Ali: Embracing Motherhood, Rare Diagnosis Resilience, and Navigating Birth Challenges During COVID-19

When Ali held her newborn son Leo for the first time, she never imagined the rollercoaster of emotions that would unfold from his rare diagnosis. Our latest podcast episode takes you through Allie's poignant tale, where her maternal instincts kick into overdrive and her mental health is put to the test. Her story of navigating the challenging waters of Beckwith-Wiedemann syndrome is a powerful testament to the resilience inherent in motherhood and the silent battles parents often face behind closed doors.

Labor and delivery can be a daunting dance of anticipation and swift, unexpected turns, as Ali's experiences with each of her three children demonstrate. From the calm, spiritual ambiance she created during Leo's birth to the innovative 'towel trick' that aided her through the strenuous final moments of labor, Ali shares her journey with unflinching honesty. Her reflections include the trials of childbirth, the profound joy of the golden hour, and how even amidst the trials of the COVID-19 pandemic, the arrival of her youngest, Kennedy, shines as a beacon of light.

As we wrap this episode, we're reminded of the connections that bind us all in the shared experience of parenthood. Ali's vulnerability in sharing her journey is a step toward breaking the silence that often surrounds parental challenges and rare diagnoses. We thank her for the courage to speak out and invite you, our listeners, to continue this conversation in our Golden Hour Birth Circle on Facebook. Whether you're trekking through the early days of motherhood or reminiscing on the memories of births past, we're here to support you every step of the way.

Connect with Ali on Instagram here!

We extend our deepest gratitude to this episode's sponsor, Ergobaby. Their dedication to enhancing the parenting experience through ergonomic, thoughtful designs makes them the ultimate companion. Thank you, Ergobaby, for supporting us and making this empowering episode possible. Visit their website to explore their innovative baby carriers, strollers, swaddlers and more that blend style, comfort and functionality. Ergobaby's sponsorship allows us to continue creating meaningful content for parents. Discover the perfect products to bring joy to your parenting journey today on their website here!

To sign up for our newsletter visit our website and blog: www.goldenhourbirthpodcast.com
Follow Liz on Instagram here and Natalie here
Follow us on Facebook here.

Transcript

Speaker 1: 0:00

Have you ever felt an instinct that something was different with your newborn, even when doctors couldn't pinpoint it? In this vulnerable episode, Allie shares her journey, navigating her son Leo's rare diagnosis and the ways it impacted her mental health. She asks the powerful question when you face challenges as a new mom that others may not understand, how do you move through the isolation to find support? Allie's story provides insight into trusting your intuition as a mother, finding community when you need it most and learning to care for yourself amidst hardship. Tune in to hear how Allie found light even through life's curveballs.

Speaker 2: 0:39

Hey there, incredible listeners. Before we dive into Allie's story, I want to take a moment to talk about something really special Ergo Baby.

Speaker 1: 0:46

Motherhood isn't just about the baby. It's about you, the woman, bringing life into this world, and when you're doing something that important, a lot of it comes down to feeling confident about being a good mom.

Speaker 2: 0:57

And that's where Ergo Baby steps in. Instead of creating things to add a long list of baby things, Ergo Baby makes products for the mothers who are using them the sensation of holding a newborn baby for the first time, bundling baby up into their crib for the night ahead, that first visit to the in-laws With Ergo Baby it's not just about functionality.

Speaker 1: 1:18

Using their products make you feel like the amazing caring mom you are. From baby carriers to high chairs, each Ergo Baby product is designed to embrace your nurturing side and enhance your motherhood journey.

Speaker 2: 1:29

What I love most about Ergo Baby is their products are more than just items. They're a reminder that you're doing an incredible job.

Speaker 1: 1:37

So, to all the women out there listening, if you're looking for products that resonate with your nurturing spirit, check out Ergo Baby, because motherhood is about you too.

Speaker 2: 1:47

Alright, let's dive into today's story. Get ready to be inspired, empowered and reminded that you're never alone in this journey.

Speaker 1: 1:54

The Golden Hour Birth Podcast A podcast about real birth stories and creating connections through our shared experiences.

Speaker 2: 2:02

Childbirth isn't just about the child. It's about the person who gave birth, their lives, their wisdom and their empowerment. We're Liz and Natalie.

Speaker 1: 2:11

The Golden Hour Birth Podcast, and we're here to laugh with you, cry with you and hold space for you. Welcome to the Golden Hour Birth Podcast.

Speaker 2: 2:23

I am your co-host, liz and I'm your co-host, natalie, and tonight we have Allie Hawn from St Louis. A lot of St Louis people and they know her survive and thrive, alma.

Speaker 3: 2:35

Thank you for coming on to me, Allie. I'm so glad to be here. Thanks for having me.

Speaker 2: 2:40

Yeah, so if you want to go ahead and tell us a little bit about you and your family, yeah, sure, yes, my name is Allie and I am from St Louis originally.

Speaker 3: 2:52

I was born and raised here. I ended up going to Mizzou for school yes, go Mizzou my husband there. We actually were friends throughout college and got together our senior year Afterwards. He was born and raised in Columbia. He decided to stay there. It was 2008, y'all, so I'm a little bit older.

Speaker 3: 3:18

I moved back home with my parents during this major recession and then he moved home with his parents. I got my dream job at the St Louis Zoo. It was unbelievable. I was so, so, so excited to work at the zoo, but I was missing Kyle and eventually I'm trying to think how many years it was, but it was maybe two years of long distance and he finally came to live in St Louis, which was wonderful, and we bought a home and we lived the quintessential life of after college sweethearts and we decided, after many years of traveling and having fun, that we were ready to start a family.

