Latest / Tom's Hirschsprung's Podcast / Episode 56 - With Lexi Liljenquist

Transcript

Episode 56 - With Lexi Liljenquist · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung's Podcast, where I provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports. Hello and welcome to
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Speaker 1: episode fifty six of Tom's Hirshprung's Podcast. I have another
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Speaker 1: wonderful guest with me today. I am joined by Lexi. Lexi,
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Speaker 1: Welcome to the podcast.
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Speaker 2: Hi, thanks so much for having me.
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Speaker 1: Thank you so much for coming on. And I think
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Speaker 1: as we spoke a little bit earlier before this coming
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Speaker 1: on so soon as we'll go on to mention probably
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Speaker 1: a little bit later on, your son is only nine
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Speaker 1: months old and you've come on already, so thank you
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Speaker 1: so so much for being here. If you'd like to
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Speaker 1: sort of start from the very beginning, so you have
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Speaker 1: a son called Crew, nine months old. As we mentioned
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Speaker 1: with Hirshprungs. You mentioned a little bit before with hirshbrungs
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Speaker 1: not knowing what it was like a lot of people
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Speaker 1: who were diagnosed with hirshbrungs, and you mentioned this very
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Speaker 1: long word, it's very difficult to spell and people don't
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Speaker 1: necessarily know what it is. Would you like to take
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Speaker 1: us from the very beginning, I would love.
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Speaker 2: To so I, okay, let's sweet. So I have my
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Speaker 2: son Crew. I was pregnant, but previously I have a daughter.
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Speaker 2: She is poor. I was considered a high risk because
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Speaker 2: with her. I had her at thirty five weeks, but
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Speaker 2: she was prettymature. I had horrible, horrible, free kilanthropia. I
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Speaker 2: had really high blood pressure, and I also had COVID.
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Speaker 2: And I had COVID so severe that I coughed through
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Speaker 2: my amniotics back and it ruptured. So I went in
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Speaker 2: for my normal doctor's appointment and I had no amniotic
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Speaker 2: fluid and they're like, nope, you're having this baby today
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Speaker 2: or she won't make it. So with my pregnancy with Crew,
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Speaker 2: I was already high risk because of all of that
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Speaker 2: that I had gone through with my daughter. So right
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Speaker 2: from the beginning, I had two appointments a week with Crew,
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Speaker 2: so I would have an ultrasound every week, blood work
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Speaker 2: every week, and my weekly doctor visit, and then a
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Speaker 2: non stress test. And it was never caught. They all
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Speaker 2: just thought, yes, he's like a healthy, happy baby. I
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Speaker 2: had all the genetic testing, everything came back low risk.
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Speaker 2: So I was always scheduled to go in at thirty
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Speaker 2: seven weeks to have my sea section because I had
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Speaker 2: had a previous fee section and because just all my
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Speaker 2: frequancy and all my head blood pressure. So I went
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Speaker 2: in for my thirty seven week fee section. It was
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Speaker 2: a Monday morning. Everything went smoothly, and I'm like laying
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Speaker 2: there having my sea section, and my doctor is like
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Speaker 2: talking to me, like trying to keep me calm, and
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Speaker 2: he's like, Okay, are you ready to hear your baby cry?
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Speaker 2: And I was like yes, And my husband's like right
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Speaker 2: by me and he's holding my hand, and I could
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Speaker 2: feel that there was no pressure, so I knew he
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Speaker 2: was out. And I'm sitting there and I'm waiting, and
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Speaker 2: I'm waiting and I'm waiting, and I like looked at
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Speaker 2: my husband and I'm like, oh my gosh, I please cry,
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Speaker 2: you know. And finally he let out like a little
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Speaker 2: whale and he was immediately taken to the nurses. They
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Speaker 2: cleaned him up, they'd let my husband cut his own
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Speaker 2: bilkboard and they're like okay, Dad, come with me. And
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Speaker 2: then finally I hear like a little bit more more
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Speaker 2: of a cry, and the nurse comes over and she's like, okay,
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Speaker 2: he's having a really hard time breathing. We're gonna take
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Speaker 2: him to the NICO. Would you like your husband to
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Speaker 2: stay with you or do you want him to go
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Speaker 2: with your son? And I'm like, no, like he can
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Speaker 2: go with my son, go, you know, go. So they
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Speaker 2: take him and they finish up with me and everything,
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Speaker 2: and my husband face times me when I get to
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Speaker 2: the recovery room and he's showing me him, and they
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Speaker 2: immediately put his seapat machine on and it just wasn't enough.
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Speaker 2: He was really struggling. So then they put him on
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Speaker 2: the ventilator with like the tube down the throat and everything,
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Speaker 2: and then they finally let me see him. This is
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Speaker 2: like a few hours later, and they let me hold
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Speaker 2: him and he's on that like machine and it was horrible,
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Speaker 2: like that in itself was already like a lot of trauma.
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Speaker 2: And then they slowly waned him off of that and
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Speaker 2: then he went back on the steep pat machine and
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Speaker 2: he was doing good, and over the course of a
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Speaker 2: day or two he was completely weaned off and we
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Speaker 2: were like, oh, this is great, but he was he
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Speaker 2: kept making these like little grunts here and there, like
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Speaker 2: he was uncomfortable, and so like he would again, next pray,
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Speaker 2: and they'd be like, yeah, it's just not looking right
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Speaker 2: in there. And they still hadn't let me feed him.
