Latest / Tom's Hirschsprung's Podcast / Episode 120 - With Ann-Marie Castille

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Episode 120 - With Ann-Marie Castille · 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 one hundred and
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Speaker 1: twenty of Tom's Hirshbrungs Podcast. I'm delighted to be joined
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Speaker 1: the sevening by Ari Andrie. Welcome to the podcast. Thank
0:53
Speaker 1: you for having me, Thank you so much for coming on,
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Speaker 1: and we are here to talk about your son's journey
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Speaker 1: with hirshprungs. This, I guess kind of with chatting a
1:06
Speaker 1: little bit sort of beforehand, and you sort of explain
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Speaker 1: maybe it's more of a kind of a textbook case
1:14
Speaker 1: of hirshprungs, if there is such a thing, obviously, but
1:19
Speaker 1: feel free to start from yeah, wherever you see fit.
1:23
Speaker 2: Okay, Yeah, I hope this This should be a good
1:25
Speaker 2: episode for any parents who just found out that their
1:29
Speaker 2: newborn baby has Hirshprung's disease. And you know, pretty much
1:33
Speaker 2: what the doctors told us to expect. That's what we
1:36
Speaker 2: have experienced so far. And our baby's almost six months old,
1:40
Speaker 2: so we still have a journey ahead of us. But
1:43
Speaker 2: there have been a couple of little hiccups here and there,
1:46
Speaker 2: but nothing that has been super traumatic or not you know, manageable.
1:51
Speaker 2: So I'll talk about all of that. But yeah, So
1:56
Speaker 2: my husband and I we have four children. Our oldest
2:00
Speaker 2: is seven. We have a seven year old son, We
2:04
Speaker 2: have a five year old daughter, we have a two
2:07
Speaker 2: almost three year old son, and then we have this baby, Christopher,
2:10
Speaker 2: who was born September twenty first, twenty twenty five. And
2:15
Speaker 2: we had no you know, hirsch Brong's issues or anything
2:18
Speaker 2: with any of our previous children. My pregnancy was wonderful,
2:24
Speaker 2: like even being a fourth pregnancy. I didn't have any complications,
2:28
Speaker 2: nothing unusual, you know, everything was as expected. I went
2:34
Speaker 2: into labor on my due date at like two thirty
2:38
Speaker 2: in the morning and had a very easy three hour labor.
2:45
Speaker 2: The baby was born, and the first day of his life,
2:48
Speaker 2: I mean, he was just perfect, he was beautiful, he
2:53
Speaker 2: was even breastfeeding normally. Just there were no no signs
2:57
Speaker 2: that anything you know, was wrong at all other than
3:00
Speaker 2: the fact that he just was not passing that maconium.
3:03
Speaker 2: He wasn't pooping, and all my others did have you know,
3:07
Speaker 2: their first maconium passed shortly after birth, and it just
3:10
Speaker 2: wasn't happening for him. Both my husband, my husband's mom,
3:17
Speaker 2: and my mom were both at our house with the
3:20
Speaker 2: other kids while we were at the hospital. They brought
3:23
Speaker 2: him to the hospital to uh, they brought our other
3:25
Speaker 2: kids to the hospital to see the baby, and you know,
3:28
Speaker 2: everybody was so excited. My older kids were super excited.
3:34
Speaker 2: And then right when he hit about twenty four hours old,
3:41
Speaker 2: like in the middle of that next night, he just
3:43
Speaker 2: stopped nursing. He stopped showing any interest in feeding, and
3:48
Speaker 2: I just thought, you know, oh, well, maybe he's just
3:50
Speaker 2: kind of lazy. He's tired from you know, the birth
3:53
Speaker 2: and whatnot. My first baby did have some issues, uh, breastfeeding,
4:00
Speaker 2: just beating the first few weeks of his life, so
4:02
Speaker 2: I was like, oh, maybe something similar is going on.
4:06
Speaker 2: Well during the night, I also kind of hurt a
4:09
Speaker 2: little bit of like spit up happening. But I mean,
4:12
Speaker 2: this is my fourth baby, so you know, I know,
4:14
Speaker 2: babies do spit up. I didn't think too much about it.
4:17
Speaker 2: But then in the morning, when the lights were all
4:19
Speaker 2: on and everything, we did notice that there was a
4:23
Speaker 2: patch of spit up on his blanket that did have
4:26
Speaker 2: a green tent. So that was another sign, you know,
4:30
Speaker 2: wasn't passing any maconium. And then he had this green
4:34
Speaker 2: a little bit of green spit up, and I think
4:37
Speaker 2: the nurses, you know, and the doctor started to look
4:41
Speaker 2: at him a little more closely. So I think the
4:46
Speaker 2: it was a nurse practitioner that came to see him
4:49
Speaker 2: that next day to do like the regular checkup, and
4:53
Speaker 2: she noticed that his tummy was a bit distended. I
4:57
Speaker 2: couldn't notice. I didn't notice that he you know, he
4:59
Speaker 2: looked pretty normal to me. But she pointed out, you know,
5:02
Speaker 2: she thought it was distended. She thought like the veins
5:04
Speaker 2: were kind of prominent on his tummy or something like that.
5:08
Speaker 2: But I mean, you know, I'm in my I'm in
5:11
Speaker 2: a slightly delirious state from like no sleep for two
5:14
Speaker 2: nights in a row, so so I might have just
5:17
Speaker 2: not you know, been in my right mind. She was concerned, so,
5:24
Speaker 2: you know, she tried to kind of keep me calm,
5:27
Speaker 2: but to also emphasize that she was concerned, and you know,
5:32
Speaker 2: it's to be honest, Like I was in denial that
5:36
Speaker 2: anything was wrong with my child. Like I had had
5:38
Speaker 2: three children, you know before, with no problems, and with
5:42
Speaker 2: this one, like I was like, this woman does not
5:45
Speaker 2: know what she's talking about, Peter, and and she did,
5:50
Speaker 2: you know, And now you know, I was not too
5:54
Speaker 2: happy with her at the time that now I have
5:56
Speaker 2: on my to do list write her a thank you
5:59
Speaker 2: note for being one of the people that you know,
6:01
Speaker 2: recognized the problem and escalated it, which you know, ultimately
6:05
Speaker 2: saved my child's life. So yeah, I was kind of
6:10
Speaker 2: in denial. And she called. I forget who she put
6:15
Speaker 2: me on the phone with, but it was a surgeon
6:17
Speaker 2: or something, and you know, they did an x ray
6:20
Speaker 2: and the x ray was concerning, and the surgeon was like, look,
6:23
Speaker 2: we need we need to see your baby at the
6:27
Speaker 2: children's hospital to see what's going on. And they were like,
6:31
Speaker 2: it could be no big deal, but it could also,
6:34
Speaker 2: you know, be something that requires surgery or whatnot. So
6:38
Speaker 2: then they were like, Okay, we're gonna helicopter the baby
6:40
Speaker 2: over to New Orleans, which is not far away. I
6:43
Speaker 2: think it was probably a twenty minute helicopter ride. It's
6:47
Speaker 2: about an hour and fifteen minutes of a drive. They
6:51
Speaker 2: were like, We're gonna helicopter the baby over and I'm
6:53
Speaker 2: just like, whoa this is? This is a lot that
6:58
Speaker 2: was also a thunderstorm, so they were like, we might
7:02
Speaker 2: have an ambulance come because of the thunderstorm. Then like
7:07
Speaker 2: the helicopter was gonna come, you know, they were trying
7:10
Speaker 2: to figure that out. So I'm like, this is terrifying,
7:15
Speaker 2: you know, just the fact that I'm putting my child
7:17
Speaker 2: on a helicopter and now there's a thunderstorm. And I
7:23
Speaker 2: was like, can we just put him in our car
7:25
Speaker 2: and just drive him to the hospital. It's only an
7:27
Speaker 2: hour or so away, and you know, they were like no,
7:32
Speaker 2: you know, you could get stuck in traffic. We have
7:34
Speaker 2: to continuously monitor him. He's on an ivy all this stuff.
7:37
Speaker 2: I'm just like, I am just in denial about the
7:40
Speaker 2: you know, seriousness of the situation. And they started him
7:46
Speaker 2: on antibiotics too, because they were worried it could be
7:51
Speaker 2: group B strap. A lot of women have like group
7:56
Speaker 2: B strap in their digestive system and the babies can
8:00
Speaker 2: you know, get it from the mom. So they were
8:02
Speaker 2: worried that that could have been it. And you know,
8:05
Speaker 2: even just the fact of putting my child on antibiotics
8:08
Speaker 2: that one day old was like horrible news for me
8:11
Speaker 2: at the time, and now I'm like, man, I wish
8:13
Speaker 2: it would have just been something that simple. So anyway, Yeah,
8:19
Speaker 2: so they helicoptered him over and my husband and I like,
8:23
Speaker 2: we don't even go home to get any additional things.