Speaker 3: 4:07

So along came my three children, who we'll be talking about tonight Olivia, who is now seven and we were just joking that it's almost a decade ago, so it's like racking my brain for these details but Olivia, who's seven, leo, who's five, and Kennedy, who's almost three, and it's my baby, and I'm like, how do I have a three-year-old who is my baby?

Speaker 3: 4:33

Anyway, so, going back, so that's kind of who I am, but post-baby or pre-baby, my pre-baby life. Kyle and I are a little bit older, so like at this point we're like 28, 29, and we're ready to start a family. So we were traveling a lot internationally and we had gone on this amazing trip to Italy, austria, and we're like we're going to start trying right now and tried and didn't get pregnant and came home and like you know what, when you first start trying, you're like, oh, this is going to happen pretty easily, and it just didn't at first. And finally, a couple months later I did get pregnant and I don't even know do you want me to go into that pregnancy or do you want me to talk a little bit about anything else?

Speaker 2: 5:27

before I move on, like with Olivia.

Speaker 3: 5:29

Yeah, so Olivia was. I got pregnant with her, and I just remember being like so wrapped up in every detail. I wanted to know, like literally every day, how she was growing, like what was happening. I was reading every single piece of literature I could get my hands on, like I just wanted to know everything about my growing body, but also what was happening with her. And so the birth or the pregnancy, though, was pretty typical, I would say, like there were no major issues, like I just was getting big fast, and I was like, oh my gosh. Like by the end of the pregnancy, I was like I'm done being pregnant.

Speaker 2: 6:15

You know what I mean.

Speaker 3: 6:16

Yeah, like yeah, and she cooked all the way through. So my birthday is April 25th. I had my 40 week appointment on the 26th and I remember going on in and being like all right, like if she's not coming soon, like we're going to have issues, like I was just so ready to have her and they did an ultrasound and they were like your fluids are low and we're going to have to induce you, like today, and I was like, yeah, like this is like the best case scenario. I mean, I was huge and we were just ready to have a baby. You know, like both of us were very, very ready, and so let's hop into her birth story, because I have a lot to tell you all. So I might as well just start with Olivia. I went in to be induced. Well, first they told me we're going to go get induced and we were like all right, let's go home, let's go get crazy bowls and wraps. It was like we need to make sure to eat.

Speaker 3: 7:20

We need to eat right now and I was like I want to make sure that I'm fed and like we're all good and like, for some reason, like when it happens like that, you go to the doctor and they're like it's today. All of a sudden you're like wait, do I have everything I need? Like I was second guessing everything. So I felt like I completely repacked. You know, we got our dog taken care of, but we got back to the hospital and I think that my expectations you know I had read so much like for Olivia like I went and actually did birth classes in the hospital before I gave birth.

Speaker 3: 7:56

I knew that I wanted an epidural, I had like a birth plan in place, but I knew that it was fluid in my brain. I was like I trust my doctor, like I'm just going to like kind of let this go the way it's going to go and we'll see what happens. So I felt like pretty prepared in my head going into it. But it's safe to say, like I don't think that anything you read, you know, adequately prepares you for like what really, how it really goes down, and I think that the biggest surprise is that you know it's never going to go a hundred percent to plan and I didn't know that for this birth. So knowing that for my other births helped a lot. But I came in thinking I go in, I get my epidural, the baby comes out like we're all good right.

Speaker 3: 8:47

Like that's just like how you imagine it. So we go in, I check in, they get me into a room, they get me in a gown and they're like there's this huge storm rolling in. Everybody has to go into the hallway and, like I had just gotten, like down on, I wasn't an active labor, but I'm like listening to these women giving birth in the hall, oh my God, oh my God, it was wild. It was wild. I have a picture of what the sky looks like. I mean it was green, ominous, like it was April. So you know it was probably a tornado, you know. But like, yeah, anyway. So that's when I started to get nervous, because I'm hearing these women giving birth, like, oh, this is real now, okay, let's go. So we get into the room and they're like all right, storms pass. Let's get you hooked up, let's get you on Potosin, you know, so that we can get this going, and I'm like, cool, potosin, I'll take it.

Speaker 3: 9:45

Potosin is supposed to strengthen your contractions. Well, you know, it takes hours to do so because they are slowly increasing the amount of Potosin that you're getting and they give me this ball to bounce on, and so I'm like sitting there bouncing and there's hours that go by and I'm at like a level six, you know, and and they're like are you feeling anything yet? And I'm like I'm feeling nothing, there's no pain, there's no extra contractions, absolutely nothing. They're like oh, that's a little bit weird, like let's just keep upping it. And I made it to a 10 before, which is one of the highest levels they can get to with Potosin, and they were like we don't see this very often, but your, your cells likely aren't binding to the Potosin and so you, it just literally does not work, and so it was doing nothing for me.

Speaker 3: 10:39

So, which was a little scary, because I was like I just went through all of that, like what happens now? Like I'm still at two centimeters, you know what happens. And they're like well, we're just going to hope that it's still priming your body somehow and we're going to give you the epidural and break your water and just see what happens. So I was like, okay, but in the back of my mind I'm thinking if she doesn't drop enough, you know, and if my body isn't really working, this induction isn't going to work and I'm going to go into a C-section. Like you know, I started like thinking that already, and this was already late at night, so I had checked in around one ish and this was like probably had to have been like 11 o'clock because 10 hours later.

Speaker 3: 11:29

So they decided, okay, we're going to, we're going to do all these things. They put the catheter in, they broke my water, you know epidural in all of those things. Let me just tell you, all of those things were fine. You know what wasn't fine? I miss this that thing that they the the line that they put in your hand. Does anyone talk about this on this podcast? Okay, yeah, literally the worst part.