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Speaker 2: He was still being fed off of the IBN and
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Speaker 2: all of those things, and he was having wet diapers,
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Speaker 2: which was good. And the one of the nurses came in.
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Speaker 2: She was a little bit older, and she was like, no,
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Speaker 2: like looking at him, like, this isn't right. He something's wrong,
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Speaker 2: you know, like, we're so glad that he's breathing, but
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Speaker 2: his belly he looked like he had like a pregnant belly.
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Speaker 2: And I hadn't noticed that because I was just like, oh,
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Speaker 2: my gosh, my son's breathing.
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Speaker 1: You know.
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Speaker 2: I was just so glad, you know, and they're letting
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Speaker 2: me hold him, and I was like his belly, like
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Speaker 2: you know, oh. And so she's like, I'm going to
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Speaker 2: order another expray, and so they ordered the X ray
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Speaker 2: and she's like, no, he's very severely distended. We need
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Speaker 2: to spend this to these people, these people and these people.
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Speaker 2: I'm like okay. And then he got like his first bath.
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Speaker 2: Everything was fine, and then the lady was like, I'm
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Speaker 2: like can you I was like, can you just kind
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Speaker 2: of tell me a little bit more like what are
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Speaker 2: they concerned about? Like, how can we get out of
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Speaker 2: the Nike you and go back to my normal room?
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Speaker 2: Like if he's breathing fine, like do we still be
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Speaker 2: in the nick you? And she's like, well he hasn't
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Speaker 2: who And I was like, oh, okay, that makes sense.
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Speaker 2: And she's like, we're going to give him a suppository
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Speaker 2: and we hope that he passes as maconium blood. And
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Speaker 2: I was like, okay, like great, let's you know, let's
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Speaker 2: do it. Let's get him out of here. You know,
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Speaker 2: I need to. I want to be with my baby
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Speaker 2: and I want to feed him and do all the
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Speaker 2: normal mom things that you look so forward to do,
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Speaker 2: you know. And so they gave him this suppository. Hours
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Speaker 2: went by, hours by hours, bye we went. They made
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Speaker 2: me go back to my room to eat, and we
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Speaker 2: came back in and she had like his legs in
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Speaker 2: the air and he was passing stool and she was like, see,
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Speaker 2: like this is his maconium plug. So like I think
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Speaker 2: we should be good, you know, like maybe he just
7:17
Speaker 2: needed like a little bit extra help. So I'm like okay.
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Speaker 2: So they were like after he had passed the poop,
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Speaker 2: they gave him another X ray and he was still
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Speaker 2: super dispended and they were like, no, like, this still
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Speaker 2: does not look good. Still's not right. And I saw
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Speaker 2: the x ray in it looked like I don't have
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Speaker 2: any medical background, you know, but it looked crazy in there,
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Speaker 2: in his poor little belly. And they they were like, okay,
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Speaker 2: like we're going to make a few phone calls and
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Speaker 2: we'll like we'll come and talk to you in a
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Speaker 2: little bit. So my husband heads back to our room
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Speaker 2: and I'm in there holding crew and the doctor comes
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Speaker 2: in and he like pulls up a chair and he's like,
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Speaker 2: do you want me to proceed without your husband? And
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Speaker 2: I'm like what, And so I'm like I text my husband.
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Speaker 2: I'm like get back here now. The doctor's isn't here
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Speaker 2: ready talked to us. So he comes back and he's like, okay,
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Speaker 2: so we're we think that your son has hirsh Friend's disease,
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Speaker 2: and that's out of our realm here, so he needs
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Speaker 2: to be life lighted to our children's hospital and it's
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Speaker 2: a little ways from us. So I was kind of like,
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Speaker 2: oh my gosh. And they're like, yeah, helicopter is going
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Speaker 2: to come and pick them up in fifteen minutes. He's
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Speaker 2: he's sick, and I was like, you know, processing all this.
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Speaker 2: I got fifteen minutes to get ready. I had just
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Speaker 2: had a seefection. What is going on? Like I thought
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Speaker 2: we were here because my son couldn't breathe Now he
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Speaker 2: PopEd like what are you? What is going on?
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Speaker 1: You know?
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Speaker 2: So he they so we have to prime. We have
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Speaker 2: two children's hospitals here. They just opened up a new
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Speaker 2: one that's like three minutes away. So he was actually able.
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Speaker 2: They had room for him, so he didn't have to
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Speaker 2: be helicoptered. He was able to be ambulance there. So
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Speaker 2: they come. They put him in this tube. It's like
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Speaker 2: the craziest thing. I don't know if you've ever seen it,
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Speaker 2: but they put him in this tube and connect all
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Speaker 2: these courts and everything. And they wouldn't let me go
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Speaker 2: because my c section in the ambulance with him. They
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Speaker 2: made my husband, so I my husband left went with him,
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Speaker 2: and we luckily got a room. There's eight rooms open
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Speaker 2: on this floor because the hospital was new. It was
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Speaker 2: so we got so lucky. It's just like ten minutes
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Speaker 2: from my parents' house. And I got discharged and I
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Speaker 2: was able to go and be with my husband with
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Speaker 2: our son crew in the hospital. And we get there
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Speaker 2: and immediately all of this professional like all the specialists coming,
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Speaker 2: you know, and they're like looking at him one after
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Speaker 2: another and they're like talking out in the hall and everything,
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Speaker 2: and they x raym and then some surgeons came in.