8:27
Speaker 2: We're like, we're just gonna go with what we have,
8:30
Speaker 2: and we're expecting, you know, we're just gonna go to
8:32
Speaker 2: the hospital. They're going to do some tests, and then
8:34
Speaker 2: we're gonna go home. Like we didn't think, you know,
8:37
Speaker 2: it was going to be as long as it was.
8:40
Speaker 2: But we drive to the hospital while he's being helicoptered
8:44
Speaker 2: over there, and it's the Manning Family Children's Hospital in
8:49
Speaker 2: New Orleans, Louisiana, which is a phenomenal hospital. I have
8:53
Speaker 2: wonderful things to say about all the doctors, all the nurses.
8:56
Speaker 2: It's just a really great place with a lot of resources.
9:00
Speaker 2: So it's a great place to go to. And so
9:07
Speaker 2: on our ride to the hospital, I am on chat GPT.
9:14
Speaker 2: My husband and I are like chat gpting like, this
9:16
Speaker 2: is what's going on, and funny enough, the first thing
9:20
Speaker 2: chat GPT said was Hirshfund's disease. Yeah, so it said
9:29
Speaker 2: a few other things, I think, like a sleepy intestine.
9:33
Speaker 2: I don't know if other families have heard that, but
9:37
Speaker 2: a sleepy intestine was like a second possible scenario where
9:42
Speaker 2: like the intestines just need more time to develop basically,
9:46
Speaker 2: But yeah, Hirshfrind's disease was the first thing chat GPT
9:49
Speaker 2: told us was likely. So then by the time we
9:54
Speaker 2: get to the hospital, the baby had made it there
9:57
Speaker 2: and they had already done i think an m R
10:00
Speaker 2: eye and a contrast enema and an X ray and
10:06
Speaker 2: everything looked fine at that point. He just still wasn't pooping.
10:13
Speaker 2: They did have a tube going down his mouth and
10:18
Speaker 2: to his belly, and there was green bial coming up
10:21
Speaker 2: like they were pumping it out of his tongue, and
10:25
Speaker 2: they might have had tubes a tube in his nose too,
10:28
Speaker 2: I don't really remember. And he was on an ivy
10:32
Speaker 2: and everything, so you know, of course that was really
10:36
Speaker 2: hard to see. But at that point they couldn't identify
10:40
Speaker 2: what the problem was. The scans and stuff were coming
10:43
Speaker 2: back as normal. So let's see what happened. So the
10:50
Speaker 2: next day he did poop a couple of times. But
10:54
Speaker 2: I think the maybe the contrast enema had kind of
10:59
Speaker 2: helped things. I think there were some procedures they were
11:01
Speaker 2: doing that kind of like helped something come out. And
11:10
Speaker 2: let's see, I wrote some notes with like a timeline
11:13
Speaker 2: looking at my deck.
11:14
Speaker 1: It's always it's always a lot easier because because must
11:18
Speaker 1: it must go by in such a blur, because everything
11:23
Speaker 1: happens so fast.
11:24
Speaker 2: I guess it does. It does. Yeah, So at that
11:30
Speaker 2: point they did no, Okay, so yeah, he he pooped
11:37
Speaker 2: a couple of times, but then stopped again and they
11:40
Speaker 2: were doing more X rays and it was showing like
11:42
Speaker 2: a lot of blockage in his large intestine and like
11:46
Speaker 2: a narrowing section of the large intestine. So the large
11:49
Speaker 2: intestine goes up across down and then down this way,
11:55
Speaker 2: and this whole bottom part and even kind of going
11:57
Speaker 2: up this way was like really narrow. And the funny
12:01
Speaker 2: thing is like on one corner, like the bottom corner,
12:05
Speaker 2: it looked like a ring, like it literally looked like
12:08
Speaker 2: a wedding ring was like right there, like a perfect ring.
12:13
Speaker 2: So our surgeon doctor Jessica Zagary, She's amazing. She and
12:20
Speaker 2: her husband are both pediatric surgeons, and they both looked
12:23
Speaker 2: at the X ray and they were like, this has
12:25
Speaker 2: to be Hirschworm's disease. I think was like the narrowing
12:29
Speaker 2: of the colon and everything. So she was like, our
12:32
Speaker 2: next step is to do a biopsy. So she did
12:36
Speaker 2: the biopsy and I think it only took one day.
12:41
Speaker 2: They told me it could be like two days, but
12:43
Speaker 2: I think they were able to get it expedited and
12:48
Speaker 2: and we got the news the next day. She had
12:52
Speaker 2: like a couple of reports come back through, and she
12:55
Speaker 2: came in and she was like, look, we're ninety five
12:58
Speaker 2: percent sure this is her Shrum's disease, and we're waiting
13:03
Speaker 2: on one final test which will tell us for absolutely
13:06
Speaker 2: sure if there were no ganglion cells, which would tell
13:10
Speaker 2: us you know that it is Hirsprum's disease. So at
13:15
Speaker 2: that point we were just like asking her questions about
13:17
Speaker 2: the disease and whatnot, and and I was just like,
13:22
Speaker 2: you know, we are gonna do We are going to
13:24
Speaker 2: take your advice, like you're the expert and we are
13:26
Speaker 2: the majorly sleep deprived parents right now, who you know,
13:30
Speaker 2: really shouldn't be making life or death decisions, So we
13:35
Speaker 2: are going to go with what you suggest. But I
13:38
Speaker 2: was like, I'm just curious, like what would happen if
13:41
Speaker 2: we didn't do anything about this, Like would the body
13:45
Speaker 2: naturally adapt or something. And she was like, you know,
13:49
Speaker 2: some children and this is this is kind of depressing.
13:52
Speaker 2: She was, you know, sad to say this, but she
13:54
Speaker 2: was like, some children learn that with their finger, they
13:57
Speaker 2: can like get themselves to to go to the bathroom,
14:01
Speaker 2: you know, and these are you know, usually children that
14:04
Speaker 2: they don't even they're not aware that they have this.
14:07
Speaker 2: Their parents are probably not aware that they have this.
14:10
Speaker 2: But she was like there are other cases where and
14:13
Speaker 2: she was like, this is your child's case, Like this
14:15
Speaker 2: baby would most likely die from this because you know,
14:20
Speaker 2: it's the blockage is so bad. And she said doctor
14:25
Speaker 2: Hirsprung's who figured out, you know, that this disease was
14:29
Speaker 2: what it is. He figured this out by studying dead babies.
14:34
Speaker 2: Like I know, it's sorry to be so more morbid,
14:36
Speaker 2: but but I just thought, I don't know, I was
14:40
Speaker 2: happy to know that history. So it was like, okay,
14:43
Speaker 2: you know, we've we've got to take care of this
14:46
Speaker 2: we don't want our child dealing with these issues for
14:48
Speaker 2: the rest of his life or definitely not dying, so
14:51
Speaker 2: we're going to figure out what to do. Well, she
14:54
Speaker 2: came back up four o'clock and she was like, it's
14:58
Speaker 2: Hirshprung's disease. You know, the biopsy is positive, no ganglion cells.
15:05
Speaker 2: And she was like, we think it's long segment hirshbrums
15:08
Speaker 2: because of how the X rays are showing there was
15:11
Speaker 2: a longer, you know part that was narrow in his polon.
15:16
Speaker 2: So you know, I'm terrified. I'm terrified that like his
15:20
Speaker 2: whole largent testine is affected. She says, she doesn't think
15:23
Speaker 2: it's his whole largent testine. She thinks it's just like
15:26
Speaker 2: that first part that goes up. And she recommended three surgeries.
15:32
Speaker 2: So the first surgery was the iliostomy, the second would
15:37
Speaker 2: be the pull through surgery, and the third would be
15:41
Speaker 2: the reversal of the iliostomy. And she said like, in
15:46
Speaker 2: eight weeks he could do the pull through surgery whenever
15:50
Speaker 2: he reaches about eleven pounds, and then eight weeks later
15:57
Speaker 2: after that heals, then we could have the ille reversed.
16:01
Speaker 2: So I'm just like a basket case. You know, I'm
16:07
Speaker 2: a basket case taking all this in. You know, I
16:11
Speaker 2: didn't even I was scared to even put my child
16:13
Speaker 2: on antibiotics, you know, And now I'm finding out that
16:16
Speaker 2: he has to be to go through three surgeries and
16:19
Speaker 2: he's a newborn baby, and you know, the illiostomy, like
16:25
Speaker 2: it's when you have no experience with that.
16:27
Speaker 3: It's you know, it's different. It's different.