Speaker 2: 11:53

Yeah, it's my like, my first one, like probably six, seven tries with like four different people.

Speaker 3: 12:01

Yeah, it's the worst. I was so scared about the epidural. I didn't want it in my back, I just was scared that something bad was gonna happen. That was nothing. The epidural was nothing compared to the light.

Speaker 3: 12:12

Anyways, just wanted to throw that in there, yeah, so so I'm all hooked up and Kyle's like sleeping in the corner. This might have been the easiest night of his whole life. He was like how can this man be sleeping here? We're about to have a baby, but no, not affected. But so so I'm laying there, I'm just watching the monitors. I felt like I just looked up and was watching the monitors all night long. And finally and they would check me periodically, but not much, that's by like 6 am they're like all right, you are at 10 centimeters. So breaking my water helped all of that progress. So I was really happy about that and they were like but we want you to labor down a bit, meaning that they wanted her to come down in the birth canal even more.

Speaker 3: 13:04

I personally think they were just wanting a shift change. So the nurses change at like 7 am or something, maybe 7 or8, and I'm pretty sure they were just like didn't want me to start pushing with one nurse and then have to get another one. Also, like my doctor, I knew she was not gonna be in that weekend. It was another doctor in the practice and God bless her. I was like waiting. I was, you know, it's your first baby. I was like, let's go. And they were like, yeah, we just called her and she was in line at McDonald's Getting a sprite and then he gave her the wrong order so she had to go in and I was like Like, get her here, you know right.

Speaker 2: 13:50

No you're not.

Speaker 3: 13:54

I'm like get her here, get her here, okay, thank you. With her spray. I she's like I'm, I'm here and you know, god bless her because this all ended up working out because of her. But she, you know, they're like, take a couple practice pushes. So I'm pushing I also was not prepared for pushing in general pushed and she, every time I push, they're like oh, we see her, we see her, and then she would come back up and and push again and they're like there she is, and then right back up again and I was like, okay, and this is gonna be okay because they can see her.

Speaker 3: 14:35

You know she's, she's gonna come down. And I pushed for two hours straight. And when I say like two hours straight, and people like then it's long time to be pushing without breaks and and I don't think that people realize what that's like until you're actually in it, I Was throwing up, they put me on oxygen. I Originally I was like this is not working, like I don't know how much longer I can do this. So the doctor came back and she was like there's something I want you to try and if it doesn't work, we're gonna, we're going to call it and we're gonna do a C-section and, like you know, from the beginning of this entire thing I don't know why in my brain I was like I'm gonna have a C-section and, quite honestly to me, at this point in my life, anyway, the baby comes is how the baby comes. I'm like there's nothing.

Speaker 3: 15:29

But when, when you're like Expecting to have a vaginal birth or things to go, or you're like your brain is just in a million places, um, I yeah, I just wasn't prepared. So, anyways, she said I want you to take a towel and I want Kyle to take the other end of the towel and I want you to pull on it, like you're playing tug of war. And I was like I can do that, and Kyle was like I can do that. And I was like, and Kyle is a strong man, he's a big man, I was pulling so hard and he was like falling towards me, um, and, and after probably I'm guessing like 20, 30 minutes, we got that baby out. She came.

Speaker 3: 16:14

That's such a good idea and it was like I could not believe it. But I tell every mom, first-time mom, before they go into their labor if it's not working and you just want one last stitch effort, try the towel trick, because there's something about the way you Bear down while pulling. That is really helpful.

Speaker 1: 16:36

Yeah.

Speaker 3: 16:38

And, and I think that when you decide to get an epidural, there's only so much you can do in terms of positioning, right, yeah, so so that was a game changer for us. Um, and and when she was born, I mean like, oh my god, it was like the heavens opened up and a light was like coming and you talk about, like this is called the golden hour, and there is just something, oh, that is just so precious and amazing about that moment. Um, and yeah, having her earth side was, was beautiful, and it was like you know, everything that you were scared of, everything that was uncomfortable, dissipates. Um, there is one part of the story that I forgot, and it was the epidural button. Um, I was scared of feeling labor and birth, um, and so they're like, just press this button anytime you feel like you might need more, and I pushed it. Probably it was too many times.

Speaker 3: 17:36

I can't tell you how many times I press the button, but after you give birth, they tell you, hey, you have to get up and go to the bathroom, um, just to like, make sure everything's working, and like we're moving again. And I could not. I literally could not get up, and they were like you have to like you, we can't let you out of this room until you go pee. And I was like I literally can't stand up, and they had to put the catheter back in me, which at that point everything was kind of wearing off, but like, how awful, like I was, like it was not fun, yeah, um, another piece of advice is just to to hold off on the button just a little bit. It's a little bit like Because, because you do eventually have to get up and and I and I learned that, um, I learned that the hard way and and changed it for my other bursts, but the weirdest feeling, though, is getting up after birth, though it's so weird.

Speaker 3: 18:33

And it, and I don't know if peeing is hard for anyone else or just me, or is it like you know, there's tons of people in your room and all of a sudden they're like, well, pee, and I'm like I don't, but I don't know if I.

Speaker 2: 18:44

Anyway, yeah, so fun.

Speaker 3: 18:46

And you also like you. All of a sudden, you're like all these people just saw, saw this amazing thing happen. Like wow, um, yeah, for being a first-time mom is a trip. Um, third time mom, I'm like my leg first spread. I was like everybody come in my room watch this baby move forward.