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Speaker 2: They had these like gown von and they're like, okay,
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Speaker 2: we're gonna take this tube and it was the catheter
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Speaker 2: and they're like, we're gonna we're gonna irrigate him, We're
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Speaker 2: gonna shot like put this water in and flesh him
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Speaker 2: out and see works. We hope that we get a
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Speaker 2: ton of gas in stool. And I was like okay,
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Speaker 2: you know. And so they do that and a ton
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Speaker 2: came out, like a ton tons of like gas everything,
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Speaker 2: and they're like, okay, we're not we were hoping for more,
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Speaker 2: but we're happy with how much we got out. So
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Speaker 2: they did another x ray like all the things. And
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Speaker 2: the next day they told us that they were going
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Speaker 2: to do the biopsy.
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Speaker 1: Ah.
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Speaker 2: So the next day they come in they do they
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Speaker 2: took like three really good chunks and they're like, we
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Speaker 2: should have the results in the next few days. But
11:12
Speaker 2: we still want to do the contrast enema, so they
11:17
Speaker 2: do the same thing they flushed. They put the scope
11:19
Speaker 2: through when they see everything, and I can tell they
11:23
Speaker 2: let us be in there for that. And I can
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Speaker 2: tell by the look on the guy's face who was
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Speaker 2: doing the contrast cinema, the one that was looking at
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Speaker 2: the camera, that it wasn't good because he kept taking
11:32
Speaker 2: pictures of one specific spot because I could hear it click,
11:37
Speaker 2: and he had someone come and look at it too,
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Speaker 2: and me and my husband are looking at each other like,
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Speaker 2: oh my gosh, like it was just it was very,
11:47
Speaker 2: very hard. So we get back to our room and
11:52
Speaker 2: they had to put a tube down his throat because
11:54
Speaker 2: he was having it come up from his belly the stool,
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Speaker 2: so it was like coming out into this lift clear
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Speaker 2: container and so that it didn't make him sick. And
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Speaker 2: that was just horrible because all this black stuff is
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Speaker 2: coming out my baby's mouth, you know, and it was
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Speaker 2: just so hard to see He's got all these tubes
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Speaker 2: and all these pords, and meanwhile I'm trying to you know,
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Speaker 2: recover and keep very self float. I'm like going on
12:23
Speaker 2: no sleep. It was just crazy. And so a few
12:31
Speaker 2: hours go by and a bunch of the surgeons came in,
12:34
Speaker 2: and it was always scary because the surgeons were green scrubs,
12:38
Speaker 2: so if you ever saw one of them, they were
12:40
Speaker 2: probably coming to bring you bad news. And all the
12:43
Speaker 2: nurses wear the blue scrubs. So a bunch of big,
12:47
Speaker 2: green scrubs surgeons come in and me and my husband
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Speaker 2: were sitting there and I was holding through, and they're like, okay,
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Speaker 2: we have his result back from his biopsy. He has
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Speaker 2: hersh brun and according to his contrast enema and the
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Speaker 2: pictures that we took, we are very concerned that he
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Speaker 2: has it. A part of the like ten percent to
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Speaker 2: have the long stan and or long segment. Sorry. And
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Speaker 2: I was like okay, you know, I'm like crying and
13:21
Speaker 2: I'm like, so what does this mean? And they're like,
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Speaker 2: so we we want to have him have surgery tomorrow
13:29
Speaker 2: for to do this. They didn't know they if he
13:34
Speaker 2: was going to be getting a stoma or he was
13:37
Speaker 2: going to be getting to pull through until they got
13:38
Speaker 2: in there, because it was just crazy and anyway, but
13:44
Speaker 2: so then we're like okay. So that day goes on
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Speaker 2: and a few different people came in and looked at
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Speaker 2: him and left and then one guy comes in and
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Speaker 2: he's like, you know, a lot of us from our
13:56
Speaker 2: COO rectal team are going back and forth on what
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Speaker 2: we think is best for Crewe. His case, according to
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Speaker 2: the contrast MS, seems to be really severe. But a
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Speaker 2: few of us want to give him the opportunity to
14:12
Speaker 2: do these rectal irrigations and feed and see how he
14:16
Speaker 2: does before we do anything drastic. So we're like, no surgery,
14:20
Speaker 2: you know, like this is great, Like, let's do these
14:22
Speaker 2: you know, let's feed him, like I want to finally
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Speaker 2: feed my baby, you know. And so he goes. He
14:31
Speaker 2: starts being fed, which was amazing, and they started irrigating
14:35
Speaker 2: him four times a day, and he's he's reacting well
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Speaker 2: to it. He's doing good. His belly is staying distended,
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Speaker 2: he's wanting more food, he's not vomiting. We're getting enough
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Speaker 2: out during the irrigations. So they ended up teaching us
14:48
Speaker 2: how to do it, and they're like, you know what, like,
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Speaker 2: let's let him go home, Let's let him get a
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Speaker 2: little bit bigger. He was born at six pounds nine ounces,
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Speaker 2: so still tiny. Ye, he was doing good and he
15:02
Speaker 2: was responding good, so we both had to pass it
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Speaker 2: off and they sent us on our way. So we
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Speaker 2: go home and we had no problems other than a
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Speaker 2: little bit of blood and his stool here and there,
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Speaker 2: but I guess that's normal. And he we waited till
15:19
Speaker 2: he was four months old, and they wanted him to
15:22
Speaker 2: be about ten pounds. So we go in and we
15:28
Speaker 2: planned for him to have the pull through surgery. And
15:34
Speaker 2: he goes in in and they call. They give us
15:36
Speaker 2: phone calls like every hour, just telling us how everything's
15:40
Speaker 2: gonna go. And they kept telling us no, like, I
15:45
Speaker 2: don't think you have anything to be worried about. Because
15:47
Speaker 2: if he's been doing so good with the rectal irrigation
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Speaker 2: for this long, like we should be able to, you know,
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Speaker 2: do the pull through, you know. So they call us
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Speaker 2: and they're like he's doing good. And they call us
16:02
Speaker 2: again and they're like okay, and this time it's the
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Speaker 2: surgeon and and he's like high lexy, you know. So
16:10
Speaker 2: we're in here. It's the side. The part that I
16:15
Speaker 2: have to pull through down to his bomb is the
16:18
Speaker 2: size of a Pringles camp, which is you know, that's big.
