The Other Side

TOS of Infant Loss

• Nadine Hogan • Season 2 • Episode 19

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0:00 | 1:05:59

Content warning: infant loss

Emma Mitchell is Evie's mom. She's also a pickleball obsessive, a Canadian music lover, a former open mic host, and one of the most honest and open humans I've had the pleasure of sitting across from. We start the conversation talking about pickleball outfits (because of course we do) and then we go somewhere really deep and really real.

Emma never let herself think about motherhood. Between her brother, Gord, her PCOS diagnosis, and just never really going there in her mind, she'd quietly made peace with a different kind of life. And then a chest x-ray waiting room moment sent her home to take a pregnancy test. The rest, as they say.

We talk about everything - the pregnancy she didn't see coming, the bleed that terrified them at eight weeks, a missing referral, a cervix that was nearly gone, an infection, and a baby girl named Evie who arrived at 23 weeks and 6 days weighing 660 grams. We also talk about what it means to become a mom the moment you find out you're going to be one, even when everything that follows is the hardest thing you've ever done.

This is part 1 of 2, which will be released next week x

@the_otherside_pod

SPEAKER_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. We're recording with the lovely Emma Mitchell. Before we dive in to Emma's beautiful uh heartbreaking story, I want to know, okay, as a fellow pickleball lover and like lover, I I actually think Emma, you might taught me for the love of pickleball. Um do you love buying the pickleball clothes, like the the outfits? Yeah.

SPEAKER_00

Yes. Oh my god. I literally just ordered two more pickleball dresses like two days ago. Where'd you get them from? Because I have a dress that from Torrid that I really, really like. Uh, and it has like a it has a mesh skirt, and then it's like very fitted on top. But it it only came in in black and red, but for spring they just launched white and blue, and I was like, give me that dress. I love wearing that.

SPEAKER_01

I love wearing my pickleball skirts. I think I mean, yes, I love pickleball and I love movement and all that, but I might equally just love the outfits. It makes me so happy.

SPEAKER_00

I love it. And there are some ladies I've gone to a couple tournaments, and there are some ladies that came in like matching dresses, like in their doubles partners. It's like, that's my dream. I need a partner that's as enthusiastic as me that will match outfits, but they had like matching custom-made dresses. So that's so fun.

SPEAKER_01

Don't you worry. She's out there, he's out there that will wear this outfit with you. Um, okay, what is Torrid? T-O-R-I-D?

SPEAKER_00

Torrid, it's like a plus store. So it starts at size 10. It starts at size 10 and then it goes up to, I'm not sure what size. I think like four or five X or something like that. But it actually has some nice clothes because like when you're looking for plus clothes, it's really hard to find nice stuff. It's like a lot of like really grandma-y stuff. They're hid and miss, but I will say that their athletic wear is pretty good. Although I've also really been loving Hyba with Reatman's.

SPEAKER_02

Oh.

SPEAKER_00

Um, there's a local pro, Maria Klikowski, and she had sponsorship with Highba. So that's how I I found out about them. I actually won one of her giveaways and got some store credit to go spend.

SPEAKER_01

So I've I gotta go look.

SPEAKER_00

I love their leggings. Their pulse leggings are really good. They have a lot of really good outfits, and actually, there's a couple skirts in store right now. I was just there for the spring collection to like check out what they have.

SPEAKER_01

So if you go to Reatmans, will they have their athletic line there or is it a different store?

SPEAKER_00

Yes, all of them except for the Sal Laurent one, I think, because the Sal Laurent one's just too small, so they don't have any athletic wear in store there, but everywhere else does it.

SPEAKER_01

Okay, the Sailor Mall here in Ottawa. And what about okay, wait, how do I spell Torrid? T-O-R-I.

SPEAKER_00

Torrid is T-O-R-R-I-D.

SPEAKER_01

Okay, if anybody's listening and they want to go play Pickleball, yeah, highly recommend. Okay, let's dive in. Before you tell us who you are and introduce yourself, I just want to give whoever's listening a little warning. We're gonna talk about infant loss. Um, Emma's generously sharing her story with us. So if this is not the right time for you to hear this, then you know, save it for later. But if you're ready to be connected with a beautiful, lovely, kind human who loves a bit of Canadian music and social media and pickleball. And I feel like you're very crafty, but I might be making this up. Yes, you are, right? Yeah. Then hang on and just listen. Emma, can you introduce yourself?

SPEAKER_00

Uh I'm Emma. I'm Evie's mom. I'm also a pickleball enthusiast. I love Canadian music, former open mic host, wearer of many hats. Uh yeah, and I'm living here in Ottawa.

SPEAKER_01

And we met through the love of spin.

SPEAKER_00

Yes.

SPEAKER_01

And we remain connected through the love of pickleball. Can you tell us your story? Did you always know you wanted to be a mom? Let's start there.

SPEAKER_00

Yeah, it's really funny because I feel like most people have this innate like feeling and they've always thought about it since they were a kid, and that just wasn't the case for me. I did not know that was something I wanted until I knew that Evie was here. Um, so for me it was like a a really deep journey, I guess. It motherhood isn't something I really thought about before or allowed myself to think about. Um, so once I found out I was pregnant, I I really realized that like, oh my god, I want this so bad.

SPEAKER_01

Hey, why didn't you allow yourself to think about it?

SPEAKER_00

I mean, there's a few different reasons, but like I have uh a younger brother with autism who's very high needs. He's gonna need support for his whole life. And I love him very dearly. So I kind of always thought that once my parents pass away, that would probably be the caretaker for him. So that was kind of one one reason that I didn't think like parenthood was the right path for me since I already had this responsibility, which I also is not necessarily correct. It's just like how it feels when you yeah, when you have a like profoundly disabled sibling, it's just someone ends up in a caretaker role. It's just how it kind of falls. And then on top of that, I've struggled with my hormones for like my entire adult life, I guess. Um, I've had a lot of hormone imbalances. I have PCOS or polycystic ovarian syndrome, which can make things unpredictable. So I've I never even had a pregnancy scare in my 20s or anything, so I didn't really think I could even get pregnant.

SPEAKER_01

Did a doctor ever tell you you couldn't get pregnant? Like, did you have that conversation?

SPEAKER_00

No one ever No one ever said that I couldn't, but like part of PCOS is often infertility struggle, so I just kind of assumed. Yeah, even though like for me, I always had a regular cycle, like I never missed periods, I didn't go long periods in between of not having one, which can be very typical for some people with PCOS. That was not how it was for me. Um, but just between knowing that I had this this condition and then never having even a scare, because you know, when you're when you're younger, you're not quite as responsible. But I never it just never happened. So I kind of assumed at this point in my life, since it had never happened, that why would it be?

SPEAKER_01

Why how old are you?

SPEAKER_00

I'm 34.

SPEAKER_01

Okay, okay.

SPEAKER_00

I'm 34, and I will say the scape of fertility is really changing because before 34 was that like if you're too old, cut off, and like that's really not the case anymore. Women have babies into their 40s, even. Um, so uh my fertility doctor would say, like, no, no, you're not too old, and like, no, don't don't think like that, but it's just like the old way of thinking.

SPEAKER_01

Yeah, of course. I don't know much about PCLS, so I just want to ask, uh, is it really painful?