Speaker 3: 19:03

But the first you know it's scary, um. So. So postpartum with, with um Olivia um, she was jaundice, so we actually stayed in the hospital a little bit longer than we would have typically. Um, she had jaundice. Um, we stayed in the pediatric unit, um, but when she got home things kind of started to level out and everything was okay.

Speaker 3: 19:26

Um, I was running on to straight up high adrenaline. I felt like I could do anything. At first I really really did, and there was something about um that gave me so much pleasure and pride being able to do it, um, and that probably lasted longer. Um, then then I saw it, it maybe would. Um, actually I had no idea, but like now that I talk about it, like months I kept up this facade, that like it was good and like I don't think I realized how not good I was until After I had my second. You know and I don't know if that makes sense to you at all but like, um it just I just felt like you know, I don't know, this is this is my job, I can do it. You know, like grin and bear it, like all of this stuff, but like then repressed feelings, you know, love like um, you know, not really ever processing that birth? Nobody, you know, because it was semi smooth and she got here and she was healthy, you know. Nobody really asked about it after that.

Speaker 3: 20:35

But as a first time mom, there's something about talking about your story. That's healing, just letting it out. There are scary moments in probably every birth or moments where it kind of like builds up that trauma and so like I had really never shared that story before I did on my own page, which is so wild and why I love this podcast so much is because I think that it is such a healing journey for moms to tell their stories and then so helpful to other moms to hear it, to be like I'm not alone. So what happened with Olivia is okay, so life went on. I never found myself getting mad at well at the time.

Speaker 3: 21:18

At the time postpartum like let's just say like postpartum depression or postpartum anxiety, like there was still a little bit a decade ago of a stigma surrounding that and so like people really didn't talk about it if they were feeling anxious or depressed, and I wouldn't have said that I was anxious and depressed before I had babies, you know what I mean. Like that it wasn't really something that I was aware of. But I slowly could feel I was never mad at my babies. I was really mad at my husband. I had the resentment built up and started building up hard and with Olivia I just felt like, eventually, like I was like I'm so strong, I can do this.

Speaker 3: 22:04

But then I was like this isn't fair. I just had to go through all of that. You know, being pregnant it's so uncomfortable, like it's a lot, and then have the baby, which is so hard to actually physically have the baby, and then, like right after, like I'm at home doing every seemingly everything. It felt like everything and I was like what in the world is this Like? This does not seem right. But you know, it was just like one of those things you get through. I guess right, yeah, and I'll tell you I did not have the same mindset with Leo, you know. Okay, so we're moving on to Leo, okay, so Livy was 18 months when I got pregnant with Leo and we were trying. So I was like if we're going to do this, we're going to whip him out, right?

Speaker 1: 23:05

And we're just like we're going to rip off this bandaid, Come on.

Speaker 3: 23:11

And I got pregnant and we were so happy. But there was this lingering anxiety with Leo's pregnancy that I did not have with Olivia and I felt it during pregnancy and I don't know if it's because I had a toddler at home at the time. I was managing that and my own pregnancy it just it was. It felt different. It felt different than the first pregnancy where I was feeling so happy and into everything you know and I was just something was separating me from this pregnancy and I did not know what. And I had gestational diabetes with Leo and I was diagnosed with that and that came as somewhat of a surprise and I was managing it through diet and for me that was extremely stressful because when I am pregnant, I was like the best part about being pregnant is eating all the things I was. So I love being pregnant, feeling like you know, not that it doesn't matter, it does, but like it just was exciting to have a Rice Krispie treat once in a while, right, and when you have gestational diabetes they're like you can have that, but you also have like, have five pieces of cheese with it, you know. So it's just it was a lot of learning, but it was. I don't know if that like felt like it sucked the joy out of pregnancy for me or like some, you know, and I that sounds so dumb, but like I just there was something that felt so, so weird, but also like, at the same time, I remember telling my husband there's something keeping me from like wanting not wanting this pregnancy, but like being connected to it, and I could not figure out why. And it was like I don't know if my body or the universe or God is like not allowing me to get close to this baby because something bad is going to happen. And so the anxiety turned into intrusive thoughts, you know, and that it wasn't. It wasn't fun, it wasn't fun and I feel awful about that.

Speaker 3: 25:24

The week before I went into labor with Leo, we moved homes, so we were going through a lot of changes at one, but to also can perpetuate some, some anxiety. And I remember I was 39 weeks pregnant and I woke up probably around midnight, as most pregnant people do, to go pee and I was like feeling like really uncomfortable, like I really can't get back to sleep I'm going to go get in the bath and got in the bath and my contractions, which really started off as like just feeling like normal period cramps just kept getting stronger and stronger and I was like I had never gone into labor before. With Olivia I was induced, so this was all brand new to me. But it was also like really exciting. So like I and I'm like kind of like a spiritual person, so I turned I had made like a baby K playlist. So I'm there with my candles and my playlist and listening to music and kind of timing, what was going on? And they were. They were pretty strong and I was like I cannot believe that this is really happening. And it was.

Speaker 3: 26:33

So got back into bed, told my husband he was still sleeping, of course, god bless, kyle, oh, I suck at shit, or Kyle. So he, he was like you think it's really happening, like I, I do, I do think it's happening. So I called the nurse line in the morning and they're like maybe. Oh, I forgot to tell you guys this part a week before that I didn't feel the baby move, um, and it was freaking me out and so I had gone in for a stress test the week before, okay, so they had already kind of like seen me and heard from me the week before. So I called them. They're like maybe, maybe not, you know, if your water hasn't broken, like, you can go in and be checked, but just expect that they might send you home. And I was like okay, fine. So I felt like it was pretty strong. I felt like the contractions were were getting more and more intense. I had taken a shower and I was like standing there and I like it was taking my breath away.