16:22
Speaker 2: He's like, you guys were just yeah, He's like, you
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Speaker 2: guys were doing an amazing job with the irrigation, but
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Speaker 2: it was not decompressing him enough, and so he's been
16:32
Speaker 2: in a lot of pain and we are going to
16:35
Speaker 2: be giving him an alliostomy, a loup iliostomy, and I
16:38
Speaker 2: was like like, okay, you know, like that's great. I
16:43
Speaker 2: just want him to be okay, you know, and to
16:46
Speaker 2: hear that your baby's been struggled, like suffering and you
16:48
Speaker 2: didn't know as a mom. I'm like, he's four month old,
16:52
Speaker 2: like this has been going on for a while, and
16:54
Speaker 2: I just have this healthy, happy baby at home. I
16:56
Speaker 2: thought I was, you know, And so they give him
17:01
Speaker 2: the LA asked me, and yeah, he has a bag
17:04
Speaker 2: and we are so happy to have it. Anyway. Yeah, sorry,
17:11
Speaker 2: I just went on like a huge rant.
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Speaker 1: Oh no, you know, absolutely fine. These podcasts always work
17:17
Speaker 1: better when I talk less. So oh no, that's that's
17:21
Speaker 1: that's that's fascinating story. And I just a couple of
17:26
Speaker 1: things to pick up on there. The the original hospital
17:31
Speaker 1: you went to seemed very organized to respect. Hirshbrung straight away,
17:37
Speaker 1: because a lot of places that I a lot of
17:40
Speaker 1: people that I talk to, and the places that they
17:42
Speaker 1: are they are either sort of told oh no, there's
17:46
Speaker 1: nothing to worry about oh, you know, it'll be fine,
17:50
Speaker 1: you know, don't worry about it, or oh no, we
17:53
Speaker 1: don't think it's this, or we don't think it's that.
17:55
Speaker 1: But to actually think oh, it's Hirshbrung's or possible hirshbrung
18:00
Speaker 1: straight away seems incredibly organized. Right.
18:04
Speaker 2: So my sister in law's mom actually runs labor and
18:07
Speaker 2: delivery for the hospital that I delivered at, and so
18:10
Speaker 2: she came and saw me and she was like, you know,
18:12
Speaker 2: what are they saying? And I was like, they're saying
18:14
Speaker 2: that it's hersh runs and she's like, he said that
18:17
Speaker 2: and I was like, yeah, that's what he said it was.
18:19
Speaker 2: And she was like, okay, if that's what he has,
18:21
Speaker 2: like we've seen this, and he's he will be okay,
18:25
Speaker 2: you know, trying to calm me down. So yeah, they
18:28
Speaker 2: totally they knew right off the bat, and I, you know,
18:31
Speaker 2: was like googling it and then it gets really wonky
18:34
Speaker 2: and you're like, what is this?
18:36
Speaker 1: You know?
18:37
Speaker 3: Yeah, so yeah, googling can sometimes be the best thing
18:40
Speaker 3: and the worst thing. Yeah, But then but then to
18:46
Speaker 3: be and I can only imagine sort of you spoke
18:50
Speaker 3: a little bit about the emotions you were feeling having
18:53
Speaker 3: obviously just have a C section, and then to be
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Speaker 3: told Hirshbrums, you know, knowing, you know, I don't know.
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Speaker 3: Did they explain sort of how rare Hirshbrung's was at
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Speaker 3: the time, sort of in terms of one in five
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Speaker 3: thousand or No.
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Speaker 2: They didn't tell me that until, Like, obviously, when I
19:12
Speaker 2: did that Google search, I saw like one in whatever
19:15
Speaker 2: have this in the world. But I didn't know how
19:19
Speaker 2: crazy it was until I got to the children's hospital
19:24
Speaker 2: and they did reassure me like, no, we've seen this,
19:29
Speaker 2: you know, But I didn't really understand until I started
19:33
Speaker 2: doing my own research, and then it just got slimmer
19:37
Speaker 2: and slimmer as they gave us the news that he
19:39
Speaker 2: had long segment, you know. Yeah, so it's crazy.