SPEAKER_00

It's not necessarily, it it really depends because like something with like like endometriosis, that is painful, right? But PCOS isn't necessarily pain as one of the main things of it. However, if you end up having like really big cysts, uh you can have um like ovarian torsion or like different things that would cause a lot of pain. Um but for most it's more like the hormone imbalances.

SPEAKER_01

Um okay. And that's why it's hard to or there there could be fertility issues because number one, you could have sex which could interfere, I'm certain, and then the hormone imbalances, which interferes with okay.

SPEAKER_00

Well, that's it. And a lot of women don't have regular periods who have PCOS. So, like that for me that's a bit of an anomaly, like that mine is very, very regimented and regular, but women can go a very long time without having a period. The other thing that happens is you have a period, but you didn't actually ovulate, so then you can't get pregnant if you didn't ovulate.

SPEAKER_01

So oh, so your uterus lining still builds up without uh an egg dropping. Okay, interesting. Yeah, um, so how did you find out you were pregnant?

SPEAKER_00

So I had actually taken some time away from work, so I was on a mental health stress leave and I had just gotten back to working out. I was like, okay, I need something. I had been feeling not very good, so I was like, I need something to focus on. I had gone back to to go spin and I did my first week of spin classes, and I just suddenly was really, really sick. Um, there was a viral pneumonia that was going around at the time. So I think that's what happened. I I caught this illness, but because I was pregnant and I didn't know, I was a lot sicker than I think I would have been if I wasn't. I ended up needing to go get a chest x-ray. Uh, and when you go get an x-ray, they ask you, could you be pregnant? And at that point, I was thinking, well, of course not. And then I thought to myself, wait, I don't remember the last time I had a period, and I had to really think. And I had had a little bit of spotting, which I assumed my period was coming, but then it went away. So I went, wait a second, uh, probably not, but what if I am? And they said for a chest x-ray, because of where they're taking the x-ray, it's the same radiation as walking around town and using your cell phone, it's not a risk, but you still have to sign a waiver just in case, because you know, and they put like a big lead plate up to block everything that it needs to block. Uh, but as soon as I signed that waiver and I went home, I went, uh, maybe I should maybe I should check just in case. Like uh, and I took a pregnancy test and I didn't even have to wait for that line to appear. It was immediate. It was immediate, the darkest, thickest red line you've ever seen. I was in absolute shock and called my partner. I was like, Devin, come here, you gotta come here. He thought I wanted him to clean the bathroom, so he ran to get cleaning supplies and came in with his cleaning supplies, and I was like, No, put that down, like come here. Look at this. Um, yeah, he and he was so excited. He was so excited. I was in shock, and I was like, You gotta go get one of those digital tests like right now, because clearly this is wrong. Like, this can't be correct. It's a digital test. Um, so the digital test will stay pregnant instead of just a line.

SPEAKER_02

Okay.

SPEAKER_00

Uh and the the one that he got, the one that he went to get, it had uh weeks, it would tell you. So either you were like one week, two weeks, or three plus. And again, it was pretty much immediate, and it was like three plus. So that meant I was at least three or more weeks pregnant at that point. So then we had to like book an ultrasound and figure out what's going on.

SPEAKER_01

I need to I need to know Emma in this moment all your life. You're like, I'm not having kids, just assume I'm not having them. Assume and at this point, you're like, I kind of assume I can't have them, honestly. Yeah, and then this x-ray sparks is like, huh, I should do a test. And then you're so clearly pregnant. Like, what? At any moment were you like, I didn't want this, or or right away, does something just like happen biologically in your body? Like, I've never been pregnant, so talk me through it.

SPEAKER_00

Yeah, it's so crazy because I was terrified because I was like, Well, this wasn't supposed to happen because again, I had never thought about it. Like, I had not let myself, but then I I the more I sat with that, I was like, No, I didn't let myself think about it. It's not that I didn't want it, I told myself I was okay with not wanting it, and I just didn't think about it because I didn't think it could happen. And I think that's one of those cushioning things, like it happens when you have something like upsetting or whatever, you might have these cushioning thoughts to like comfort yourself. So, like, no, I never wanted to be pregnant anyway. Right, it's fine. It's fine.

SPEAKER_01

I don't need to have kids, I never wanted them.

SPEAKER_00

Yeah, and then your body's like And then everything in that moment is like, oh my god, this is everything I ever want. Like it just it just changes. Really? It really does. I think that I I will say that there are people that know that they truly don't want to have kids, and that's so valid, and I don't think they're gonna have this life-changing moment of like, oh my god, this is everything I wanted, because that that wasn't what they wanted. But for me, it's not that I didn't want it, I just didn't let myself want it, which I didn't know until this happened.

SPEAKER_01

Yeah, you didn't let yourself know that you wanted it. Okay, yeah, yeah.

SPEAKER_00

Cause I mean, how disappointing would it have been? And like I have friends too that have been going through an infantility journey for a long time, and it's so heartbreaking to see people that are so deserving to be parents that want it so badly not be able to have it, and seeing that heartbreak too, you wouldn't you would of course you try to protect yourself from that. So yeah, it was it was very it was truly the most life-changing that it could have been.

SPEAKER_01

Okay, so the two of you were like kind of not immediately, like you had this like, oh my god, and like this, I'm terrified. But like pretty pretty quickly it turned into joy.

SPEAKER_00

Yeah, yeah, yeah. How did you tell everybody? And I I will say too, because I was sick, I had to stop taking all the cold meds that had been helping me. So I was really miserable for the next like week, week and a half while I was very ill, because you can't take basically anything. The only thing that I had to finish because I had started a course of steroids, they were like, you gotta finish that. Like, don't stop that in the middle. So I I had one more dose of lovely prednisone, but yeah, I was very, very sick. So that part was not so fun. We ended up telling my parents we we took them out to dinner, which my parents are not together, so the fact that we invited them both out to dinner at no one's birthday, they were kind of a little sus of. Um, and my brother, who's mostly non-verbal, I wanted him to be a part of telling my parents. So we actually bought him a sh a t-shirt that says Funkel. Fun uncle. He's gonna he was fun uncle, yeah. And we went out to dinner and we we had him wearing the t-shirt.

SPEAKER_01

Sorry, did he know? Like, did he know that he was gonna be the one?

SPEAKER_00

Yeah, so I told yeah, I told him um, I I told him about it, and uh he he had like such a big smile. So, like sometimes it's hard to tell sometimes how much Gord's taken in of like what's going on, but he was like really excited about that. And and even to this day, he likes to like w wear his shirt and stuff. If um, yeah, so it's if he he really was a fun uncle, and and like we'll get later, but like he did get to come meet Evie, which was really, really special. I was so happy that the hospital helped make that happen. Um, so at dinner he he had his Funko shirt on, and it actually kind of backfired because my parents did not notice. Like, no one noticed that Gordon was wearing a different shirt, which I think is a little bit crazy because like sometimes in like special these day programs, sometimes the clients come home and not their clothes, right? Because like there's lost and found, they pick up other people's stuff. So usually my parents are pretty good about noticing, hey, that's not gourds, but no one no one batted an eye. Uh Devin was red, so red, he was sweating. Your partner, he was like, he was, yeah, he was muttering, like, oh yeah, that's a nice shirt, gourd like funkal, like he was like clearly freaking out. Um, I ended up asking the waiter if he could come over and be like, Hey, we're trying to tell my parents that we're expecting, but they're not catching on. Can you point out my brother's shirt and say, like, nice shirt, buddy, where'd you get that? or something. So the waiter was so stoked to to be a part of it. Uh, and he did. He came over and said, Oh, hey, buddy, nice shirt. Where'd you get that? What's that say? And then my parents did read the shirt, and then it was kind of I don't know, it was like a slow motion, like they didn't quite like clue in right away, and then they were very excited. Because again, this is something I never ever talked about with them um of about wanting. So they were so stoked to be grandparents.