Speaker 3: 27:29

So we get to the hospital and there's somebody right in front of me and she's checking in and then, like it's like moving like slow as molasses, I swear. I was like this is like of course this is happening to me. They're like you're good, like don't worry about it. I'm like okay, so so I get checked in. They put me at a room she must, they only have one nurse on. She's the one checking all the women and she comes in with her gloves on. She's like I probably got to tell you to go home.

Speaker 3: 27:59

I just told the lady before you go home and I was like okay, fine, whatever. I swear she was nurse, nurse ratchet. And she said she said, suck her fingers. And up there she's like, oh yeah, she was like you're four and a half centimeters and your, your bag is like bursting or something. I, what she said was like so my mind was just blown. She's like I don't know how your water hasn't broken, it's just bursting. I was like, okay, so you're keeping me. And she's like, yeah, I'm keeping you. Like, okay, thank God.

Speaker 3: 28:33

So they bring me to a room and I'm telling you, girls, it was a night and day experience from Olivia's birth, night and day, and it was just so incredibly peaceful and so incredibly smooth. So, like I get to the room, like I'm already going to get an epidural I know this because but no, no, potosin needed. We were already there, put the epidural in and it was a holiday weekend, Nobody was there. I had this amazing nurse and we just like I swear they gave me a peanut ball or they went to break my water. It broke on its own. They gave me a peanut ball which I had never used before. I bust peanut balls. Oh my gosh, why didn't we invent that?

Speaker 3: 29:24

Like it is the best invention ever.

Speaker 2: 29:26

Okay.

Speaker 3: 29:27

So I'm laying there and the last thing she had said to me she was like if you feel anything uncomfortable, just let me know, just press the nurses button. And when I was like we're going to be here for a few hours, so I roll over and I'm like about to fall asleep and all of a sudden I'm like I feel this urge to poop and I'm like, whoa, that is a weird feeling. And I told Kyle and he's like what are we doing in the middle of the day? He's like leave me at the corner again. He's like if you got a poop, if you got a poop, you should poop.

Speaker 2: 29:58

And I'm like.

Speaker 3: 29:58

Kyle no, she was like no, no, Can you go get a doctor or a nurse?

Speaker 2: 30:09

I'm like.

Speaker 3: 30:10

I'm just going to shit on the bed right now. Okay, this is awful. So he goes outside. He's like I don't even know what to say. I'm like to this day. I don't feel right. Oh my God.

Speaker 2: 30:27

She's got a poop, you guys, I love my husband.

Speaker 3: 30:32

He's just funny, so so so he, the nurse, comes in and she checks me and this is an hour after the epidural and the peanut ball Okay, this is fast. And she was like, ellie, you are at a 10. Like we're going to have a baby here soon, and it was just so quiet. You know what I mean. Like I feel like Olivia's. It was like it's so stressful and it just felt so different. This just felt so good. So my doctor drove in. It was a holiday weekend, god bless her Best freaking OB on the block. She came in, drove in and surprised me.

Speaker 3: 31:15

And she delivered Leo and I. My mom came in. She came and sat in a chair next to me and I pushed for five minutes and he came out and it was beautiful and it was also like the heavens opened up and like you know that feeling when the baby comes out of you, and it's just like the pressure is released. You just feel the intense, like this just feels so good.

Speaker 2: 31:47

I was like love, like see a woman's brain when she gives birth, or any person's brain when they give birth. And like all the endorphins and oxytocin. That's just like firing, it's like the best feeling.

Speaker 3: 32:04

It would be, it would be the most beautiful brain scan ever, Because you know that feeling, it just is, it's like heaven and but like, right away, you know, they hold Leo up and they're like, here he is, and I just remember looking at him and I was like something's wrong, something's different, like and I and I hate to use the word wrong because I don't want number one anyone to ever think that if their baby is different, that there's something wrong but, like, as a mother, that's just like what my brain was telling me like there's something going on and I said I, I birthed, or I um videoed all my life, I um videoed all my births and I said in the video his mouth is so big and um, and I don't think I knew what that meant at the time, you know, um, so we do skin to skin, it's so great. But like I'm sitting there like just examining him, like I can't, and I I don't even know how to explain it. There's just like this moment where your brain, like has just trying to figure it out. You know, and everyone around me seem to be completely oblivious to this. All right, so like they're more worried about my gestational diabetes, that they're going to test his blood, make sure that he's okay, that I'm okay. So there's a lot going on, you know, kind of in the room, but nobody's really thinking about that. We kind of get him cleaned off and I look at Kyle and my mom and I'm like do you see anything that's different with him? And they're like no, no, no, he looks like a baby. And I'm like, okay, you know, this must be me, you know. And so we kind of just go through like the routine. You know you have skin to skin, they do all the stuff, they check them out and then they put them back Now, like he's healthy, you know he's breathing fine and you know all the spanking and he's great.

Speaker 3: 34:17

And the next it was probably I think it was that day I had voice concerns to my nurse saying you know, I think there's something different about him. And she was like I trust you, like we're going to talk to the pediatrician who's here and we'll start to like try to get answers for you. And so the house pediatrician came to see us and he was like I do see what you're saying. His mouth does seem a little big and his tongue seems a little bit big, but it's nothing I've ever seen before, and like those words really got me, because I was like you're the house pediatrician here at one of the biggest hospitals in St Louis and you have never, ever seen anybody who's looked like him. I was like how is that possible? You know what I mean. Like all I wanted was an answer.

Speaker 2: 35:09

Yeah.

