Latest / Tom's Hirschsprung's Podcast / Episode 87 - With Alexa Murphy

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Episode 87 - With Alexa Murphy · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshbrung's Podcast, a space where
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Speaker 1: we talk openly about living with Hirshprung's disease. Whether you
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Speaker 1: live with it, care for someone who has it, or
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Speaker 1: just want to understand more, this podcast is for you.
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Speaker 1: Each episode, we will explore real stories and honest conversations
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Speaker 1: about a condition that often goes unheard. Thank you for
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Speaker 1: tuning in. Hello, and welcome to episode eighty seven of
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Speaker 1: Tom's Hirshprungs Podcast. I am delighted to be joined by
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Speaker 1: Lexi this afternoon. Lexi, welcome to the podcast.
0:55
Speaker 2: Hi, thank you, thanks so much.
0:57
Speaker 1: For coming on. We are going to go through, well,
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Speaker 1: you're very very recent experience of being a mother to
1:07
Speaker 1: a child with Hirshprungs and sort of everything that you've
1:12
Speaker 1: learned along the way, because I'm well aware that the
1:15
Speaker 1: last seven months or so have been quite the roller coaster,
1:19
Speaker 1: So we're going to go through well a lot of
1:22
Speaker 1: those as well, and I guess will start kind of
1:27
Speaker 1: where we usually do, with the birth of I believe
1:31
Speaker 1: your third child, Emmett.
1:34
Speaker 2: Yeah, so Emmett was born December thirteenth of twenty twenty four,
1:40
Speaker 2: so we just hit seven months, and I thought, you know,
1:46
Speaker 2: he's my third baby. I know exactly what I'm doing now.
1:48
Speaker 2: It should be easy peasy. It was not. First. I mean,
1:55
Speaker 2: I went in I think at about midnight to have him,
1:57
Speaker 2: and I have him at birth my two boys at
2:00
Speaker 2: earthing center, so I'll have them wait four hours. Then
2:04
Speaker 2: I get to go home, and then they come over,
2:06
Speaker 2: like the midwives come over and they check on us afterwards.
2:10
Speaker 2: And I just found like that, after having my daughter
2:14
Speaker 2: in a hospital with like military, I just wanted like
2:18
Speaker 2: a little bit more freedom and you know, just somewhere
2:22
Speaker 2: more comfortable to have my babies. And so I did
2:26
Speaker 2: the same with Emmett after having my first son there
2:29
Speaker 2: and I go in at midnight and end up having
2:33
Speaker 2: him at about four, yeah, four thirty in the morning,
2:38
Speaker 2: and it was pretty anti climactic until like the very
2:43
Speaker 2: end when I had to push and he had the
2:46
Speaker 2: cord wrapped around his neck like three times, and so
2:51
Speaker 2: I was like, okay, once I got him out, and I
2:52
Speaker 2: was like, you know what, that's all. That's it. That's
2:55
Speaker 2: I did the hard part. We're fine. He was just fine.
2:59
Speaker 2: All of his vitals were fine, except for by the
3:02
Speaker 2: time we hit about an hour after I delivered, his
3:06
Speaker 2: respiratory rate was very high, like very high. So instead
3:10
Speaker 2: of staying for four hours, they had to stay for six.
3:13
Speaker 2: And then he hadn't like passed any stool yet, and
3:18
Speaker 2: they're like, you know what, it's fine, we'll come check
3:21
Speaker 2: on you within twenty four hours. Everything's fine. We technically
3:25
Speaker 2: give them up to forty eight hours to pass their
3:27
Speaker 2: first like maconium, but he's gonna be fine. You know,
3:32
Speaker 2: you're really good at paying attention, like very attentive to
3:37
Speaker 2: like different things whatever. So we go home. Everything's fine,
3:42
Speaker 2: he's eating normally, and then still no bowel movement. He's
3:48
Speaker 2: urinating just fine. And then at about I would say,
3:54
Speaker 2: like nineteen hours after I delivered him, he kind of
4:00
Speaker 2: stops eating and then he kind of gets a little bit.
4:05
Speaker 2: I get lethargic and floppy, but he's not so floppy
4:10
Speaker 2: that I'm so concerned. I'm thinking, okay, newborn baby. He's
4:14
Speaker 2: very tired. He went through a lot. And then right
4:19
Speaker 2: about ben is when the midwife comes over and she's like,
4:23
Speaker 2: all right, we're going to check you out. You're looking great.