16:30
Speaker 2: It is. Yeah, it takes them getting used to. But
16:34
Speaker 2: my husband and I we were just, you know, we
16:37
Speaker 2: were like, we want this to be done. We want
16:40
Speaker 2: him to be, you know, in a better, better shape.
16:43
Speaker 2: I want him to be breastfeeding. Like at this point,
16:47
Speaker 2: he had been on IVY fluids, you know, day two
16:52
Speaker 2: up until then. So I guess it was like three
16:55
Speaker 2: days he was on ivy fluids. It felt longer than that.
16:59
Speaker 2: I was just ready for everything to be, you know,
17:03
Speaker 2: somewhat normal, if I could at least feed him. And
17:09
Speaker 2: so we were like, we'll just do it, Like, let's
17:12
Speaker 2: just do the iliostomy. We want him to be a
17:14
Speaker 2: better condition. And she said, I recommend the iliostomy because
17:18
Speaker 2: then there are less complications and it prevents him from
17:24
Speaker 2: getting interclitis. Am I saying that right?
17:27
Speaker 1: Oh yeah, yeah, yeah, that's that's the thing. I think
17:31
Speaker 1: that people are now always warned of his entracolitis. I
17:35
Speaker 1: think that's one of the first things you kind of
17:38
Speaker 1: kind of told I think nowadays especially Yeah.
17:41
Speaker 2: Yeah. She was like, it is really like a nightmare
17:44
Speaker 2: if they have her shrungs and interoclitis. So she was like,
17:47
Speaker 2: I recommend doing this, like that's gonna prevent that from
17:51
Speaker 2: happening at least you know, initially, and and just the
17:56
Speaker 2: less complications. So we're like, you know, this is about him,
18:00
Speaker 2: this isn't about us. We are going to deal with it.
18:03
Speaker 2: So we're gonna go with your recommendation. And she was
18:06
Speaker 2: like it was four o'clock in the afternoon. She was like, well,
18:09
Speaker 2: if you want, I can call up anesthesia and we
18:11
Speaker 2: can just go do it right now. Wow.
18:15
Speaker 3: Wow.
18:15
Speaker 2: She was like, it's not an emergency, like you can
18:18
Speaker 2: sleep on it if you want to make the decision.
18:21
Speaker 2: But I'm like, you know what, let's do it. I
18:23
Speaker 2: want this, I want it over with. I want to
18:25
Speaker 2: move forward. So it was done within like an hour
18:29
Speaker 2: and a half, like he was back in his room.
18:32
Speaker 2: It was all done. Yeah, it was unbelievably fast. How
18:38
Speaker 2: they just pulled it together and got that first surgery done.
18:41
Speaker 2: Like we couldn't even hardly comprehend the whole surgery took
18:47
Speaker 2: thirty minutes. I mean we when he went into the
18:52
Speaker 2: operating room, we were told, like to go to a
18:55
Speaker 2: little waiting area. We went out there, We facetimed our
18:59
Speaker 2: kids kids who were back at home, had a little
19:03
Speaker 2: conversation with him, just to distract ourselves, you know, and
19:05
Speaker 2: we obviously missed our kids. And then we were like, okay,
19:10
Speaker 2: let's go down to the cafeteria and go ahead and eat.
19:14
Speaker 2: That way, we won't have to worry about that, you know,
19:16
Speaker 2: whenever he gets out of surgery. Well, we hadn't even
19:19
Speaker 2: picked up any food yet. Like, we walked down the
19:21
Speaker 2: stairs and the surgeon called and she was like, he
19:23
Speaker 2: did great, everything went perfectly fine, and he's about to
19:27
Speaker 2: be back in his room in the nick you and
19:29
Speaker 2: we're like, wow, okay, so so yeah, we go back
19:36
Speaker 2: to the room and you know, it's like you said,
19:40
Speaker 2: it's different. It's kind of jarring to see at first,
19:42
Speaker 2: you know, especially when your newborn baby never seen that before.
19:46
Speaker 2: I had no idea like what it would even look
19:48
Speaker 2: like or what to expect. But but you know, you
19:53
Speaker 2: just remember some time around then, like having this feeling
19:58
Speaker 2: come over me that you know, this is my purpose.
20:03
Speaker 2: My purpose is to get this baby to be successful. Sorry,
20:07
Speaker 2: I'm getting a little emotional.
20:09
Speaker 3: It's all good, it's all good.
20:13
Speaker 2: And my husband and I we were like, these are
20:16
Speaker 2: the cards that we've been dealt, and we are going
20:18
Speaker 2: to do the best job that we possibly can to
20:22
Speaker 2: get through this. And you know, we're just we're gonna
20:28
Speaker 2: rock this, like he's going to be fine. We're going
20:31
Speaker 2: to do everything that they recommend. And you know, it
20:35
Speaker 2: was like almost empowering that, like, you know, I get
20:40
Speaker 2: to take care of this baby and and just get
20:43
Speaker 2: him better. So anyway, sorry, it's it's a very emotion
20:54
Speaker 2: and I think I was also relieved to like know
20:56
Speaker 2: what it was that that was wrong with him and
21:01
Speaker 2: kind of like have a plan to get through it.
21:06
Speaker 2: So yeah, at that point, then by the next day,
21:12
Speaker 2: the green stuff that they had been pumping out of
21:16
Speaker 2: his stomach cleared everything, you know, was coming through. I
21:22
Speaker 2: did miss I missed a few points though that I
21:25
Speaker 2: wanted I wanted to make At some point, I guess
21:31
Speaker 2: maybe around day three, they the surgeon did a wash
21:36
Speaker 2: out and that was very effective. In fact, he pooped
21:40
Speaker 2: like nineteen times, Like we were counting how many times
21:43
Speaker 2: he pooped after the wash out, and it was like
21:45
Speaker 2: like it was a lot, so you know at that
21:49
Speaker 2: point where like nothing's wrong with him, like let's go home.
21:54
Speaker 2: But the biopsy then came back positive. So it was
21:58
Speaker 2: just a total whirlwind. And and I mean, I guess
22:03
Speaker 2: those washouts are effective. And she told us like we
22:06
Speaker 2: could have done the washouts, but she did say that
22:09
Speaker 2: she she had a hard time doing the wash out,
22:13
Speaker 2: like it wasn't just an easy wash out, and that's
22:16
Speaker 2: why she was still recommending the iliostomy. So anyway, I mean,
22:21
Speaker 2: I guess we made the right decision. I mean, he
22:24
Speaker 2: you know, he's he's okay. Now, speaking of Chris, do
22:27
Speaker 2: you want to take him in here. He's gonna make
22:33
Speaker 2: a little he can make a little appearance.
22:35
Speaker 3: Oh fantastic, look up from his yap.
22:39
Speaker 2: He has crazy hair, trying to make it up crazy,
22:42
Speaker 2: but he has my hair. He made not there is bad.
22:47
Speaker 3: Ah looks so healthy and happy.
22:51
Speaker 2: Oh he is a chunk. He is so so chunky.
22:56
Speaker 2: He's smile.
22:57
Speaker 3: I don't know him, Rehan mentioned, but.
23:01
Speaker 2: Early in the process he was measuring up like with
23:03
Speaker 2: the second percentile or something, and then yeah, I haven't
23:06
Speaker 2: gotten that yet, but.
23:09
Speaker 3: Yeah, then we had to give him some song.
23:10
Speaker 2: Op the camera. I'm like, I'm gonna go through it
23:14
Speaker 2: that I.
23:14
Speaker 3: Won't spoil it. Then no, no, no, it's all good.
23:17
Speaker 1: So very audio listeners make sure to check this out
23:20
Speaker 1: on YouTube if you want to see smiley.
23:22
Speaker 2: Baby, you're super super happy and super chunky.
23:26
Speaker 1: Now oh look it's so healthy happy.
23:30
Speaker 3: Yeah, oh fantastic.
23:33
Speaker 1: And he said about about five five and a half months,
23:37
Speaker 1: is that right, Yeah, five and a half months.
23:40
Speaker 2: Yeah, here be six months on the twenty first, so.
23:43
Speaker 1: It next fantastic. Oh goodbye, Christopher, Yeah he is right.
23:51
Speaker 3: Oh that's so so good to hear.
23:54
Speaker 1: Yeah, yeah, I mean, what what a what an incredible
23:59
Speaker 1: start to the story as well. I mean you said
24:02
Speaker 1: a lot of those parts that a lot of Hirshbrung's
24:07
Speaker 1: moms go through, well, Hirshbrong's parents that denial stage of well,
24:12
Speaker 1: I've had three children and they all haven't had a
24:16
Speaker 1: condition like this, so surely my fourth child isn't going
24:21
Speaker 1: to have this condition as well.
24:23
Speaker 3: And it's.