SPEAKER_01

Okay. And then from there, was there ever a moment where your body gave you a sign that something may not be going according to plan?

SPEAKER_00

Yeah, it's it's funny because it was actually that same week. So honestly, my pregnancy was an absolute roller coaster, and then it just it just kept going once she once she came. So um, that same week, we went out for dinner and we told them on the Wednesday, and then on the Friday, my mom came over and gave us our first gift, which was really nice. She got me a pink hat that said baby mama, and she got a beautiful copy of The Velveteen Rabbit, which was a really important story to me growing up. This story was really nice to have that.

SPEAKER_01

Come on. Yeah.

SPEAKER_00

So she she came and brought that gift over, and then after she went home, a couple hours later, I was like bleeding profusely. Jesus.

SPEAKER_01

Wait, how far along are you? Sorry to interrupt you.

SPEAKER_00

So at this point, I think I was only eight weeks. Okay. So it wasn't it wasn't very far. And I will say, like, you know, I I think a lot of people wait until they're in the second trimester to tell people, but because we were just so excited, like, we were like, no, we're telling people from us knowing now. I ended up going to the hospital and we thought we were we were losing the pregnancy because I was just bleeding so much and I was passing clots. Really? Yeah. There was like p uh enough pieces that even I thought looked baby-like that I was really freaking out. Like it was it was really awful. God, I'm so it ended up being it ended up being a subcorionic hematoma, which allegedly is very normal. It did not feel normal, and no one made it feel normal, so I don't I I wouldn't accept that that's what's it called?

SPEAKER_01

What'd they tell you it's called?

SPEAKER_00

A s a subcorionic hematoma. So essentially it's like a pocket of blood that's outside of the placenta, and you end up shedding it because your body's like, hey, get that out of there.

SPEAKER_02

Okay.

SPEAKER_00

Uh it's it's in the way. But it's I wouldn't necessarily like if you're bleeding profusely, go to the hospital. Yeah. Don't don't assume it's normal. And did you have uh cramping with that? Yeah, I had a little bit of cramping, and like you can feel like your body passing um like the pieces and stuff. So again, it was it was very uh unsettling, and especially I was very upset at the universe at this point because I thought, why would you let me want this thing that I've never thought about and now you're taking it away? So again, that's not what happened. Uh we ended up we had to wait, I think, 14 and a half hours before we could see someone for an ultrasound because it was a Friday night. Yeah, no one's there for ultrasounds overnight.

SPEAKER_01

Half hours sat at a hospital in in the emergency room.

SPEAKER_00

Yeah.

SPEAKER_01

Did someone see you at all?

SPEAKER_00

We saw like one the the one doctor after triage, but again, it was like you're just gonna have to wait for the ultrasound tech to come in. So there was no one that could do anything until that point. Um sorry. So we spent 14 hours thinking, again, that we had lost the pregnancy. My mom came and joined us at the hospital in the middle of the night, like it was just a whole thing. But because we had had our dating scan at that point, um, Devin knew what a normal ultrasound looked like. So he knew what our baby looked like at this point. He knew what seeing the heartbeat looked like. When they are scanning you and they think something's wrong, the screen is not pointed at me, so I couldn't see anything. But he jumped up as soon as they started scanning because he could see that she was still there. So she was still there, sh her heart was still beating very strong, and everything was was okay except for that this other thing had happened at the same time. Um, I was put on like bed rest for a few days after that just to make sure, and I was still on leave from work at this point anyway, so I took it pretty easy and was like, you know, just eating nourishing meals and resting and not exerting myself. But from that point, we had kind of started the pregnancy with with stress. Um yeah, and then you don't get referred to an OB right away either, until you're at a certain point in your journey. Our referral got lost. So this is I'd say the only misstep in the medical system here is at from my own family doctor's office, the referral either didn't go through or they forgot to put it in. So I waited a really long time and I called my doctor and I was like, Hi, I haven't heard from an OB yet. Should I have an appointment with you instead? And they went, What do you mean? Figured out that the referral hadn't gone through. How many weeks are you at that point? So by the time I actually saw an OB, I was at 18 years. Um What's typical? So we went in. Sorry, I keep it because I I don't know. I'd I I'd say before that, but I'm not actually sure because my only experience is this atypical one. Okay. But I think by that point they would have had liked to see me because uh our first appointment with her was the appointment before the anatomy scan, and that usually happens around like 19-20 weeks. That's where they would check and make sure everything's looking good. And at that scan, uh, is when they realized that I already had a very short cervix. So uh anything under 2.5 centimeters is concerned. Uh and when they checked me then at 19 weeks, it was at 1.1 centimeters, so so not good. Um uh we went in with our OB after that because our ultrasound office and our OB's office were in the same place, so we walked down the hall. But when the scan was happening, I could tell like we had a chatty tech who was talking to us, and then suddenly she wasn't, and I was like, Oh, that's not good. So she had just told us that Evie was a girl. We were so excited, and she said, I'm just gonna re-measure your cervix. And as soon as she said that, I was like, Okay, that's not a good sign. Uh, and then her face, her face got very serious, and then she said, Okay, you're gonna go see the OB now. And at that point, our OB had to let us know that like you're gonna be referred to high risk, so you're gonna go to MFM at the general.

SPEAKER_01

What's MFM?

