“We should really talk about these things"

“There needed to be a space; a safe space for people to go in… so we’re
really proud that that space came out of this in Lincoln’s honor.” Alexis LaVacca started her pregnancy journey like every mom – looking forward to the next steps in her life. Tragically, early-onset preeclampsia transformed that journey from one of excitement to a story of premature birth, a month-long NICU stay, and the heartwrenching loss of her sweet baby Lincoln. In honor of October as Pregnancy and Infant Loss Awareness Month, join our “Power of MoMMAs Voices” podcast as Alexis shares her story and honors Lincoln through the work she does as a maternal health advocate in her community in Long Island, NY.

About MoMMAs Voices
MoMMAs Voices (Maternal Mortality & Morbidity Advocates) is the first-ever maternal health patient advocates program bringing together real patient and family voices. We're made up of dozens of maternal health organizations who represent all types of maternal health conditions, as well as cross-cutting topics like maternal mental health, racial equity, healthcare delivery, and patient-provider partnership. We sit at the center of maternal health improvements, connecting and training patients with lived experiences, providers, quality improvement leaders, researchers, and policymakers to move forward improvements in maternal care. We are a program of the Preeclampsia Foundation.

Transcript

Nicole: [00:00:00] Well, thank you Alexis for joining us today on this episode of the Power of MoMMAs Voices podcast. And this season we are spending all of our time talking to people with lived experience, our patient family partners or PFPs we call them. And, and getting them an opportunity to share about their experience.

Nicole: I'm giving them a platform to use their voice. And to help to educate other folks and so I wanna thank you again before we even get started, just for coming on and, and joining us and, and being brave about opening up about some of your experience.

Alexis: Well, thank you for having me. I appreciate it. I'm ex- excited to chat with you.

Nicole: Awesome. So let's dive in. As we are always, you know, doing these trainings and having these discussions, we like to start with like the end in mind. What is it? If you could have the listener today, take one thing away from what you wanna share, what would be that message? What is one thing you want them to [00:01:00] hear from me today?

Nicole: Yeah. 

Alexis: This like question brings me back to teaching because I feel like we used to say this in the classroom all the time. What's, what do you want to happen in the end? Start there. I feel like for me though, the biggest thing is just like your story matters and your baby's story matters, and we should talk about these things.

Nicole: Mm-hmm. 

Nicole: That's, 

Nicole: that's excellent. 

Alexis: Short and sweet. But I feel like that's like the bottom line is it's okay to talk about these things and Yeah. 

Nicole: Awesome. 'cause we so oftentimes like people get shy they don't wanna hurt you or I, I mean. I think some people are well intentioned. I know I've had family members, but I just have to keep telling myself they mean well.

Nicole: Yeah. They just don't know how to say anything better. And I think that goes also for the same, for healthcare teams and quality improvement teams. They're so worried that they don't wanna retraumatize somebody. That sometimes that like perfection [00:02:00] gets in the way of any progress. 

Alexis: Yeah, and I can like, and so I'm already sad about ev, about what happened and what went on.

Alexis: Like I might appear not to look sad anymore, but like it's always there. So bringing it up isn't going to make anything worse. I'd rather, you know, get rid of the elephant in the room and actually talk about these things. 

Nicole: Mm-hmm. Awesome. Well, that's a great point to, to start off with and to talk about your advocacy journey.

Nicole: As you've been doing this, we'll talk about your, your pregnancy experience and your, and your journey there. But like, as far as advocacy, advocacy goes, is there a moment that or what moment in your journey to becoming a maternal health patient family partner really stood out in your mind? 

Alexis: I feel like there's two for me.

Alexis: I can start by saying like. I never in a million years saw myself going down this path until I myself was in the experience I went through. So [00:03:00] every time I like talk about anything like this, I'm still always like shocked that this is my life and I'm talking about these things and trying to. Make things better for other people in, in this field.

Alexis: It's just still so new to me. But there are two things I would say. The first one is we were really excited. My husband and I excited is always a weird word to use. I feel like maybe excited isn't, isn't the right word, but I guess honored and proud of ourselves. We really advocated after our son passed.

Alexis: We really pushed to get some type of grieving space for parents in the NICU because we did not have that. So we worked with our hospital and they were super open to everything that we had to say and validated all of our feelings, which was really great. And I was actually away on my first. I had switched careers and I was away on my first work trip and got the call from the hospital that the room was all [00:04:00] set and they are displaying our son's story in the room.