24:26
Speaker 1: It's a really I mean, genetics fascinates me just in general,
24:32
Speaker 1: but one thing that does sort of fascinate me is
24:35
Speaker 1: to why some children or the same family, same parents
24:40
Speaker 1: get hirshbrungs and some don't. I don't know if that
24:43
Speaker 1: if any of the doctors ever sort of explain that
24:47
Speaker 1: to you, or was it just a case of well,
24:48
Speaker 1: that's just the way it is.
24:51
Speaker 2: Yeah, I mean we were kind of just told it
24:53
Speaker 2: was like a random fluke, you know, something that had
24:56
Speaker 2: kind of gone wrong development wise in the first time
25:00
Speaker 2: sir of pregnancy. And I mean we were kind of
25:04
Speaker 2: talking about this earlier. We we thought like, there's no
25:08
Speaker 2: way it could be genetic because we don't know of
25:11
Speaker 2: this in our genetics on either side of our family.
25:15
Speaker 2: But then we found out from my mother in law
25:19
Speaker 2: that my husband's first cousin, who is sixty two years
25:23
Speaker 2: old currently, when he was a newborn baby, he was
25:28
Speaker 2: vomiting green bile and I think not passing maconium and
25:33
Speaker 2: they had to do an emergency surgery. And the way
25:38
Speaker 2: his mom described it, who she's in her upper eighties
25:42
Speaker 2: now and not in the best shape. So we you know,
25:46
Speaker 2: we don't have perfect information, But she said the doctors
25:49
Speaker 2: told her that his colon was pinched in a section
25:52
Speaker 2: like here to hear, and they had to remove about
25:55
Speaker 2: six inches of it. So that sounds like hirshprung's to me.
25:59
Speaker 2: But no one else in the family that we know
26:02
Speaker 2: of has anything like it. And we will never know
26:06
Speaker 2: if my husband's cousin actually has hirshbrums, but it surely
26:10
Speaker 2: sounds like it. So I don't know if maybe like
26:14
Speaker 2: his grandparents carried it, carried a gene that was just
26:19
Speaker 2: like silent and just you know, came up in these
26:22
Speaker 2: two cases in the family. We really will never know.
26:25
Speaker 2: The gi doctor told me that he thinks that's just
26:29
Speaker 2: like a random coincidence. But the surgeon kind of raised
26:32
Speaker 2: her eyebrows whenever we told her about that. Yeah, but
26:37
Speaker 2: we'll never really know. But the sixty two year old cousin,
26:40
Speaker 2: he has had no problems throughout his whole life. I mean,
26:42
Speaker 2: he just has a scar, you know, on his lower
26:45
Speaker 2: absomen and and he doesn't eat any vegetables. He has
26:49
Speaker 2: a terrible diet, he told us. But but he's never
26:53
Speaker 2: had any issues, So I don't know. It's kind that's
26:56
Speaker 2: kind of a history.
26:58
Speaker 3: That does.
26:59
Speaker 1: I mean it, that does sound like Hirschbrung's. Obviously, like
27:03
Speaker 1: you said, we'll never know, but you know, if you
27:06
Speaker 1: were to attribute to sort of where possibly Hirshbrungs may
27:11
Speaker 1: have come from, sounds about sounds about right. But I
27:16
Speaker 1: guess that's more. That's more leads than a lot of
27:19
Speaker 1: families that I speak to where child well, like me,
27:22
Speaker 1: I have Hirschbrung's. I have absolutely no Hirshbrung's in the
27:27
Speaker 1: family whatsoever. So it's but it does. Yeah, it does
27:31
Speaker 1: definitely definitely sound much like Hirshprung's. And you spoke about
27:38
Speaker 1: the hospital as well, and just how good they were
27:43
Speaker 1: sort of picking up because again, it's such a rare condition.
27:48
Speaker 1: Most people, in fact, nearly everybody we come across will
27:53
Speaker 1: never have heard of this condition before, and even a
27:55
Speaker 1: lot of hospitals struggle to maybe identify it.
28:00
Speaker 3: But I guess.
28:02
Speaker 1: Finding or having the hospital sort of have their suspicions
28:07
Speaker 1: so quickly must have been Yes, quite worrying, but also
28:13
Speaker 1: quite a relief as well.
28:15
Speaker 2: Mm hmm. Yeah. Our our surgeon, doctor Zagary, she does,
28:20
Speaker 2: I think, she says she has like twenty Hirschbrung's patients
28:23
Speaker 2: a year. I could that might not be accurate, but
28:26
Speaker 2: I want to say there were like the hospital had
28:29
Speaker 2: about twenty this past year something like that. And I
28:32
Speaker 2: mean this hospital, you know, New Orleans is the largest
28:35
Speaker 2: city in Louisiana, so this is one of the biggest
28:39
Speaker 2: children probably the biggest children's hospital in Louisiana. And I'm
28:44
Speaker 2: sure they get patients from surrounding states as well.
28:47
Speaker 1: So yeah, well that that could be right because the
28:50
Speaker 1: UK is about one hundred and fifty per year, and
28:53
Speaker 1: obviously America is a lot, lot, lot lot bigger than
28:57
Speaker 1: the UK. So yeah, that doesn't sound too are off
29:00
Speaker 1: to me. What doesn't far off at all.
29:03
Speaker 2: Yeah, And I think she's like the doctor at the
29:06
Speaker 2: hospital that deals with those any I guess any like
29:10
Speaker 2: g I type of surgery. That's her specialty. So I
29:14
Speaker 2: think we were we've been in good hands with her
29:17
Speaker 2: and the nurses and our g I doc, like they
29:21
Speaker 2: were all like doctor Zagary is the absolute best. Like
29:24
Speaker 2: she's fixed babies that we thought were unfixable. You know,
29:28
Speaker 2: you're in great hands with her, and we just love her,
29:31
Speaker 2: like she's like now, she's like our friend, you know,
29:34
Speaker 2: not just our doctor, but our friend.
29:36
Speaker 1: So that must be incredibly reassuring as well. I wouldn't imagine. Yeah,
29:42
Speaker 1: that's really really good to hear. And and just one
29:46
Speaker 1: one more point before we move on to the next part.
29:48
Speaker 1: The story you mentioned about the the helicopter and the
29:55
Speaker 1: ambulance and then the thunderstorm, and it sounded a.
29:58
Speaker 3: Little bit like a film.
30:00
Speaker 1: I was thinking about as you as you were going
30:02
Speaker 1: through that, I was thinking, this sounds a little bit
30:03
Speaker 1: like a horror film. Did it sort of feel a
30:07
Speaker 1: little bit like that at the time?
30:09
Speaker 2: It did? And I mean it also was happening so
30:13
Speaker 2: fast it was like hard to even process, you know,
30:17
Speaker 2: the severity of the situation. And like I said, I
30:21
Speaker 2: mean I was just like in denial. Like day one,
30:23
Speaker 2: this baby was perfect beautiful, and he still looked beautiful
30:28
Speaker 2: on day two, you know, and just he was starting
30:31
Speaker 2: to show these signs. So yeah, it was shocking. Yeah.
30:36
Speaker 1: Well, five and a half months on, he's still looking
30:38
Speaker 1: very well.
30:39
Speaker 2: Now.
30:39
Speaker 1: Oh yeah, though he must have been through it of
30:42
Speaker 1: a lot. But as we just said, he's looking he's
30:45
Speaker 1: looking very happy, very happy. I think he was slightly
30:49
Speaker 1: perplexed at the camera, but no, very happy.
30:52
Speaker 2: Indeed, he's super super happy. And super friendly too. I
30:56
Speaker 2: mean he loves being baby number four. Like the attention
31:00
Speaker 2: he gets from his siblings, he is just all about it.
31:03
Speaker 2: Like as soon as they're around him, he just lights up.
31:06
Speaker 2: And like they're a little rough with him at times,
31:08
Speaker 2: you know, more rougher than what I would like, but
31:12
Speaker 2: but in a playful way, and he's not bothered, Like
31:14
Speaker 2: he just rolls with it. Yeah, like like don't belly
31:20
Speaker 2: slam the baby.
31:21
Speaker 1: Yeah, Peanut's ideal having a fun lime probably not ideal.
31:27
Speaker 1: But the one thing that I have seen with you know,
31:31
Speaker 1: Hirshprung's people myself included that we have incredibly high pain tolerance.
31:39
Speaker 1: And I don't know whether that's because we go through
31:41
Speaker 1: a lot of surgeries when we're younger and we just
31:44
Speaker 1: sort of even if it's just the one surgery the
31:47
Speaker 1: ball through or whether it's it's multiple, but our pain
31:52
Speaker 1: tolerance and our resilience does generally seem to be a
31:58
Speaker 1: lot higher. So that's probably why he can still rough
32:00
Speaker 1: and tumble around and probably is all right with it.