4:25
Speaker 2: Let's check on Emmett great. We weigh him and his
4:29
Speaker 2: weight's fine. It's not like he hadn't gained anything or
4:32
Speaker 2: that he lost dramatic in the time. But while she's there,
4:38
Speaker 2: I told her I expressed my concerns about him kind
4:41
Speaker 2: of like lagging off of eating, and she's like, okay,
4:44
Speaker 2: well maybe it's your supply. Let's just supplement. And I
4:48
Speaker 2: was a little bit bummed about that because I'm like,
4:49
Speaker 2: I don't think I gave myself enough time, but I
4:53
Speaker 2: am more concerned about if my baby's okay. So of course,
4:57
Speaker 2: so my husband runs out, he gets formula, and within
5:01
Speaker 2: I don't know, she waits to see, like how much
5:03
Speaker 2: he eats, and we gave we put half an ounce
5:06
Speaker 2: in a bottle and it took him almost three hours
5:11
Speaker 2: to get not even but I mean the most minute
5:16
Speaker 2: amount out of that bottle, and the whole time it's
5:18
Speaker 2: just like dribbling out of his mouth. So then I
5:22
Speaker 2: kept thinking something's wrong, and my midwife's like, just give
5:25
Speaker 2: him a little bit more time, And in my head
5:27
Speaker 2: I was like, there's something absolutely not right. There's something's
5:30
Speaker 2: not right. I don't like it. So we have a
5:34
Speaker 2: really great children's hospital here in Fort Worth, Texas, and
5:38
Speaker 2: it's called Cook's children, and she said, you know, if
5:42
Speaker 2: in your heart you do not feel like something is okay,
5:45
Speaker 2: I highly recommend that you take him to Cooks. So
5:49
Speaker 2: within the hour that she's there or after, you know,
5:53
Speaker 2: we talk about it. She's like, maybe do that. Well,
5:58
Speaker 2: my husband and I get Emma in the car and
6:01
Speaker 2: we're just driving and I look over at him, and
6:03
Speaker 2: of course I'm sitting in the back, you know, paranoid mom,
6:06
Speaker 2: no matter if it's my first or my third. And
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Speaker 2: I see him and he starts vomiting like bile, and
6:15
Speaker 2: I just I knew what that was like because I
6:18
Speaker 2: had a hyperemesis while I was pregnant, so it's I
6:22
Speaker 2: just knew exactly what it was immediately. And then he
6:25
Speaker 2: starts turning blue, and so I hurry and I rip
6:30
Speaker 2: him out of the car seat, and I'm like yelling
6:31
Speaker 2: at my husband, like you have to go faster. We
6:33
Speaker 2: have to get there. Something's really not right. And at
6:37
Speaker 2: that point he's not unresponsive, but he's completely floppy. And
6:41
Speaker 2: so but it takes us not that long because my
6:45
Speaker 2: husband is speeding down the toll road probably I think
6:48
Speaker 2: he was going like one twenty. Luckily, the roads were
6:52
Speaker 2: pretty free because it was winter and we took an
6:57
Speaker 2: expressway and it was early morning. So anyway, we get there,
7:02
Speaker 2: we end up at the wrong We entered the emergency
7:05
Speaker 2: room in the wrong way. We jump out. All of
7:07
Speaker 2: our doors are wide open in our car. We just
7:09
Speaker 2: left it. We left it. We ran inside, and it's wintertime.
7:13
Speaker 2: So everyone and their mom is there, the lines almost
7:17
Speaker 2: out the door, and I'm holding him, and the nurse
7:22
Speaker 2: at the front looked at me and he just knew
7:26
Speaker 2: something was wrong, and he's like, all right, Mama, tell
7:29
Speaker 2: me what's wrong. And I guess I should preface that
7:32
Speaker 2: I'm not a practicing nurse, but I did graduate nursing school,
7:36
Speaker 2: so I kind of know the lingo to rattle out,
7:40
Speaker 2: like what's important whatever. So I'm holding my baby and
7:43
Speaker 2: I'm trying not to, you know, outwardly panic, but I
7:49
Speaker 2: just said, Okay, my baby is twenty four hours old.
7:53
Speaker 2: He's lethargic, he's turning blue, YadA YadA, yadda, okay cool.
7:57
Speaker 2: He looks at me and he goes, Okay, Mama, every
8:00
Speaker 2: thing's going to happen really fast, but we're going to
8:01
Speaker 2: take care of you. Follow me when we get into
8:04
Speaker 2: I mean we're here for maybe a minute. We've overpassed
8:07
Speaker 2: everybody because obviously, you know, airway is of utmost important.
8:12
Speaker 2: So we get to I follow him. We get to
8:16
Speaker 2: the back and there's literally a room of twenty people
8:18
Speaker 2: and they are ready to just take emmett lay him down,
8:21
Speaker 2: start working on him, getting everything handled with him. And
8:25
Speaker 2: as soon as I passed him off, I kind of
8:27
Speaker 2: just lost it, you know, like it's just I was
8:31
Speaker 2: able to keep it together to get the information out
8:34
Speaker 2: that I needed to share. But after I knew that
8:37
Speaker 2: he was in like safe hands, okay, like I can,
8:41
Speaker 2: I can kind of fall apart. Anyway. By the time
8:45
Speaker 2: we get there, Yeah, by the time I set him
8:47
Speaker 2: down and you know, they start working on him, they're
8:49
Speaker 2: getting IV started, and you know, everyone's rattling off all
8:53
Speaker 2: kinds of stuff. And even though I know certain like
8:57
Speaker 2: medical terminology, when it's your own kid, it kind of
9:01
Speaker 2: just goes out the window. It doesn't quite doesn't matter.
9:05
Speaker 2: And then my husband he doesn't know any of that.
9:08
Speaker 2: He's an IT, so he's very smart, but he knows
9:11
Speaker 2: different things. So he's asking me different things, and I'm
9:15
Speaker 2: like trying to process and then share it. And then
9:18
Speaker 2: you know, it's in and out and anyway, they get
9:21
Speaker 2: him like stabilized. He never you know, didn't have a heartbeat,
9:26
Speaker 2: he was never you know, he never coded or anything.
9:30
Speaker 2: But he just was getting id's no response, they're moving him,
9:34
Speaker 2: no response, you know. Anyway, by that time, they're like, okay,
9:38
Speaker 2: I think we kind of know what it is, but
9:40
Speaker 2: they didn't share that information. They're like, we need an
9:42
Speaker 2: attending surgeon to come and you know, check on him.
9:47
Speaker 2: Whatever we get like that kind of information, and I'm
9:51
Speaker 2: just this happened. We were there for maybe an hour
9:54
Speaker 2: and they're like, all right, well'll send it to the
9:55
Speaker 2: nick you we're fast. So then at that point we're
9:59
Speaker 2: in the NICKU and we just wait for the doctor.
10:04
Speaker 2: They come in almost immediately with an X ray machine.
10:07
Speaker 2: They put it over the top of them and they're like,
10:10
Speaker 2: all right, so he has a lot of gas and
10:14
Speaker 2: we can tell like, you know, obviously he hasn't passed myconium.
10:18
Speaker 2: We think he has hirsprungs. And I'm like, I don't
10:21
Speaker 2: what is that? What is that? And at that point
10:24
Speaker 2: the physician literally leaves. He's like, oh, I have a
10:27
Speaker 2: phone call, let me go. And I'm like oh no,
10:30
Speaker 2: what does that mean? You know, like what is happening?