Alexis: And like all of that kind of happened because of, of the waves we made, which we're really proud of. And then the other one I would say is I am co-chairing the Promise Walk on Long Island for preeclampsia. And seeing. People join the walk and start teams that like my co-chair and I'll be like, do you know this person?

Alexis: And we have no idea who they are. So just knowing that like what we are doing is reaching people that are outside of our immediate circle and being able to connect with people that have gone through similar 'cause. Experiences. And I feel like that's what this is all about, is educating and raising awareness and the fact that we're able to spread it again, like outside of our inner circle, outside of the family and friends, and like we see people joining that it's like, oh, I have no idea who this person is, but like, I'm excited to connect with them.

Nicole: And the, and hosting a promise walk in itself can be very healing. 

Alexis: Yeah. 

Nicole: For 

Nicole: you. You know, [00:05:00] it, it's I did it for 10 years and so it was like finding some purpose. I did, I always did it for 10 years in Dallas. 

Alexis: So Where was it? 

Alexis: Oh, in Dallas. 

Nicole: In Dallas, yes. And so, you know, it was very, like I said, healing, like it gave some purpose to what we went through and as a way to honor and like build a legacy.

Nicole: I tell people that have had losses, like find something. Find something that's meaningful to you to build a legacy. Whether that is doing something like a fundraiser, an awareness event, like a promise walk or writing, blogging doing art, like whatever that is. Like find an outlet that you can use and build that because it's really helps to bring some meaning to the tragedies that some of us go through.

Alexis: I feel like that's spot on because my husband and I were always like that. We were sitting in our therapy sessions and we're like, this can't just be about the, like our [00:06:00] son's life can't just be a sad story. Like there has to be, we have to bring something else. To this, but then it's like a double-edged sword because you don't wanna feel like you have to do like these huge extravagant things, which it doesn't have to be that.

Alexis: But we knew like we had to do, we wanted to do something in his honor because we didn't just want this to be like, sad what happened. It is sad, but we wanna make meaning of it too. 

Nicole: Mm-hmm. I totally get it. And it can be something as planting a tree or 

Alexis: Exactly. 

Nicole: Flowers whatever it is. We've, we've done some really.

Nicole: Meet things over the years just to honor and remember our son as well. So that's a lot like for your advocacy journey too, and just how things have kind of gotten started. And I love the fact that you were able to work with the hospital and, and find a way to better serve families than you were, than you had, like help the next person's experience and that's so meaningful.

Alexis: I mean, we were very [00:07:00] lucky in our whole hospital experience in terms of the care I received and the care our son received. But like everything, I don't wanna say everything was perfect because obviously we didn't have the ideal outcome there, but we know that everything that could have been done was done.

Alexis: And like we feel confident and at peace with that. But that last day we were there, it was just like, I mean, it was. The worst day imaginable. And our son's in surgery, it's a life or death situation. And we have people in the tiny, tiny, tiny waiting room with us that had like three chairs in the nicu, like coming in with their babies, like, oh, we graduated the nicu, we're going home.

Alexis: And there's just like success stories everywhere. And we are sitting there like. We don't know if we're making it out of here with, with Lincoln, like we don't know if he is making it through the night. And there was like a [00:08:00] very vivid memory for both of us where a woman was in there who was just a couple of days postpartum and had a C-section, and she was sitting in one of the chairs that she had every right to be sitting in.

Alexis: But. One of the doctors came in and wanted to update us on Lincoln surgery, and she didn't wanna leave because she was still recovering and she needed to be sitting there. And the doctor was like, I can't give them their information, like with other people in the room, like hipaa, the whole thing. And it was just like a whole, yeah, it was just like a thing that didn't need to be a thing, especially in that moment.

Alexis: And it wasn't until like. A few months post Lincoln passing that we were able to like really sit and process and be like, what could have been done differently? And like that's just the one thing for us, right? There needs to be a, there needed to be a space, like a safe space that, that people can go in.

Alexis: And so we're really proud of that, that, that came, came, came out in Lincoln's Honor. [00:09:00]

Nicole: I love that. And I love his name. 

Alexis: Thank you. 

Nicole: And that's something that will be there. You know, until the hospital changes those facilities, but it's something that will be, that will last, you know? And that's just a wonderful, wonderful tribute to him.

Nicole: You know, looking back at your pregnancy experience, you know, having preeclampsia help and a baby in the nicu, you talked about something that you would like to have had happen differently, that you could change, that you could influence, but were there any things that were, or warning signs that something was wrong during your pregnancy?

