Sarah’s journey to motherhood

Join Sarah as she shares with us the story of her difficult journey to motherhood. 

The Weekly Unravel is a podcast about motherhood, midlife, perimenopause, and everything in between. Join friends Heather and Sarah as they navigate life’s twists and turns with tea, humor, honesty, and absolutely no expertise.

Follow the show so you never miss an episode, and connect with us on Instagram @theweeklyunravelpodcast.

Transcript

SPEAKER_01 0:13

Hi everyone, welcome back to part two of our journey to motherhood. This is Sarah, and I will be sharing my story of how I came to be a mom to two amazing boys and the road to get there. So I got married just a month before my 29th birthday and was married for a year when the lightning bolt hit my brain that actually, yes, I I did want to be pregnant. So we started trying at 29 and nothing, nothing happened. And because I was a little bit on the younger side, but also I wanted it to be natural. Like I wasn't prepared to commit to a medical process of motherhood. Um so we just we we kept it natural. Um and it's hellish, you know, like Heather mentioned in her story, you're just living by your ovulation calendar. I remember uh talking to my husband one time and we were trying to work out our schedules around work and and you know, when we had time to to make it happen. And, you know, we we had figured out, okay, well, I'll wake you up at like 4 a.m. and then we can and I looked at him and I said, Do you have to wake me up? Right. So that's trying to make a baby. Yeah, it's not it is not romantic, it is not, it is not sexy at all. Um so we were going through this and it's depressing, and you just feel absolutely miserable. And I got into this really weird and bad habit where I would convince myself every month that I was pregnant, and I would sell myself this story by eating and being like, I'm so hungry, I must be pregnant. It was my odd way of gripping, of holding on to something and trying to make something true that just was not for me true. Um so this delusional process continued for about three years. Um, and then there had been a big wedding rush through my husband's giant Irish family. And I knew babies were coming. And it I remember at that time when people would get pregnant, I had feel happy for them, genuinely, truly happy for them, but also horribly sad for myself, right? Because I'm human and it's hard not to feel shitty when you see everyone around you getting the thing that you really want, and you don't understand why it can't be you. Um so we started trying extra hard. I started letting him wake me up, and obviously, um and um and then I I just kind of gave up and I was like, this is just not gonna happen for us. And I, you know, maybe I just forget this whole bad idea because it's just making me feel miserable and and and awful. And then um the next month I was pregnant after three years of trying. Um so that was in November. I I found out I was pregnant. So at Christmas time, we told our parents. Not not everybody, not a big announcement, but we we told our parents. So excited. Um, then early February, we went in for, or maybe it was March, but we went in for an ultrasound and everything, you know, the you see the baby there, and we're so excited. And then my husband says, Oh, what's that big black circle? And I think I like said, shut up because like I just like I don't want to hear. Like, say guy just like where do you stop? What do you even know? What are you talking about? And um, and I just assumed he whatever, because you looked at sonograms. It's like, yeah, it's like a Jackson Paul, you've no idea what you're seeing. Um so then the sonographer just said, Oh, the doctor will speak with you, and my blood turned to ice. I said, What do you mean? Like, why are you not just laughing at my husband and telling him like he doesn't know what he's looking at? Um, so we after the sonogram went and sat in the doctor's office, and he said, Yeah, there's uh a big black spot, you know, in in the baby's abdomen. No big deal. This happens a lot with baby girls. Sometimes what can happen is they can have a cyst on their ovaries in utero, and it's okay. Um, but I'm gonna refer you to a maternal uh fetal medicine specialist. You need to go see a specialist. So, okay, I'm not happy, but I'm hopeful because I'm A, I just found out I'm having a girl. In my mind, I'm so I'm gonna have a girl. She's gonna be so cute. And you know, this is a little bump in the road, but it's gonna be okay. And I've waited three years. I've waited three years. Um, so we go and we see our specialist, and I'm ready to like find out all about my little girl. And uh he sets us down in the office after and informs me that I am not, in fact, having a little girl. I'm having a little boy, and