TOS of Infant Loss, Part 2

Content warning: infant loss

Part 2 of 2 with the wonderful Emma Mitchell. If you haven't listened to Part 1 yet, start there first.

We pick up right where we left off, inside the NICU, where Emma spent every single day with her daughter Evie, who was born at 23 weeks and 6 days. We talk about the moment everything shifted, the decision she and Devin made together, and the 43 minutes they'll carry with them forever. We also talk about her brother Gord meeting Evie, the Ottawa Senators showing up on the most unlikely of days, a guitar, a playlist, and a room that felt a little like home.

But this episode is also about what happens after. How pickleball pulled Emma back out into the world. The advocacy work she's done with CHEO that's already made real change for NICU families. And what it looks like to keep being a mom to a baby who isn't here anymore - because she is still very much Evie's mom.

Emma is a pickleball player, a guitar player, an open mic host, an advocate, and simply one of the most generous humans I've ever had on this pod. I'm so glad she shared Evie with us. x

@the_otherside_pod

Transcript

SPEAKER_01 0:01

Welcome to the other side pod. I'm Needine. We're not experts, we're just humans having a human experience we think we can learn from, or relate to, or laugh at, or cry over. So hit download, dive in, and hear how folks found themselves on the other side. Sliding in here really quick as a reminder that this is part two of a two-part podcast with Emma Mitchell. Emma is sharing with us her story about Evie. And as another reminder, this is detailing infant loss. So if this isn't the right time for you to listen to this, then please set it aside and come back to it at a later time. I will hand this back over to Emma, who is telling us about Evie's last moments. Thanks for listening.

SPEAKER_00 1:07

Um and then what happened for the next couple days after that is uh family got to come and meet her. Um in the NICU. Yeah. So at the general, um, you get four set visitors that can come and support you. And at the time, uh at the general, so we were at the general for the first 70 days of her life. My mom was one of the visitors. Devin's parents were two of the visitors, and then my fourth visitor, my dad actually said to put my aunt on the list instead because she was going to be able to come to the hospital to help me more often than he could. So he I really like it that one like chokes me up because, like, you know, that's his his literal granddaughter that he didn't get to meet um until when we transferred over to Chiyo. We were there during viral season. There's no visitors, so I went from having people that could support me while I was at the hospital to having no one that could come with me. Wait, is this because it was COVID?

SPEAKER_01 2:03

No, it's just viral season.

SPEAKER_00 2:04

No, it's just normal, just normal viral season.

SPEAKER_01 2:07

Now I will say sorry, this is 2024.