32:03
Speaker 2: Yeah maybe, yeah. I mean so after the first surgery
32:09
Speaker 2: they gave him tile and all I guess like as
32:11
Speaker 2: he was coming out of anesthesia and then we never
32:14
Speaker 2: even asked for any more tile and all, like he
32:16
Speaker 2: was he wasn't showing any signs of distress as far
32:19
Speaker 2: as like a pain. Really, like the whole the whole
32:22
Speaker 2: time that we were in the NICKEU, which we were
32:24
Speaker 2: there for nine nights, he never really seemed like he
32:27
Speaker 2: was in pain or like in distress, Like I was
32:30
Speaker 2: the one that was in distress for sure, but I
32:33
Speaker 2: mean he was just I guess, you know, he was
32:35
Speaker 2: so little. He was in that sleepy phase where you know,
32:38
Speaker 2: at that age the first two weeks of life, babies
32:41
Speaker 2: just sleep like all the time. But you know, even
32:45
Speaker 2: the days like he wasn't eating, he was just on
32:47
Speaker 2: ivy fluids. He was fine, shockingly like that. That was
32:53
Speaker 2: a happy surprise that he was not. He did not
32:56
Speaker 2: seem miserable at all. And we didn't even hardly give
32:58
Speaker 2: him any pain medication other than like one dose of
33:01
Speaker 2: title and all.
33:02
Speaker 1: Wow, that's yeah, that's so good to hear. And if
33:06
Speaker 1: it's if it's anything, if it's anything like other people
33:09
Speaker 1: I've met, that sort of pain resilience will well carry
33:13
Speaker 1: on and carry on and garry on through and hopefully
33:17
Speaker 1: hopefully sometimes it's not ideal because we're in pain, but
33:21
Speaker 1: we don't quite realize how much pain we're in, but
33:23
Speaker 1: we just sort of put up with it because it's
33:25
Speaker 1: what we've always done. But so I don't know whether
33:28
Speaker 1: Christopher's going to be like that. But but yeah, no,
33:31
Speaker 1: that sounds but that sounds sounds really good. And I
33:36
Speaker 1: know your your husband mentioned something that you wanted to
33:40
Speaker 1: get onto.
33:42
Speaker 2: Oh yeah, well let me continue kind of going through
33:46
Speaker 2: the story. So the day after the iliostomy, the green
33:52
Speaker 2: stuff cleared and you know, everything was processing. He wasn't
33:55
Speaker 2: even like spitting anything up at all. Everything was just
33:59
Speaker 2: going through smooth. So they were like, okay, you can
34:01
Speaker 2: go ahead and start breastfeeding. And I'm like, I don't
34:04
Speaker 2: know what this is going to be like because the
34:06
Speaker 2: past few days, like he hasn't eaten, you know, but
34:10
Speaker 2: I mean immediately, like he latched without any problems and
34:14
Speaker 2: he just breastfed like a totally normal baby. There were
34:18
Speaker 2: no issues at all. Now the days that he wasn't eating,
34:23
Speaker 2: I had to religiously pump. I'm sorry this might be
34:27
Speaker 2: too much information. Go ahead, yeah, for the moms listening
34:31
Speaker 2: to this, like I did religiously pump pretty much every
34:34
Speaker 2: three hours throughout the day. And I would even get
34:36
Speaker 2: up in the middle of the night and pump and
34:39
Speaker 2: then get up again at like the crack of dawn
34:42
Speaker 2: to pump to keep my supply up and everything. And
34:44
Speaker 2: that was worth it because, like I said, as soon
34:47
Speaker 2: as he was allowed to eat, like he was just
34:49
Speaker 2: eating a lot. And my other three children, I breastfed
34:56
Speaker 2: them each for a year, so I have a lot
34:58
Speaker 2: of experience with that and just everything was totally normal,
35:02
Speaker 2: Like I did not suspect any problems at all. So yeah,
35:08
Speaker 2: so then they wanted us to stay a few more
35:11
Speaker 2: nights just to make sure his weight was fine and
35:14
Speaker 2: everything was continuing to be fine, and so that's what
35:19
Speaker 2: we did. And his weight was not really picking up
35:21
Speaker 2: too much, but because he was like breastfeeding well and
35:26
Speaker 2: his output was good from his stoma, they you know,
35:31
Speaker 2: were gonna discharge us. Uh. So we were in the
35:34
Speaker 2: NICKU I think a total of nine nights. We got
35:38
Speaker 2: there on September twenty second, and then we left on
35:40
Speaker 2: October first. To come home. That time was obviously very hard,
35:50
Speaker 2: especially you know, we had our three other small children
35:54
Speaker 2: at home and we had never been away from our
35:56
Speaker 2: children that long. In fact, like halfway through our stay,
36:04
Speaker 2: we had our moms bring our kids to the hospital
36:06
Speaker 2: to see us and to see the baby. And and
36:10
Speaker 2: I remember like when they walked in, I was just like,
36:12
Speaker 2: they are so beautiful, Like I you know, I hadn't
36:17
Speaker 2: seen them in several days and that was just really hard.
36:21
Speaker 3: Yeah.
36:21
Speaker 2: So yeah, and they wanted to see the baby. We
36:26
Speaker 2: were allowed to bring the she was four at the time,
36:29
Speaker 2: and then my oldest was six at the time. They
36:33
Speaker 2: were allowed to go see the baby. So we had them,
36:35
Speaker 2: you know, wash their arms and everything everything that they
36:38
Speaker 2: had to do to get into the niku. They saw
36:40
Speaker 2: the baby and they were fine. They didn't seem like
36:44
Speaker 2: disturbed by you know, any beeping or tubes or anything.
36:48
Speaker 2: They were fine. But their small children and you know,
36:50
Speaker 2: they got a little rambunctious after just a few minutes.
36:53
Speaker 2: So we left, and the Automan Zoo is pretty much
36:57
Speaker 2: across the street from the hospital, and we just felt
37:01
Speaker 2: like we really needed to spend time with our kids.
37:03
Speaker 2: So we did go to the zoo for like, I
37:06
Speaker 2: don't know, I guess an hour and a half. It
37:08
Speaker 2: wasn't that long, but we were like, we just have
37:10
Speaker 2: to do something to feel normal with our kids. And
37:14
Speaker 2: I was like, I never ever would have thought that
37:16
Speaker 2: I would go to the zoo six days postpartum and
37:19
Speaker 2: without my baby, but I mean it just it was
37:23
Speaker 2: the right thing to do for our other children. And
37:26
Speaker 2: you know, in New Orleans people likes to drink. Had
37:30
Speaker 2: they saw beer at the zoo and my husband was like,
37:34
Speaker 2: do you want a beer? And like that is the
37:37
Speaker 2: best decision, that is absolutely the smartest thing. I need
37:41
Speaker 2: a beer. So we both got a beer, a canned beer,
37:45
Speaker 2: walking through the zoo, and that was the best beer
37:47
Speaker 2: of my life. So yeah, So then you know, we
37:58
Speaker 2: tell the kids bye, and my six year old son
38:01
Speaker 2: was very emotional, you know that we were not going
38:04
Speaker 2: home with him, but you know, we just kind of
38:06
Speaker 2: had to to keep it together. And our moms were
38:10
Speaker 2: like rock stars taking care of our kids all this
38:13
Speaker 2: time and getting them to school and everything. So we
38:17
Speaker 2: go back to the hospital and let's see, so I
38:22
Speaker 2: think that was a Saturday. The next few days it
38:25
Speaker 2: was really just like monitoring him to make sure he
38:28
Speaker 2: was everything was going okay with the stoma and everything.
38:31
Speaker 2: And at first, like I just let the nurses handle
38:35
Speaker 2: all of the ostomy care because I just wasn't emotionally
38:38
Speaker 2: ready for it. But then, like I guess Tuesday, Monday
38:43
Speaker 2: or Tuesday, I was like, Okay, I've got to learn
38:47
Speaker 2: how to do this because we're we need to go home.
38:50
Speaker 2: I want to go home, and obviously I have to
38:51
Speaker 2: be able to do this. So then they started like
38:54
Speaker 2: training me, and it was a little traumatic at first
39:00
Speaker 2: because like he would just scream, even though what we
39:03
Speaker 2: were doing shouldn't necessarily have caused him any pain. It's
39:06
Speaker 2: just newborn babies when you're messing with them, you know,
39:08
Speaker 2: they they're just just screaming. And then also it's very sensitive,
39:13
Speaker 2: like the skin is very sensitive, so it like bleeds
39:18
Speaker 2: really easily, and the nurses might have been just a
39:23
Speaker 2: little rougher than what I would have been because they
39:27
Speaker 2: were trying to be quick, you know, So it was
39:30
Speaker 2: like bleeding a good bit. I remember that and just
39:32
Speaker 2: being like kind of shocked, but like I just mustered
39:37
Speaker 2: up the courage, like this is what I have to do.