this little boy appears to have um a lower urinary obstruction, that basically the black spot that we're seeing in the sonogram is his bladder, and that he's not able to excrete urine. So babies in utero, quick, quick lesson, biology. Um, babies in utero, they drink your omniotic fluid and then they they pee it back out. Um normal. And you know, so they drink it and then they pee it back out, and so you're you're um you stay infused with the fluid, they have enough fluid around them. Um, but they also breathe that fluid in, and that's how they develop their lungs. They're not oxygenated by it, they're oxygenated by mother's blood, but it's a how they build their lung strength. Um, so super important not that fluid is in your placenta in the uterus, um, and also super important that um they're peeing it back out because what'll happen is you know the bladder expands and then that'll eventually flow back up into the kidneys. The kidneys will become hyper hypoplastic, they'll loose and floppy, they'll basically destroy their kidneys. Um so this was not good news whatsoever. Um, but then he tells us it's okay. There's you know, some procedures we can do and a fetal surgery. Um you're gonna go see this doctor, you know, in a couple of days, and and whatever. I wasn't super comfortable with this doctor. He was like using Google, right? Um, so we left there and I and I looked up some other some other places and we ended up um going to a different group um and seeing them. I was more comfortable there. But they confirmed the same thing. There was a bladder outlet obstruction. So the first thing they did before they would do anything, um, they did an amniocentesis and they did um a test for kidney function on the baby because they said if there's already been a kid kidney damage, there's nothing we can do and it's it's too late. Um so he passed, you passed those tests, and um still not a great prognosis, but yeah, we can do this fetal surgery, there's things we can do. So we end up meeting the doctor who would be our our lead, Dr. Chavez, and his entire team. Um I g I love them so much. I'm sorry when they get so emotional. Um so we went through um the process with them. They do something, uh fetal surgery where they place a shunt. So basically, I'm awake but paralyzed. Um, and they take you into an OR and they use a sonography guidance to place, is it put the needle like through you, through the uterus, into the baby, and and put the shunt into the baby's bladder and abdomen, and that basically drains the bladder out so we get around the obstruction. Um and I remember like one of those surgeries, they told me, like, here, you're gonna put these headphones in so like you don't hear anything. Um, but I still heard things, but also I'm nervous. And I remember hearing at one point my doctor go, This baby wants to play games, we're gonna play games. Because he just would keep like pulling the shunt out or moving or whatever. Um, so I ended up having, I think, honestly, I've lost track. I think I had three or four shunts placed. Um, for one of them, they decided to go in. They had to order a special instrument um from Germany uh procedure that hadn't been performed in New York before, where they went in and instead of placing it through the abdominal wall, um, because as we later discovered, there was no muscular tear to his abdominal wall. So that's why the shunts would wouldn't stay in place. Um, they went in through his urethra instead. Still ended up getting yanked out. So we go through this process and then they decide, okay, the shunts aren't working. We're gonna, we're gonna give up on this shunt. But I know that I have to protect his kidney functions and I have to protect his lung development. So in order to do that, I have to continually drain his bladder and I have to continually reinfuse the amniotic sacchar fluid. Like those two things have to happen. Like you need that, that's what we're gonna do. We're we're committed to this pregnancy because it had taken me so long to get pregnant at this point. Um, he was due on August 18th, so right before my 33rd birthday. So I know it's not gonna get easier as time goes on. Um so we start going in twice a week, and they take a needle, it's about the size of like a pencil lead, again, through me, through my uterus, into baby. Um, so when you put a needle into a uterus, uh, uterus doesn't really like that, so it contracts. So now you've got a twisted needle in your uterus. Um, so these were not um, these are painful procedures, and and I can't even imagine what they felt like for my baby, but I just was like, we just have to get this. And then once he's born and once he's out, they can perform a surgery to correct the obstruction and life will be normal. This is what we're told. Like if we can