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Speaker 1: Then to be the like you said, ten percent, ten
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Speaker 1: percent of the one in five thousand is super super rare,
19:55
Speaker 1: real rare. But yeah, absolutely incredible, incredible story. And I
20:00
Speaker 1: know something that you've said before before this. You said
20:06
Speaker 1: on the form that I hand out, you said that
20:10
Speaker 1: you once cruise diagnosed with Hirschbrungs. She said, you look
20:15
Speaker 1: at life differently. Would you like to go into a
20:19
Speaker 1: little bit about that.
20:21
Speaker 2: Yeah, I gosh. Ever since I had my little boy,
20:26
Speaker 2: it's just been you don't take anything for granted. I
20:32
Speaker 2: like I had said, with Crew, I didn't know that
20:36
Speaker 2: he was in pain, and I didn't know all of
20:37
Speaker 2: these things. Then he was so resilient. You really don't
20:44
Speaker 2: know what anyone's going through too. It's just been very
20:52
Speaker 2: eye opening. You don't take anything for granted. A healthy
20:56
Speaker 2: baby is the best thing in the entire world, and
20:59
Speaker 2: you don't realize how good you have it until you
21:02
Speaker 2: don't have that. Going home from the hospital without my
21:07
Speaker 2: little boy. Like so, like I had said, with my daughter,
21:11
Speaker 2: she was super premature, but came out kicking and screaming.
21:13
Speaker 2: Everything was perfect with her. She went home perfectly fine.
21:18
Speaker 2: It was me that was the one that was having
21:19
Speaker 2: the health problems, you know. But yeah, you just look
21:24
Speaker 2: at everything so much more special, and you don't take
21:27
Speaker 2: those little moments for granted. And being able to hold
21:29
Speaker 2: your baby after they come out, you know, like I
21:32
Speaker 2: didn't get that with Crew right away, and so you
21:35
Speaker 2: just really you really take everything. I don't know, it's
21:42
Speaker 2: just yeah, smart.
21:44
Speaker 1: Special, absolutely so of take every day as a blessing. Yes,
21:49
Speaker 1: for sure, No, that's fantastic and such an incredible story
21:54
Speaker 1: as well. And I guess very fortunately the fact that
21:57
Speaker 1: they did open up the children's hospital do you say,
22:00
Speaker 1: three minutes three minutes away, rather than having to be
22:05
Speaker 1: airlifted to that particular hospital. In terms of Crewe, now,
22:12
Speaker 1: I know you post quite a lot on Instagram about him,
22:16
Speaker 1: and he's always smiling. He always seems very very jolly.
22:20
Speaker 2: To me. He is literally my daughter he's that he's
22:26
Speaker 2: like Rosie cheeks. Can you still hear me? Yes? Okay,
22:32
Speaker 2: So he has these rosy cheeks and we have all
22:36
Speaker 2: these Santas around our house, and my daughter's like, it's
22:39
Speaker 2: just like Crewe. He's just like Santa. And I'm like,
22:44
Speaker 2: you're right, he is just like Santa. He is always
22:47
Speaker 2: so happy and jolly, you know. So that's been really
22:50
Speaker 2: fun brilliant.
22:52
Speaker 1: I mean, because you could say that he has, you know,
22:55
Speaker 1: every right in the world to complain or mode or
22:58
Speaker 1: scream or wide or anything. Uh yeah, and he's just
23:03
Speaker 1: incredibly happy and smiley, And that's absolutely fantastic. Yeah, you've
23:07
Speaker 1: had sort of the one surgery so far in terms
23:11
Speaker 1: of how Crewe is at the moment. Is their sort
23:16
Speaker 1: of regular checkups and everything and everything progressing as should be.
23:23
Speaker 2: Yeah, and so he is growing good, he's gaining weight,
23:27
Speaker 2: he's thriving with his iliostomy. We did have a check
23:31
Speaker 2: up a few months ago and they told us, you know,
23:36
Speaker 2: our option from here, and they told us we could
23:40
Speaker 2: do his pull through surgery in a few months, they said,
23:45
Speaker 2: like right before one, or they suggest when they're toilet
23:48
Speaker 2: changed to pee, or we can keep his iliostomy. And
23:53
Speaker 2: they drew us a picture of where his hershbruns starts
24:00
Speaker 2: and they told us that he will only have a
24:02
Speaker 2: third laugh of which is kind of crazy because Superla,
24:10
Speaker 2: and that he will have really really wet stolls five
24:15
Speaker 2: to six times a day if we choose to do
24:17
Speaker 2: the full crew and or we can choose to keep
24:21
Speaker 2: his iliostomy.
24:22
Speaker 1: Okay, but it's good to have the good to have
24:25
Speaker 1: the choice, and I think I guess, as we we
24:27
Speaker 1: said earlier with the organization, good to have the info there, uh,
24:32
Speaker 1: and good to kind of say, okay, well we could
24:34
Speaker 1: take this option. We could take this option, but to
24:37
Speaker 1: be informed, I think is the best. And it sounds
24:40
Speaker 1: like you do you do a lot of self research
24:44
Speaker 1: as well, which I think is is something I'd always
24:47
Speaker 1: advocate for is to just be you knows as clued
24:51
Speaker 1: up as as possible. It sounds like you do that fantastically.