SPEAKER_00 2:09

Yeah, this was 2024. So it's just the protocol to keep less people from coming in and out, especially like I understand too, like ChiO people are coming in for surgical fixes. This is high-stakes stuff that's happening. Um, so like I understand, but at the same time, a lot of the people that are at ChiO for the NICU aren't there for a long time. But for us, we were there for a long time. So, you know, and we would have been there longer if she had lived, we would have been there a few months more pop probably. Um, so I spent 48 days at ChiO. Um we were granted some one-off visitors, so my grandmother got to come meet Evie, her great-granddaughter, uh, and my dad got to come as well because he hadn't met her yet. So they both did get to come before the final weekend when she was meeting everybody. Um, but it it wasn't it was a hard transition to go from having people that could come when they were available to not having anybody be able to come, especially for a long-term stay like us, because again, like I was there every day. Um, and it it it it does take a toll. Like it it it it definitely takes a toll eventually. Um but in that last weekend, um, like my cousins were coming, my aunts and uncles were coming, Devin's family was coming, his brother came, some some close friends came to meet her. Your brother. It was really nice, yeah. It was really nice. So my brother, we weren't sure at first if he was gonna be able to or not. Because like the NICU is really busy, there's a lot going on. My brother's a bit unpredictable sometimes. He can make loud noises or like stomp or do different things, and like noise is not great for for babies in the NICU. So I wasn't sure if that was gonna happen. But for our last weekend, they they moved us into one of the ironically, it's one of the go-home suites, which is not what was happening, but it's a bigger, it's a bigger room and it's private. It's got a sliding door and stuff like that. And because of that, I thought maybe Gordy actually could come meet her. So we I talked to the NICU nurse, and she she was so lovely. Our our our nurses were so so lovely, and especially um the ones in Navy's last weekend were just so wonderful. She helped make everything as successful as we could for Gord to come. So we we went around, we found anyone's like drinks, drinks, canned drinks, water bottles, all that. We put it away. Any snacks that were out, we put it away because we didn't want him to lunge suddenly for anything. Um we closed all the doors to all the other pods, we kept everything really um, and then she was in the room for us with us when he came to visit, and he came to meet her, and uh he like touched her little toes. It was so cute. And I I kind of I watched him kind of take in the surroundings because like you know, she's hooked up to machines, she's in a thing, like there's all these screens everywhere. And back in June, uh, Gord had actually spent some time in the hospital because he um with his OCD he picks a skin, but he ended up getting an infection that he needed to stay overnight in the hospital for. So he I could see him kind of processing, like, oh, she's in the hospital and she stays here too. And and that must mean she's sick, because like that's what happened for Gord when he was there. Because up until this point, if you had asked Gordy, how's the baby? He'd say, Baby's fine. Like he didn't really, you know, like, you know, she's somewhere, and I see pictures of her, but I was watching him kind of take it in, and and and he looked somber for a minute as he saw all these, you know, machines, and I had said, Yeah, baby, baby lives at the hospital, baby's very sick, um, baby's baby's not coming home. Like, um, so for him to kind of take that in. And uh after she had passed away, my mom was riding into program with my brother, and she and she was telling him that Evie had died, and uh he he looked out the window and he was he was looking really sad. And when they got off the para transpot, there was a piece of chalk on the ground and he picked it up and he wrote sad on the on the pavement, which like is a lot, I gotta say, like my brother doesn't say a lot, and when he does, it's just like whoo. Um but I was really thankful that he he did get a chance to actually meet her while she was alive. Um because I I think it also like for him, I think it helped him process that she talked, yeah, also because like the the next time he saw her, it was when she was in her coffin. Um and he he kind of you know like like touched her and then realized like you know that she's not she's not alive anymore, and he he called her sleeping beauty, which was like devastating, really devastatingly beautiful. Because again, he doesn't say a lot, but when he does, oh my god. Um and then the next yeah, and then the next time after that um was for her burial, and now the box was closed, which you know he remembers, okay, that's the box that she was in. He helped carry the casket. Uh but I think again, like having that she is alive, she is dead, I've put her in the ground, like it kind of it completed the the the circuit there for him to understand. Um for him to understand and not because it because it's hard to say, like, you know, would he just ask about her later or wonder where she went, or you know, like but he really got to see exactly what happened. The next time we came to the cemetery, he did not want to get out of the car, like he was he was upset. So but again, like he had it was I was grateful that he kind of got to see all of the parts, and then also that he got to meet her while she was alive, and and it was just so lovely. Yeah, um, and I I appreciated too everyone did everything they could to make that that visit successful because like it was a good thing, and it was it was so successful, like it was and we kept it brief. I didn't want to push it, we really kept it a brief visit, and then we went to the the Ronald McDonald family room and had some Rice Krispie Squares because we're like we just need to like you know do make sure that it's successful for everybody, and yeah, we actually the day that she died was um and I I talked to my mom about this before because it's it's a very absurd thing to be choosing the day that your child is gonna pass away. She chose it, um sort of. Um I I'll say that the the neonatologist kind of solidified for me that we didn't choose when she was gonna pass away because she would tell us when that is, but because of how uh like severe it was, we kind of knew that in removing technology at this point would mean that she would die shortly after. So it is a it's a kind of absurd feeling to be choosing the day that your child's gonna pass away. Um and that day happened to also be my mom's birthday. So I had asked her, you know, is this gonna be too upsetting? Like, should we, you know, we could do a day sooner, which we'd get less time, and that kind of sucks, or we could do a day later, but I was really worried that I wanted to make sure that we found the balance of like it not being too late, because I didn't want either one her to die suddenly, or two, for her to like suffer, like if something got worse, or you know, like so it was a really delicate choice of of when. Um, and she my mom originally, when I was pregnant, was calling Evie her birthday baby because again, she was due on the 5th, my mom's birthday is the 10th. My mom kept saying, You're gonna keep her in until the 10th so that she can have the my mom doesn't like her birthday very much, so she was like, It'll be her birthday, and then this is you know my birthday baby. So it it was this kind of again, like weird, like full circle of her reclaiming that birthday baby label, but in a really different way. Um and then the other thing that happened that day, which it's really absurd to think about as well, but it just I don't know. For me, I feel like it was again like the universe telling me I made the right choice, and here's it solidifying it for me. The Ottawa Senators were visiting Chiyo and Roger Nielsen Children's Hospice that day. Um hockey was really important to me and my dad. I watched hockey with him growing up, I learned all the NHL teams, like we used to watch hockey. We go to hockey games sometimes and stuff, and I would have loved to take her to a hockey game with my dad someday. Uh, and the fact that that couldn't happen, but the sins were were there, they were there to like see us. So again, like and it's so funny because I remember thinking to myself, they're gonna go downstairs and ask if my parents would like to meet the sins, and my mom's gonna be like, What the fuck? Like, no, I don't want to meet the senators right now. Um, but for me and my dad, I was like, this is the special thing, this is the special thing that's about to happen. And so my dad came upstairs, and again, like we chatted with some of the players for a bit. Um, and we took some pictures, they gave us some jerseys, and same thing at Chiyo before we even transferred over to Roger Nielsen Children's Hospice. Um, two of the players were visiting the NICU, and actually, one of the players, I I want to say I think he got traded, I don't think he's with us anymore. But Perron, uh, his daughter was at Chiu while we were there, so they also had a NICU uh experience for different reasons, but um, we were actually at the NICU at the same time, so he was back and visiting uh the unit with one of the other players, and then the other players were over at Roger Nielsen Children's Hospice. Um the other thing too that was that was nice and kind of special is that the Friday night they didn't think Evie was going to be stable enough to transfer to Roger Nielsen, um, because over at the hospice they have two apartment suites, so it's almost like you can have a homecoming. They also use it for respite and stuff and and different things, but we were able to have this homecoming to like an apartment with normal furniture and a bed and you know a couch, and they put a Christmas tree in there for us. They had a guitar in there for me, so I got to sing to Evie, like I play guitar for her, which was really special. Um, music was something that was like really, really uh central to our our kind of whole journey. Um, I sang to Evie every day.

SPEAKER_01 11:56

Did you bring a guitar to the hospital when she was in there?

SPEAKER_00 11:59

Not not to the hospital, because I get like the general is open concept, so you have all the other babies are in there too, and then same with like Cheo, there's little pods and stuff. So I never brought my own in, but but at the hospice they had one for us, so I did I did get to play for her there. And we had put music on for her and stuff, and like when I was pregnant, I went to a couple concerts, so she was there. She was like kicking away at Mother Mother and Kathleen Edwards and all the good stuff. Um so yeah, and then when when she was passing as well, like once we removed the technology, um they had kind of prepared us for the state that she was in, she would probably only last like moments with us without the tech breathing for her. Um and they said maybe minutes. They said maybe minutes. So I was really, you know, like they prepared us for like it was gonna be very fast. She actually stayed with us for 43 minutes. Um and for the first few minutes, like they they took some pictures and videos and stuff for us. Um and then there's also a nurse monitoring, because like even though they took the breathing stuff out, like they were still supporting her with like pain management and stuff, so they were watching to make sure she didn't need more pain management, and they gave her a little bit more, and then uh I was kind of panicked a bit because I couldn't really see her. Like the way that I was holding her, I was trying to comfort her, but I couldn't really see her face. So I was like, is she okay? Is she okay? Um, and then I was like, Oh, somebody giving me my phone, I'm gonna put music on for her. So I put her playlist on, and uh the palliative nurse said immediately, like she just was like calm, and so we listened to some music together um for her last like like moments, and I was singing to her and kind of like petting her hair and you know like telling her it's okay, and that part that part was really like really really difficult, and it's it's hard sometimes too because again, like music was so central for our journey. So sometimes I hear these songs, the ones that either I sang to her or the ones that she listened to when she passed, and like you're just hit like a truck, and other times I can listen to it and I'm like so fine. So but uh yeah, it just I don't know. It's it's really it's a really bizarre kind of world to live in too where I feel so grateful for how everything unfolded with her, but also it's it's so heartbreaking that she's not here.