39:38
Speaker 2: I'm gonna learn how to do this, and they gave me,
39:42
Speaker 2: you know, instructions and a ton of supplies, and then
39:45
Speaker 2: when we went home, I was feeling pretty good about it.
39:49
Speaker 2: So that was a learning experience. But I mean two
39:53
Speaker 2: weeks later, like I was an ostome care expert and
39:58
Speaker 2: like I would be happy to give any tip to
40:00
Speaker 2: anybody that needs, you know, advice on doing that for
40:04
Speaker 2: a newborn baby, because I really felt like I became
40:08
Speaker 2: an expert. And the Facebook Hirshprung's group helped a lot
40:11
Speaker 2: because I got some good tips from people on there
40:14
Speaker 2: about like the supplies to use and other you know,
40:17
Speaker 2: random tips. Now kind of getting to what my husband
40:21
Speaker 2: was talking about, I was monitoring his weight very closely,
40:25
Speaker 2: so every week I was taking him at least once
40:28
Speaker 2: a week to the pediatrician's office to do a weight
40:31
Speaker 2: check because I was anxious for him to have the
40:33
Speaker 2: pull through surgery and he needed to reach like eleven
40:36
Speaker 2: pounds I think five kilos something like that. So I
40:42
Speaker 2: was we were weighing him every week, and he just
40:45
Speaker 2: wasn't gaining weight, Like he was just gaining like a
40:48
Speaker 2: couple of ounces a week and it just should have
40:51
Speaker 2: been a lot more. And it was week after week
40:53
Speaker 2: he was just gaining the tiniest bit and and you know,
40:58
Speaker 2: the pediatrician was like, are you are you sure breastfeeding
41:01
Speaker 2: is going well, like maybe you need to supplement with formula,
41:04
Speaker 2: And I'm like, breastfeeding is going phenomenally, Like I know
41:08
Speaker 2: he's getting milk, like I just know it. I've done
41:11
Speaker 2: this for three years. He's doing great, and like he's
41:15
Speaker 2: having a lot of output, he's having a lot of
41:18
Speaker 2: wet diapers. He's just not gaining weight. Like So then
41:22
Speaker 2: I started kind of researching that and I probably posted
41:26
Speaker 2: on the Facebook group again and learned that it could
41:29
Speaker 2: be a sodium issue. So like the large intestine has
41:34
Speaker 2: a purpose, it absorbs water, and I guess if that's
41:39
Speaker 2: not happening, sodium will help your body absorb the water
41:44
Speaker 2: that it needs or you know, like an electrolyte get
41:48
Speaker 2: the electrolytes that it needs. So I read that I
41:52
Speaker 2: brought that up to the pediatrician. At this point, he
41:56
Speaker 2: should have been at the weight Like this was like
41:59
Speaker 2: eight weeks later, so he should have been having his
42:01
Speaker 2: full th surgery and his weight still had not picked up.
42:05
Speaker 2: She was and he he had reached the third percentile. Now,
42:08
Speaker 2: when he was born, he was probably above average, who
42:12
Speaker 2: was a healthy sized baby, and so he had just
42:16
Speaker 2: dropped down to the third percentile in his weight, and
42:22
Speaker 2: the pediatrician was like, you need to see the GI doctor.
42:25
Speaker 2: And then I told the surgeon and the surgeon was like, yeah,
42:27
Speaker 2: I agree, I'm going to refer you to the GI
42:30
Speaker 2: doctor over here, doctor Michael Carver. And I was like great.
42:35
Speaker 2: So I get on the phone immediately and I like
42:37
Speaker 2: call the children's hospital and like I'd need an appointment
42:40
Speaker 2: with doctor Carver asap. And they're like, oh, okay, his
42:43
Speaker 2: next availability is in like three months. I'm like no,
42:48
Speaker 2: I'm like, this is urgent, my bait, my infant needs
42:51
Speaker 2: to have surgery. I need to see him as soon
42:54
Speaker 2: as possible. And they were like, can you see another doctor.
42:57
Speaker 2: I'm like, I guess, but you know this is doctor
43:00
Speaker 2: Zagary referred us to. And they were like, okay, let
43:05
Speaker 2: us look, we'll call you back and get something scheduled.
43:09
Speaker 2: So then, like I don't know, an hour or two later,
43:12
Speaker 2: they called me and they were like, we had a
43:13
Speaker 2: patient cancelation for Friday. Can you come. I'm like absolutely.
43:19
Speaker 2: So it took a little pushing, but I was able
43:22
Speaker 2: to see the GI doctor that week. And when I
43:26
Speaker 2: go to see the GI doctor, he immediately knew. He
43:29
Speaker 2: was like he needs a salt supplement. He said, every
43:32
Speaker 2: baby with an iliostomy needs a sodium supplement. So I
43:37
Speaker 2: wish I would have been told that at the beginning,
43:42
Speaker 2: but yeah, it is what it is. So he said,
43:46
Speaker 2: just take an eighth of a teaspoon of table salt
43:52
Speaker 2: and somehow get that in the baby, like mix it
43:55
Speaker 2: with breast milk, or mix it with a little bit
43:57
Speaker 2: of water. But you just want to get that into
44:01
Speaker 2: the baby every day. So I'm like, okay, easy, no problem. Great.
44:06
Speaker 2: He also did a urine analysis and that confirmed very
44:09
Speaker 2: low sodium, so that was why he wasn't gaining weight.
44:13
Speaker 2: So immediately, you know, I start the sodium supplement. And
44:17
Speaker 2: it was more difficult than it sounds because it's disgusting
44:22
Speaker 2: the baby. I was like shooting salt into the baby's mouth.
44:25
Speaker 2: You know, he wasn't a fan of it. But I
44:28
Speaker 2: figured out the best thing that just the thing that
44:31
Speaker 2: worked out the best was to do a tiny bit
44:34
Speaker 2: of water and just make it like super condensed. That way,
44:37
Speaker 2: I could just do like two or three little squirts
44:40
Speaker 2: in the back of his throat, like you know, three
44:43
Speaker 2: times a day, and it just kind of like rip
44:46
Speaker 2: off the band aid. You know, rather than like trying
44:49
Speaker 2: to mix it with a lot of water or a
44:51
Speaker 2: lot of breast milk. Either way, he hated it. So
44:55
Speaker 2: the best approach for us was just a little condensed amount.
44:59
Speaker 2: His weight immediately picked up, like I mean, he was
45:03
Speaker 2: putting on weight like crazy as soon as we started
45:05
Speaker 2: that salt supplement, and we were able to schedule the
45:08
Speaker 2: pull through surgery very soon after. So I think he
45:13
Speaker 2: ended up having a pull through surgery. I think it
45:15
Speaker 2: was December twelve, a little bit after, you know, a
45:19
Speaker 2: little after what we had originally wanted, but he had
45:23
Speaker 2: it for stop me, if you have any like questions,
45:28
Speaker 2: you're carry on, okay. So so we scheduled that surgery.
45:33
Speaker 2: We had to be at the hospital at like five
45:36
Speaker 2: thirty in the morning, and the hospital, like I said,
45:40
Speaker 2: it's like an hour and fifteen minutes away, So I
45:43
Speaker 2: was allowed to breastfeed him up until I think four am.
45:48
Speaker 2: The surgery was technically going to take place at eight
45:51
Speaker 2: I want to say, I think it was three hours
45:53
Speaker 2: that he couldn't eat anything, so I fed him when
45:56
Speaker 2: he got up at like three thirty in the morning.
45:59
Speaker 2: That was I woke up that day three thirty in
46:01
Speaker 2: the morning, I fed him and we booked it to
46:03
Speaker 2: the children's hospital. He had his surgery and it turned
46:10
Speaker 2: out to not be long segment Hirshprung's disease. So she
46:16
Speaker 2: she told us it wasn't considered short segment, but it
46:19
Speaker 2: also wasn't considered long segment. In her opinion, she said,
46:23
Speaker 2: it was just kind of like normal, normal hirsprungs.
46:28
Speaker 3: I didn't know that was such a thing.
46:31
Speaker 2: Yeah, I don't know, Like she was, like, it wasn't short,
46:35
Speaker 2: like a very small amount, but it wasn't a you know,
46:38
Speaker 2: long segment.
46:40
Speaker 3: I don't know, but.
46:44
Speaker 2: I guess there's no is there like a clear length
46:48
Speaker 2: that makes something short versus long?