Nicole: Like what got you to the point of having an early delivery in a baby in the nicu? 

Alexis: Yeah, I mean, it was my first pregnancy, first and only. For the most part, everything was pretty normal. I had like some bleeding early on, but was checked out and everything was fine. Got checked out by like [00:10:00] every MFM, everyone and everything was fine.

Alexis: It was just. I, there was no reason, I guess for why that happened. And that was early on. And then one of my blood tests had came back like a little abnormal, one of the genetic testing. But it was like in the very borderline range. And they had done like extra testing to make sure to like rule out spina bifida and all of, all of those.

Alexis: Things. But everything was normal again. So my doctor at that point said like, we are going to make sure we like carefully monitor and make sure there nothing else. 'cause this could be like a warning sign, maybe down the line there could be something. But symptom-wise, I was fine. My blood pressure was always fine.

Alexis: Never had any issues. I was teaching at the time, elementary school, so on my feet all day and just like assume that. My swelling and headaches were from my class and working. So I got [00:11:00]to, I would say my symptoms started probably around like 24 weeks when I couldn't, like, wear shoes to work anymore.

Alexis: And I literally showed up to work in, it was right before Christmas break, so I showed up in like the Grinch slippers because shoes wouldn't fit me anymore. And I'm like, this is fine. This is normal. It just, I'm just standing a lot. And it also was like the holiday chaos. So it was like, just gotta get through the holidays.

Alexis: But then like none of my rings would fit. My hands were swelling and I kept saying to my husband, I'm like, my clothes fit me yesterday and they don't fit me today. Like something, this is weird. I feel like I literally just put this shirt on and now I can't put it on. So definitely noticed swelling overall, but again, first pregnancy.

Alexis: So I'm like, eh. It's fine. But what got me was Christmas night, so the night after Christmas we got home, like from family. And I just like couldn't breathe for anything [00:12:00] and just remember pacing our apartment the whole night. Like this is so, like, I can't, I, maybe it's a cold. I'm getting like, is it anxiety?

Alexis: I know I'm feeling really anxious about things and. My husband woke up the next morning and found me in the kitchen, just like hunched over completely, not able to breathe at all. So we called my doctor and I had a raging headache that I just kept saying was from crying. So my, we called our doctor and she's like I'm sure everything's fine, but go to the hospital just to get checked out.

Alexis: She knew nothing was fine. Definitely knew that things were not fine, but tried our best to keep me calm. But I would say the, the breathing was the biggest, like, something's wrong here. Like something's definitely not right. Like the swelling and the headaches and all of that was like alarming. But the breathing was really what.

Alexis: Was like, this is scary. Like, I couldn't lay down at all. 'cause I, I kept saying I felt like I was drowning if I laid down. And then sure enough, when we got to the [00:13:00] hospital and they checked out my lungs, they were all filling with fluid. So I guess it made sense why I felt like I was drowning. But yeah, when we got there, my blood pressure was like well into the two hundreds and, yeah.

Nicole: Mm. 

Alexis: And I just kept saying, I'm just stressed. I'm just anxious. I'm nervous thinking that. Yeah, just naive in the situation. Even to the point when like NICU doctors were coming in and we're like, if we have to deliver your baby, this is what's going to happen. And I'm like, okay, yeah, we're gonna make it though to let's get to 26 weeks.

Alexis: 'cause that was 25 weeks when I delivered. But by that night I was in an emergency c-section.

Nicole: It is so easy as a first time pregnancy to. Ah, this is normal, 

Alexis: right? And, 

Nicole: and we started calling it like norm normalizing bias. [00:14:00] And, and either like your doctors and your care team were on top of it and jumped in and, and help, but sometimes it's, it's easy to say, oh, that's just like part of pregnancy.

Nicole: Oh yeah, you're gonna swallow a little bit. Oh, you're gonna have like, you know, baby's big and not being able to breathe, but like, I'm so thankful that your team calmly got you in to get the treatment that you needed. As well. It's, it's so tough and that time of year is so tough. So what was, when's, what's his birthday?

Alexis: Lincoln was born December 26th. 2023. So day after Christmas makes the holidays very fun for us now. 

Nicole: My son's birthday was December 28th, so I completely understand. 

Alexis: And a holidays man 

Nicole: every year. It's just, we're, let's see, this year is 20. Sorry, I'm trying to math on live camera, what it feels like.

Nicole: And math and live is not my thing. 

Alexis: It's tough 

Nicole: when you're pressure [00:15:00] in 2005. So this year will be 20 years. 