SPEAKER_01 14:22

I was so sorry I had to go through that.

SPEAKER_00 14:25

Yeah, but even like you know, when we were the night that I got to hold her for the first time, another baby was being born, and it was a really it was a really traumatic birth. The mom wasn't doing well and the baby wasn't doing well, and suddenly so I'm holding my baby for the first time, and all the nurses are now gone. There's just one in each room because they they were needed elsewhere, so it was really it was a really surreal experience to be holding my baby for the first time and also being so nervous because we've only seen her in a box so far, right? So we're I'm like, oh my god, where is everybody? Where'd everybody go? Like, I guess I'll just keep holding her because you you want to try to hold for at least an hour, um, because it's it's a lot to transfer them and stuff and also the benefits they get from being on your skin. Like it's you try to you try to get as much as possible, as much bang for your buck, because of there are there's risk and stuff involved, but the other baby, I think about him a lot. He was only in he was only in our unit for I think two and a half, three days. Didn't make it so and that I hoped I hoped that he had gotten transferred to Chio. And when we got to Chiyo, I immediately checked the the list to see if he wasn't and he wasn't there. So I think I think a lot about how how lucky we are have gotten so much time with her when nothing in the NICU was promised, and like, you know, those those other parents they got two days and that's it. Um and at that point they couldn't have even necessarily held him right away or anything either, because he was born super early, just like Evie. Um I went through Roger Nielsen Children's Hospice has um perinatal loss supports, so they had like a closed group where you um go for nine weeks with other parents and you kind of get to share about your experiences and stuff, and everybody else in in in my group um didn't get any time with their baby at all. Really? So because there's like there's a lot of different reasons for that, but like some some babies came too early, right? Like before viability, um, some uh had restrictive growth, um, some just were still born at full term. Like so it's just it's it's a really it's a really strange kind of gratitude to feel, but I do I do feel so lucky in how much time I got to spend with her and then we got to know her and see little bits of her like personality and stuff, and you know, because that's not what everybody got. Um yeah.

SPEAKER_01 16:47

You know, started sharing about Evie, I think pretty quickly on social media, and then you made her her own little account, right? Yeah. Um what prompted you to do that?

SPEAKER_00 16:59

So there's another mom who when I was staying in the hospital and I was just like looking for something. I was looking for that beacon, I was looking for my tether, I was looking for someone somewhere to like ground me. Um she had had her son at 22 weeks, and she was sharing he's called Warrior Sing. Her son's name is Singh, and she was sharing, she had a very similar situation where she had short cervix, um, had an infection, she got airlifted out of Guam. Like, she her her husband's in the military in the States, so that they're they've been posted kind of all over the place. But she shared her journey so openly, and it gave me hope. I'd actually messaged her and said, like, I'm in the hospital right now. Like, I'm I'm so thankful you shared your story. I hope that you know things are gonna work out for us. And we actually still talk today. She sent me a really beautiful gift after Evie passed as well that was really thoughtful. Wait, how did you find her? Just on Instagram. What did you search? I think I was I think I was searching like 23 weeks, 22 weeks, micro premi, like that kind of thing. And I I found hers was one of the first accounts that I found. There's actually a couple other accounts I followed later who had kids that got trach, because I was like, okay, I gotta see like trake life. Because before, like, and actually really early on when we had had a discussion about what we wanted for Eevee and what was okay and what wasn't okay, Trake was on my nightmare list. Like that was that was a nightmare to me. I was like, that's a that's that's not a life, like and I have to say, like, those those opinions really shifted the more that I learned about some of the families that are living trake life with their with their toddlers and seeing like them graduate from it and and you know, like de get decannulated so they don't have one anymore and just go on to live normal lives and stuff. And also, I will say some people have trach for their whole life and they also live a fulfilling life. But again, it's just it's you don't necessarily know that world until you know that world. So for us, it was a nightmare. Like I was telling, I was telling our nurse practitioner, you know, four weeks in, they're like, Do you think she's gonna need a trake? Like, this is bad, and they're like, Don't think about that right now. That's so far down the line. We don't trake a baby to like, you know, don't even think about this right now. Because again, at that point, it shouldn't have been a thought, but it just I I kind of experienced a bit of knowing and understanding too much, unfortunately, which made it really uh it made me have a lot of confidence in the decisions I could make, but it also made every decision way a lot heavier than if I maybe didn't understand as well as I did. Um, a lot of the nurses and doctors and stuff said they had never really had a parent as like on it as me, and like who understood these things so much, and and I really I mean I I made it my full-time job, like I really did. I I put everything into learning and knowing everything I possibly could so that I could make the best decisions for her. So you start me like rest, yeah.