24:54
Speaker 2: Well, yeah, no, of course. I love to know everything
24:58
Speaker 2: I passively can about something, and it's when it comes
25:00
Speaker 2: to my kids and uh, when I'm rocking for to
25:03
Speaker 2: sleep every night, I actually read stuff, you know every
25:07
Speaker 2: night about his hirshprungs. And I've been asking everyone you know, like, oh,
25:10
Speaker 2: if you had a son or what would you do
25:13
Speaker 2: if this was your kid? Would you pick to keep
25:15
Speaker 2: the iliostomy and have him thrive? But he does have
25:18
Speaker 2: that iliostomy bag, which I hate that colostomy zilli mastuis
25:24
Speaker 2: or whatever it is that you have. They have such
25:26
Speaker 2: a negative stigma about them. I hate it so much.
25:30
Speaker 2: And that's we were talking about Misha's Paige. Mister Crome
25:36
Speaker 2: politis right, that's I think good as handle is. I
25:41
Speaker 2: love that he is so open about having a bag,
25:44
Speaker 2: and it's so great for me to know that there's
25:46
Speaker 2: people like him or like you, and they do these
25:49
Speaker 2: things that my son has to look up to. So
25:55
Speaker 2: it's just it's been really really a good outlet for
26:00
Speaker 2: me to know that he has that, so yeah, I
26:04
Speaker 2: don't know. It's I ask everyone, I'm like, what you
26:07
Speaker 2: would you do?
26:08
Speaker 1: You know?
26:09
Speaker 2: And I've gotten a lot of mixed feedback.
26:12
Speaker 1: You know, yeah, of course, because in essence, there isn't
26:16
Speaker 1: a right and or wrong? Is there right?
26:19
Speaker 2: And it's just too bad. But the stigma of having
26:22
Speaker 2: a bag is it's so poor, it really it's I
26:28
Speaker 2: hate it.
26:29
Speaker 1: But yeah, yeah, I mean that's what I really hope
26:32
Speaker 1: in the future. And you know, people I'm the sure
26:35
Speaker 1: and and a few other people that I've interviewed who
26:39
Speaker 1: either have bags or a company called Ostiks who make them,
26:43
Speaker 1: are really trying to get rid of that, that stigma
26:47
Speaker 1: of oh, having a bag is you know, your difference
26:51
Speaker 1: or you're this, or you're that or the other. You know,
26:53
Speaker 1: it's just part of you, in the same way that
26:56
Speaker 1: my scars are part of me. Nobody can seement. There
26:59
Speaker 1: are a lot of people who know I have them,
27:02
Speaker 1: but they're there, you know, and they're they're and I yeah,
27:05
Speaker 1: I do hope. I do hope that that and I
27:08
Speaker 1: think there are a lot of changes being made. There
27:10
Speaker 1: are a lot of people who are very very positive
27:12
Speaker 1: and I yeah, and I'd love to sort of cling
27:15
Speaker 1: on to that. I am the amount of people that
27:17
Speaker 1: are positive. But you did mention Misha there, and it's
27:21
Speaker 1: that's how I found you. Originally I post by him
27:26
Speaker 1: about about Crew and about his his iliostomy. How did
27:31
Speaker 1: that collaboration come about?
27:33
Speaker 2: Yeah, so me and my husband actually found his page
27:37
Speaker 2: on Instagram and we would We just fell in love
27:41
Speaker 2: with his page and all this content and he posts
27:43
Speaker 2: different bag techniques he does and just tons of great things.
27:48
Speaker 2: And so I actually messaged him and I was like, Hey,
27:52
Speaker 2: I have a little boy. He has hirshprinks disease and
27:54
Speaker 2: he has an aliostomy, and I just want you to know,
27:57
Speaker 2: like this has been so special for me and my
28:01
Speaker 2: family to have and to show like that you're working
28:05
Speaker 2: out and you're living a total normal life and you
28:07
Speaker 2: have this illiostomy and you're on the beach and you're
28:09
Speaker 2: swimming and you know, you're living your best life. And
28:15
Speaker 2: he replied back and he was like I do. He's like,
28:18
Speaker 2: thank you so much. I do these hero I forgot
28:22
Speaker 2: what he worded it, but he's like, I do these.
28:25
Speaker 2: You've got a friend in me little hero things, and yes,
28:29
Speaker 2: I would love to do a post on him if
28:32
Speaker 2: you would be willing to kind of give me to
28:34
Speaker 2: sell brief a description of the story and send me
28:37
Speaker 2: a picture of your beautiful baby boy, and I'd love
28:41
Speaker 2: to bring awareness to his condition. And I was like, yeah,
28:44
Speaker 2: of course, you know, please, the more people that know
28:47
Speaker 2: about it the better, because before you know, I didn't know,
28:52
Speaker 2: so he did it and yeah, fantastic.
28:56
Speaker 1: I mean, I think we were along the same lines
28:58
Speaker 1: there and in terms of wanting people to know about
29:02
Speaker 1: this condition. And I don't know how that kind of
29:06
Speaker 1: manifests itself in the future, but I think I don't
29:10
Speaker 1: know if you agree with me on this that I'd
29:13
Speaker 1: love for any you know, if any any anybody gets
29:19
Speaker 1: diagnosed with hirshbrungs, or any mother has a son or
29:22
Speaker 1: father has a son or daughter diagnosed with hirshbruns, I'd
29:25
Speaker 1: love them to know what it is before being told.