Alexis: Wow. 

Nicole: And it still is tough. It's still tough. So, yeah. 

Alexis: I mean, I don't think it, I don't like to say it gets easier because I feel like I. It just gets more manageable, I guess. 

Nicole: Exactly. 

Nicole: Like exactly 

Alexis: isn't the right word.

Alexis: Because by no means is any of this easy, but 

Nicole: mm-hmm. 

Alexis: You have to keep moving forward. Also, not on 

Nicole: like one, one of the things I've always, you know, like, okay, building a legacy and finding out that is, but when I talk to families that have had loss, it's, it's also like any kind of loss. It doesn't have to be, you know, like losing a child.

Nicole: But the first year is always really hard. You don't know what to expect when those holidays, when the milestones hit, like you'd, for me, like I have a lot of anxiety and so it was just like you didn't know how you were gonna respond, how your body was gonna respond, what you were up for or not. And it's not that it gets easier, it's just like you're able to prepare.[00:16:00]

Nicole: Better every year. A little bit more like, okay, last year this wasn't good. This is what I can do to help minimize my own stress or those around me. I can have an exit plan, I can, you know, do all these things. And it, it gets to the point where it feels like it's easier 'cause just because you're better prepared and how you're managing yourself.

Alexis: You have like your, your little toolbox of coping strategies, the exit plan. My personal favorite is an exit plan. 

Nicole: Exit plan. Oh yes. Exit plan has been used. So sorry, family gotta go. And I guess I need to control the situation a little bit 'cause I don't know how I'm gonna respond, but I need to go.

Nicole: Exactly. Oh, that's, it takes me back. It takes me back to those, some of those hard, hard days. And it's. Like I said, it just doesn't get easier. Now I'm to the point where like some of the big milestones have hit like, oh, he would've been graduating high school. And you know, it's like those kind of things that have really hit, so you know, it's always gonna be a thing.[00:17:00]

Nicole: Yeah, it's always gonna be a thing. 

Alexis: The milestones are tough for just like the obvious, like. It would've been his first birthday. But I feel like the extra tough part for me personally, I dunno if you can relate to this, but like I was pregnant with so many of my closest friends, so now watching them celebrate their babies' milestones, when it's like, well, Lincoln should also be celebrating those same milestones.

Alexis: That's a tough one. 

Nicole: Yep. Got 

Alexis: it. That one hasn't gotten got any easier and I don't it getting easier. 

Nicole: No, it's still really tough. Yeah, that part is really hard. And people don't get it. No, they don't get it at all. How, how is that still hard? 'Cause there's one missing. 

Alexis: Yeah. 

Nicole: Yeah. There was a question I was thinking of.

Alexis: It will come back to you? 

Nicole: It'll come back to me. They always come back to me probably at three o'clock in the morning. [00:18:00]

Alexis: Just text me, I'll answer. It's fine. I'm usually up. So 

Nicole: I remember now. I remember now I came back. Okay, good. So you were teaching were you teaching, you said elementary? 

Alexis: Yeah, at the time I was teaching fourth grade.

Alexis: Okay. 

Nicole: Fourth grade. Oh, okay. Yes. Fun times. Mm-hmm. So did you after, did you go back to teaching after or is that when you decided to, to leave that and change careers? So 

Alexis: I taught for about 12 years before I got pregnant. Most of my time I taught middle school math for special ed students and then ended my tea the last couple of years teaching general ed fourth grade.

Alexis: I just felt like my, after I wasn't I post COVID. I felt like there was a part of me that my heart wasn't in it anymore in teaching. It just had, there had been so many shifts in the education world and for lack of better [00:19:00] terms, it just wasn't fun anymore. Like it, so much of the fun was taken out of it.

Alexis: I had like the most perfect class the year before I had Lincoln, and it was like the most perfect school year I could have ever asked for, and I still was going home every day being like. I don't know if this is for me forever. Like I cannot see myself doing this for 30 more years. And like, this is, this is a lot.

Alexis: So I was already like, toying with the idea of trying to find something else. But when you're a teacher, it's a lot of like, okay, I teach. What else can I do? Like my degree's in teaching, my master's is in teaching. What else? There's, there's nothing else for me to do with a teaching degree, so it was like, this is a good job.

Alexis: Like I, there's, I should just stay. So I was pretty, I was pretty [00:20:00] locked in with that. Then I had Lincoln and when we were in the NICU with him, every day it was like. I will never leave his side. Like there is no way I'm going back to the classroom. Like after everything him and I have been through, I am not leaving, leaving him.