SPEAKER_01 19:53

It does help me rest a little easier knowing that, but um, so you you needed a tether, which I love that I love how you say that because I feel the same way when I go through something challenging. It's like um or just something diff different or that shakes my world up a little bit. I look for somebody else to I don't know how to say it. You said it more eloquently than I did, than I do, because I feel like I'm like, it's not that I want to be validated, but I almost want to be like has this happened to somebody else? Even though I know very well it has, it almost when you when you find yourself in something that's so jarring, you know logically you're not the first, nor last, nor only person that this ever happened to, but you feel so alone. And I feel like when I find somebody that can say what I can't get, wrap my mind around, or understand, I all of a sudden just like it's calming for my nervous system. It doesn't make the thing any easier, it makes me believe I can survive it, maybe, or it um helps me know that somebody else had this experience and they're on the other side of it, and then I'm like, okay, yeah, there's hope somewhere. And so in starting her account, you hoped to be that for somebody else.

SPEAKER_00 21:15

Yeah, and I think too it it it helped also just for like people around me to get updates of like how she was doing and see her and all of that, but but just like like Eileen was so wonderful. Eileen is for you and like she's Singh's mom, yeah, yeah. Um that I hoped that I could be that for someone, and actually it did happen where people did message me and and say like this is what's happening right now. I really hope, da da, and and it didn't obviously uh when I started sharing, I didn't think that she was gonna die. Um so it kind of transformed a bit in continuing to share after she. Past because uh some of the messages that I've got from folks before is that they were like so glad that I kept sharing because a lot of the time people don't like especially I'll say it's it's really tricky and NICU and like micropremi spaces because what people are looking for at that time when they're searching these things is hope. And unfortunately, I think when you when your baby dies, that's not necessarily hope that you can offer to someone. I think that there's still a lot of value in what our journey was and what we experienced and what we can still help people with while they're in their journey, but they wouldn't necessarily be seeking out the cases of the babies that passed away. But I did get a lot of positive messages from people saying that they were so glad that I kept sharing because a lot of the time people just kind of disappear after that. But like that this is a thing that does happen, and it happens more often than people would think, I guess. Um now I'm gonna say Evie's is a little more atypical because it doesn't usually happen at that point in the journey, like that's not the norm. Um but again, like she could have she could have passed away at any point during our journey, so yeah, it just and I guess too, like even like when I named her her Instagram, it was Evie Occasional Rain, which is a song by the War on Drugs that I found a lot of comfort in, and and kind of like his song is actually about his experience with like depression and and kind of again like seeing it from the other side after. So I had this really strong connection that I I felt like the NICU was gonna be our occasional rain, but eventually we would see it from the other side, and unfortunately the other side of that really transformed into something else, and now I kind of my relationship with that song has changed as more of like instead it's my relationship with with grief and like kind of making it through the thick of of grief, but eventually seeing that from the other side, which I'll say like grief doesn't ever go away, it just the way that you carry it is different. So um, you know, I feel like when you when you start carrying your grief, you're carrying it with your arms straight out, and eventually that gets really hard to carry, it's really heavy, but then you realize that you can put it in your pocket and you don't have to keep your arms straight out. So like I still have it with me, but it's not weighing on me as as heavy as it was. And there are still days that I think it just rears its ugly head, and like I I had one last week in the car where I was like just suddenly the voice in my head was like, Evie died because you were never supposed to be a mom, and the universe was course correcting, and if you ever have another baby, that's gonna happen too because the universe will have to course correct, and like brains are so mean. Yeah, so from that I was like, Okay, uh hey brain, I'm not listening to that anymore. And I drove to the cemetery and I sweeped up all the leaves off her marker and I rearranged her stuff and like spent some time with her before heading home and and can kind of like redirect myself, but it's still it does still happen where there are some days where grief is really heavy, or like you know, the wrong the wrong song comes on at the wrong moment and you're just like but most of most of the time most of the time at this point now I feel like more in a space of like sharing Eevee and and her gift because ultimately like her life really was a gift to us and to other fam like NICU families too, because um after she passed I kept um pursuing some like advocacy and stuff. So while we were at Chiyo, unfortunately they didn't have the right kind of chairs for us to safely hold Evie. Um they had a lot of rocking chairs, which for an into beta baby, you don't want to be holding them in a rocking chair. So I'd be holding her like stiff as a board trying not to be surface again, like you're like exactly. So I'm just like, oh my god. Um, and it was just so stressful. But from at the general, they had these beautiful like kangaroo care chairs that were specifically made for holding babies, into beta babies, and you could angle it, you could flatten it, you could lift things, like it was just you know, they had the equipment. So to go from having that and getting to hold her every day to staying at Chiyo, where I think before her last weekend, I only got to hold her five times, and and that was really difficult. So part of my my after journey was kind of continuing to pursue the hospital and advocate that they needed better chairs for intubed babies because I didn't get to hold her and now she died. So I think that sticking around to do that advocacy, they actually they moved quickly and they got six chairs, like they bought six kangaroo care chairs. Um, so the unit has those now, they get used all the time. The feedback's been immensely positive, and that wouldn't have happened if we had just kind of you know sunk away and disappeared. But I I felt so strongly, especially because again, we were there for 48 days. Most of their families aren't going to be there a long time, but because I was, I could see the gap that was missing, and I could tell them how to fix it. Um and like that, I think that that's that's a really big piece of of Evie's legacy. I'm still working with Chio right now. They have something that they're doing called Phi care or family integrated care. So they're trying to kind of um change some of the culture of the NICU so that families are more integrated and pieces of care. Um, they get more opportunities to interact with their baby, to hold their baby, to do all these different things, but then also to get all the staff comfortable with all the different things that could be happening, because unfortunately, they're not necessarily super used to having intubated babies because that's not all the babies they see. Whereas at the general, they were the micropremi specialists, they see a lot of intubated babies, so they were comfortable letting me do this and do that and do all these things. Whereas at ChiO, they were kind of like, oh, I don't know, like this is pretty serious. Like there were certain things that they weren't as comfortable with, and they're they they are trying to change that. So getting to be a part of that has been really helpful to me um in healing, but also in like sharing Evie's story. I got invited to speak at ChiO to three different groups of staff about our experience of all the things that were good, some of the things that could have gone better, and and just the ways that they can help families that are in situations like ours. So it's it's been really special to get to continue to share that and to get that platform for that. Um, and those are some of the ways I think that Evie kind of like lives on in these initiatives, and like she she made things better for for a lot of NICU babies already. Like, and it's it's only been you know it's only been a year and a bit.