SPEAKER_00

And uh uh it's maternal fetal medicine, so they they deal in any of the high risk or like out of the ordinary circumstances. Um there's a lot of different reasons you might see them, but for me it's because my cervix was short, and with a short cervix, you have a risk of preterm labor. And at this point, I hadn't reached viability yet for Evie. So if she had come any earlier than 22 weeks, we don't necessarily intervene here. Um I think there's maybe a gray area of like the 21, 21 and 6, they they may or may not, depending on the size of the baby and and other things, but but generally right now the the accepted cutoff most places is 22 weeks, and that's if you have a level three NICU, because a lot of other places, like if I if Evie was born in a different city that didn't have as many hospitals as we did, she might not have um been viable even at her gestation. Because I got referred over to high risk, that meant all my appointments were now gonna be at the general. Uh, I never actually met the doctor I was supposed to meet because he was on vacation when I first went there. So I ended up with someone else, and they also weren't able to see me right away because my OB had basically said when you see MFM, you might get admitted to. The hospital right away. Some women are put on bed rest immediately, so just prepare yourself for that. And for me, I was in absolute shock and denial. I was like, no, well, okay, some people, but not us. Like, that's not gonna happen. MFM was really busy, so they couldn't actually see us until eight more days. And by the time they saw me, uh, when they checked my cervix, I actually only had 0.3 centimeters left. So it was gone. Like it was she there was she was flat. There was nothing left. So unfortunately, I think that maybe if they had been able to see us a little bit earlier, our story might look a little bit different. I can't say for sure. For them, once they saw us, it was like, okay, you're on bed rest, like don't don't be exerting yourself, no more working. Like I I had gone in to to work one day and said, guys, I have an appointment tomorrow, see you Friday, and then I never came back. MFM wanted to keep following me pretty closely, so my next appointment with them, uh I think my next appointment we would have been at I think just under 22 weeks. I think we were still at 21 weeks when we saw them. My cervix was still 0.3 centimeters. So they couldn't they can do something called a circlage, which is where they stitch shut your cervix to make sure it stays closed, which they had initially said they wanted to do, but when they checked me and they only saw 0.3 centimeters, they said there's not enough to stitch, we can't do it. When they saw me the next time on the ultrasound, it was showing that the cervix was dynamically opening and closing a bit, which is not good. So at that point they wanted to do a rescue circlage, and I was a little confused because they had told me they can't do it, but at this point, because it was a rescue measure, they were gonna try anyway. Um The General is a hospital that tests for infection before doing a circlage. So not every hospital does that. It's really lucky that they did. So they did an amniocentesis, which is a very long needle that goes in your abdomen. Feel it. I'd recommend not not watching. Oh yes, you definitely feel the I had only men doctors in the room and they were like, don't worry, you're not gonna feel a thing. And absolutely, you feel a thing. You feel a lot of things, and it's uh it's more than a little pressure. They were like, Oh, it's just a little pressure. It's it's some pain. It's a pretty it was an 18-gauge needle. Like it was it was not a it was not not a big deal, like it was a big deal. But they use guided ultrasound to take this needle to take a sample of your amniotic fluid to make sure there's no infection. Well, it's a good thing they checked because I did have an infection at that point, and if you stitch something closed with an infection, it's like a soda bottle and shaking it, eventually it's gonna, you know, explode. So it's really good that they did not stitch it shut. I'm I'm we're really, really lucky that the general is the hospital that tests that first because a lot of hospitals just stitch, they don't test. Um, what was the infection? Because So it just was uh uh a normal bacteria in the wrong place. Okay. So because because the cervix had been opening and shutting, I guess, the bacteria from a different place got in, and it's just like not not a good bacteria for the placenta, for the baby, for any of that. Um but if it had stayed where it needed to be, it wouldn't have caused any problems. I think it was fusobacteria nucleatum. So it's like again, it's like a normal bacteria that can be in your mouth, it can be in your vaginal cavity, it can be in your digestive tract, and it doesn't cause problems there, but if it's in the wrong place, it does the wrong things. So at that point, I got admitted to the hospital. So from that appointment. And I had even my aunt took me to this appointment. My bag was in the car because I was like, I'm not bringing that bag inside because I'm not getting admitted to the hospital, I'm not manifesting that. Then we had to go get the bag from the car because I absolutely was not leaving that hospital. And this was 22 weeks. Yeah, so it was just before 22 weeks. I was on August 1st is when I got admitted, and August 14th is when she was born at 23 and 6. Um, so we were in the hospital, and it was really confusing because depending on the day, some days I was like strict bed rest with like machines on my legs to pump my blood and prevent clots, and other days the doctors were like, no, walk around. Like you're you're you're fine, walk around. So it was it was a really confusing hospital stay. Um, but because I was doing so well, somebody on the team was studying this particular bacteria and infection, and in most women, they got very, very sick very quickly. Like it was a an emergency. So the fact that I wasn't getting sick was like strange. A couple times they actually thought about sending me home because again, I had been there over a week at this point, and I seemingly was doing well. It's a really good thing that they didn't send me home. I said, I really don't think that's a good idea, let's just wait and see. Like, let's at least get to 24 weeks and then we'll talk. Um, and she ended up coming at 23 and 6 at 11 40 p.m. So just 20 minutes shy of 24 weeks. Uh I went into like active labor the day before, but we didn't know. Because again, if you've never gone into labor before, you don't really know what's going on. And especially that early, things feel a little bit different. Um, because at the time Evie was only six hundred and sixty grams, so she wasn't big. Like that's that's pretty small. Oh my gosh. She was she was big for her gestation, which is really lucky because again, if she had been smaller, she might not have thrived as well if she did for as long. So she really had size on her side. So she was six hundred and sixty grams, which I think is about one pound seven ounces.

SPEAKER_01

Oh my gosh.

SPEAKER_00

And when you think of like uh a typical term healthy baby, like you're thinking like six pounds, seven pounds, a big baby's like eight, nine, ten pounds. She was one pound one pound.

SPEAKER_01

Uh okay, the day you went into active labor, what did what were you feeling?

SPEAKER_00

So because they had me on so many different meds and stuff, and I was on all these antibiotics, because again, like I did have an active infection that they were trying to get under control. I thought I was like constipated. So I was having pretty intense like abdominal pains, but it was more like I don't know, like I I still to this day I think I would have still thought the same thing. I wouldn't have been like, I am in labor. Um, and they didn't think so either for the first day, because again, it was it was early, I had been really stable, I'd been doing really well. But the the second day of it, so that first started at night, the next day at night again I was bleeding a bit, and then they were like, Okay, wait a second, let's check you. And at that point, I was dilated, I was like ready, my my body was preparing. I think too, because I had an infection, my body had decided, like, okay, it's not safe in here anymore, it's time for her to come out because again, the infection was a risk.

SPEAKER_01

It wasn't under control, they couldn't get rid of the infection.

SPEAKER_00

Yeah, and even with the antibiotics and stuff at that point, some of the damage had been done. So Evie was really lucky in that she didn't get the infection. I don't know how. I don't know how she was not infected with the infection, but the infection in the environment limited her growth. So her lungs were very, very, very sick.

SPEAKER_01

Before we get to her birth, you're in the hospital in bed on bed rest for three weeks, right? Three weeks? Knowing what's knowing, everyone you have an infection, but knowing your cervix is that small. Uh like where does your where's your mind go? What goes through your head? How are you feeling?

SPEAKER_00

Yeah, I think that I honestly spent most of that hospital stay in shock. Um, because some of my like a lot of my family came to visit me. Some of my friends and colleagues came to visit me, and my two colleagues who are both moms, um, were very like they told me this after that basically they talked about me and they were a little worried because I was too chill. Right. Like, and they were like, I'd be freaking out. I don't know how she's so calm. But I think I again it was just like a a shutdown cushioning thing because like there's nothing I could do about it. Survival mode almost, right? Exactly. Yeah, there was nothing I could do about it.

SPEAKER_01

Oh, that's gotta be so hard to not be able to do anything besides lie there and listen to the doctors.

SPEAKER_00

And I gotta say, and the doctors were changing at what time they would be there. It was really difficult too because Devin was still working, he needed to work. So, and he had early early mornings and stuff. We'd try to catch doctors on rounds, but there was no predictable nature of when they were coming. So sometimes they'd have to come tell me really serious things, but he couldn't necessarily be there because again, we needed him working. They also they give you these brochures um that show each week, like each gestational week, and like what outcomes might look like. So they gave me this brochure when the neonatologist came to talk to me because they were like imminent NICU stay. Basically, as long as she's alive, she's going to the NICU. So to prepare you, nothing really prepares you for that, I will say that. Um, but she gave us this brochure that was about the outcomes at 22 weeks, the likelihood of, say, like hearing loss, blindness, profound disability, death, like all these things. It's a really scary brochure. Uh so every time, like when we made it to the next week, so when we hit 23 weeks, I was ripping that brochure up and throwing it away. Because I like I understand they really do need to warn you of what the reality could be so that you can make an informed choice. But when you're already going through this traumatic experience, it's really hard information to hear.