get him born, if we can protect the lungs and kidneys, we're gonna be golden. Great. So we go in twice a week, drain the bladder, reinfuse with a saline solution, we keep this up. Um and I'm amazed that everything is holding up in there, right? Because you know there's a risk every time they they puncture you with the needle that it's gonna be the last time. And um eventually we went in at 32 32 weeks or 28 weeks. My mind is no, 31. We were 31 weeks. Um, and and and I ruptured. So he was born fairly prematurely. We had a big NICU stay. Um, and after he was born, when I thought, okay, we're we're done, like the bad part's over, right? He was taken to the NICU, I'm recovering from it, he had to be born via C-section. Um so I'm up in my room, he's in the NICU, and a urologist who I don't know, I've never met, comes in and um explains to me that my child does not have a bladder outlet obstruction. He has a pretty serious condition um called Eagle Barrett syndrome, um, more commonly known as prune belly syndrome. It means there's no muscle in his entire abdominal wall. Um kids with this condition have, you know, ongoing kidney and bladder infections, um, constipation difficulty with their bowels, um, can have other syndromes along with it. And he looks in my face and says, he'll never be normal. And that was not what I was expecting, and so so devastating to hear. Um, this is all you want for your kid is just, you know, a healthy, happy, normal life. And we work so hard. And and I the whole time had just gripped on to this idea that if I just kept his kidneys and his lungs healthy, then everything was gonna be good. So I couldn't, like, why why are you saying this to me? This can't be true, this can't be true. Um, but it was, so I, you know, start reading about it, and I find a man named Frank Walker, who was local, who had this condition and was a big advocate in the in the community for it. And it just so happened that many years before, 30, 32 years before, or almost 33 years before, he had had the first of its kind surgery where they took muscles from his thigh to move it into his abdomen to create like an abdominal wall. And where he had had that surgery done was in the very hospital that I was in. And um, he had it on August 18th, which was my son's due date, and he stayed in the hospital recovering for two weeks, which means he was in that hospital recovering on August 24th of 1982, which is the day I was born in that hospital. Oh my god. So, like the goosebumps that I got um from connecting with this man, and and he was so wonderful and it gave me a lot of hope and optimism. Like he was like turning 50, and he's like, I'm you know, I'm a survivor. Uh, but the reality is most kids with that condition don't make it past their second birthday. And for my son, his name was Jet, um, he did not make it. He um, in addition to to the prombilly syndrome, he had um a coarctation in his heart, which is common in in premies. He ended up having to go to Columbia Presbyterian for a heart surgery. We got through that feeling super hopeful. Get him back to back home to his to his original NICU back on on the island, and um things are looking good. I get to give him his first bottle because before that it'd only been feeding tubes. He had been on ventilators, he was weaning off the ventilators, he just had little nasal cannula, and and it was it was looking great. It was looking really good. And I gave him his first bottle, I was so happy. Um, and I went home that night and I had the worst nightmare. The worst nightmare. So I got back to the NICU as early as I could the next morning, and his nurse greeted me at the door and she said, Uh, Sarah, I'm so sorry, something's wrong. I don't know what happened. Um apparently overnight his belly had ballooned up, really swollen. Um, I tried to call my husband, he you know, was at work and far. Um so I called my my prenatal team and they were there in a minute. Um my um Dr. Kunzir, who was like the same age as me, and a mom, and and she like sat and held my hand, and they took him immediately for emergency bowel surgery because he had gotten um neck necrotizing and acolitis, like basically a bacteria killing his bowel. Um so they performed the surgery, and when it was done, they said, Okay, we didn't find any dead tissue, but it's ischemic, like not getting blood flow. So they, you know, put him on whatever he needed to be on. He needed back on the ventilator, back on feeding tubes, different medications, and kind of holding steady and waiting and hoping that things get better. Um and then he started to get bad liver numbers because of the um nutrition that he was being given. So um someone suggested to us, hey, there is another kind of nutrition they can use in TPN. Um, they don't have it here. It's