86: Losing Leyden to NEC - what and how

Foreign.

Welcome to Grief and Guts. I'm your host, Melissa Dugulecki. It is my honor and privilege to serve you by sharing stories, tools, interviews and strategies that will help you transition from what do I do now? How do I get through this? Those feelings of overwhelm and uncertainty to truly standing in your power. From my grief journey in losing my daughter laden in 2014 that I learned, practiced, was exposed to all these tools, but they are not grief specific. In fact, they apply universally to all of our unique situations. You've already done the hard part by showing up, by opening up to something new. So without any further ado, let's get to the good stuff that's going to help you in your journey. Let's dive in.

Thank you so much, Jen. It's an honor to be here and I just want to say thank you to every person, regardless of your role. Taking the time to invest in learning and hearing and expanding ways of thinking from my daughter and my story, there's really nothing that means more. So I appreciate it and thank you for allowing me to share the story of my daughter, Layden. So my daughter Layden was born in 2014. When I was pregnant, she was diagnosed with congenital heart disease. They suspected asd, VSD, and possible coarctation of the aorta. We were in Boston at the time and I had had open heart surgery. I had an ASD repair at Boston Children's Hospital when I was young. So this was no strange thing for us. Of course it was scary, but, you know, the outlook was really good. She was born and all hands were on deck. When she was born, there were 19 sets of eyes in the delivery room. Like everyone was there. There were cardiologists for me, for my daughter Layden, there was a nicu. There were the delivery staff. And I always laugh and say there were students from Harvard that were like, we're just here to observe. And I was like, welcome. So Layden came into a full, full room of love and energy and she really spread that love and energy throughout, you know, our time there. After a couple of weeks of observation, they decided that laden she we could go home. She was doing much better than they thought. The coarctation of the aorta did not present as an issue and they wanted her to get a little bit bigger for before doing the ASD and VSD repair. After a few weeks at home, Leiden wasn't growing. She was, we were measuring her food. We were, I was pumping. She was refusing her feeds. So I would pump and then we would put formula in it and actually vegetable oil in it as well, because they wanted to up the caloric intake. We measured all of her feeds, we weighed her multiple times a day, but she just, she didn't grow at all over the course of those three weeks. And she became increasingly fussy, she was gassy, her belly was distended. And I called the doctor, her doctor. I remember on a Saturday and I was like, something is wrong. They said, you know what? We have a scheduled heart repair for Monday. At this point, they were going to do the full heart repair for the ASD and the vsd. They said, just come in on Saturday, we'll keep an eye and we'll see, you know, how she's doing. So this was a few weeks after that. So we went back in and the morning of her scheduled surgery, one of her nurses observed blood in her stool, in her diaper. And I didn't know what this was and it was kind of like a flurry. And they said it was possible neck watch. You know, it was neck watch. And that instead of doing the full repair of the surgery, they were going to put a PA band to restrict the blood flow and or constrict the blood flow. Apologize, I'm speaking as a mother here, not a medical professional. And that then we'd go home, she'd grow and we'd come back. So they put the PA band on. It went really well, better than they expected. They said, you're going to go home again. You just need her to gain some weight. So this here was during that time, she still wasn't gaining weight. She was refusing her feeds. She was born 6lbs 2oz and she was still 6lbs 2oz here. They put the NG tube in to force the feeds and Leighton refused them. She didn't take them. This was in now, May of 2014. We had been in Children's Hospital since March and she was born in February, so we'd been there for quite a while. And they said, all right, let's do the full heart repair. So they did the full heart repair and it went really well. They said everything was closed up, that it went better than they expected and we were going to be going home the next day. We gave Layden a bottle and at this point they had had her on neck watch previously for all the fussiness, but they ruled it as a milk allergy. So we gave her her dairy free formula. She took her whole bottle down, everything looked great. And then her stomach began to expand. It was at that point that things got bad. So as you can see here. Things deteriorated really quickly. It was. It is still a nightmare. So we went from going home now. My daughter had had two heart surgeries. She had had the PA band and then the full heart repair. At this point, they said, we're going to go in and do an abdominal surgery. And they removed some dead intestine and they sealed her abdomen back up. And they said, two week delay, you'll go back home. And a couple days later, they came in and they said, this isn't going well. We're going to put her on ECMO now. I didn't know what ECMO was, and you can see here at this point what she looked like. So she was on ECMO and there was just tubes everywhere. You know, I never actually held her again after that time when I got to give her that bottle until the day of her last breath. At this point, you know, this was in May of 2014. She had had her full heart repair on May 14, 2014. Two days later, she had an abdominal surgery. Two days later, they did another abdominal surgery. They didn't find any more dead intestine, but they said they were going to leave her abdomen open. They took her off of ecmo and you can see in this picture here, they said that she wouldn't live. And actually, before you go on to the next slide, she did live. She lived. Coming off of ECMO, I'll never forget sprinting back. It was June 3rd. At this point of 2014, I can't remember what I did last week. I can remember every single day and date and moment of this. It was so intense. She lived. We put her on dialysis and that transition went well. But about two weeks later, they had a family meeting. And despite everything that I was fighting for and everything that Layden was fighting for, her brain was functioning. They kept checking for brain bleed. There was no brain bleed. Her heart was squeezing beautifully. She opened her eyes. Even on max dosages of morphine. Anytime she heard my voice, she was fighting. But her body gave out on her. On June 19th of 2014, my daughter Leland lost her life. And the first time that she was actually diagnosed with necrotizing enterocolitis was on her death certificate. And so, six years later, I still live wondering what if? And I don't get to know what if. I don't. But as Layden's mom, I will fight and do anything I can to help another family from living with the what if? And so, on behalf of Layden and our whole family and the next society, I just want to thank you for being here and for learning. And I can't tell you we can't go back, but if we can help moving forward, I'm here to do it and I'm honored to be a part of it.

Thank you all so much. So much for being here at Grief and Guts as Layden's mom. Being able to spread the stories, the strategies, the lessons I have learned through Layden and from Layden is the thing that means the most to me in this world and allowing my daughter's short life to have long and lasting impact by shining her light. Truly, nothing means more if you align with and believe in the work that we're doing here in these messages. The best way to give back and to speak spread this out into the world is to rate and review on Spotify and on itunes. Thank you for taking just a moment to do that. Feel free to shoot me a message. Let me know what you want to hear more of, what you want to see more of. I am here to serve. I'm grateful to do so, and I'm cheering you on in your journeys.

Always.