10:34
Speaker 2: Sure enough, one of the sweet little nurses, she looks
10:37
Speaker 2: at me and she can tell that like I just
10:41
Speaker 2: need something, like I need more information. But clearly the
10:46
Speaker 2: doctor is busy, and from a medical standpoint, like I understand,
10:51
Speaker 2: there's cases that are higher. So she just goes, hey,
10:57
Speaker 2: I'm going to get a chaplain in here. And in
10:59
Speaker 2: my head, that is worst case scenario. Why are you
11:01
Speaker 2: getting a chaplain? You're telling me awful news, like something
11:05
Speaker 2: very bad is going to happen. So at that point
11:08
Speaker 2: I literally lost it. I fell into my husband's arms
11:11
Speaker 2: and I'm like, my poor baby is you know, twenty
11:14
Speaker 2: five hours old at this time, and I'm gonna lose him.
11:19
Speaker 2: And then about thirty minutes later, after I spiraled, the
11:23
Speaker 2: chaplain came in and she's like, no, no, no, you know,
11:26
Speaker 2: like I I'm just here because the nurses thought that
11:29
Speaker 2: you could, you know, use a little bit of comforting,
11:33
Speaker 2: and that's all I want to do for you. And
11:35
Speaker 2: so I kind of like word vomited on her and
11:38
Speaker 2: I just said, so's my baby gonna be okay? And
11:42
Speaker 2: she goes, well, I'm just here to comfort you, but
11:45
Speaker 2: the physician is going to tell you everything. Within five
11:49
Speaker 2: minutes of her coming in, he goes, all right, so
11:52
Speaker 2: here's what it is. It's her shprungs. We've confirmed it
11:56
Speaker 2: by or you know, I've mostly confirmed it by X ray,
11:59
Speaker 2: but we will need to do a biopsy. And I'm like, okay.
12:02
Speaker 2: He's like, but I've seen it a lot. This is
12:04
Speaker 2: what it is, you know, And I'm like, okay, still
12:08
Speaker 2: means absolutely nothing to me. That means nothing to me.
12:12
Speaker 2: I don't know. And then he starts saying, Okay, we're
12:15
Speaker 2: going to do surgery for this, and then this is
12:17
Speaker 2: like the possible outcome. You know, we might just do
12:20
Speaker 2: a pull through, but it also could be like a
12:22
Speaker 2: button or a colostomy or whatever. And I'm just thinking,
12:26
Speaker 2: my baby is a day old? How do how do we?
12:29
Speaker 2: How do we do this? But yeah, pretty much that's
12:33
Speaker 2: kind of where that first day ended, where we got
12:37
Speaker 2: like a definitive, definitive diagnosis.
12:42
Speaker 1: So wow, what a what are twenty five hours? I
12:46
Speaker 1: mean that's and I can't imagine you slept a lot
12:51
Speaker 1: during that time as well.
12:53
Speaker 2: Oh no, not at all, No, no.
12:54
Speaker 1: No, that's what I was thinking. So not only are
12:57
Speaker 1: you going through everything you've been through as a mother
13:02
Speaker 1: having just given birth, given birth to a child, that
13:06
Speaker 1: this is clearly something there's an issue, and you know this.
13:10
Speaker 1: You also haven't slept like barely a wink. And then
13:16
Speaker 1: the physician goes, you've got hersbrongs anywhere. I've got to
13:18
Speaker 1: take a call by.
13:20
Speaker 2: I can't.
13:22
Speaker 1: I can't imagine how on earth that feels.
13:27
Speaker 2: It was traumatic.
13:29
Speaker 1: It was.
13:32
Speaker 2: Absolutely Now that, especially now that they think about it,
13:35
Speaker 2: kind of gives me like the body chills, because if
13:39
Speaker 2: that was somebody else, I would just be like almost
13:42
Speaker 2: like watching a movie where things just happened so dramatically,
13:45
Speaker 2: so fast and so out of control, and you're like, man,
13:48
Speaker 2: this is a this is a terrible movie. This poor mom,
13:51
Speaker 2: this poor family. You know, like I can't imagine a
13:54
Speaker 2: baby going through that. And I'm like, that's weird. I
13:56
Speaker 2: lived it, and it's kind of just part of our
13:58
Speaker 2: story now you know just what happened.
14:01
Speaker 1: Ye. I've had people explain it to me as in
14:05
Speaker 1: they sort of it's slightly out of body experience where
14:09
Speaker 1: they feel like they're watching themselves go through this, but
14:14
Speaker 1: they're actually going through it. I don't know if that
14:16
Speaker 1: makes sense.
14:17
Speaker 2: Oh, it really does. It truly does. Like I said,
14:20
Speaker 2: almost a movie. I kind of feel, you know, when
14:25
Speaker 2: you're watching a movie and they kind of do slow
14:26
Speaker 2: motion and their body kind of drags, and it's just
14:30
Speaker 2: I feel like I was in that for a while.
14:33
Speaker 2: You didn't just past that first that first day or
14:36
Speaker 2: nick Usday. It was for months, and I feel like
14:43
Speaker 2: I kind of starting to not quite feel that way.
14:47
Speaker 2: But at the same time, there are days where it's
14:49
Speaker 2: just another gut punch of something new.
14:52
Speaker 1: So yeah, and it's like we mentioned that the beginning
14:56
Speaker 1: and it's only seven months I mean talking, you know,
15:02
Speaker 1: very very young in terms of his Hirshbrung's journey and
15:07
Speaker 1: every I'll sort of preface by saying that every journey
15:11
Speaker 1: is different. They having people that have said to me, oh,
15:14
Speaker 1: you know, it's you had Hirshbrung, so everything's fine by
15:17
Speaker 1: the time you're five months and you think, well, no,
15:20
Speaker 1: not necessarily. Some people have pulled through, and then you know,
15:24
Speaker 1: everything's fine. Some people it's a bit different, you know it.