SPEAKER_01 28:43

Do you think that's helped with your healing?

SPEAKER_00 28:47

I think I I definitely like I I think so, especially like again continuing to share on her on her Instagram, but then also getting these these like times where I get to share her story, and even even like this, like I feel like this is another piece of that too, of of of like um one of the things that people have said is some what what can hurt in in infant loss is that people stop asking or they stop saying their name or they stop saying that they're thinking of your baby, and that hasn't happened for us so far. Again, it's been a year, it's been a year and a bit, like it's been a year and four months, so it's not like the longest time, but it's really it's really nice that um I think that people can follow your lead. So if I keep talking and it's a normal thing, everyone else will keep talking too. Like my grandmother, she she when I saw her last week, she said, um, oh I sent some stuffies in for Evie, like they're they're with your mom, and like I'll bring those to her her marker and I put them at Beachwood and we changed them out. But like people are thinking of her, or sometimes I'll I'll show up and you know I I'll see that one of my friends has has been by to visit her because he leaves a he always leaves a lootie if he's been by, so I can always tell tell when he's been by. Is that for you to like go get it? I feel like it's something to do with like I want to say like you you need a coin to pass through or sticks or something, something like that. I I'm not actually sure. I should ask him sometime why he doesn't.

SPEAKER_01 30:11

Like, that's not enough for coffee anymore. No, no. Did Devin ever have a hard time with uh you continuing to post about her or post about your visits to see her at the grave or the work you're doing with Cheo? Or was he is this helping him as well?

SPEAKER_00 30:32

Um, I wouldn't say he had a hard time with it. I think that just the the styles in which that we grieve is a little bit different. Um and and sometimes he finds it harder to like look at pictures or sit with memories and stuff. And even actually, when we did our grief support, we'd we did them separately because I was ready. I was ready to start talking to somebody like a week later. I was like, I need somebody to talk to right now, and he he was not in a place to be pursuing services. So our our journeys are similar journeys but on different cycles and at different points. Um and I'll notice actually so like some sometimes he'll like the post, but sometimes he doesn't because I don't think he he doesn't he doesn't check all of them, which is okay. Um but he has his own pictures on his phone and stuff that he looks at, and both our screen backgrounds have been Eevee since she was born, so and that hasn't changed. Um and like he was he was really he was really happy and proud too. Like when when when the hospital bought those chairs, he was like, that's that's the big because that would have made a world of difference in our stay if they had had those for us. Um because yeah, again, I don't think we would have only held her five times, like especially going from holding her every day once she was stable enough. And and actually when when we were there talking when I was there talking to the groups of staff at the hospital, one of one of the nurses was really upset that that that that was the case, that it had only been five times. She was so like she was a part and it again it's not her fault. It's it's no one's it's no one's specific fault. That's the thing, it's just that's how the system was at the time. But she was she was like that never should have happened. I'm so so sorry. I can't believe that that's what happened. Um so but that but now that'll never happen again, right? Ever.

SPEAKER_02 32:16

Right.

SPEAKER_00 32:16

So and actually the the whole hospital's on a campaign to get chairs like this now for the other wards and stuff too. So it really it really sparked something pretty big. Yeah.

SPEAKER_01 32:25

Um yeah, it's like she was this little like snowflake and it's like continuing to snowball, snowball, snowball. Um, was he at all apprehensive about you popping onto a podcast to share her story, or was he happy about it?

SPEAKER_00 32:38

No, he he thought that was so cool. He he was like, wow, that's really awesome. So but he was really excited about it. Yeah.

SPEAKER_01 32:45

Um, what about your friends and family? How were they able to support you?

SPEAKER_00 32:51

I honestly was like so like loved and supported by so many. It was it was really it was really nice to see. And it's funny because um my friend Laura, she actually she set she ended up setting up a meal train for us um when Evie passed, which was really thoughtful. So people were signed up to bring us meals and stuff like that. And and she had when she shared it, she said, Don't feel like you need to know her to do this if you feel so called to. And and there was actually one person that she she came to drop it off and I went to the door to answer, and she was like, I'm I hope you don't think this is weird. I don't know you, but I just felt so called to bring you this meal, and she put her phone number on it and stuff, and it was honestly like that was the one I think that moved me the most because I didn't even know this person. Um, and I think I want to say she might have been in the like December 2024 babies group because I the thing is I was sharing in a few places. I was sharing in December babies group, so it's any baby born in December 2024, except for obviously Evie was the first one, so she was the first live birth uh of that group because she came in August. Um, so people had been following from there, people in the micro premium group had been following, people from Instagram have been following. So I had all these different kinds of people following, and then again, like friends and family and colleagues and stuff in real life. A lot of people chipped in for a lot of stuff while we were in the NICU. Um, some people were giving us DoorDash gift cards and stuff because honestly, like we barely had time to cook, and obviously the one time I cooked, it didn't go so well, so it was it was a lot of like yeah, like like um people paid for our parking while we were at the hospital too. Because the chip was.

SPEAKER_01 34:28

I honestly did wonder about that. I'm like, why can't I ask her about parking? I don't want to seem like it's so it's so expensive. Do they not give you a pass? Is there not like a well?