SPEAKER_01

God yeah, it's hard for me to hear it and you're telling me a story, like, yeah.

SPEAKER_00

So then they bring the next brochure and it's about 23 weeks, and again, we were counting down. And I even when when Evie was coming, I was like, no, just stay in, stay in 20 more minutes, because then it's it's better. Like, obviously, it wouldn't have changed 20 minutes wouldn't have changed anything. I know that rationally, but like it just the label of what the brochure looks like for 24 weeks versus 23 weeks.

SPEAKER_01

Yeah. So she comes 23 weeks and 20 minutes 20 minutes shy of 24 weeks, basically, gestation. Um, what is a premature baby? Like, what is kind of like a safe? I don't know if there's any safe premature baby, but I feel like there's a certain week where they're like, this is like if you can make it to this.

SPEAKER_00

Yeah. I'm pretty sure that 28 weeks an under is considered a microprimie. Um Evie was considered an anno premi because she's just she was so early, she was really on the cusp of what is possible right now with science here. Um, so even at 29 weeks, there's still some kind of possible complications, and like again, lungs haven't fully developed, but like it looks like outcome-wise, 30 weeks and up, like you're you're kind of laughing. Like, I like I I I say that lightly, like obviously you're not because there are other things that can happen, genetic conditions and traumas and and traumatic birth, all those things. There are a lot of other complications that do happen. Um, but just gestation-wise, like my hope for a future pregnancy is a week that starts with 30, and then that's it. That's it. Anything after that I'm laughing, but like 30 would be great. Um, because just like it's night and day, it's night and day. Because even at 23 and 6, like your skin's not fully developed yet. Like she was like a little gummy bear. Like, we couldn't touch her. We couldn't be because like it's still kind of gummy and translucent. She's she's totally red because you can see through her skin. So like if you've ever seen like like pinkies, like like mice babies or hamster babies, and they're they're very, very pink or red, right? It was kind of kind of like that, but even more like translucent, like almost like jello.

SPEAKER_01

So when you when when I'm like, oh, did you get to do skin to skin? You're like, knitting. Right.

SPEAKER_00

No, so I had to wait, I had to wait 22 days before I got to hold her. And it was a long 22 days. And some people wait even longer. I'm in some micro premium like Facebook groups and stuff, and and I'll see like again, that was really helpful for me during our stay, just hearing what what was happening at other hospitals, what things, what things people were asking, all these all these different things. But some some of the people had to wait even longer to hold their baby, and I just can't even imagine because 22 days was just agonizing.

SPEAKER_01

Agonizing. Um what was labor like? She's so tiny, you know.

SPEAKER_00

This isn't a like how do you she was she was so tiny. I will say it was really chaotic because there's you know, like labor and deliveries in there, the nurses in there, the fellows in there, anesthesiologist is in there, somebody from Nikki was coming. There were so many people. There were so many people. And I was actually having a chat with the anesthesiologist because I was terrified. I was terrified of an epidural. I was like, I don't even know if I want this, I am so scared of this because they make it seem like you know, like if you move wrong, you could paralyze yourself, right? So that's that's a big deal, and like, you know, I I can't paralyze myself, like I need to move. So I was really nervous about that, and I was chatting with him about whether or not like I should do it, and like how much time we had to decide. And in the middle of that talk, uh one of the doctors was checking me and was like, get out of here, anesthesiologist, like it's time, it's now, and and the decision was taken away because it was too late. So you were going. So no. And honestly, I I think your brain does this thing with labor where it kind of blacks you out from remembering that it hurt or whatever. Because I don't remember I don't remember pain. I don't really remember I know that I was yelling, I do remember that, but I don't actually remember it hurting. But also, Evie was so small, so it was I think a whirlwind of like three and a half, four minutes. Like she was just she was out. Uh I it was two pushes and she shot out and they caught her. Um it she shot out with such force that it actually snapped the umbilical cord. So, because again, like it's just so much pressure, and because she's so small, I assume, she just really shot out like a cannon. They're clipping off what snapped. And she did, she she she touched my leg on the way out. I remember that. And we also heard her cry because I had asked, I said, you know, like tell it to me straight. Like, am I gonna hear her cry? If I don't hear her cry, should I be worried? Because usually you're waiting to hear that cry. But I also know that she's 23 and 6, her lungs aren't fully developed, like we don't really know. And they really prepared me to not hear her cry. So when she cried when she cried, I was like, oh my god, hallelujah! Her lungs are strong, her lungs are not sick at all, which was not the case. Um, but at the time I was like, Oh, she's she's like, she's such a fight, and I will say she was such a fighter, but I was like, she's she's got it, this is this is fine, everything's fine, she's got it. Um and then I saw her for all of two seconds before they're like running off to NICU, right? Because especially for Eevee, she ended up needing breathing support because she was so early, so they have to intubate, but there was no no resuscitation done.

SPEAKER_02

Okay.

SPEAKER_00

Um at before she came, they kind of ask you what measures do you want, and we had we personally had decided that if any extreme measures were needed, so like compression, CPR, that we would we would not do those because at that size and gestation it's so damaging that I don't know that necessarily the payoff of doing that is worth like her suffering. So we had decided if any extreme measure like that is needed, no thank you. But it wasn't, so they intubated her pretty easily. We had to wait a while to come see her. Um, so she was born at 1140, but we didn't get to come down and see her. I think it was like 1.30 or 2 because they they have some stuff to take care of first, and they have to check her out and make sure that they know everything that's going on with her. Um and it's funny too, because after she was born, I again like you're just in shock. So I'm just like eating a sandwich. I'm just eating a sandwich, like everything's fine. And looking back on like that feels so crazy.

SPEAKER_01

But you almost have to detach from it, I suppose.

SPEAKER_00

Yeah, well, and also I think just the come down from the like all the hormones and everything, like yeah, right. It's a really wild experience. So I'm just sipping this ginger ale cranberry juice cocktail that my nurse has made me and eaten a toast sandwich. And I'm also I haven't eaten in hours and hours because we didn't know, like I did have to sign some consents for in case we needed an emergency C-section. When a baby is that early as well, they have to do the classical um incision, so it's a long incision before another incision because of what the positioning of where they are. So I'm also really lucky that that's not what happened because to heal from that is almost I think two years of healing before you can even like try again because it would be unsafe to you, like so. Yeah, so uh it's such a strange thing to recount because as much as so many things kind of like went wrong, but so many other things fell into place too. So it's just like we're really fortunate in a lot of ways within our story while still experiencing like one of the worst misfortunes, I think, that you could possibly experience all the time. Yeah.

SPEAKER_01

Well was anybody Devin was with you in the hospital when you had her.