29:30
Speaker 1: If that makes sense. Sure, Oh what is that you know?
29:35
Speaker 1: And I know that that is probably many many years off. Yes,
29:40
Speaker 1: that hopefully in you sharing your story and lots of
29:44
Speaker 1: other people coming on here and sharing their stories hopefully
29:49
Speaker 1: will sort of spread the word. So yes, it's going
29:51
Speaker 1: to be rare, of course, it's going to be rare.
29:53
Speaker 1: It's one in five thousand, give or take. It's never
29:57
Speaker 1: it's never going to be, you know, a common condition. Well,
30:00
Speaker 1: hopefully not gonna be a common condition, but for people
30:04
Speaker 1: to at least know, at least know what it is.
30:07
Speaker 1: I don't know if you're along the same lines that.
30:09
Speaker 2: Oh of course, yes I know.
30:13
Speaker 1: But back to back to Crewe. Momentarily, we sort of
30:17
Speaker 1: got We've drifted off topic a little bit, but that's
30:21
Speaker 1: okay in terms of Crewe. Now, he said that he's
30:29
Speaker 1: he's thriving and he's very happy. Just give us a
30:34
Speaker 1: little bit more on his kind of personality because being
30:37
Speaker 1: sort of nine months old, I guess babies tend to
30:40
Speaker 1: develop more personality around that age. What's his what's his personality? Like?
30:46
Speaker 2: Oh gosh, I could go on and on. He is
30:48
Speaker 2: truly the biggest joy that I could have ever asked for.
30:53
Speaker 2: He's so happy, he is hitting all of his milestones.
30:57
Speaker 2: He's crawling, he's sitting up, he's himself up, he's babbling.
31:03
Speaker 2: He loves his sister so much. My daughter loves to
31:07
Speaker 2: dance and do fun things, and he will clap for her,
31:10
Speaker 2: and it is just so fun. To see them together.
31:15
Speaker 2: And I do want to say one thing. My daughter,
31:20
Speaker 2: she has like some sensory she's very OCD and with
31:28
Speaker 2: Crew having a bag, I was kind of worried that
31:31
Speaker 2: she would kind of maybe be like, oh, like, you know,
31:33
Speaker 2: a little weird about it. And No, she has fully adapted.
31:39
Speaker 2: She feels how she helps me changes back. She will,
31:44
Speaker 2: she will help me do it. She knows all the steps,
31:47
Speaker 2: she knows what comes next, and she'll hand it to me.
31:51
Speaker 2: And because he's so wiggly and still so little, definitely
31:54
Speaker 2: a two person job. And I've been home alone with
31:58
Speaker 2: just the kids and she's been like, no, Mama, help
32:01
Speaker 2: you do it. And it's been that's been really amazing
32:04
Speaker 2: to see her be like, Crew, you have hirsh Sprungs
32:07
Speaker 2: disease and it's okay. It's okay if you go poop
32:10
Speaker 2: in a bag, we don't care, you know. And that
32:14
Speaker 2: just goes again to say like how resilient kids are,
32:19
Speaker 2: and that he's just a totally normal baby. You know,
32:23
Speaker 2: he's so happy and a lot of people that I've seen,
32:28
Speaker 2: they wouldn't even know. They would be like, oh, he
32:30
Speaker 2: has what I wouldn't have ever even thought, you know,
32:34
Speaker 2: where he's been through, why he's had a surgery, and
32:37
Speaker 2: you know, and it's just it's a really big blessing
32:41
Speaker 2: and we are so lucky that he is so happy,
32:45
Speaker 2: because I know a lot of babies they have a
32:48
Speaker 2: really hard time when they have hush sprungs and all
32:50
Speaker 2: the surgeries. Then I've read so many about like the
32:53
Speaker 2: failure to thrive just you know, all of the other
32:57
Speaker 2: complications that come with this disease. It and We've just
33:01
Speaker 2: been so so blessed to have such a happy, vibrant
33:07
Speaker 2: baby that's doing so well.
33:09
Speaker 1: That's lovely. And I love the way that you look
33:13
Speaker 1: at it in that sense as well, because it is
33:17
Speaker 1: so so easy to go why was either one in
33:19
Speaker 1: five thousand, you know, why why did this happen? I mean,
33:23
Speaker 1: was it's not one in five thousands ten percent of
33:26
Speaker 1: one in five thousand. My map isn't so good. I
33:28
Speaker 1: don't know what that is, but it's it's it's very rare. Yeah,
33:32
Speaker 1: but it's very very easy to think like that, and
33:36
Speaker 1: I guess people do from from time to time. I
33:38
Speaker 1: know I have from times to time think, you know,
33:39
Speaker 1: why why you know, I had no family history of
33:43
Speaker 1: it or anything, so you know what, really, but I
33:47
Speaker 1: do love the way that that you are so positive
33:50
Speaker 1: about it, and it's fantastic to hear that your daughter's
33:54
Speaker 1: so engaged with crew as well. That's heartwarming to me.
33:59
Speaker 1: That's fantastic.