SPEAKER_00 34:37

So um we actually the general did give us a pass. It was kind of ironic is they gave us a pass, and a week later is when we got transferred to Chiyo. So I ended up passing that pass on to another family that was still at the general. But yeah, parking's $225, which is like a lot. Month? Um at Chiyo it's less, yeah, for a month, because we got like the in and out, like that. Yeah, right. Because we'd be there multiple times a day, right? So right, yeah, it was it was it was really expensive. Um, and then at ChiO it's less. I think it was $90, but still a lot. And Chio Chiyo did provide us with a parking pass for I think one or two of the months that we were there. So I I did appreciate that too. But some people sent us money to like buy our parking or get gas or get a coffee and top up that one dollar. Yeah, yeah. Um, and and yeah, just like um Laura actually had started a GoFundMe for us as well while we were in the NICU, so we did get some financial donations from people, which we really appreciated too. It made it made it easier to kind of again, like I was off work, but I was getting it's called the critical illness caregiver benefit. So I was getting basically EI, which was 55%, which is not nothing. I I'm gonna say I I do appreciate the fact that I was getting money while I was there, and I also didn't have to tap into my Mat Leaf because again, we were planning for at some point she was coming home, so then I could start the actual Mat Leaf at that point. Um you you do still get your Mat Leave entitlement if your baby passes away um beyond I think it was twenty weeks. Um so in a really bizarre again thing, I had to sort out taking a MAT leave when my my baby just died. Um wait, sorry.

SPEAKER_01 36:20

You said after 20 weeks. Does that mean if the baby lives to be 20 weeks, you can take it you can take a MAT leave? I believe so.

SPEAKER_00 36:28

I'm pretty sure that if you if you if if your loss is 20 weeks and after, um you still get a MAT leave, even if even if they were like stillborn and didn't live. Um I'm pretty sure that the cutoff is is 20 weeks.

SPEAKER_01 36:39

But did you take your full year?

SPEAKER_00 36:43

No, so you get the actual maternity leave itself is 15 weeks. So I got the 15 weeks, and during that 15 weeks, my my job also does a 95% top-up, so they topped up for the 15 weeks. Then after that, it it was like it was sick leave because again, I just wasn't ready to come back yet. I I'm actually really grateful my employer was pretty s I work for the city and my we have a pretty good benefits package and stuff, so I was able to take the time that I needed in order to actually like work on wellness and healing and stuff, because this was the the biggest thing that's ever happened to me. Um ever. And a lot of things have happened to me, but this this one really is the biggest. Um, and I was worried because in most things, I'm just a keep going, like throw yourself into a just keep moving person. So I was really scared at the prospect of slowing down and sitting with this and taking the time, but I was also more scared of not doing that because what would happen sometime down the line, like it's gotta come out sometime, right? So it was really scary to to decide to take the time away and and try to focus on on healing and wellness, and you know, for the first almost four or five months, I don't think I I barely left my apartment. I think I only left to go to counseling and to go to group, and that was it. Like I maybe, maybe like went and was a zombie walking around winters for a bit because it's just something to do, but I barely left. Um my mom had actually said she was she was getting kind of worried that I was gonna become like agoraphobic or something because I just like wasn't leaving my apartment um until until June when I decided I decided that uh I needed something to to do when I went to try pickleball, and then I just kept going from there.

SPEAKER_01 38:33

So pickleball. Why? Why pickleball?

SPEAKER_00 38:37

It's so funny. It just was it was just kind of random. I was like, you know, I used to so I used to work at Hindenburg Community Center um years ago when they started offering pickleball, but it was mostly at the time it was mostly geared for seniors. So it was something I had heard about, but I had never played it, and I've never really played any sports or anything, but I knew that they had these intro classes through Rally and Tap. Uh and it was like I think like $34 or something like that to go like play for well learn how to play for two hours, and it was so fun. It was so it was so fun. And the person that was teaching it was also like he was really engaging and super fun. His name's Dave Harris. He he's in a the pickleball scene like all over the place, so you probably see him somewhere. Um, but he made it really accessible and he made it really fun, and uh, I didn't look back as soon as I finished that lesson. I was like, okay, sign me up. Like, where is it? So Rally and Tap has a bunch of play-in socials, and that was my first kind of venture into the world. And my first night at play-in social was actually the six-month anniversary of Evie's death. So I was feeling a lot, like I was like crying in my car before I went in because I was feeling a little bit guilty for going to do something fun on this, like what felt like a really somber like anniversary, but then also I was trying to think of like if Evie was here, would she want me to just keep being sadder? But she wants me to be living and moving and doing things, you know? So it really kind of helped kind of propel me into that, and it was awesome. And also, I had the choice there whether or not to share about Evie, and no one at Pickleball knew that I had had a daughter that died. No one knew that about me, whereas everybody else everywhere in my life knew that about me, which is fine. But it it was nice to just kind of go and and be a person for a bit that was playing a sport, yeah.

SPEAKER_01 40:24

Right. Because it's um you're moving, you know, it's brain body, you know, you're working your eye-hand coordination, it's competitive, it's playful, it's social, but it's like um there's no high stakes. Right? You just get to go and kind of zone out, but zone into something that has nothing to do with anything else.

SPEAKER_00 40:50

No, and and it's funny too because when I went, uh, so at the time the program ran for an hour and a half, and I hadn't moved my body in months because I had been pregnant, then I had been on bed rest, then I had been sitting in a hospital for four months, and then I had been sitting in my house for six months. So like I really had not moved in a long time. Um so I was really worried that an hour and a half was gonna be too much, that I was gonna like pass out, that I was gonna drop dead, like I was gonna have a heart attack or something. Um I didn't. I made it through the whole thing. I was so red. I was so red. Someone asked me if I was okay because I was so red, and I was like, Yeah, yeah, I'm fine, I'm fine. And I'm like chugging water and like drinking a liquid IV and just like, but but it was so like just the rush from playing was was obviously addictive because I came back and I kept coming, but like, and I was so proud too that I had made it through that hour and a half because again, that's the when you haven't moved in a long time, that's a long time. Totally, and now I'm like, if it's not two hours, I don't even want to go. Like it's gotta be at least two hours.