SPEAKER_00

Yeah, so Devin was there. My mom and dad both came, and his parents both came as well. They weren't in the room when she was born. My mom was gonna come in if I wanted her in there, and it was again, it was such a whirlwind, it was all happening so fast. And uh again, she could hear me like screaming, right? Because, you know, labor. Um but one of the nurses was like, Are you coming in or you're not? Like, what's going on? And I was like, There's too many people. And then as soon as I said there's too many people, my mom was like, Okay, I'll stay out here. So she didn't come in, she was they were outside. They were all outside the room. They caught a glimpse of her again when she was getting taken down to NICU. Um, but it wasn't it was nice to have everybody there. I don't know that I would do it the same the next time. I think it might be a more of a just us type of thing. Uh it was overwhelming everyone can come after. It went yeah, I mean it was overwhelming to have so many people there, but I I think too, it's just especially after you experience loss, there's this want to control as many things as you can and to change as many, even though again, none of these things have anything to do with why anything happened, but it just feels better to be like, and this time I'm gonna do XYZ, even if that's not gonna necessarily have any outcome. But I think it would also just be nice to experience it like calmly, intimately, privately, yeah, and then kind of invite people in after. But who knows? Because I might change my mind, I might uh in the moment be like, call my mom right now. Like, I have no idea. You can't really say.

SPEAKER_01

Uh, where does the name Everett come from?

SPEAKER_00

So Everett's actually my mom's last name. Oh, and I wanted a family name, I wanted a name that had some meaning to it. Um, but I also really like we call her Evie, so I really liked that kind of like little nickname as well. Yeah. And I mean, I really did like curse her with like, you know, we'd never be able to find her name on something. Because like me, Emma, my name's on everything. If you get a souvenir, you can they're usually sold out though, I will say. With a common name, your name's sold out, but at least it's there. But for Everett and the way it was spelt, it wouldn't, it wouldn't have been anywhere. But uh and then her middle name was Jameson, which is my my mother-in-law's maiden name. So her whole name was last names because she was Everett, Jameson, Mitchell Hyphen Perry. So it's a good name. Her whole name was made up of last names. That's a good name.

SPEAKER_01

And Evie, when did you think of her name?

SPEAKER_00

I want to say it was probably probably pretty early on. Like we had, you know, we had the the discussions and like different names, but like I I decided pretty ear pretty early on, I think, that that was that was kind of where I wanted to go with it. And I think we agreed upon it pretty much like pretty early on, I I think actually, yeah.

SPEAKER_01

I'm very interested in your experience because obviously your body went through it and you're the mom, but I also want to know how your partner was doing through all of this.

SPEAKER_00

I mean, it's really hard in a different way. Um Devin, he he worked the whole time maybe he was in the NICU because that allowed me to be able to go to the hospital every day. So I was able to go to the hospital every day and every night. I only took one day away because at that point they were kind of like, Emma, I think you should take a break, like sleep or something. So you were there like day and night. Take a break. Yeah. Uh I would come in in the morning and I would leave. I started leaving a little bit earlier in the afternoon because they kind of were like, You need to take care of yourself too. Because again, like you can't do anything if you don't take care of yourself. But it's really hard to not want to be like if this had gone a normal way, a baby comes home with you, the baby's with you all the time, right? And those moms aren't resting that much either, right? So for me, it was just like, no, well, what do you mean? Like, I have to I have to be here. Um, I would come in the morning, I was always there before morning rounds, so the doctors would round on all of the the babies and they would talk about all the different things. They would give all the stats, they would give all the tests that they did, they would say what upcoming things they're thinking about. Uh, and I took notes every single day. Um, in my iPhone on the notes app, I have one for every single day from rounds. I really, I honestly feel like I really got a crash course in like NICU nursing, um, respiratory therapy. Like, I especially once she died, I was like, assign me another baby, I'm coming in, like I I can do it. Like, because it's just what I did every single day, right? So it just gave me another baby. Yeah. Like, well, and and that's the thing too. One of the things that you notice for for us, because Evie was our first child, I didn't have any other kids at home, which meant I could be at the hospital all day, every day. But not every baby got that because different circumstances, right? Like some some parents couldn't afford to take the time off work, or some parents had other kids at home, so they couldn't come. When we were at Cheyo, some of those babies flew in from other places. Like the there wasn't necessarily somebody with all those babies, and it just it broke my heart. I wanted to be with every single one. Like it just it um but it was I really did appreciate being able to be there, and and be the reason I could be there is because Devin kept working. Um so he would come to the hospital with me at night sometimes, but then he also needed to sleep because he needed to go to work.

SPEAKER_02

Right.

SPEAKER_00

And I think that especially once like when she passed, it was harder in some ways because I got to spend so much time with her. And he didn't necessarily get to spend all that time with her. So, like, it it's another layer kind of to the loss. Um And it's not like no one did anything wrong. I think we we we did the best of what we could with the situation. There's no way to know that that's what's gonna happen, especially with her, like she was she was doing arguably very well, all things considered. So her passing was actually a bit of a shock at that point. It can still make sense, but it was still shocking at the time that it happened, especially because again, she was born out of an infection, she was born at 23 and 6, she was only 660 grams. Um, there were so many other points in her journey where it could have made sense that she died, and that's not what happened. So the fact that it was when when she did just really is is hard to make sense of.

SPEAKER_01

How did you go home and have a conversation with your partner? This is what I don't understand. Like there's so much going on. I imagine everything is overwhelming, and you're you're like 100% of your focus is on Eevee for both of you, even though Devin still has to get up and go to work. Do you go home and watch a show? Because light keeps chugging along. How do you connect as a partnership?

SPEAKER_00

Honestly, I feel like we really kind of suspended that right well, because again, it was just it was it was survival mode, like it had its finest. And I will say Devin also picked up the slack in a lot of ways. Like, I when I was pregnant, I was really sick, I didn't feel good, so I did not cook. I I cooked once, I think, while I was pregnant. He cooked everything else, and same with Nicky. I cooked once, and the the recipe actually didn't turn out, and I was sobbing. I was just sobbing because I was like, the one time I try to cook for you and it it didn't turn out. And I I'm not a bad cook. Both my parents are chefs, so like I know how to cook, and it just did not happen. It it turned out so bad, it was so disgusting. He still tried to eat it, which I couldn't even look at. Like it, I couldn't even look at it. It looked so awful. What was it? Wait, I gotta know the meal. It was a chicken pot pie soup, which should be delicious. But it just should be so comforting. I don't know what happened. I don't know what happened. It like curdled, it looked disgusting, it burnt, it's undercooked in some ways. Like every possible thing that could have been wrong with it was wrong with it. Um, and he still tried to eat it, and I was like, please, I was begging him not to eat it because I was like, the soup's gonna kill you. Like made soon eating it. The soup's gonna kill you. Right.

SPEAKER_01

So your everything you talk about is her.

SPEAKER_00

Pretty much. I want to say we might have gone somewhere like once. I think we went out for dinner, maybe. I think. But it's such a blur. Honestly, all I can really remember is hospital. Like, because day was hospital, night was hospital, everything was hospital, and I put like my phone on a bypass, so if the hospital called, it would always ring no matter what, because I was like so scared that I'm gonna accidentally put on do not disturb, or you know, sometimes they have to call you in the middle of the night. And we did get a couple of those calls in the middle of the night where they're like, Hey, uh, we need to test for XYZ, I need your consent, or like, oh, you know, we had they did extubate her once uh early on, it was about two and a half weeks into her life, where they took her off the ventilator and they put her on like a less invasive breathing method, which my one piece of regret with her journey is I wish that that had lined up with when we were there, because they did it when we weren't there. Um, and I wonder sometimes if I had gotten to hold her then, if she would have been doing a little bit better, because like there's a lot of uh evidence that skin to skin is so beneficial for babies, and at that point I hadn't held her yet, it was before the 22 days. When you're on the less invasive breathing method, they don't have to worry about the tube coming out because there's no tube. So they could have possibly put her on me, but because of when they they changed the mode, we weren't there. Actually, we had gone to a family barbecue. That was our first night out. That was our first night out the night that they took her off uh the breathing tube. But they called us in the middle of the night because they had to they had to re-intubate if she wasn't doing as well on it as they had hoped. Um, and then after that, we didn't extubate again until much, much further down the line. That was her only real attempt. But the other thing that I understood is that they have to pounce when they have the chance, because otherwise if you miss it, you've missed it. So I understand why they they did it while we weren't there, because they had to. Um But I kind of wish like maybe I had gotten to hold her then, and and I don't know if that would have I don't know that that really would have changed any of the outcomes or anything, but it just it would have been nice that if it could have happened then.