experimental in the United States, it's approved in Europe. Only certain hospitals here have access, and one of them is the Children's Hospital of Philadelphia, where they have the number one NICU in the country. You guys should go there. So we get in touch with them, CHOP, Children's Hospital of Philadelphia, and they come in on a helicopter and like these doctors in like the flight safe, like it felt like you're being saved. And it the day that they transferred him to Philadelphia, like driving there so fast, it's driving so fast, and he's in a helicopter of Bobby's. Um, but that day was his actual due date. So like this poor guy wasn't even supposed to be born yet, and he's already been through all this trauma and and nightmare. So we go to Philadelphia, and everywhere, it's hope lives here, you know, hope is here. Um so we stay in Philadelphia, we ended up staying in Ronald McDonald's house. My husband has to come back to work. I my job was very kind. They gave me uh, you know, a leave of absence to take care of everything, but I wasn't getting paid. And because that was the insurance care, we were paying out of pocket like $2,000 a month for our cobra, which we couldn't give up because we're racking up millions in medical bills. Um so he had to work. Um, so I was really there by myself. And my child ended up having such a complex illness. And when your child is r like you mentioned before, when doctors were calling your Dr. Braverman quackery. Doctors, and it's no fault to them, they only operate on the research that they have. And when you have a child who has a rare condition, there isn't research to tell them what to do. So they don't know what to tell you to do, and and it was very hard. Um, but he didn't get better. He wasn't getting better. Um, and eventually they did a scan on him, and I saw, because I was there and I saw his kidneys, and his kidneys were gone. His kidneys had expanded, and that was the thing that always lived in my mind. Like we protected his his lungs and his kidneys. And then when I saw that, that was kind of like it's it's over, it's over. And um we had to make the choice to let him go to remove him from life support, which was like he was, you know, making the choice to terminate, making like this is my baby who I wanted, who we fought for for months before he was born, after he was born, doing everything we could do. And I know this sounds so horrible because I don't wish illness or harm on any child, but one of the most painful things in the NICU at that time was kind of like we're still as a country in the peak of the opioid crisis, right? And you could hear those kids who were born addicted, you would hear them scream, the most painful screams you've ever heard in your life, just tortured. And all those babies went home, and most of them went home with the mother just did that to them. And it was really hard not to feel bitter, yeah, because I knew that my baby wasn't gonna come home with me. Yeah, and I just wanted that so bad. Um so we made the decision to let him go. We had our family come up the weekend before to say goodbye and to get to hold him for the first time. Um he wasn't gonna make it to his first Christmas, so we had him. We did like a little Christmas with my husband dressed up in a sanity um that the hospital gave him. We had like a little Christmas tree in his room, and you know, uh for all I know, this is the only child I was ever gonna have. And um you know, like my husband will say, like you were a mom and a Nicky. I used to like make his bed. I he couldn't really wear a lot of clothes because of the medical equipment on him, but I whatever I could find to get on him, like any wraparound kind of kimono style thing, like or hats and socks, like he would have matching hats and socks, and it was not the environment you dream of being a mom, but it's the environment that I had to be a mom in, and and I did the best I could in it. Um so we we let him go, we came back home, and it was so surreal being back in the world because I'd been out of the world for my pregnancy, you know. I couldn't drive because of the surgeries that were going on, and then when I was in Philadelphia, obviously I'm not driving anywhere. I'm just kind of like hospital, Ronald McDonald's house, no lie, you know. Um, so I remember the first day, like I drove my car. It was like the day I had needed aluminum foil, like it was nothing. Um, so I went to Target for aluminum foil, but it's like right before Christmas. It's December. Um, and there's Christmas everywhere, and there's people like doing their Christmas shopping, and I just remember like wanting to go up to him like, what are you doing? Like, Christmas isn't happening. Like, don't you know? Like, don't you know Jet dies? Like, what like in the world's going?