15:27
Speaker 1: Everybody's different. So it's why I'm always very careful about saying, oh,
15:32
Speaker 1: well you're seven months, Toru, Now everything's cool. Right, not
15:36
Speaker 1: necessarily you're.
15:38
Speaker 2: Lucky then yes, then you know, you get your surgery
15:41
Speaker 2: and you're great. Yeah, but yeah, no, we hit that
15:46
Speaker 2: first day and then they just said, okay, you know,
15:49
Speaker 2: we think it is. We'll be back tomorrow. Because he
15:52
Speaker 2: was born on a Friday, of course, so Saturdays, you know,
15:56
Speaker 2: physicians aren't always in, so we had to wait until Monday,
16:02
Speaker 2: and he went completely you know, he couldn't have any milk,
16:08
Speaker 2: which he wasn't gonna really take it anyway, but that
16:11
Speaker 2: made me feel sad. So for the next shoot two
16:16
Speaker 2: days pretty much, yeah, two days we we did. I
16:21
Speaker 2: didn't get to feed him, I didn't get to do anything.
16:23
Speaker 2: He just laid in his little incubator. They ended up
16:26
Speaker 2: putting a pick line in him and to do like TPN,
16:31
Speaker 2: and then they also did their like biopsy. That was
16:38
Speaker 2: something he he completely pretty much at that moment, guaranteed
16:48
Speaker 2: he had her sprungs. When they did the biopsy, it
16:51
Speaker 2: immediately came out. It actually hit the cart. Of course,
16:56
Speaker 2: you know, physicians at this point no not to stand
16:58
Speaker 2: at the end of the table. Dog nobody was at
17:01
Speaker 2: the end of the table. He shut everything across the
17:07
Speaker 2: room and she's like you know what, I'm just gonna
17:09
Speaker 2: go ahead and just tell you he does have her
17:11
Speaker 2: sprunks before this biopsy even comes back. He does. But
17:16
Speaker 2: we'll of course put this in and now I can
17:20
Speaker 2: kind of giggle at it because at the time, obviously
17:23
Speaker 2: I was not in the giggling mood. But now that
17:25
Speaker 2: I can replay that whole situation back when he had
17:28
Speaker 2: the biopsy, it was a lot, a lot came out.
17:33
Speaker 1: And.
17:35
Speaker 2: Yeah, it was it was just quite an experience. But yeah,
17:40
Speaker 2: we had that biopsy, we did pickline TPN, it was
17:45
Speaker 2: confirmed through the biopsy, and then at four years or
17:50
Speaker 2: four years four days old, he ended up having his
17:53
Speaker 2: pull through and at the same time, she when she
17:57
Speaker 2: went in, she's like, he also has inguinal hernias, so
18:01
Speaker 2: they repaired those at the same time. And you know,
18:04
Speaker 2: I mean I noticed that his stomach was very distended,
18:08
Speaker 2: but of course I didn't know what hersprungs was, So
18:12
Speaker 2: who's to say that that's not his normal? Like I
18:16
Speaker 2: knew it wasn't normal for my other two, but for him,
18:19
Speaker 2: who knows. So, yeah, he ends up having his procedure,
18:24
Speaker 2: he's pulled through, and his inquinal hernia has repaired the
18:26
Speaker 2: same at the same time, and in my head, I
18:30
Speaker 2: was under the under like under the impression that he
18:33
Speaker 2: has this surgery and it's he's good. We're in the clear.
18:37
Speaker 2: We're in the clear. I of course hadn't you know.
18:42
Speaker 2: I didn't. I didn't know soul. How would I. Yeah,
18:46
Speaker 2: so I think, you know, it's all good. I see him,
18:49
Speaker 2: you know, they bring him back after his procedure, and
18:54
Speaker 2: I mean, I'm glued to this hospital. I'm obviously not
18:57
Speaker 2: allowed to be there for his person, but I'm there.
19:01
Speaker 2: I'm not going far. I'm waiting. They send text messages like, hey,
19:05
Speaker 2: procedure has started, procedure is going well, patient is tolerating
19:09
Speaker 2: procedure or in a seasion, procedure da da da it was.
19:12
Speaker 2: I think his procedure was all of I think it's
19:14
Speaker 2: maybe five hours long, the longest five hours of my life.
19:19
Speaker 2: But by the time they texted me, I was we
19:24
Speaker 2: were there. I was running. I was meeting him at
19:27
Speaker 2: the hallway so that we could be there to walk
19:29
Speaker 2: him back, and somehow we missed him. We went one
19:32
Speaker 2: way and they went another, and so by the time
19:35
Speaker 2: I got there, I'm looking for him everywhere, you know,
19:38
Speaker 2: And when I tell you I'm running at four days postart,
19:41
Speaker 2: I'm running down these halls and then by the I'm like, okay,
19:45
Speaker 2: I can't find my baby. They're like, okay, he's actually
19:47
Speaker 2: in his room. And the way that I cried because
19:50
Speaker 2: I missed him by four minutes, like I just wanted
19:53
Speaker 2: to be there to support him. He's asleep, but you know,
19:57
Speaker 2: I couldn't handle him, you know, not being there or
20:03
Speaker 2: not being there for him. We ended up he tolerated
20:06
Speaker 2: it well. His little incisions were great. They kept him
20:12
Speaker 2: let's see, Yeah, they kept him off of like milk
20:14
Speaker 2: for about seven days, which is also really hard. So
20:17
Speaker 2: they kept him still on like pickline TPN, and then
20:21
Speaker 2: we ended up doing a total stay in the NICU
20:23
Speaker 2: for two weeks. We got out on Christmas Eve, which
20:27
Speaker 2: was like a Christmas miracle. It didn't last that long though,
20:33
Speaker 2: and because he had a procedure, we got to come
20:37
Speaker 2: home and then he was doing great. He was spinning
20:40
Speaker 2: up a little bit, but they were like, Okay, that's fine.