Alexis: I kept joking that like he was going to be a Velcro baby, like he was going to be velcroed to me 24 7 and we were gonna make him a little. Only child who gets called like that gets picked on for being an only child. But obviously that didn't play out the way we anticipated. But after everything that happened, I was like, my heart there is just no way my heart is in this anymore.

Alexis: I can't go in and take care of other people's kids and with what I'm going through, like there was, there was no way. So I. Took time off. I didn't, so I had Lincoln in December. He passed the end of [00:21:00] January. And I was on leave for majority of that year, so that rest of that school year, so through June.

Alexis: And then that summer I got hired to do like some part-time remote work. And so I started doing that. Once I knew I had something else lined up, even though it was just part-time, we knew like we were gonna figure it out and make it work. I resigned from that. There also was just like that big piece of I, the thought of going back into my classroom, the last place where it was like before the whole world blew up and everything kind of blew up for us and our family.

Alexis: Like I couldn't put myself back in there. Like the trauma of that was just really hard. So I resigned from teaching. Like Jan July of last summer. And since then, now I work for a nonprofit publishing company full-time, so I work for them and I work in like the educational sales side of it. So it's nice to still be in the [00:22:00] education world, but on the other side and not necessarily in the classroom.

Alexis: And I'm definitely happy with my decision. 

Nicole: Good. I, I mean, it's so interesting to me to talk to folks and like I relate this as like, it's not people like, oh, it's life changing. Like mm-hmm. This is foundational changing. Yeah. Like, this changes who you are as a person, as a human being, how you respond to things all.

Nicole: It, it just changes so much that just can't be really put into words And, yeah. Like even this, like, okay, I've been doing this since 2018, but I was a promise mark chair for 10 years. I was a volunteer at the foundation. Before that I worked in corporate America, you know, and at that time, like I was, I was there when we lost our son and I was still in the same job when I left there.

Nicole: But, if what hadn't happened to me, if we hadn't lost Cooper, I wouldn't be in this position that I'm in today. I wouldn't [00:23:00] be impacting the people that are being impacted. You and I wouldn't be having this conversation if both of us hadn't had this experience. And so in a way it gives me. Some encouragement to know like, yes, I want him here.

Nicole: I'm, I miss that every day. Yeah. It's really hard, but I also acknowledge like how different my life has been because of him. 

Alexis: Yeah. And I feel like that, and some of it's in a 

Nicole: good way. 

Alexis: It's like, that's so true. And I feel like that's what I was touching on, like right when we first started. Like I never could have seen myself down this path.

Alexis: Mm-hmm. Like ever. But that was also a big part of me resigning from teaching was like. I know my passions have changed now, like my mm-hmm. Passion isn't in the classroom anymore and there's things that I just want to put more of my energy into and I know if I go back into the classroom, I won't have the like capacity or the space to be doing what I wanna be [00:24:00] doing.

Alexis: Like I know if I went back in the classroom, I wouldn't have been planning this promise walk like my, the. I wouldn't have had the capacity to do that. But it really is like crazy how like one thing can just change your whole trajectory of life. Mm-hmm. Like completely. Mm-hmm. But like, I also, for me, I don't know if you relate to this, but I felt like I needed a change where people weren't looking at me as like, there's the sad person whose baby died.

Alexis: And a career change definitely helped with that. I mean, maybe some avoidance also. But like I would run into coworkers like in the supermarket or at a store and they just start crying when they saw me. And it's like, I, number one, I'm sad enough, I don't need to comfort someone else when they're cry, crying that part.

Alexis: Mm-hmm. And like I just don't wanna be known as the sad person. There's there. I just don't[00:25:00] want that to be, my whole identity is that like, oh, there's Ms. Lavacca, her baby died last year. Like, I just, mm-hmm. I needed, I needed something different. I needed a clean slate. 

Nicole: Totally understand. We have somebody else on our team that was a teacher and after her, stillbirth. She was like, I couldn't teach anymore. No. You know, and I, I completely get it. And this is also a time when teachers are leaving the field like crazy and just so many changes. I completely understand. And glad you found something that could still like, connect and tie in without having to be in a classroom.

Alexis: Exactly. And like that was my whole thing. I'm like, I still wanna stay in the education world. Like I'm still invested in education. I just need a different perspective of it. Like, I need something, I need to be on the outside of it, not the mm-hmm. Not the front line of it.