34:00
Speaker 2: Oh yes, And when we were in the hospital, you know,
34:03
Speaker 2: we had tons of family members get us books and
34:05
Speaker 2: there's some really really good books on Hirshpruns on Amazon
34:08
Speaker 2: for kids. One of them is called I Think Alliostomy
34:13
Speaker 2: Allie osk to me, has like a cute little bear
34:15
Speaker 2: on it, and then one is I think It's just
34:19
Speaker 2: called Hirshgruns Disease and it's super cute, and you know,
34:22
Speaker 2: we read them and she'll try to read them to
34:24
Speaker 2: him and it talks about all the little kids, like
34:29
Speaker 2: one little boy has just a bunch of scars on
34:31
Speaker 2: his belly, one has neliostomy bag. So it's it's very
34:36
Speaker 2: cute and it's been very good and for me as
34:39
Speaker 2: a mom to see them still connect and knowing my
34:42
Speaker 2: daughter has like these issues, you know that she's not like,
34:46
Speaker 2: you know, weirded out buy it and she's so she
34:49
Speaker 2: loves them so much.
34:50
Speaker 1: So, but that's interesting that it could very easily have
34:54
Speaker 1: gone the other way, and she could have said, you know, no,
34:58
Speaker 1: not interested whatever. But the fact that she's almost sort
35:02
Speaker 1: of gone the other way towards him is is so
35:05
Speaker 1: lovely and I love hearing that's fantastic.
35:07
Speaker 2: Yeah, yeah, it's been very special to see so lovely.
35:11
Speaker 1: So in terms of cruse future, I know you sort
35:17
Speaker 1: of mentioned a little bit about potentially medically wise, what
35:23
Speaker 1: may happen, what may not happen, what you might look
35:25
Speaker 1: at in the future in terms of invention, a little
35:28
Speaker 1: bit about his personality as well, in terms of his
35:33
Speaker 1: sort of future going forward. I know he's only nine
35:37
Speaker 1: months old, and I'm not asking you to plan what
35:39
Speaker 1: job he's going to have, what he's going to do, this,
35:40
Speaker 1: that the other. Okay, what would you apart from obviously
35:45
Speaker 1: being happy and healthy, what else would you like to
35:48
Speaker 1: see the crew in the future.
35:51
Speaker 2: Oh, you know, we are still unsure what we are
35:55
Speaker 2: going to decide. I go back and forth on the
35:59
Speaker 2: pull through surgery or keeping his back because a lot
36:04
Speaker 2: of doctors have just told us, you know, you got
36:06
Speaker 2: to pick what, like you got to kind of pick
36:11
Speaker 2: your poison. Do you want him going to the bathroom
36:13
Speaker 2: five six times a day or do you want him
36:16
Speaker 2: to have back? And my husband is very like, you know,
36:20
Speaker 2: he's striving, he's doing so good, let's let's let him
36:23
Speaker 2: keep the bag. And I think that that's kind of
36:26
Speaker 2: what we are leaning more towards. But for Crew, I
36:30
Speaker 2: would really he is so much loved to give and
36:35
Speaker 2: if you are around him, you could just feel it.
36:38
Speaker 2: And I really believe that he was given this to
36:42
Speaker 2: help other people. And I think that if you know,
36:46
Speaker 2: we do choose to keep the bag, that he can
36:50
Speaker 2: you know, change that stigma a little bit and you know,
36:55
Speaker 2: embrace it. And I just hope that you know, he
37:00
Speaker 2: can be like a little voice for everyone that you know,
37:02
Speaker 2: I'm totally fine and I live a totally normal life
37:05
Speaker 2: and I'm healthy, and I'm happy and I'm you know,
37:08
Speaker 2: doing all these things.
37:09
Speaker 1: Then oh yeah, so you can go on effectively. Yeah
37:14
Speaker 1: that sounds absolutely fantastic. So we'll go on and be
37:17
Speaker 1: kind of an ambassador in a way of people with
37:21
Speaker 1: with stoma bags, and yeah, I will. I'm going to
37:25
Speaker 1: be going to be somebody that says, look, I have this,
37:27
Speaker 1: and you know, I live a normal life and I
37:30
Speaker 1: do this and I do that and whatever. No, that's
37:33
Speaker 1: that's absolutely fantastic.
37:35
Speaker 2: I mean he's only nine months, so that's what I say.
37:39
Speaker 1: Not going into you know, Korea planning here or anything
37:42
Speaker 1: like that, but I always tend to like to ask
37:45
Speaker 1: about the future sometimes because I think it's it's certainly
37:49
Speaker 1: something i'd think of, and I think it's sometimes it's
37:53
Speaker 1: good to not look too far ahead, but to just
37:56
Speaker 1: sort of have a little plan and kind of think, right,
37:58
Speaker 1: you know, this could happen, that could happen. Then, Yeah,
38:01
Speaker 1: I think that's absolutely fantastic. Thank you ever so much
38:07
Speaker 1: for sharing cruise story, for joining me, and I wish
38:12
Speaker 1: you Crewe and the rest of your families all the
38:16
Speaker 1: best for the future.
38:18
Speaker 2: Yeah, thank you so much. This is so amazing that
38:21
Speaker 2: you do this, so thank you, Thank you very much.
38:27
Speaker 1: Thank you for listening to the podcast. Find us on
38:30
Speaker 1: Instagram Tom's Underscore Hirshbrung's Underscore podcast. Listen to previous episodes
38:36
Speaker 1: on Spotify by searching Tom's Hirshbrung's podcast.