20:42
Speaker 2: I would send pictures in and they were like, you know,
20:46
Speaker 2: actually that's fine. That's normal for what he's gone through.
20:50
Speaker 2: If there's no fever or anything, you're good. Great, well,
20:54
Speaker 2: on Chris or on New Year's Eve, he had his
21:00
Speaker 2: like circumcision, and that shock of having that done sent him,
21:06
Speaker 2: it reverted him. He stopped going to the bathroom like
21:10
Speaker 2: everything kind of Let's see, I think three days post up,
21:13
Speaker 2: he did have a bowel movement on his own and
21:16
Speaker 2: it was like a party. We threw an entire party,
21:20
Speaker 2: you know, and every you know, he was still having
21:23
Speaker 2: bowl movements, I guess every day, and they were small,
21:26
Speaker 2: but again he's brand new, he's not eating a ton.
21:29
Speaker 2: It's great. Okay, then we're going back to New Year's
21:33
Speaker 2: he has his circumcision procedure. He again tolerated that very well.
21:38
Speaker 2: He was pooping literally up until that was done. And
21:42
Speaker 2: then that night we ended up in the niku again
21:46
Speaker 2: because he started vomiting and stopped pooping all together, and
21:52
Speaker 2: then became very hard, very distended, and we ended up
21:55
Speaker 2: staying there for about four days. We got or he
21:59
Speaker 2: got he got treated for or admitted and treated for entercolitis,
22:04
Speaker 2: and that was sad because I thought, okay, it's he's
22:09
Speaker 2: kind of like a normal baby, you know, like he's
22:11
Speaker 2: quote unquote like everything's pretty normal. And then it's just
22:15
Speaker 2: kind of like a reminder it's it's not it's not
22:18
Speaker 2: quite normal. And then he gets out at four days
22:23
Speaker 2: and then it kind of goes a little bit back
22:26
Speaker 2: to normal. But then they we had like a little
22:31
Speaker 2: bit of a backside again. And then they taught us
22:33
Speaker 2: how to do irrigations. So they're like, okay, we're gonna
22:36
Speaker 2: do irrigations and you're also going to do dilations, and
22:42
Speaker 2: so we just kind of stuck with that and that
22:44
Speaker 2: was a miserable experience. That's not something any you know,
22:49
Speaker 2: parent wants to do to their kid, even though you
22:52
Speaker 2: know it's to benefit them. It's not a great experience.
22:55
Speaker 2: I cried, he cried, and it wasn't keeping him regular,
23:03
Speaker 2: it wasn't making him go to the bathroom. So then
23:06
Speaker 2: we skipped to he's two months and his surgeon says,
23:10
Speaker 2: you know what, let's try botox. Okay, he goes in
23:13
Speaker 2: for that about an hour procedure, gets botox. He starts
23:17
Speaker 2: pooping immediately immediately. It just botox was what worked for him.
23:23
Speaker 2: So we did botox and that got him. It got
23:26
Speaker 2: him going well. Then he gets sick because it's still
23:30
Speaker 2: wintertime and all the germs and he has siblings and
23:34
Speaker 2: get sick, knocks the botox out. So we go back
23:38
Speaker 2: to irrigations, and then we do that a couple times,
23:43
Speaker 2: and at about five months we decide, Okay, the botox
23:46
Speaker 2: probably would have been out anyway, let's do another one.
23:50
Speaker 2: And so I guess that's kind of where we are now.
23:54
Speaker 2: He's had two botox procedures and it's actually still working.
24:01
Speaker 2: So there's that, But we definitely do we have rough
24:05
Speaker 2: days where I still have to irrigate him. We no
24:08
Speaker 2: longer do dilations, but irrigations, I mean, we just we
24:15
Speaker 2: just did it when last night, you know, it's just
24:17
Speaker 2: you kind of read your baby and see is he
24:21
Speaker 2: still descended? Has he gone to the bathroom today? What
24:24
Speaker 2: are we doing to combat those issues? And I guess
24:29
Speaker 2: I did skip a really big thing. At his last
24:35
Speaker 2: botox procedure. They prescribed senna, and that, honestly, I think
24:41
Speaker 2: is what's keeping us from going back right now to
24:44
Speaker 2: do another botox, because that just it just gets it going.
24:50
Speaker 2: So we do bot or photos, we do senna every day,
24:54
Speaker 2: and I think really that that's that's where we're at.
25:00
Speaker 2: We have been. We've had a g I team added
25:05
Speaker 2: to his like surgical team where we all work together
25:11
Speaker 2: to make sure everything's okay with him and just keep
25:14
Speaker 2: him going the course, and they think he's doing really well.
25:17
Speaker 2: Right now. We did just start solids, so that has
25:21
Speaker 2: thrown a curveball a little bit. But yeah, I don't
25:26
Speaker 2: know a lot.
25:29
Speaker 1: Yeah, you've packed an awful lot into seven months. If
25:33
Speaker 1: I may, I'll just sort of go back way back
25:37
Speaker 1: to sort of almost the beginning. You mentioned a condition
25:42
Speaker 1: that you had hypomesis.
25:47
Speaker 2: No, it's hyper emesis graviderum. That is extreme morning sickness.
25:56
Speaker 2: So I had it with my first pregnancy, that I
26:00
Speaker 2: had it with my second pregnancy, and it got worse.
26:02
Speaker 2: I had it with my third and it was even worse.