46:51
Speaker 1: You know, I'm not too sure, but I think, I mean,
46:56
Speaker 1: it goes from super short and then they short, and
47:00
Speaker 1: then there's long, and then it goes upside total colonic,
47:03
Speaker 1: total ganglinosish. Yeah, but yeah, I didn't know there was
47:07
Speaker 1: one between. I mean, I guess there probably should be
47:10
Speaker 1: one between short and long, but I just I don't
47:13
Speaker 1: know if it has an actual medical name.
47:16
Speaker 2: Yeah, yeah, I guess that's the thing. It's like, there's
47:19
Speaker 2: not really a cutoff that makes something short versus long.
47:22
Speaker 2: So it was kind of I guess in the middle,
47:25
Speaker 2: but it sounds like it was the sigmoid colon, so
47:28
Speaker 2: that's the part that kind of goes across the bottom.
47:31
Speaker 2: So then going up here, I think that part ended
47:34
Speaker 2: up being fine. And then all that was fine, and
47:36
Speaker 2: all that, you know, that whole part that goes across
47:38
Speaker 2: the top was fine. It was kind of that bottom,
47:41
Speaker 2: like I guess, about six inches that she had to remove.
47:45
Speaker 2: She also said they were adhesions, which a lot of
47:48
Speaker 2: babies have. That also made it difficult for his bowels
47:51
Speaker 2: to pass, so that was another reason why he was
47:54
Speaker 2: like so backed up. So let's see. The recovery from
48:00
Speaker 2: that surgery was not bad at all because I was breastfeeding.
48:04
Speaker 2: I was able to feed him as soon as he
48:06
Speaker 2: wanted to, and he also was did not really show
48:12
Speaker 2: signs of pain, and it might be because I was
48:14
Speaker 2: able to nurse him. They gave him that one dose
48:19
Speaker 2: of til and all, and I don't think he had
48:20
Speaker 2: any other tilnol or anything following that surgery. He was
48:24
Speaker 2: fine the next day even like he was doing so
48:30
Speaker 2: well they were going to keep us for two nights,
48:32
Speaker 2: but they were like, you know, you can go ahead.
48:34
Speaker 2: And go home because he's doing so well, just stay
48:37
Speaker 2: in contact with us. Well. I ended up with the
48:42
Speaker 2: worst migraine of my life, to the point where I
48:45
Speaker 2: was like vomiting and it was so bad, like we
48:50
Speaker 2: were about to be discharged. But I was in such
48:52
Speaker 2: bad condition that I went to the er at the
48:55
Speaker 2: children's hospital and they gave me like this migraine cocktails
48:59
Speaker 2: what they call it. Like I have not been that
49:03
Speaker 2: thick in ages, but I think just like the being
49:08
Speaker 2: up at three point thirty in the morning to go
49:10
Speaker 2: to the hospital, the sleeping in the hospital even just
49:14
Speaker 2: that one night, like it was two really bad nights
49:16
Speaker 2: of sleep, and I just something something went wrong. So
49:20
Speaker 2: I was in bad shape. But but the baby was
49:24
Speaker 2: doing great. Uh. So we went home and yeah, I uh,
49:33
Speaker 2: I was continuing the salt supplement, but everything was pretty
49:38
Speaker 2: much fine. I mean, his body was just healing, you know,
49:41
Speaker 2: and he still had his iliostomy, so it wasn't really
49:44
Speaker 2: anything new. We did notice stuff started to come out,
49:48
Speaker 2: you know, and it was like a light brown like gel,
49:54
Speaker 2: and I think it was just like body fluids, like
49:56
Speaker 2: his his intestines were working, so like just little body
50:00
Speaker 2: fluids and stuff were getting pushed out, so that was
50:03
Speaker 2: kind of surprising. And yeah, so then we go back
50:09
Speaker 2: for his check up on New Year's Eve, I think,
50:13
Speaker 2: and the surgeon was like, he looks really great, Like
50:15
Speaker 2: we you know, we can schedule the iliostomy reversal January twentieth.
50:21
Speaker 2: So it was actually only six weeks later that we
50:23
Speaker 2: did the ilostomy reversal, and so we go back to
50:28
Speaker 2: the hospital for that, and that we did have to
50:33
Speaker 2: stay two nights, but the surgery was later in the morning,
50:36
Speaker 2: so when I got to the hospital, I was a
50:38
Speaker 2: little more fresh, but I had you know, paint neds
50:42
Speaker 2: on me just in case I came down with the
50:43
Speaker 2: migraine again. But he went through that surgery really quickly,
50:50
Speaker 2: didn't take long. And again it was only like three
50:53
Speaker 2: hours before the surgery that he couldn't breastfeed, so that
50:57
Speaker 2: really wasn't a bad like fasting Peero. Well, then afterwards
51:02
Speaker 2: they did want me to kind of hold off on
51:04
Speaker 2: breastfeeding him for a while so everything can kind of
51:08
Speaker 2: I guess heal or whatnot following the surgery. After that surgery,
51:15
Speaker 2: we were talking about pain. We did have to give
51:18
Speaker 2: him more tile and all. Following that surgery. I don't
51:21
Speaker 2: know if it was just the fact that like more
51:25
Speaker 2: was done to his skin, because you know, his skin
51:27
Speaker 2: had to be stitched back together. I'm not sure what
51:30
Speaker 2: it was, but the iliostomy reversal. He definitely seemed to
51:33
Speaker 2: be in a little more pain after that one, but
51:35
Speaker 2: it was nothing that Tyl and All didn't take care of.
51:37
Speaker 2: Like we did tile and all every four hours for
51:39
Speaker 2: about twenty four hours, and that was it. Like we
51:44
Speaker 2: just would notice, like when the tiler and all was
51:45
Speaker 2: wearing off, he would just get fussy, so we'd ask
51:48
Speaker 2: for another dose. But that was it, just til and
51:51
Speaker 2: all for twenty four hours, and then he was fine
51:55
Speaker 2: that evening. They still didn't want me to feed him
51:58
Speaker 2: quite yet, and he did get cranky, but I would
52:02
Speaker 2: just like dip his pacifier in breast milk and just
52:04
Speaker 2: keep giving that to him. I was allowed to do that,
52:08
Speaker 2: and that kind of helped a little bit. And then
52:12
Speaker 2: in the middle of the night they allowed me to
52:14
Speaker 2: start breastfeeding him for a few minutes, like three or
52:17
Speaker 2: four minutes every couple of hours, so he was really
52:22
Speaker 2: only without like a full feed for not even twenty
52:27
Speaker 2: four hours. I mean, I guess about eighteen hours something
52:32
Speaker 2: like that, so it wasn't too bad. And then like
52:37
Speaker 2: he did, he did struggle to get back to his
52:39
Speaker 2: normal feeding. For those next few days, he just like
52:43
Speaker 2: wasn't quite as interested as in feeding. I guess, just
52:47
Speaker 2: as his little system was healing. And you know, breastfeeding
52:51
Speaker 2: like that does give challenges to the breastfeeding mom. So
52:56
Speaker 2: I had to do some pumping and stuff. But after
52:59
Speaker 2: a few days, like he was back to his normal
53:01
Speaker 2: self and eating normally and everything was passing through. I
53:06
Speaker 2: had been warned about diaper rash. You know, they'll get
53:09
Speaker 2: terrible diaper rashes after these surgeries. Well, the few weeks
53:14
Speaker 2: before the surgery, my surgeon had me, this is very weird.
53:19
Speaker 2: She had me take hoop from his bag and put
53:24
Speaker 2: it on his behind for like a couple of minutes
53:26
Speaker 2: each day. So I did that, and I don't know
53:30
Speaker 2: if that helped, but we never had issues really when
53:33
Speaker 2: diaper rash following the iliostomy reversal. I used aquafor and
53:42
Speaker 2: if when he did kind of start to get a
53:44
Speaker 2: little bit of a rash, I would bathe his behind
53:47
Speaker 2: in the sink with a baby soap. Often, like every
53:52
Speaker 2: time he pooped throughout the day. I would clean it
53:55
Speaker 2: in the sink until the rash was completely gone, and
53:58
Speaker 2: I would load him up with aquafor and with with
54:01
Speaker 2: that process. Like he didn't he really didn't have a
54:05
Speaker 2: problem with diaper rash at all, Like it was very minor.
54:10
Speaker 2: He also, I was worried he'd be up like pooping
54:13
Speaker 2: all night long. That was not the case. You know,
54:18
Speaker 2: like he'll he'll poop a lot during the day, but
54:20
Speaker 2: at night, like it's pretty rare. So yeah, I can't
54:26
Speaker 2: say that we've really had major issues. I mean he's
54:30
Speaker 2: super happy through all of it. He's been super happy,
54:33
Speaker 2: Like starting at like five weeks old, he was smiling
54:36
Speaker 2: all the time. He his intestines are loud, like they
54:41
Speaker 2: make a loud gurgling sound often. I don't know if
54:44
Speaker 2: that's normal, But the surgeon doesn't seem too it is.