SPEAKER_02 20:40

So the world has stopped.

SPEAKER_01 20:42

Yeah, and you just want to like scream it from the mountaintop, like, stop, this is crazy. Um, and similar to your experience, I needed a baby right away. Like, I could feel the weight of him on my chest, and I could feel the hole that was there, and I just needed to fill it with baby. Um, we tried and you know, again, took a little bit of time. Um, but then March of 2017, I was pregnant. So it took about a year and I got pregnant again. Um and again, didn't believe it, couldn't believe it, couldn't imagine that am I really gonna take a baby home this time? Um, though all signs pointed to healthy, and now I'm 35, so I'm at that threshold, that geriatric threshold. Um, so I was able to still see my maternal fetal medicine team, and I just I needed them, like I needed them to be with me through this. And um I was kind of uh hoping to do a V back to vaginal birth after C section. Really, I was hoping for that. Um But I was with my team and um around the time I'm five months pregnant, well I'm sorry, let me back up a little bit so I'm Pregnant and I find out I'm having a boy and I'm so happy, but I'm also so devastated because he's supposed to have a brother, and there's something to me about brothers. And um, I also knew that the condition Jet had is more likely in boys. So when I found out it was another boy, I was obviously terrified, and I was constantly throughout the whole pregnancy waiting for the other shoe to drop. And I was I was sad because I knew like I'm done, I'm never going through this again. Like this is horrible, torture, like it's so painful, I can't do it anymore. I could just like I'm I'm done after this. Um after about five months pregnant, and I find out through a person that I know knows someone who is pregnant and planning to give their child up. And I look at my husband dead in the eyes and I say, Well, let's adopt the baby. And he kind of laughed, and I'm like, No, I'm I'm serious, let's make it happen. And and so we did. And my adopted son was born three weeks before my biological son um went into that hospital to go meet him. Um, and and people are offering me wheelchairs thinking I'm in labor. Um, but I was not. And um yeah, so that's how I ended up with an adopted son and a biological son who live as twins, so they are not, and nor do they look like twins at all. Um but uh this first year, similarly, like every time I would go and check on them in bed, I didn't expect them to be alive. Which, you know, like most people, like you can't conceive of a child dying or like anything bad happening to a child. I could not conceive of a child not dying. Like I just like am I gonna get a happy ending? You know, and it it's happy and it's it's good, but it doesn't take away the sad and the sorrow on the other side. Um I'm glad that my boys have each other and I'm glad that I have them, but it's you know, it never takes away what you lost and what you what changed for you or changed your person through that process. Um my positives from it um obviously just makes me, I think, appreciate my kids so much more and love them so much more deeply. Um, during the whole process with Jets prenatally and after I met this incredible group of women through a Facebook group, and most of them on the West Coast, I have my little blanket here from them today. They were the mom jeans crew, they were so amazing, and I think they like taught me how to love other women, like how we really do need each other, like as a tribe to lift each other up through anything, and just the power of having your story heard and and sharing it, um, and how that can change the shape of things and and make things a little a little less heavy. So that's my story of my journey to motherhood. Yeah. Um, and that will be roll bearing. Thank you.

SPEAKER_00 24:54

Thank you for listening. Thank everyone for listening to our stories. Yeah. They're not easy, they're heavy.

SPEAKER_01 25:02

Yeah.

SPEAKER_00 25:03

But um a little more insight into us, and it's also so that people the whole point of it feel less alone. Absolutely. I'm sure there are a lot of people that have gone through all of these things, and we just want to shine a light on the reality of them and the support that is there and that is needed, and so we can all just support each other and be there for each other.

SPEAKER_01 25:25

And that there is good on the other side when you get through, you know, persevere.

SPEAKER_00 25:30

Yeah. Absolutely. We can go through hell and then literally through the hell to the other side where things are a little bit brighter. Okay. Yeah. And it changes you as a person, but it is better on the other side. Yeah. Thank you all. Thank you.