26:05
Speaker 2: So essentially I vomit while I'm pregnant between fifteen and
26:12
Speaker 2: thirty times a day. It, Yes, it is awful. It
26:18
Speaker 2: is accompanied with not always, but extreme weight loss in pregnancy,
26:26
Speaker 2: no appetite at all, water, I don't even I mean,
26:32
Speaker 2: I ended up this time. I had a zofran pump,
26:37
Speaker 2: I had zofran medication and then promethesine suppository, so I
26:44
Speaker 2: was just heavily medicated on anti nausea medication and even
26:50
Speaker 2: then it helped but then it caused another issue. I
26:56
Speaker 2: ended up having a bowel obstruction and yeah, pregnant and
27:00
Speaker 2: it was awful. So I think that's also why I'm
27:04
Speaker 2: so sensitive, not that I wouldn't be, but sensitive to
27:10
Speaker 2: the fact that not being able to go to the
27:12
Speaker 2: bathroom is an awful experience. I actually stopped taking the
27:19
Speaker 2: medication because the vomiting was less severe than not going
27:26
Speaker 2: to the bathroom. Like it. I didn't end up going
27:29
Speaker 2: to the bathroom for twenty nine days because of the medication. Yeah,
27:34
Speaker 2: and that's what caused my bowel obstruction. And that's like,
27:39
Speaker 2: I just I have so much sympathy for Emmett because
27:43
Speaker 2: I went twenty nine days, but he's dealing with something
27:48
Speaker 2: that's a lifelong you know, and I could at least
27:51
Speaker 2: advocate for myself and say, hey, I'm not feeling well.
27:55
Speaker 2: He's seven months old, you know, or one day old
27:58
Speaker 2: and can't tell me anything. I just have to kind
28:01
Speaker 2: of read between the lines.
28:03
Speaker 1: So wow, yeah, yeah, I because I'd never heard of
28:08
Speaker 1: that condition at all. But that's so interesting because from
28:12
Speaker 1: the from the name of it, I didn't think it
28:18
Speaker 1: would be anything to do with boo or anything. And
28:21
Speaker 1: I guess it's kind of became to do with Boo.
28:25
Speaker 1: But yeah, it's interesting that the two have a slight
28:30
Speaker 1: connection in them.
28:33
Speaker 2: Yes, and I think more so, you know, it was
28:39
Speaker 2: the medication that I was taking that caused it. But
28:44
Speaker 2: I have, even though I know that Hirshprungs is a congenital,
28:48
Speaker 2: you know, disease, I have played with the idea in
28:52
Speaker 2: my head, you know, trying to rationalize why he has Hirshprungs.
28:57
Speaker 2: I'm like, maybe it was the medication. Maybe it's because
29:00
Speaker 2: you know, I have my third baby with with hyper emesis,
29:07
Speaker 2: and like one of the things that can happen with babies,
29:11
Speaker 2: you know whose moms have hyperemesis is like extreme low
29:14
Speaker 2: birth or extremely low birth weight, you know, they I
29:21
Speaker 2: just that wasn't even a thing, and it was he's
29:24
Speaker 2: my biggest baby. Actually, he was born at seven pounds
29:28
Speaker 2: eight ounces, and I was like, oh my gosh, that's
29:30
Speaker 2: a huge baby because I had a five pound baby,
29:34
Speaker 2: and then I had his brother, who was seven pounds even,
29:38
Speaker 2: and I was like, oh my gosh, that's a big
29:39
Speaker 2: baby for me, you know. And it's all it's just,
29:46
Speaker 2: you know, anything I could do to rationalize because I
29:49
Speaker 2: in a way, I wanted to blame myself for giving
29:54
Speaker 2: it to him, because I'm just like, there's there's a reason,
29:56
Speaker 2: you know, there has to be a reason. It's not
29:58
Speaker 2: a one off. It can't be a one it's one off,
30:01
Speaker 2: you know, like I just so happened to, you know,
30:06
Speaker 2: create a baby where something just didn't quite you know,
30:10
Speaker 2: not everything matched up, and he ended up with hirshprungs.
30:13
Speaker 2: And so.
30:15
Speaker 1: I think, yeah, you've gone through what I would say
30:23
Speaker 1: all parents potentially who have a child with not just hirshprungs,
30:28
Speaker 1: lots of conditions. But I've had this conversation many times
30:32
Speaker 1: with parents where they say, what did I eat? What
30:35
Speaker 1: did I do? Did I not do enough exercise? Did
30:38
Speaker 1: I not you know, did I eat the wrong type
30:40
Speaker 1: of carrot? Or you know, you know you can know
30:45
Speaker 1: it's from every doctor and expert. I mean I'm not
30:50
Speaker 1: a doctor, but from every doctor an expert I've ever
30:53
Speaker 1: spoken to, it is, honestly, you know, incredibly bad bad luck.
30:59
Speaker 1: I don't know that's the right way, but.
31:00
Speaker 2: It's it's it's.
31:03
Speaker 1: It's that it's that kind of you know, it is
31:08
Speaker 1: obviously passed through through genes from what we know and
31:13
Speaker 1: things like that, but you know, there is absolutely nothing
31:16
Speaker 1: you did said eight didn't he you know, it's but
31:22
Speaker 1: it's but it's natural to go what did I do?
31:26
Speaker 1: Rather than just go, oh, well it's bad luck. Put
31:29
Speaker 1: it down to bad luck and move on. I don't
31:31
Speaker 1: think that's that's a normal. I think it's normal human
31:34
Speaker 1: emotion to go, let me retrace my steps.
31:37
Speaker 2: I guess exactly, like what can I how how can I?
31:41
Speaker 2: I need to rationalize it, like there's actually a way
31:45
Speaker 2: a reason that all this happened. And sometimes there's just
31:49
Speaker 2: there's not.
31:50
Speaker 1: There isn't and and it's and it's difficult because you're
31:54
Speaker 1: almost then kind of going, well, I can't really rationalize it,
31:59
Speaker 1: and and and that doesn't quite sit well with everybody.
