every little thing is going to be all right. Laden song, right? For reminding that we can all fight and show up the most powerfully we can. Each and every day. And having integrity about our energy is really the best thing we can do for ourselves and for others. And for helping me and helping the lights of all of you and the ones that you love and care about for choosing ways to feel your very best so that you can give your very best and that you can yourself shine. And in doing so, we can also help others shine. So I hope this episode was helpful in learning so much more about Laden. Gosh, there are so many stories I could tell and share and more to come. I'm sure in the future of this podcast if this resonates with you and you want to help us shine on even more, please subscribe. Leave a Review those are all just going to be ways that are going to help us reach more people, have a greater impact impact and make a larger difference. So thank you so much friends. We'll chat soon.