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Episode 123 - With Sadie · 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 three of Tom's Hirshbrungs Podcast. I'm very glad to
0:50
Speaker 1: be joined this evening by Sadie. Sadie, welcome to the podcast.
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Speaker 2: Thanks Tom for having me, Thank you.
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Speaker 1: So much for coming on, and we are here to
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Speaker 1: talk about your daughter. Yeah. Sofia, yes, absolutely has total
1:06
Speaker 1: colonic hirshbrun total colonic hirshbruks disease and is just just
1:12
Speaker 1: over five months. Is that right?
1:14
Speaker 2: Yeah, she just turned five months on the twenty fourth
1:16
Speaker 2: and March.
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Speaker 1: Fantastic and you're coming off months after giving birth. I
1:20
Speaker 1: be so kudos to you. Absolutely, I'm fine. That absolutely incredible.
1:25
Speaker 1: Oh wow, come on, you know so soon acoo, So yeah, absolutely,
1:31
Speaker 1: kudos for big here. It's incredible. Now I guess we
1:35
Speaker 1: can start from from the very beginning. So yeah, over
1:40
Speaker 1: to you, thank you.
1:42
Speaker 2: So yeah, so Sophia with total kalonic basically totally healthy
1:47
Speaker 2: pregnancy and you know, perfect labor and delivery. And then
1:53
Speaker 2: it was pretty much the day that she was born,
1:56
Speaker 2: I started seeing some things happening. I knew that something
2:00
Speaker 2: wasn't right. I already have a son who's five, so
2:04
Speaker 2: you know, I've been through having a baby before. And yeah,
2:10
Speaker 2: we fed her once after she was born, and then
2:13
Speaker 2: things started happening. She would kind of like gurgle at
2:17
Speaker 2: her mouth and then kind of bubble and then like gag.
2:20
Speaker 2: And I never seen a baby do that before, so
2:24
Speaker 2: I knew something was wrong. I would pick her up.
2:27
Speaker 2: I would turn her over, pat her on the back
2:30
Speaker 2: and like a little bit of like yellowye tinted like
2:34
Speaker 2: I would say the amount of spit up, but it was,
2:37
Speaker 2: you know, a big amount for our baby. It seemed
2:40
Speaker 2: like vomit to me. So anyways, this is happening throughout
2:45
Speaker 2: my time in the postpartum care room. And you know,
2:48
Speaker 2: I made it known to the nurses that this is happening.
2:51
Speaker 2: Because she was delivered in five minutes. The nurses mentioned
2:55
Speaker 2: that probably from a quick delivery, she had fluid in
2:58
Speaker 2: her tummy, it would probably surpasse in the next twenty
3:01
Speaker 2: four hours. So I was like, okay, not too worried.
3:05
Speaker 2: Continued to happen throughout the night, and then you know,
3:09
Speaker 2: I had said to one of the nurses, like, you know,
3:11
Speaker 2: she's I think she's choking, Like when she does this.
3:14
Speaker 2: She mentioned, do you know what to do when a
3:17
Speaker 2: baby chokes? Which I of course do, but I was concerned.
3:20
Speaker 2: I knew that this was not normal. I felt scared
3:22
Speaker 2: to walk away from her in the basinette because I
3:26
Speaker 2: thought that she would choke. So anyways, you know, she's
3:31
Speaker 2: not really feeding, she's still doing this vomiting thing. And
3:35
Speaker 2: then you know, it comes the next day and it
3:38
Speaker 2: should be about time for discharge. Well you know, she
3:41
Speaker 2: hasn't passed muconium, and so, uh, the pediatrician and the
3:46
Speaker 2: rest of the team come in, they take blood work,
3:48
Speaker 2: they look at her. There was like probably at least
3:52
Speaker 2: six people in the room at one time. It was
3:54
Speaker 2: pretty like overwhelming. I mentioned to the pediatrician, you know,
3:59
Speaker 2: she's so vomiting, and he mentioned again it would pass
4:03
Speaker 2: in the next twenty four hours. Or so. So then
4:07
Speaker 2: you know, about an hour goes by and a nurse
4:11
Speaker 2: comes in and they basically assist her in passing the
4:15
Speaker 2: muconium by essentially now I know, it would be called
4:19
Speaker 2: an irrigation, but without using a catheter. It was more
4:22
Speaker 2: of just like a thermometer cover that they used and
4:28
Speaker 2: like muconium came out. So they discharged us and we
4:32
Speaker 2: went home, and you know, things just got worse from there.