32:04
Speaker 2: It's it doesn't. It really doesn't. Sometimes I still, like
32:07
Speaker 2: I said, I'm like, oh, it's my fault, like I
32:09
Speaker 2: had hyperremesis. And then and I'm in these the Facebook
32:13
Speaker 2: groups online for like UH families with UH you know,
32:18
Speaker 2: who have her sprungs or like a child who has them,
32:20
Speaker 2: and there's moms in there all the time, and they're
32:23
Speaker 2: just like okay, like help me, like I know I
32:26
Speaker 2: did something. And then everyone's like, listen, we know it's
32:30
Speaker 2: a congenital birth defect, so let's break congenital down. It's genetics,
32:34
Speaker 2: you know, like your genetics. It's that's what happened. And
32:38
Speaker 2: then we have not yet done genetic testing for my
32:43
Speaker 2: husband and I, but I am very interested to do
32:46
Speaker 2: exactly that. Like I just want to know, like, is
32:48
Speaker 2: it is there something that like did I carry something?
32:52
Speaker 2: Did he carry something? Like? You never know, but it
32:56
Speaker 2: was It's odd because it's our third child. So I'm like,
32:59
Speaker 2: did how did we skip? If that's the case. If
33:03
Speaker 2: it is, you know, how did we skip and then
33:04
Speaker 2: we got third baby?
33:07
Speaker 1: Yeah, it's it's a tricky one. I think from what
33:10
Speaker 1: because you had a conference with reach I think three
33:14
Speaker 1: weeks ago, four weeks ago where we had a doctor
33:18
Speaker 1: who talked about genetics. And obviously you take genes from
33:23
Speaker 1: the mother and the father, and there are these five
33:25
Speaker 1: genes that effectively you need in order to create hirsprungs.
33:30
Speaker 1: I guess YEA. And if they obviously, if you have
33:37
Speaker 1: all five and they're all they all need to be
33:40
Speaker 1: sort of passed on at once. But not every child
33:42
Speaker 1: will take every gene from every parent, so that's how
33:46
Speaker 1: I how it was sort of described to me. It's
33:49
Speaker 1: all manner of diagrams and whatnot, which makes it easier
33:52
Speaker 1: for me to understand. I'm far all more of a
33:54
Speaker 1: visual learner than anything else. But it's yeah, so that's
34:00
Speaker 1: how it can sort of because I thought that, you know,
34:01
Speaker 1: why why do I have it? And why do my
34:05
Speaker 1: three brothers not? You know? And it's but it's it's
34:11
Speaker 1: just luck. I think. I can't really or bad luck
34:15
Speaker 1: or good luck or whatever. I can't. I can't really
34:19
Speaker 1: rationalize it like that. But it's it's a tricky one
34:24
Speaker 1: because you want you want answers, and it's and I mean,
34:30
Speaker 1: there's still loads of testing going on and loads of
34:32
Speaker 1: research going on, and there's loads of people across the
34:35
Speaker 1: world doing for some fantastic work in trying to sort
34:38
Speaker 1: of nail it down and go, okay, can we find
34:41
Speaker 1: out you know, before you have a baby, do you
34:46
Speaker 1: carry these genes? Do you you know? Is there a possibility?
34:49
Speaker 1: But then I guess, in your situation, why would you
34:55
Speaker 1: ever test for Hirshbrungs. You've had two children without Hirshbrungs,
34:58
Speaker 1: You've never even heard of the condition. Why would it
35:01
Speaker 1: even cross your mind to even think.
35:04
Speaker 2: About that exactly. And I think because we did do
35:08
Speaker 2: genetic you know, you have your run of the mill
35:10
Speaker 2: genetic testing that you know they offer you. And of
35:14
Speaker 2: course I always say yeah because I am more so
35:17
Speaker 2: if something's quote unquote like wrong, I would more so
35:21
Speaker 2: want to be like mentally prepared and then have a
35:25
Speaker 2: you know, set plan to what we're going to do,
35:27
Speaker 2: you know, like how are we going to help you
35:30
Speaker 2: know with you know, not the issue, but whatever is
35:35
Speaker 2: going on. And I it kind of like chokes me
35:39
Speaker 2: out because I feel like I was cheated out of that.
35:44
Speaker 2: And but but I have to tell myself, like, it's
35:48
Speaker 2: just it's not something that everyone is going to experience.
35:52
Speaker 2: It's not something that is on everyone's radar. It was
35:56
Speaker 2: never on my radar, so I you know, you take
36:00
Speaker 2: it with the grain of salt. You know, It's just
36:03
Speaker 2: it is what it is. So I don't know it
36:06
Speaker 2: definitely it's it's hershprungs.
36:10
Speaker 1: Yeah, yeah, it's definitely an interesting topic and something that
36:14
Speaker 1: we'll run and run and run. And I know there's
36:17
Speaker 1: another another medical term you picked up on as well,
36:20
Speaker 1: which I hadn't. I mean, I've heard of hernias before,
36:24
Speaker 1: but I'd never heard of hernia's within hirshprungs. How how
36:28
Speaker 1: did that kind of come about?
36:30
Speaker 2: So they didn't exactly say what had caused it, but
36:37
Speaker 2: from what I know about hernias and especially so he
36:41
Speaker 2: had them like in Guenol, so it's his groin area,
36:46
Speaker 2: so one on each side, and it was just like
36:50
Speaker 2: that built up pressure so from the distension and everything.
36:55
Speaker 2: And then maybe he I don't know, maybe he was
36:59
Speaker 2: trying to go to the bathroom and I mean he
37:03
Speaker 2: didn't even have any tone to his rectum, so I
37:09
Speaker 2: really don't know. I mean, they were he just had
37:14
Speaker 2: two ingreenal hernias. Whenever they went in. She's like, we
37:17
Speaker 2: had them. And she actually called me. I forgot this.
37:20
Speaker 2: She called us mid procedure and she was like, hey,
37:23
Speaker 2: he also has hernias. And I said, fix him, Like
37:26
Speaker 2: I'm not going to put him, like subject him to
37:28
Speaker 2: two different procedures when you're already there, Like he's already
37:32
Speaker 2: he's already put you know, put under. Why would we ever,
37:37
Speaker 2: you know, subject him to two different procedures. So she
37:40
Speaker 2: fixed them while he was there and it was done.