Nicole: So and we talked a little bit about like not, we talked a lot about like your, your pregnancy experience and, and what happened there. I wanted to talk about, support. [00:26:00] So, you know, has this, how has this impacted you mentally and emotionally? I mean, it's a huge, like I said, like the, your per your whole thing, your whole foundation is who you are.

Nicole: Changes. Yeah. What would you say has like, maybe impacted you as well? 

Alexis: I mean, anything else? I would say prior to my pregnancy, in terms of like mental health and like my emotional wellbeing and, and things like that, I would say I was fairly stable. Would like I never really struggled in that department which I know I'm very privileged to say that.

Alexis: But. After was definitely not the case. I remember standing at Lincoln's NICU bed, like early on, one of like, probably like the first week that he was in there. We were in there for 29 days, so like the first [00:27:00] week and the social worker came over to me and was like. What are you doing for yourself?

Alexis: Like, we need to make sure that you are okay. And I was like, nothing. And I, I am not even healed. I'm rolling out of bed every day to get in the car, going up and down the stairs, like still with my C-section, staples in and getting here to sit with Lincoln. And I would just get there and just cry.

Alexis: All day, the whole day. And she was like, have you talked to your doctor about medication? I think it might be something to think about. And I feel like it was a tough, no pun intended, tough pill for me to swallow. Knowing that like, all right, I need to, I need some help in this department now. Like I need to.

Alexis: Maybe I can't do this just on my own. So I was thankful to have that open conversation with the social worker, but then also my doctor who was able to prescribe [00:28:00] me some medication to mellow me out and calm, calm things down a little bit. Some very happy about that. But again, like I had the prescription for like a week before.

Alexis: I was like, I. Can't take this. Like I feel like I shouldn't take it. I feel like there's a stigma. I've never had to think about taking something like this before, but finally it was just like, what it, like what's, this is silly. There's no, there's no harm. So started taking that and then that definitely has helped me.

Alexis: It also, I feel like was tough for me to like process, like, okay, I am definitely dealing with. Depression and all of those things that, that come along with it. Because it was like, I'm still getting out of bed every day. I'm still getting out of bed and like doing what I need to do. Like I'm getting up, I'm showering.

Alexis: I am like, we're doing everything we're supposed to be doing. And I feel like there's that stereotype in your head of like, oh, if you're depressed, you're just. Out for the count. Like you're in bed, you're not getting up. And like that goes for when we were going back and [00:29:00] forth to the NICU and after losing Lincoln, because it was never like, I just need to lay in bed all day and cry.

Alexis: So it was. I feel like it was tough for me to like accept that like, this is still a struggle. Like even though I'm not just laying here and being miserable, just because I can get up out of bed and like function doesn't mean I'm okay. And then we, my husband and I had our first therapy session ever.

Alexis: The day after Lincoln's funeral, and that has been like huge for us. Especially for me. Like I absolutely adore my therapist and I feel like she has helped me cope so much. But again, like something I never thought I would need. Like I never saw myself as the person, like taking medication to help with their mental health and like going to a therapist regularly.

Alexis: Like it just never. I never thought of myself like that. Nothing against it. I just didn't think I, I guess I never felt like I needed it, but then it was very clear I did [00:30:00] need it. Once all of this happened. 

Nicole: Sometimes she was like, just need to be given permission. Like it's okay. 

Alexis: Oh, 

Nicole: it's okay. I mean, I'm, I'm still on medication because if I don't like the times I try to not be on it.

Nicole: There's like this fire breathing dragon inside of me. 

Alexis: Yeah. We need to keep that piece tamed. There's Yes, 

Nicole: yes. And she likes to come out and like just annihilate everybody if I'm not, so, you know, it's for everybody's best interest. 

Alexis: Yeah. That's, I feel the exact same way. Like this is for every, everybody should be thankful.

Alexis: This is happening. 

Nicole: It's like public service. 

Alexis: Exactly. 

Nicole: Yeah. And it's, I mean, it is, like you mentioned earlier, like having tools in your tool toolbox, it's taken me so long to recognize where those tools are. And so some of 'em, you know, naturally, some of 'em, I don't know where I picked them up. And some of 'em was like, oh yeah, medication is a tool, just like therapy is.

Nicole: Yeah. You know, and so, and it's okay. It's okay. Yeah. If it's a short time, it's okay if you don't, and it's okay if you're on it for. [00:31:00] TBD, you know, it's over. Yeah. 

Alexis: And it's like, like I said, there's such a stigma against it, but now like, like there just shouldn't be if you, you should be able to get the support and the help you need.