SPEAKER_01

I think it's really hard to not have those moments in your mind, and and you know, yeah, you know, rationally and logically, but still there's those little like, but what ifs? I I don't know if they would go away, right? Um 22 days. So you go see her every day uh uh and she's in um an incubator? Incubator?

SPEAKER_00

Yeah, yeah, they called it an isolated, but it's basically it is an incubator. Um and it's it's funny because again, because she was so early, for the first few weeks, they had to keep it very moist in there. It was very humid, so it was almost like a like a reptile enclosure because of how humid it was inside. It was but then once they don't need that anymore, because again, that was before her skin was fully finished developing, right? So they have to keep like a kind of moist, humid environment for her. And then it was really interesting to get to see all the changes that would have happened inside, because most women don't get to see that, right? Like it's just inside you. You don't see you just have this vague, oh it's a banana this week, oh, it's a broccoli this week, like, oh my my baby is the size of a mango, but you don't actually see all these things happening. And when she was born, her eyes were still fused shut, they weren't open yet. So, and it's really interesting to see that happen because when it first opened, it was just a little pinprick opening, so she had one little black dot, and that was it, and and then they don't both open at the same time, so she was kind of like winking at us for a little bit, and then the other one opened too. But but just to see all these changes and to see like she was born with hair even that early, uh, which I thought was so crazy, but I had been having heartburn before she was born, so I kind of thought that maybe she was gonna have hair, but to see her hair grow and get soft, and again her skin go from being this red, like gummy bear to actual soft skin, and like all those all those ch just this change in size too, because she was so small and skinny and kind of wiry, and then she was like, you know, putting on weight and and getting bigger, and they really they count every gram, right? So it just it was it was really interesting to get to see that, and it was special to get to see that too. And I wonder sometimes this is like a little bit universe and woo-woo, but if no matter what she was gonna pass away on December 10th, her due date was December 5th. So if she was born when she was due, we would have had five days with her. But she came so early, we had 118 days with her. So it's kind of like I I wonder, you know, again, universe woo-woo, like, did she know? Like, was this always gonna happen? And that she came so early so that we could have all this time with her and get to see her and get to know her. Um but then on the flip side of that, it's really hard that we got to get to know her for 118 days, and then, you know, we had to let her go, which is which is also really difficult.

SPEAKER_01

When okay, so she's born, she's rushed off, you go visit her every day for 22 days, and then you get to hold her and you go through all of this for 118 days. Was it was there a particular part in those days where it was she wasn't getting better or stronger or whatever you call it? Or is it the flip side where it's like everything is going according to plan when a baby is born this early, and then all of a sudden she starts deteriorating?

SPEAKER_00

Yeah, so there was a couple points where she was really maxed out on her pressures for her breathing support, she was maxed out on oxygen, and if you're at 100% oxygen and your pressures are already maxed out, if an event happens, so if a crisis happens, there's nowhere for them to go. So it was really scary the days where she was spending uh maxed out because again, if anything happened, there was nothing that they could really do. Uh nothing happened. So so like that part that that was that was difficult because in those days it could have made sense if she possibly had an event or worse and and passed away. And the other thing too was uh about eight weeks in, we met the palliative care team. Um, and that day was that was a hard day because at that point and how she had been doing, I didn't think that she was dying. And most people when they hear palliative care, you think of dying. You think of end-of-life care, you think of someone maybe that's has terminal cancer, like you there's a lot of things when you hear palliative, but most of the things that you think of is death and dying. Um, they actually do a lot more than that. They do kind of out-of-the-box pain management, they advocate for quality of life, like they they do so much more, and I learned that in meeting them. But the day that they came to meet me, I was like, I'm meeting the Grim Reaper, like I'm I'm in a room with several people in robes, like I don't know why they're introducing me to these people when they keep saying she's doing pretty well. And there was another right before I met them as well, the neonatologist who was on that week, because each week it was a different doctor. There was 14 doctors in total, and you'd have somebody on for the week, and then you'd have somebody on for the weekend, and it would change. He had very casually in rounds said, Well, as you know, we're not out of the woods yet, uh, in terms of her survival. And I was like, We're not? Like, I I was really that really took me aback, and and I I actually had a conversation with the doctor that was like, I really didn't like that delivery. I think you forgot that I'm a parent and not like one of the team. That was a little too casual for me. Like that was that really put me off and that really shocked me. And and he was apologetic, and we kind of got good on understanding, and I actually really appreciate that particular neonatologist. I think that he really knows his stuff, so he was one that I could trust. But again, that comment really was like set me spinning. I was like, what do you think? You're like, she's coming home.

SPEAKER_01

Like you're like, she's here until she's coming home.

SPEAKER_00

And and she had been doing pretty well again. She had a very rough start, that's the thing. Like she was starting off um, you know, at a pretty big disadvantage to to most babies that will have a start, right? And because we couldn't get her off the breathing support, um, we did a couple different courses of steroids, which is supposed to help with the lungs, but it just wasn't enough to override the damage, and then on top of that, having been intubated, the intubation causes further damage as it supports, so it's kind of this vicious cycle of supporting but damaging, and then supporting and damaging. So it's it's really perpetual. It's hard to kind of outrun the damage that it's causing, but also she needed it to live.

SPEAKER_01

So when do you accept that she's not coming home?