37:42
Speaker 2: You know, also laparoscopically just like the pull through and
37:46
Speaker 2: he still has his little scars so at his growing area,
37:50
Speaker 2: and then the other ones for that they you know,
37:55
Speaker 2: did for his actual pull through, and they're just it's
37:59
Speaker 2: almost like it's just a little reminder every day when
38:02
Speaker 2: I change his diaper or whatever, and it doesn't sting
38:05
Speaker 2: as bad, you know, to see them anymore. But I
38:09
Speaker 2: will say I it was a trigger for quite you know,
38:15
Speaker 2: quite a while to just kind of you'd see, like him,
38:18
Speaker 2: he's doing so well, you know in theory, I'm still
38:21
Speaker 2: doing dilations and irrigations. But you know, they say, like, hey,
38:27
Speaker 2: that's good, like he's getting everything out, you know, And
38:31
Speaker 2: in my head, I'm like, no, what would be good
38:33
Speaker 2: is like he goes to the bathroom by himself and
38:35
Speaker 2: he doesn't experience like vomiting whenever he eats, or you know,
38:41
Speaker 2: it's weird. But I will say, like at Cooks, we
38:45
Speaker 2: have a phenomenal team. His main his surgeon is doctor Jones,
38:53
Speaker 2: and she is top of the line. And actually she
38:59
Speaker 2: just asked if her and her colleagues are actually writing
39:03
Speaker 2: a book on her sprungs. And that was like his
39:07
Speaker 2: last appointment, which was a couple of weeks ago, and
39:10
Speaker 2: she asked if she could include Emmett and his X
39:15
Speaker 2: rays in it, but she did say it's going to
39:18
Speaker 2: be a couple of years, which is totally understandable, but
39:21
Speaker 2: that is something that's going to be happening. So I
39:24
Speaker 2: hope it's okay. I shared that I'm sure it is.
39:27
Speaker 2: She's she's the sweetest, but that's I mean, I feel
39:33
Speaker 2: like any kind of help that parents can get and
39:39
Speaker 2: know that they're not alone, it is great. And I actually,
39:42
Speaker 2: I really do think that her book is more aimed
39:46
Speaker 2: at doctors, like at doctors for you know, to share
39:49
Speaker 2: like medical findings, but that.
39:55
Speaker 1: Kind of cool, that's fantastic. Well, when that comes out,
39:58
Speaker 1: make sure we let you let us know and we'll
40:00
Speaker 1: we'll have you back on again and we'll just we'll
40:03
Speaker 1: dissect the book and see what we know.
40:07
Speaker 2: Super cool, fantastic.
40:09
Speaker 1: Oh, that's absolutely brilliant and just what we've got sort
40:12
Speaker 1: of five minutes just before the end. Future wise, for Emmett,
40:18
Speaker 1: I know he's been through and you've been through and
40:20
Speaker 1: your husband's been through it so much in the last
40:24
Speaker 1: seven of the bit months and he's been through lots
40:27
Speaker 1: of procedures, and we talked about hernias and the pull through.
40:32
Speaker 1: And we know we've talked about a little bit about
40:34
Speaker 1: him now, but what do you see for him, sort
40:39
Speaker 1: of medically and non medically in the future.
40:45
Speaker 2: I am hoping, I really, that we can just keep
40:51
Speaker 2: him comfortable for the time being, you know, keep him
40:56
Speaker 2: going to the back and pooping on his own. And
40:59
Speaker 2: if that means botox procedures, that's great. If it means
41:02
Speaker 2: upping his sena or changing different medications, or honestly anything,
41:07
Speaker 2: I just hope that he can essentially just be like
41:12
Speaker 2: any other kid and when you know, issues arise or
41:17
Speaker 2: whatever that we have you know, like a good foundation
41:20
Speaker 2: and know the first steps to take and the teams
41:23
Speaker 2: to go to and the people to ask questions. I guess,
41:28
Speaker 2: like I was saying earlier, we're in those Facebook groups
41:30
Speaker 2: and honestly hearing other people's stories. Even though there are
41:34
Speaker 2: some that are scary and some kids backslide and then
41:37
Speaker 2: they have to have different procedures. There are a lot
41:40
Speaker 2: of kids who go on to lead just almost completely
41:45
Speaker 2: normal lives in the sense that they still play sports,
41:48
Speaker 2: they go to school, they do all these things obviously
41:51
Speaker 2: with you know, advocation and say like, hey, these situations
41:56
Speaker 2: may arise, here's how we, you know, deal with them,
42:00
Speaker 2: to his teachers or whatever. And if that's what it takes,
42:05
Speaker 2: then that's what it takes. And I just want him
42:07
Speaker 2: to know that he has a family who loves him
42:11
Speaker 2: and who's there to do absolutely anything we can to
42:16
Speaker 2: support him and make sure he does exactly what he
42:18
Speaker 2: wants to growing up and as an adult.
42:23
Speaker 1: So yeah, that sounds absolutely brilliant. Well, thank you so
42:28
Speaker 1: much for coming on sharing your story. As we said,
42:32
Speaker 1: you're only seven months after giving birth, so thank you.
42:36
Speaker 1: Obviously in the thick of absolutely everything at the moment,
42:39
Speaker 1: so thank you so so much for coming on. And
42:43
Speaker 1: that goes without saying, but I'll say it anyway. Wish you,
42:46
Speaker 1: Emmett husband the rest of your family all the very
42:49
Speaker 1: very best for the future and let us know how
42:52
Speaker 1: that book gets on.
42:53
Speaker 2: Oh, thank you so much for having me and I
42:55
Speaker 2: definitely will.
42:59
Speaker 1: Thank you for listening and being part of this growing community.
43:02
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
43:05
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43:07
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43:10
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast,
43:16
Speaker 1: See you next week.