Nicole: Mm-hmm. Yes. I'm so glad that you're, you found those support avenues and, and things like that. Has there been a, like was there a moment where you felt particularly like seen or heard? 

Alexis: Hmm. Lemme think. I feel like not like, I don't wanna say not specifically, but I don't feel like at any point. Of this journey.

Alexis: I don't feel like I, I don't feel like I was not heard. Like I feel like throughout this whole journey from like the start of getting pregnant until where I am now and like [00:32:00] continuing, I do feel like I am so lucky and blessed with the people I'm surrounded by. And I know that that's a privilege that not everybody has.

Alexis: I would say. There was a few, there was one instance where I like reached my breaking point of someone saying, everything happens for a reason. And I lost it. And I would say it was the first time, no, I wouldn't say the first time during the journey, but like, I got really angry, like really, really angry at it.

Alexis: I think it was a matter of like the buildup of so many people saying those things of everything happens for a reason. They're in a better place. You know, the list the really terrible list that no one means intentionally, but it hurts. And I really like laid it out there how I felt and I to this person, and I feel like it finally got [00:33:00] across and things have changed since then.

Alexis: So I definitely feel like at that moment I was heard, and I may, I don't wanna say I was misunderstood, but maybe things weren't being accepted the way my husband and I were handling our grief. And I feel like I finally got through at that moment. Because some people like to just push these things under the rug and pretend things never happened and don't wanna talk about it.

Alexis: And from the start we were like, that is not going to be the case with us. Like Lincoln's our son, like his pictures will be up, we will talk about him. And that's just how it's going to be. 

Nicole: Absolutely. And I, I think too, that everybody grieves differently. Yeah. And so it's, it's hard to remember that, but like everybody.

Nicole: Does it differently And you know, we listen and we don't judge like we have to, but, 

Alexis: but I'm probably judging, [00:34:00]

Nicole: I am probably judging. I know every time I see one of those I laugh. It's like I'm definitely judging. But when it comes to people like grieving, like yeah, it's just everybody has something different and totally.

Nicole: Having to be okay with that. And it's really hard for people to hear if they're, like, they're upset with somebody who's not grieving the same way they are. And I'm like. You know, everybody's different. Yeah. And like, I've definitely had to just get over the fact of like, this makes people uncomfortable.

Alexis: Like nobody wants to talk about a baby who passed away, but like, it's reality. It's not, this is, this is our real life. And if you can talk about what your baby is doing now, I wanna be able to still talk about my baby too. Mm-hmm. Yep. The hardest thing is when people ask, you ask like, how many children do you have?

Nicole: And it's always been hard. Oh. So I, it's still still hard. And I'm like, what do I say? I know. So I [00:35:00] literally, like an hour ago, someone I follow posted literally that exact like thing on their Instagram story. And I reposted it in my story. So it's funny you bring that up. But, I travel for work now and I literally was, I was just in North Dakota for work and was sitting in the hotel bar with like.

Alexis: By myself and a couple of other women like sat next to me and we were all like, we were just chatting. And that question comes up and it's always immediately like, all right, well I'm totally about to kill the mood with this. But I'm not gonna lie, but I'm going to totally just throw them for a loop by saying what I'm about to say.

Alexis: And you really never know the reaction you're going to get. But, mm-hmm. I was thankful that the two, two ladies I was sitting next to were very open and accepting to, to talk about things. But yeah, that's a tough [00:36:00] question. You really, and it's a question you don't think is tough until you're in a situation like this, I feel like it's the first thing you ask new couples you need.

Alexis: You met like, oh, how many kids do you have? Like once people enter that age where it's like they could be have, they could have kids, like they're age appropriate to have children. It's like a normal conversation. But yeah, that's a, that's a tough one. 

Nicole: I'll say out of all this, my mom has learned to stop asking, like young married couples or newly married, like, when are you gonna have kids like.

Nicole: She doesn't ask that anymore. 'cause it's, it's also one of those like, 

Alexis: yeah. Oh, 

Nicole: so what are you gonna, when are you gonna think about that? It's like, you don't know what's happening behind the scenes and the struggles. Yeah. That happened. Yeah. It's, it's always so hard to answer some of those questions and, yeah.

Alexis: And like, like I said, said, and, and I've, and I've, I've had times where I'm like, I don't wanna make this person uncomfortable. Like, depending on if it's like a quick passing and I'm like, you, like it's not worth it. Dealing with the fallout from [00:37:00] that. And then I'll just like, I know he's here and I remember him every day.