SPEAKER_00

Uh, what ended up happening was uh December 5th was her due date. So we celebrated her due date, and uh, the next day was the first day that I decided it it was okay for us to come in a little bit late. Devon was off that day, so we went out and got breakfast. We went shopping and got her a new little like plastic Tupperware like dresser thing to put her clothes away in. Because at this point she was wearing clothes, which was so fun, and she had all she was always best dressed, even when she couldn't wear clothes, because we got a lot of blankets for her and different patterns, and I was very careful in choosing again. It was one of the only things I got to do, so like I really went all in with it. Um we bought this dresser for her, we had breakfast, we came in a little bit later. I didn't go to rounds that day, which is the only time that ever happened. Uh so my my mean brain for a while told me it's because I changed the routine, and this is why this obviously that's not why this happened, but you know, brains are mean. And of course, that's the one day I changed the routine. Uh, but when we came in, the neonatologist was like, Oh, I'm so glad you guys are here. I really need to talk to you. We were like, Oh, oh, what do you mean? I'm literally I'm folding her clothes and putting them in the new dresser. I'm like, Pardon me? Like, and basically, the entire time that she's been alive, her blood CO2 has been higher than what's normal for any person. Uh, but her body was able to compensate for that. Like, basically, the bicarb in your body helps compensate for that, and also you can blow off some of the extra CO2. So the whole time she had been compensating, but this particular week she she wasn't compensating well anymore. And it wasn't a concern yet until that day, and then it was a big concern. It was um basically, if we don't get these CO2 levels under control, she's she's going to pass away. And the only thing they can really do for that is they can put her on HFO, which is like a high-frequency oscillator, and it's a way to kind of blow off the extra CO2 and try to recompensate that way. However, usually babies stop tolerating that pretty early on. So, like, they had tried that mode with her once at the general before. And uh sorry, at this point we're also at Chio. We had transferred hospitals because she was older and bigger, and they had up access to other stuff that that they didn't have at the general. Um, they had put her on that at the general before, and she did not tolerate it. Like, they put it on her for like five minutes and they were like, Nope, okay, back to the conventional event. Like, she hates this. Um, especially at this point, because she's past her due date now, she's like a term baby, she knows how to breathe. Even though she's being supported with her breath, she knows how to breathe. So if you're trying to breathe and a machine's trying to make you go, you're fighting against it, right? So they couldn't they couldn't get that particular mode to be successful on its own. Um, so the option that we were presented with at that time is that we could give her a paralytic, so to paralyze her body to try to force her body to tolerate this method. And for me at that point, I had really felt very strongly that she had never suffered, and that though she couldn't consent to anything, that she wouldn't have not consented to any of the things we had done thus far. But at that point, I felt like she was really showing us that like my body can't tolerate that, and I just didn't want to force it to with a paralytic, like especially because they couldn't say for sure, like, oh, it's got an 80% likelihood that it's gonna be successful, or like it's got a 50%, they couldn't say, they said, you know, it it might still not be successful, and then at that point we would have paralyzed her, and we would have robbed ourselves of any of the moments with her. Um and also you can't say for how long. Like, I again I spent a lot of time in the different Facebook groups and subreddits for microprimie parents and stuff. Some of the babies in the states are on paralytics for months, months, and again, like that's to help support their breathing and stuff like that. But for me at that point, I I I I don't know what kind of life am I giving you if I if I have to paralyze you to keep you alive, you know. And and the other thing too is we had had a lot of discussions with um the trach team because at this point she would have been getting the tracheostomy, so they would have had to cut uh an artificial airway to hook up her ventilator to the trach, which is a big deal. It's still a big deal. Like this tiny little and and a lot of kids do get those, and they you know they graduate off of it by two, and that's what they thought would happen for her at that point, so that's why we were okay with it because again, like I had had a lot of discussions. I worked in disability support for years, so I've worked with medically complex children, I've worked with children and adults with profound disabilities and a lot of different kinds of disabilities. So I'm really familiar in that world. So when I had talks with the palliative team, quality of life uh was really important to me. And like I think that sure, I think you can have a really great life and not be ambulatory and not walk, like you use a wheelchair and you have a great life. But I think that on the flip side, you could also if you're hooked up to a ventilator and you're not actually getting to live and do any of these things for yourself, how good of that life will it be? And there's a lot of different factors that go into that, but it was really important that we actually thought about them realistically. And because they had thought she would graduate off the ventilator, that's why we were okay with pursuing a tracheostomy. But if they had said, you know, she's gonna be on a ventilator for her entire life, I don't think we would have had the same um decisions or discussions. At this point, uh the Friday, we were supposed to be signing consents for her surgery on Monday or Wednesday. The tracheotomy? Uh but in Okay. So, like, really everything had been going well. Like, this is the point where it was very difficult because she had grown so much. So at this point, she's like nine pounds, she's over nine pounds. So she she didn't even look like a preemie anymore. Because that there's there's a certain look that some of the micro again, you can tell some of the micro premies were micropremies, because there's just a bit of a look that they have, and a lot of them uh are slower to gain weight, and it takes time and they stay small, and she was big. I think if she had gone full term, she would have been a really big baby. Because at this point she was nine, I think she was nine pounds four ounces. She was like a hefty little girl. She was she had like chubby little cheeks and chubby little arms, and she was so cute. Um, but she had been doing so well. So the fact that like now you're telling me the day after her due date that she's not doing well, I it's very hard to comprehend. And then when they told us again about this this paralytic, I was just like, I just don't think that that's right. We sat with it for a bit, but we were both on the same page that that just wasn't the decision for us.

SPEAKER_01

Well, what a blessing that you're both on the same page. So imagine trying to convince your person of that.

SPEAKER_00

Yeah, it's and I will say I I think that like Devin he put a lot of trust in me because I had been at the hospital every day and I took all these notes, I learned all the terms. I literally I feel like honestly, after she died, I I contemplated abandoning my career and becoming a nurse to work in an IQ because I just was like in free fall, but I also learned all this stuff. Like I learned all this stuff, and I was like, I I felt like I needed to do something with it. Um so I think he put a lot of trust in my knowledge around the subject to to help us make that decision. Um, because it is it is a really hard decision to make. And the other thing that I really appreciate too is that same doctor who had made the comment about not being out of the woods, he was actually on that week. So he was coming on that night. So he was with us, and we had a conversation with him the next morning just to make sure that you know we're making the correct decision, and you don't think that there's a really good reason to try this this uh intervention, or you think that it'll have good success. And he really he didn't sway us, he didn't do anything to sway us either way. And once we had made this the decision, he basically echoed that we've made the correct decision, like we made the decision that he would have also made. Um, they again they they won't do anything that is outside of the scope of care, right? So if it's going to definitely cause harm and not have a good outcome, they won't do it. You'd have to really fight the hospital to get a decision overturned if you wanted something like that. So the fact that they still offered it meant that there was some some merit possibly to it. But again, just even when they transferred her off of the HFO back onto her conventional vent, because at this point when we just declined to do um the intervention, um they decided that they'll put her back on what's comfortable. We're gonna keep her comfortable for as long as we have, basically, and then we're gonna either make a decision of like what day we withdraw care or um not care, I guess, but what day we withdraw technical support, or it'll happen naturally, depending on like how the next few days go. So they they don't do any more tests, they don't prick her feet or test her blood anymore, they just kind of kept on her pulse ox to make sure that her she's still oxygenating and and like they checked her heart rate and and and temp, and that was it. Um but to transfer her back onto conventional vent, they did put her on a dose of paralytic, just a quick dose, so it I think it maybe lasted about 30 minutes an hour um just to keep her comfortable in the transition because again, she had just been fighting on this machine so hard, right? Because she didn't like that mode. I took a picture of her while she was on the paralytic to remind myself that we made the right decision because just seeing on her even for that like 30 minutes was just so awful. So I have that picture to to remind me sometimes that that we that we made the because again, brains are mean. Brains are mean, and sometimes they try to convince you of things. Um, so I'm glad that I that I had the thought to take that picture because as much as I hate that picture, sometimes I need that picture to to remind us that we like we did make the right decision for her and that like she didn't suffer because of the decisions that we made.

SPEAKER_01

Emma, I can't imagine what it was like to make that decision. But I'm glad that you do have those little reminders, as hard as it is to look at that photo to remember that you did make the right decision and and why you made that decision. Um, okay, so we're gonna just put a pause on this podcast for this week right here, and we will take it up from this spot next week in part two with the uh incredible Emma who's sharing with us Evie's story. So thanks for tuning in for Bonda. We hope you'll listen again.