SPEAKER_01 41:57

Oh my gosh. Yeah, now that you're back and you're playing like four, like right before we opt on the call. I'm like, how because your knee is sore? And like, how is your weekend? You're like, well, I stopped at the three-hour mark. I'm like, like it is so addictive. How many times a week are you playing now?

SPEAKER_00 42:15

Uh, how many times am I playing? I play Saturday twice, Sunday, Monday, Wednesday, some Thursdays, some Fridays. But but Tuesday is the day that I usually don't play. Tuesday is the day that I guaranteed don't play. But Thursday and Friday is interchangeable. Sometimes I play Thursday or Friday, but it depends. I love it. Did Devin get into it at all? Uh so he asked at first, and I said, no, you can't come. Because this is my thing. I was like, no, I I need this thing. I actually I did let him come play a couple weeks ago. We went to La Cité for a social drop-in, and the that one's really fun. It's it's a lot of beginners and like they play music the whole time, so it's pretty chill. And he came and he Yeah, he came and he played at that one because I was like, okay, I decided that you're allowed to come look cute. How's he doing? Uh he's he's doing he's doing a lot better. Like it's I think it's we're in this an another kind of transition period because I went back to work in January and he just started a new job a couple weeks ago, so it kind of brings this like second wave of of grief of like for me at least going back to work. I I was hit with the kind of like if she was here, I wouldn't even be back to work yet because she was medically complex, like I still would have been at home. So that was hard, and then for him too, it's like this brand new job, everything's different. Um but again, like you just kind of you feel that loss a little deeper with with these changes. Um but I'd say he's he's doing really well now. Like, I think for a while, like obviously he was doing really poorly as well. Um but he's been doing a lot better. And how's your family? Everybody's doing pretty well too, I'd say, like, and um it's it's nice because like my sister and I we were Just at the cemetery yesterday. Like, like my family will come with me to visit Evie. My mom, we went a couple days ago. She wanted to get some flowers, and we brought flowers and stuff, and we we just um we just did a spring decoration of her spot. So we took all the Christmas stuff away and we put out like she's got a little bunny and an Easter basket, and we got these really cute garden lights, so it's like a solar light, but it's mushrooms that light up. So it's it's just really cute. Just to like and I I actually so you're not supposed to be there after dusk, but we swung by after dusk yesterday just to make sure that the lights worked. And they did because I just needed to see that they they did.

SPEAKER_01 44:33

Why why are you allowed to go to the graveyard after dusk?

SPEAKER_00 44:38

I think it's probably just to like uh control like van vandalism, I'm guessing, because if they see someone there at night, they know they're not supposed to be there and they can get out of here. Okay, yeah, yeah. Because Beachwood's the National Military Cemetery, so it's really beautiful. Um, but it's it's very regimented in what happens there, and yeah.

SPEAKER_01 44:58

Um you find going to the graveyard what?

SPEAKER_00 45:04

Um, I find it's a normal part of my routine now because it we live so close to where she's buried. Like I can see Beachwood Cemetery from my backyard. If I look up at the trees, I can see it. So I'm comforted that she's so close. Um, and it's also on my way home from work. So I can stop every day if I wanted to. Uh, and I often do, like most times when I'm driving home out. Even if I I don't always get out of the car every time. I'll just drive through and I can kind of see her, but most of the time I'll I'll stop the car, I'll get out, I'll go, I'll go see her for a little bit. I usually take a picture when I'm there or I like fix her stuff and and um sometimes like she she has a neighbor there that um uh we got last year, like another another baby passed away. And she's she's buried in uh a section called the Garden of Angels, so it's all babies and and children. Um so her her little neighbor is a little girl named Sun, and sometimes I'll like fix her stuff too. Um yeah, and then and just like kind of check on everything and and say hey, and and it's funny too, because um Sun has this big uh what are they called? Uh pinwheel. This big like metal pinwheel, it's very beautiful. Um, but every time I get every time I get there, every single time, even if there's no breeze, it starts going like every single time when I get there. So I'm always like, oh hey, Evie, like I'm here.

SPEAKER_01 46:30

Right, oh my god, Emma. Yeah. Uh when you look back on everything that you've endured and experienced and loved, is there anything that really surprises you about yourself?

SPEAKER_00 46:46

I guess I don't know if it should surprise me about myself. Because everybody that I've talked to after was like, what do you mean? Like you're such a mom, or like you make such a good mom, or you know, like all those things. I think that part is what surprised me again, just because I I didn't really like think about it or uh let myself think about it before that it just which it doesn't make it it's kind of it's kind of crazy that that's the part that doesn't make sense to me because I I literally have been in a caring profession for my entire career and and I I love helping people and I love doing all these very motherly things, but I just never thought of myself as a mom. So it's just it's it's so strange to to be a mom and then also to navigate being a mom in this way, because like that's the other thing that that a lot of people will say like in infant loss and stuff is like it can hurt if people forget that you're a mom, right? You know, but no one's forgotten, which is which is really nice. Um, and I I don't I tried not to forget myself also that like yes, I'm still a mom, even though again, like what are the ways peop people had said kind of like at at Roger Nielsen, like with the loss group and stuff, they said you find ways to parent your baby even though they're not here, and like how do I do that? That's in the advocacy work that I do, or that's in sharing her story, or that's in gathering the little things for her and her I I call them her peers, like the people that are in the set, like it's kind of like if she would have classmates later or something. Like I have the list of you know the other babies that I always keep in my mind from like the people I met at my Roger Nielsen group, um, Arthur, the little baby that was in the NICU with us for those those two and a half days. Like, I there are lots that I kind of I I keep them in my mind too. Um and I hope like it comforts it comforts me to know that I think about those babies, and I I hope too that like someone's someone's always gonna be thinking about Eevee.

SPEAKER_01 48:37

When you think about everything that's happened what was most surprising from somebody else.