Alexis: Yeah. It's like, like I said, like anytime it comes up, I'm always like, oh man, I'm about to really lay it on. Like, that was a big part of like my transition out of teaching too, like when I was interviewing for new jobs and. It was always a question was like, well, why are you leaving teaching? Like what are you looking to, why are you looking to transition?

Alexis: And I am so thankful that like where I landed now where I'm working was so appreciative of like my openness and I was like, I'm not sharing this for like sympathy or to get. Anything like that. This is strictly like, this is such a big part of me, and it is such a big part of why I am making a change, and I'm thankful that they appreciated that vulner vulnerability.

Alexis: But you said you really have to read the room because you don't know, you don't know how [00:38:00] people are gonna take it. 

Nicole: Yes, for sure. Well, you've done I mean, some things, I mean, amazing, great things like you're, you're finding. A new passion a new purpose. And one of those things being like the promise walk and, and getting certified with MoMMAs Voices as a patient, family partner, what has it meant to you to use your voice and to be able to share about Lincoln?

Alexis: I feel like, like I had said earlier, seeing people. Join our walk that like we don't know who you are. Like I have no idea how you even heard that this is happening. But just knowing that we're reaching other people is so huge to me. And also like. The way I had phrased it to the hospital when we were talking about like creating that safe space, it was like, I'd love to sit [00:39:00] here and say that nobody else is going to go through what we just experienced.

Alexis: Like I would love to sit here and say, no woman's ever going to get preeclampsia again. And like no baby's going to have to have. Life, like hopefully lifesaving surgery in the nicu and every parent's going to be able to walk out of the NICU with their baby. But like, that's just not the reality. So I feel like my whole purpose at this point is just, what can I do to make it, don't wanna say better, because it's never going to.

Alexis: Be a good experience, but I always say like a little bit more comforting and a little bit more comfortable for people that are, are going to have to go through what we went through. So what can I do for them? 

Nicole: Yeah. You wanna, how can you make their experience 

Alexis: Yeah. Better because it's going to happen like it.

Alexis: It's un, it's the [00:40:00] harsh reality that like, again, like I wish I could say this would never happen again, but it is going to, and I, if I can make it a little bit more comfortable than what we had then I feel like success. 

Nicole: Mm-hmm. What would you say to someone who's just like considering taking this journey and, and considering becoming a MoMMAs Voice patient family partner, any words of advice for them?

Alexis: I would say go for it. I feel like this, I got it in my email to like. I feel like it was a while ago now to, it wasn't that long ago, but it feels, it feels like forever ago. Time is a weird thing in a grief journey. Everything feels like yesterday or like 20 years ago. I would say just totally go for it.

Alexis: I feel like I signed up really not knowing what to expect and what to come of it, because again, this was a whole new world for me. And I threw myself in pretty quickly post. All the [00:41:00]trauma. But I would say go for it. And it can be such a healing experience, like being able to meet other people that are, have gone through similar, even if it's not a similar experience to you, but have gone through something else that you can connect with them.

Alexis: And just knowing that like you're making something meaningful out of your story. So I would say don't hold back. Go for it. Yes, it's always being able to find people that really have walked your walk ahead of you and can help you, guide you through that journey is helpful. So we are here. We're here and we're thankful to have a space where we can and help others, so, 

Alexis: totally.

Nicole: Well, is there any last thing to wrap up with? Any last thing you wanna share with anybody or leave them with? 

Alexis: I just, I don't, I think like what we talked about is so big, how it's like you really don't know [00:42:00] where your life is going to take you and what is going to happen. I think about like my journey into motherhood and how I would've expected to have my baby, take my baby home, raise my baby, go back to work like your typical.

Alexis: Journey that you expect motherhood to be and like now that's all up in the air. Like, I don't know, but I'm still, my journey through motherhood like is very different than what I expected it to look like. So I feel like just you have to accept that, like things maybe not accept, but like things don't always go the way you planned and you never know where you're going to end up and what's going to happen.

Alexis: But not everything is meant to be because, and not everything happens for a reason. I can't say that anymore. 

Nicole: Well, thank you Alexis for your time today and for sharing with us and everybody. Lincoln. I am right there with you and I know [00:43:00] your promise walk is gonna do some great things and excited to see how much afterwards that it's just added to your healing.

Alexis: Yeah, we're really excited September 20th. 

Nicole: Awesome. Well, great. Thank you 

Alexis: so much. 

Nicole: Thank you.