54:48
Speaker 2: You've heard about okay mine still doing okay. Yeah. I
54:53
Speaker 2: mentioned it to the surgeon and she was just like, well,
54:55
Speaker 2: if he's if everything else is fine, and he doesn't
54:57
Speaker 2: seem bothered, like she's not worried about it. So yeah,
55:02
Speaker 2: I mean he doesn't seem to be bothered by it.
55:04
Speaker 2: It's just you can hear his intestines from like across
55:07
Speaker 2: the room. But I guess it's better that than things
55:11
Speaker 2: not moving through exactly that the other thing, how are
55:18
Speaker 2: we doing on time? Oh yeah, okay, because I did
55:23
Speaker 2: want to talk, Like I was so concerned about my children,
55:25
Speaker 2: my other children, and like how they were going to
55:28
Speaker 2: react to the stoma. And at first, when we came
55:35
Speaker 2: home from the hospital, you know, right after his first iliostomy,
55:41
Speaker 2: I hid it from my kids because I just was
55:43
Speaker 2: like I needed to get used to it. I wasn't
55:45
Speaker 2: ready to tell my four and six year old what
55:48
Speaker 2: that was. I just was not mentally prepared for it.
55:52
Speaker 2: So I just like didn't change him in front of
55:55
Speaker 2: the kids. And I don't know if that was the
55:56
Speaker 2: right thing to do, but it's just it was what
55:58
Speaker 2: felt right at the time. Well, over time, I kind
56:03
Speaker 2: of like gradually exposed them to it. My six year
56:07
Speaker 2: old is very inquisitive and he had like seen the bag,
56:12
Speaker 2: and my four year old too, she had kind of
56:14
Speaker 2: seen the bag, and I just explained to them. You know,
56:17
Speaker 2: we were at the hospital because he was having trouble pooping,
56:21
Speaker 2: and we found out that there was something wrong with
56:24
Speaker 2: his large intestine, which is where all of that passes.
56:27
Speaker 2: And this is something he's gonna have for a little
56:30
Speaker 2: while that allows the poop to come out. It's not
56:34
Speaker 2: going to be there forever, you know. The doctors are
56:36
Speaker 2: going to fix everything. Like I did get kind of
56:38
Speaker 2: technical with them, and I felt like that helped because
56:42
Speaker 2: it made it like this is just how it is,
56:45
Speaker 2: and this is what we had to do for the
56:47
Speaker 2: baby to be healthy. And my six year old was like,
56:53
Speaker 2: this is like a miracle. He goes to a Catholic
56:55
Speaker 2: school and he was like, those doctors they're like saints.
57:00
Speaker 2: I was like, you're right, Like it is like a
57:02
Speaker 2: miracle and they are like saints, and like this saved
57:05
Speaker 2: his life, you know. And and then like they were
57:09
Speaker 2: fine with it, like they saw it plenty of times,
57:12
Speaker 2: like it really didn't bother them much. You know, they
57:14
Speaker 2: asked questions, but they didn't really seem too concerned or anything.
57:19
Speaker 2: So they just they handled it like so much better
57:22
Speaker 2: than me. And then then I would have expected them
57:26
Speaker 2: to handle it.
57:27
Speaker 1: So that is I think that's a wonderful explanation because
57:31
Speaker 1: you kind of think, well, how do I explain this
57:34
Speaker 1: incredibly complicated condition that to be honest, most adults would
57:38
Speaker 1: struggle to comprehend. But I think you've you've explained it brilliantly,
57:43
Speaker 1: and it did so nice that that your your children
57:47
Speaker 1: are so inquisitive about it and they just kind of go, oh, well,
57:50
Speaker 1: that's that's cool. And I think sometimes we we forget
57:55
Speaker 1: just how sort of resilient children are, and they don't
57:59
Speaker 1: necessarily look at differences. They just look at it, go oh,
58:03
Speaker 1: that's cool, and then move on.
58:04
Speaker 2: You know, was his reaction. He was like, that's cool.
58:08
Speaker 2: I remember saying that that's cool. Okay, that's not what
58:12
Speaker 2: I said when I thought, but I'm glad. I'm glad
58:16
Speaker 2: that's how you think of it. Is it actually cool?
58:20
Speaker 1: I think so. And I think sometimes we kind of
58:23
Speaker 1: think that children will react how some adults react, and
58:27
Speaker 1: they do. They just kind of yeah, nine times out
58:30
Speaker 1: of time to just get on with things.
58:32
Speaker 2: Yeah yeah. And I used it as a learning opportunity
58:35
Speaker 2: to teach him, and you know, my four year old too,
58:38
Speaker 2: she was about to turn five, and they're they're so smart.
58:42
Speaker 2: A learning opportunity about how the human body functions, you know,
58:45
Speaker 2: and how surgeon surgery works and and things like that.
58:49
Speaker 2: I mean, they learned so much. We all did.
58:51
Speaker 1: Yeah, but if they ever have a science exam where
58:54
Speaker 1: Hirshprungs comes.
58:55
Speaker 3: Up, then then they'll they'll know there'll be one step ahead.
58:59
Speaker 2: Yeah, they were.
59:02
Speaker 1: Fantastic. Well, thank you so much for sharing Christopher's journey.
59:08
Speaker 1: In Christopher's Story, I think there's some fantastic tips in
59:11
Speaker 1: there as well, some tips that I haven't heard of.
59:14
Speaker 1: And I know you talked about the sodium.
59:16
Speaker 2: I know.
59:16
Speaker 1: The one thing we do struggle with is Hirshbungs is dehydration. Yeah, hugely,
59:22
Speaker 1: which again I didn't really clock until I was a
59:26
Speaker 1: lot older. But I think little tips on ostme tips
59:30
Speaker 1: and especially people who are in your situation or potentially earlier,
59:37
Speaker 1: you know, have a six month old or potentially younger,
59:40
Speaker 1: I think those will be really really good for them.
59:44
Speaker 2: Yeah. Yeah, so I don't know. I mean I hope
59:48
Speaker 2: that you know, if any parents are listening to this
59:50
Speaker 2: and they just found out that their newborn has Hirschbrungs,
59:54
Speaker 2: like just hang in there, you know, find a good doctor.
59:58
Speaker 2: Hopefully you're blessed with a good like we were. But
1:00:02
Speaker 2: it's gonna be okay, Like, there are far worse conditions
1:00:05
Speaker 2: your child could have really there are and this you
1:00:10
Speaker 2: know this not to say that this is easy for everyone,
1:00:13
Speaker 2: but it just in our experience like it could be worse.
1:00:17
Speaker 2: And I mean, this baby has just been the greatest
1:00:19
Speaker 2: blessing and you know, worth all of it. And yeah,
1:00:26
Speaker 2: I mean, if anybody wants to reach out to me
1:00:29
Speaker 2: with any questions about anything or needs any tips on
1:00:32
Speaker 2: anything that I talked about, like, I'm more than happy to.
1:00:35
Speaker 1: Share brilliant Just one one final, one final question, if
1:00:40
Speaker 1: I may just the future the Christa. I know, we've
1:00:44
Speaker 1: just seen him a half hour ago and he looks
1:00:47
Speaker 1: really really well and looks like he's doing brilliantly. But
1:00:50
Speaker 1: what do you kind of hope for him in the
1:00:52
Speaker 1: near future.
1:00:54
Speaker 2: I mean, just to live a normal life like I
1:00:58
Speaker 2: think he will. He is, like we're taking him places
1:01:01
Speaker 2: and he's going to my son's soccer games every Saturday,
1:01:05
Speaker 2: and like life hasn't stopped, like it we're busy with
1:01:09
Speaker 2: four kids, and yeah, just like his life is just
1:01:13
Speaker 2: totally normal and this hasn't held him back at all,
1:01:17
Speaker 2: and I don't think it will.
1:01:19
Speaker 1: Brilliant Well, I hope the very very best, well for Christopher,
1:01:23
Speaker 1: for you and for your whole family for the future.
1:01:26
Speaker 1: Thank you so much for coming.
1:01:28
Speaker 2: On, thank you for having me, Thank you for listening.
1:01:35
Speaker 1: And being part of this growing community. If you have
1:01:37
Speaker 1: enjoyed the episode, don't forget to subscribe, leave a review,
1:01:41
Speaker 1: and share it with someone who might need it. You
1:01:43
Speaker 1: can connect with us on social media via Instagram, Facebook,
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Speaker 1: and TikTok under the name Tom's Hirshprung's Podcast.
1:01:51
Speaker 3: See you next week
1:02:01
Speaker 1: At