SPEAKER_00 48:49

I mean there was a couple ways that we got pretty let down by a few people that was a bit surprising just because the the stark difference I think in in the family dynamic between like my family and my fiance's family. That was a it was a bit disappointing. Um But I I try to give that grace too because I think that as much like it's it's our loss the most, but everybody did lose too. So I try to give some grace in some of the stuff that happened, but it can be disappointing in the ways that people don't they continue to not show show up. Um but I'd also say like I think too, just my friend Laura, like going above and beyond for like supporting us and doing the GoFundMe and checking in with us so often, and they were some of the friends that we had come meet Evie as well before she passed away, and it was so special to get her and her her parents to come. And her parents are almost like a a set of second parents to me, I kind of consider them. Um, and uh like having the meal trains set up and stuff too, and just like all the folks that came for that, and even at Evie's funeral, there were so many people there. Like I had like co-workers from 10 plus years ago that came, you know, and my bosses from Hindenburg Community Center, and a lot of my colleagues from my current job came. Um, a lot of friends, um, friends came from out of town and traveled, but one got on a train at like five in the morning to make sure that he was there, and and just you know, everybody kind of came together and and like even just messages and stuff that I got, I got a lot of messages from people too that couldn't be there, and it was it was it was really nice to kind of feel the the community and support in such an isolating thing because it again, like as much as there are people out there that this happens to, it is still very isolating experience, and you don't necessarily know someone in your circle that's gone through it, or they might have gone through it, but you didn't even know. Um so and again, like there is a lot of like I think there's still a lot of like stigma and stuff too to like to loss because it's even that implies like that you lost, you lost something, like they're gone, right? So it's you know, it just yeah. But I think that that most most people like most people like really surprised us positively, you know, and then some it wasn't a surprise, some I I really like I just knew that those were the people that were gonna gonna be there and gonna be amazing and and do all those things and stuff.

SPEAKER_01 51:25

So if you could if someone's listening, another uh person that's going through what you went through, is there anything you could say?

SPEAKER_00 51:36

I think that especially if you're in a position where you're having to make a decision, which again, like I don't even I don't feel that it was a decision, but just like because the the answer was so clear to me that there was no choice. Like it was just it was the right thing. So just like trust trust the decision you're making because it's right. You know what's right, you know your baby, you know you're their parents, you're their mom, um, whatever you think is is the right thing. Um and and don't doubt it.

SPEAKER_01 52:08

And any advice for someone that's trying to support them, be it like a family member or a friend or a coworker.

SPEAKER_00 52:15

I think that a lot of people hesitate in saying anything because they don't know the right thing to say. Um but just saying something is is better than saying nothing, just letting them know that you're there or even just saying someday, like, hey, I'm thinking of your baby. I was thinking of Evie today. I just wanted to let you know. Even something like that is so simple, but it's such a it's such a big gesture for us, especially as you know, life life has to go on, it keeps moving, but to know that that they're not forgotten is is such a powerful sentiment to leave us with.

SPEAKER_01 52:51

Thanks for sharing your story, Emma. You're um unbelievable. Just how you can express it and so honestly and so vulnerably and so openly, and then also express how grateful you are for what you've been through. Like it's one of the hardest things I'm sure any human will go through. But then you speak about it with such love and gratitude. Because you're a mom. How are you doing today?

SPEAKER_00 53:23

I'm doing okay. I feel like it's one of those things like I love I love talking about Evie so much. Um even though it's still it still can be painful. Um, and I think that's that's clear in in the in just hearing this too, like the spots that are still hard to talk about and hard to think about. But today's gonna be like a big self-care day after this, I think. I'm just gonna take it easy and do some do some caring activities for myself.

SPEAKER_01 53:50

Pick up the guitar.

SPEAKER_00 53:52

Yep. Yeah, I've been I've been playing guitar again, and uh I'm trying to build back up to having at least a three song set that I think I can get through on stage because I'd I I think I'd like to go to an open mic again, but can you post when you're open mic so I can go?

SPEAKER_01 54:07

Yeah, yeah. Definitely what song is your go-to song to play right now?

SPEAKER_00 54:13

Well, so I've been working through um Billionaire by Kathleen Edwards. She wrote a really beautiful song about grief. She's one of my favorite artists, and she wrote this song about her friend Amanda, and her friend she had passed, and she wrote this really beautiful song about grief, and it's been one that I actually I avoided listening to it for the longest time. It's the title track on her latest album, and I just was like, I know that this song is gonna hit so hard that I'm not ready for it yet. And my mom and I went to see her at the Bronson Center, and we were front row right in front of her, and when she got to that part of the show, she said, you know, I'm gonna play this song, it's about my friend Amanda. A lot of the other like friends and family were there that night, and she's like, I don't know if I'm gonna get through this song, so let's see what happens. And she did, and it was the also my first time hearing this song because I had avoided listening to it, and I'm just crying at the front, just absolutely crying because it just captures this experience with grief in such a beautiful way. And as much as you know, Amanda was older and had lived more, so like some of the parts of the song don't really apply to me and Evie, but so many of the others do, so that's kind of the song I've been working through right now, trying to get to a spot where I think I could perform that. I've made it through it one time without crying, so I'm gonna have to make it through I think a few more times before I feel comfortable taking that on stage, but that's that's my hope because it's just such a beautiful song, and it I feel connected to Evie in it, even though it came after her.

SPEAKER_01 55:41

Beautiful, and that's also what I love about music and a songwriter and a singer like Kathleen Edwards. Um yeah, she writes the human experience uh really well, doesn't she? She's incredible. She does. Um I just love you. Thank you so much for sharing with me. Thanks for this conversation. Um yeah, take real good care of yourself today. Please, please post when you're gonna go play that song.

SPEAKER_00 56:08

I will.

SPEAKER_01 56:09

I definitely will. Okay. Have a beautiful day.

SPEAKER_00 56:13

Thank you.