Speaker 3: 35:11

And we had my OB, we had midwives, we everybody who came in the room. I asked them. I was like, have you seen this? And they're like we have not. And it just, and I was like, okay, I was like none of the medical books, like what, I don't know how, nobody has an answer for me, but that's fine. But otherwise he was healthy, so he was breathing okay and he was nursing, which was amazing. And so we just like really kind of put a pin in it for that moment because there was nobody with an answer.

Speaker 3: 35:48

Right when we got to our own pediatrician, he suggested that we go see St Louis Children's genetics to kind of start ruling out any genetic disorders. But he was kind of saying that he thought that it might be something called Beckwith-Wiedemann syndrome, which I had never heard of in my entire life. I had never heard of anybody with that. It did not run in my family and it just was one of those things that I was like what does that mean? You know what I mean For Leo and for his future? And we ended up getting a clinical diagnosis from the St Louis Children's Hospital team with Beckwith-Wiedemann syndrome. They were spot on and basically what that is it is a genetic disorder that affects the 11th chromosome and it is not. It can be passed down through parents, but it was not in our case. It is a complete blip and what it is is it is an overgrowth syndrome. So if you've ever seen on like Guinness Book of World Records where they have like maybe a child or a baby with like a really big tongue, like they're born like with it sticking out, that is like one of the clearest markers of Beckwith-Wiedemann syndrome. Now there's like a physical part of Beckwith, but there's also this like really scary part of it which is one in 10 children with this syndrome develop childhood cancer. So that was like the biggest part of it, because to me, we were seeing pediatric dentists and we went to ENTs and we're like what can we do about the physical tongue? So let me just I'm gonna go back just a second His.

Speaker 3: 37:37

What was it was with him. What made him so different? Is that not all Beckwith is the same. They call it a mosaic syndrome. So they come out and they can look different. Everybody looks a little bit different and for him what it meant was that he had hemipertrophy of the tongue, which means one side was very small, like everybody has a line down the center of their tongue. One side was really small and one side was really really big. It also affected his jaw right here. So like it almost looks like he's like has a thin side of his cheek and then like a really almost like there's like nuts in his cheek on the other side, and so they basically diagnosed him with that and I was like, well, okay, so let's go on with the cancer part, because one in 10 doesn't sound so bad when it's like one in 10 kids have like colic, you know. But like when they say like one in 10 kids have can have cancer, like that just like changes things for you, you know.

Speaker 3: 38:40

And just like before I go into his treatment and stuff and all the things that I did to like make this better in my brain, this, I think, was sending my anxiety into a spiral. I was consumed by this and what it meant for him and then, like I went from being almost like not sure, you know, during my pregnancy, feeling like I couldn't connect to it, to being like overly connected, like I have got to help my baby, I have got to advocate for my baby, I have got to be his voice Like it felt so heavy that I had to find this answer and that he needed to get the help that he needed. And that was my mission. It was just my mission, but that didn't make so. That was like all part of what was happening. But I also had just had a baby, you know. So like dealing with postpartum, but that all feels like a blur now because I was so focused on on just this diagnosis and how to to be okay, yeah, with that.

Speaker 3: 39:51

And the first thing I did and I will say this to anyone who has something like this happen either whether you find out that there is an abnormality during pregnancy or you don't find out until after the baby's born find a support group of people who have the same diagnosis, or do some research and you can find it anywhere. I went on Facebook and I just like threw in there back with Weed of In support and found an amazing support group with people all over the world and all of a sudden I was seeing pictures of little babies that looked exactly like Leo and I was like that's what I needed and I made a friend who I talked to to this day. Our little boys were born two weeks apart and just like going through this process together of blood draws and ultrasounds and all of these visits and figuring out you know how we go about this and having people to talk to about it. It changes your whole experience. So I always like to bring that up, like if they're because you're gonna get a surprise here or there. You know what I mean.

Speaker 3: 41:02

Like there's nothing's perfect. Nothing's perfect in pregnancy, nothing's perfect in postpartum and with your child. So like at some point along the line you might need a support group, and so that's why I always just say, like go find one wherever it is. Anyway, so the good part about this story is that the childhood cancer risk like diminishes at like age five it's I mean it doesn't diminish it much lower, and then by age 10 it's gone. So like that's amazing and in terms of physical stuff, like he's gonna need a jaw surgery when he's 16. You know what I mean. Like we're like so grateful that you know it is not going to affect the rest of his life. You know what I mean, which I think at first that's what we believed to be true that's what we believed would happen.

Speaker 3: 41:56

And so if there's just, you know, when I say, like I believed that things would like always go perfectly, and it's like things, things go the way they're gonna go, and you, you kind of just walk that path with it, and when you advocate for your baby, and then you love your baby, no matter what, like you're gonna, you're gonna end up being okay, you know. But it took a while to get there. And after Leo, for me personally, I I was fine for a little bit and, like you know, with Olivia I had this adrenaline and I was good and I was super mom and I could shower and I made it look really great from the outside looking in with Leo, I I basically snapped. You know, there was a point where I was like I'm not okay, you know, and having a two-year-old and then a baby that needed extra attention and I'm being scared that like he wouldn't be breathing, you know, because his tongue would go back in his mouth. You know, just like all of that again, never with my babies, always with my husband, I took it out on him and I took it out so hard and I'll never forget.

Speaker 3: 43:20

I had a friend who I was talking to and I was just like I just like I feel really bad. You know what I mean. Like this is just like not not going well, and she was like have you ever thought about being medicated? And I was like no. And she was like you know, talk to a therapist or talk to someone and just see what your options are, because you're suffering, like you're really, really suffering.

Speaker 3: 43:47

And at that point, like I nobody still was like talking about being on medication, but she was like I'm on medication and it has changed my life. And I was like it was the one friend I needed to say something to me. You know what I mean. Like when you have someone you love and you trust tell you something like that, all of a sudden you're like yeah, yeah, I'm gonna do that too. And like it changed my entire life and it is like the best thing that ever happened to me. And I wish that I would have had that friendship and like that advice earlier, because I think I could have enjoyed a lot more of the number one, olivia, being little and like that experience. And then Leo, but but I got medicated. I really did so. After probably like three months, I was medicated and it was like it was night and day.

Speaker 3: 44:38

I have a postpartum experience and a having baby experience and it and not to say that it's not hard, it's still very, very hard but it it kind of just like takes that edge off of the, and for me it was just like really bad anxiety and waking up every day with a knot in your stomach should not, in my opinion, is not how to live your life. And and so, yeah, I told you I had a lot to say about levies and Leos and how it's kind of connected and the inner workings of all that, and I don't even know do we have time to talk about Kennedy? This is why I'm like I have a lot, a lot going on. Yeah, yeah, good, I'll tell you, because Kennedy's Kennedy's is short, so we made it to a good point. Okay, we got through Leo's diagnosis. We had we're going to normal doctors appointments. Everything was like good, you know, we were smoother, smoother sailing.

Speaker 3: 45:39

I had a, then now four-year-old, two-year-old no, no, three year old, almost two year old, yeah, and I was like I don't know if I want any more children. After that experience it felt like we were done and we're let. No one really talks about how tough having babies well, actually, some people do having babies are. On relationships, I just feel like, if that is not an open book yet, we're trying to break that stigma of like that everything is perfect at home you know, it's all good.

Speaker 3: 46:18

Yeah, um, our marriage was feeling rocky, you know, and I was like I don't think I can go through this again. And at that point we were in California and we were spending some time out there and I remember my friend came to visit me and I told her on the beach no more babies. This like illness is coming from China, like we don't know what that is, and I'm struggling, you know. Yeah, we're so happy, like these kids are great, like I'll just be done, and she was like I think that's a good idea. You know, like you should embrace that and I'm like I think I will. And it was like sad, but also like feeling good at the same time, like I always wanted three or four kids. So it was kind of just like all right, if I'm gonna put a pin in this, like that's okay.

Speaker 3: 47:11

Um, and COVID happened. This was March of, or February, march 2020, and they were stopping all flights and so we had to go home and we were one of maybe seven people on this flight back to St Louis. And I got home and I was like kind of excited. This is really weird. We like didn't know a lot about COVID at the time, and so they're like we're gonna go on a lockdown. I was like I'm gonna do these things where every month I'm gonna have a holiday and we'll just spend it just like at these ideas you know how.

Speaker 3: 47:45

I was gonna spend this time with my kids you know, I didn't know what we were doing.

Speaker 1: 47:49

I started a garden, so I had these dreams.

Speaker 3: 47:53

I was like I was like this month it will be Christmas. I was like it will pull the elf elf back out and all the things and. And I got home and I remember being like I I took get my period. That was weird and I was like I should probably take a test before I have this big glass of wine. You know it was COVID. I was like, oh my gosh, and I did. And I was pregnant and I cried, I was scared. I had already put this to bed. You know I was not having any more children and I was hysterical.

Speaker 3: 48:43

You know, I was like we didn't know either what COVID could do to babies and pregnant people and so that was not part of the plan and I remember my mom even saying to me like, just make sure you don't get pregnant, like cuz COVID could be like really hurt babies, you know, in the utero and you know we really didn't know and I was like, holy shit, I'm pregnant. And it took quite a while for me to be like okay, you know, and especially after everything with Leo, I was like in terms of health, like how is this all gonna go? Kennedy, honestly, her pregnancy was so boring because it was COVID. We wiped it down every piece of mail, we, my husband, couldn't go to any doctors but honestly, I didn't care. I was like if you watch the kids like, this is like a mini-vacation, the doctor any day of the week like this is great and so, basically, like everything went smoothly, got to her birth.

Speaker 3: 49:56

It was a beautiful, amazing birth. I was induced. The pittosis still didn't work. They still tried. I was like why in the world are you giving me this medication like it does not work and they're like we have to? I'm like you really don't. You guys? There wasn't a doula at this part and point, so I didn't know my options all right yeah like just do whatever you got to do.

Speaker 3: 50:21

And and this time I was so interested and I think my doula self was starting to come, because I was like I want, when you break my water, I want to see what it looks like, you know, and I want to feel her head like, and I want to, like I wanted to be more involved and I was just like I wanted to see my placenta. I wanted you know what I mean. Like everything was just like amazing. By that point I was more in tune to her, loved her like. I knew you know what I mean. Like I at the beginning it was very shocking, but by that point I was happy that I was having her and I will.

Speaker 3: 50:58

I should you not girls like Kennedy is the light of like all of our lives, and like there is a reason why that happened, why I got pregnant, and she has been that hearing that we needed as a family and I don't know why, but she, just everything about her, has just been like great, and so it's like she inspired me to then go on and be a postpartum doula to help and start Surviving Thrive Mama, which I did when she was eight weeks old and I started it when she was eight weeks, I felt pulled to do it. I was like this is the time and women are at home feeling so alone. And I know how I felt with my first two and I just knew that other women needed another voice, you know, and a real voice, because we hear so much stuff but we really don't hear. It's weird. We don't hear the truth and like just someone telling us what to expect and what our truth could be. And even if it's not everybody's truth every time because I'll tell you my truth was much different when I had Leo than when I had Liv but just knowing that that information's out there, I just really felt pulled to do it. And now she is three and that's why it blows my mind is because this time has just like flown.

Speaker 3: 52:32

And having my babies, of all of that stuff that I just told you positive, negative, scary, wonderful it's all worth it. It's, at the end of the day, it's all worth it. These beautiful, amazing human beings that drive you crazy sometimes, but they're just fabulous. It's just it's one of the best things you'll ever do, you know. But it's also the hardest thing. One of the hardest things you'll ever do and what I think all of us need are just people around us to hold hands with and be. Like me too, I felt that way too, because when somebody says that to you all of a sudden, your truth feels validated and all we need is that validation.

Speaker 2: 53:19

Yeah, I feel like lighter, you know yeah yeah, I mean absolutely.

Speaker 3: 53:28

And one of the things that I love about this experience number one, thank you for letting me just share all of that with you, because it's just a lot of information is that I started a support group for moms with babies ages four to six months, mainly because I felt like the time zero to four months is a whirlwind. It is crazy. Once you get a step out of that, people stop sending food, people stop checking in, and that four to six month mark is freaking hard. It is so hard and you feel really you could feel really alone. And so we do these support groups with these women and one of the first things we do is share our birth stories and a lot of people say I have never had anybody ask me number one to tell it or number two to write it down, and there's just really something so healing. So you all inspire me so much just by doing this and asking people and inviting people to share. It's just really cool.

Speaker 2: 54:35

Oh, thank you. That was really really sweet and yeah, that's such a good time period to have that support because, you're right, I feel like you're really just running on adrenaline those first few months and then you're kind of slowing down and being like, oh OK, things are coming up, yeah, yeah, come out of the fog. I'm like oh yeah.

Speaker 1: 54:58

I'm a person, yeah, yeah.

Speaker 3: 55:01

I'm a real, I'm a mother, but I'm a person. You know I need to express how this feels too, and you can feel so alone when you're in your little family unit with partner, partner, kid. You just feel like you're in this little bubble. I always could have say we're supposed to be in tribes, we're supposed to have friends, cousins, moms, sisters with you experiencing this all together. We shouldn't have to do this alone, and so that's kind of the inspiration behind my business and, yeah, I feel like you guys connect to that too.

Speaker 2: 55:49

Yeah, and people can find you for due to dual support.

Speaker 3: 55:57

Yeah, so I became certified as a postpartum doula. Everything that I do now is virtual, or it has been virtual because, of course, I started during COVID, but I have recently started going to people's homes, which has brought me such joy. It is, it's amazing. What I've found is that a lot of women need someone to bounce ideas off of and thoughts off of that they're going through in their everyday lives. And it's hard to call your doctor 20 times a day, calling your pediatrician I don't know if I did that, so people just need that sister support. Like, hey, my baby's doing this. Is that normal or do I have options when it comes to this, this and this? And I think that's where the postpartum doula in me kind of shines.

Speaker 3: 56:47

The support groups that I created are kind of like the highlight of my postpartum doula side, and then the sleep specialty side. I did that because nearly every mom that I talked to was talking about sleep, and it didn't really matter if it was sleep training or not. They just wanted their kids to sleep better, for a little bit longer. Or again, what are my options? Because even if you don't want to technically sleep train your baby, there are so many really great ways to split up your nights with your partner in order for you to get a good four hour chunk, as to which I always say, if you can get four hours of sleep at any time, that's golden. That's what you really, really need.

Speaker 3: 57:36

But anyways, I digress. I think that that's my doula side and my sleep side all kind of come together, and I just like to look at everything, not just the baby, and it's just not the baby's sleep, it's also the mother and what she's going through. And if mom's not getting any sleep and is suffering, let's make that better and let's call in partner. You know what I mean. There's just so many things that we can do that a lot of first time moms especially don't do, which calling on their partner is one of them making sure that other people are supporting them, all that fun stuff. But anyways, yes, that's kind of what I do and I love it. It's so wonderful. And, of course, the Instagram page is all fun and a lot of information thrown at people and it's just a lot of fun.

Speaker 2: 58:29

I love it.

Speaker 3: 58:30

So people can find you at on Instagram, at surviveandthrivemama on Instagram or surviveandthrivemamacom on my website. Yeah, perfect.

Speaker 2: 58:42

Well, awesome. Yeah, if anybody needs that postpartum or that sleep. Yeah, everybody needs that.

Speaker 3: 58:49

Yeah, everybody needs to sleep. Everyone really does need to sleep. No, thank you so much for having me, girls. I really appreciate it.

Speaker 2: 58:56

Thank you, thank you this was a delight it was yeah, we'll see you next episode.

Speaker 1: 59:03

Thank you for joining us on this episode of the Golden Hour Birth podcast. We hope you've enjoyed our discussion and found it insightful and beneficial. Remember, the Golden Hour Birth podcast is made possible by the support of listeners like you. If you appreciate the content we bring you each week, consider leaving us a review on your favorite podcast platform or sharing the show with your friends and family. Your support helps us reach more people and continue creating valuable episodes. If you have any questions, suggestions or topics you'd like us to cover in future episodes, we'd love to hear from you. You can reach us on our website, www. Goldenhourbirth podcast, or connect with us on social media. We value your feedback and want to make sure that we're delivering the content you want to hear.

Speaker 1: 59:52

Before we sign off, we'd like to express our gratitude to our incredible guests who joined us today. We are honored that they trust us enough to be so open and vulnerable. We're grateful for their time and willingness to share their stories with us. If you're interested in taking the conversation further with us, join us on our Facebook group, the Golden Hour Birth Circle. We'll be back next week with another exciting episode, so be sure to tune in. Until then, stay golden and remember to take care of yourself. We'll catch you on the next episode of the Golden Hour Birth podcast. Bye.