4:38
Speaker 2: She was not peeing because she wasn't eating. She was
4:42
Speaker 2: vomiting much more amounts now because I kept trying to
4:45
Speaker 2: feed her and she still wasn't passing any newconium on
4:51
Speaker 2: her own. And then it came about three am. I
4:55
Speaker 2: knew something was wrong. She was uncomfortable, she wasn't feeding
4:59
Speaker 2: like normal. I just knew something was wrong, and I
5:03
Speaker 2: ended up seeing if I could help her pass any
5:06
Speaker 2: new konium myself because I was confused, like what is
5:09
Speaker 2: going on? This is not normal. I was able to
5:13
Speaker 2: help her pass it, but again she wasn't doing it
5:16
Speaker 2: on her own. So then the following morning about eight am,
5:23
Speaker 2: I'm like, I think something's wrong. I think we need
5:26
Speaker 2: to go back to the hospital. So then you know,
5:30
Speaker 2: I told my husband. I called my mom to stay
5:32
Speaker 2: with her son, and we got ready and took her
5:36
Speaker 2: to the hospital. Prior to going to the hospital, I
5:40
Speaker 2: was just looking up why is my newborn not pooping?
5:43
Speaker 2: Because this seemed to be the biggest issue, Like she's
5:45
Speaker 2: throwing up, but she's not pooping, so there seems to
5:47
Speaker 2: be a connection there, And basically, hirshprings disease was the
5:52
Speaker 2: first thing that came up. But you know, everyone tells
5:56
Speaker 2: you when you look something up, take it with a
5:58
Speaker 2: grain of salt, right like, so I'm like thinking, no,
6:03
Speaker 2: like there's no way, Like you know, I'm scared, of course,
6:08
Speaker 2: so I'm like, who knows? So we go to the er.
6:11
Speaker 2: We're sitting there and just this emotion came over me,
6:16
Speaker 2: like it's not where I want to be with my
6:18
Speaker 2: two day old baby right now, like you know, also
6:22
Speaker 2: POSTPARTU myself, Like I just started getting upset because I was.
6:28
Speaker 2: I was honestly scared, and you know, we get triaged.
6:32
Speaker 2: We explain the situation to the triage nurse, to which
6:37
Speaker 2: she asked us to try feeding her because her sugar
6:41
Speaker 2: was low, and we tried feeding her and she did
6:46
Speaker 2: not take anything from the bottle. She only vomited, so
6:49
Speaker 2: you know, that's kind of concerning. She's not even taking anything,
6:53
Speaker 2: but she's vomiting like So then luckily, you know, they
7:00
Speaker 2: did admit us because prior to me saying that she
7:04
Speaker 2: hadn't peed, they were going to keep they were going
7:07
Speaker 2: to let us go. But because I said she hadn't
7:09
Speaker 2: peed and that she may be dehydrated, they decided to
7:13
Speaker 2: admit us. But I thought that was strange because I
7:17
Speaker 2: told you she hasn't passed muconium. That should be a
7:20
Speaker 2: concern in my opinion. So yeah, I thought that was strange.
7:25
Speaker 2: But then you know, I can get into more detail after.
7:29
Speaker 2: But looking at her medical records from the hospital, there
7:34
Speaker 2: there was a miscommunication. On her hospital records. One thing
7:39
Speaker 2: says past muconium, one thing says past muconium with assistance.
7:43
Speaker 2: So somewhere in there someone put something that was not accurate.
7:50
Speaker 2: So then you know, they admit us. We're sitting in
7:53
Speaker 2: the er for about six hours. We sat in the
7:58
Speaker 2: er with Sophia and she wasn't eating. Of course, they
8:03
Speaker 2: hooked her up to an IV. They had you know,
8:06
Speaker 2: the oxygen and heart rate monitor on her, and just
8:12
Speaker 2: as the time went on, she was turning more in
8:15
Speaker 2: more orange, and I just knew that something wasn't right.
8:19
Speaker 2: She had these little tiny cracks on her hands and
8:22
Speaker 2: feet from being so dehydrated. It was really scary. We
8:28
Speaker 2: ended up going for imaging, X ray, ultrasound. Then we
8:33
Speaker 2: were finally admitted about five pm that night to the
8:37
Speaker 2: pediatric floor. A doctor and a student came in. They
8:42
Speaker 2: spoke to us and said that there was nothing they
8:46
Speaker 2: could see on the ultrasound or X ray that seemed
8:50
Speaker 2: out of the ordinary, just that there was some gas
8:53
Speaker 2: build up in the small bowel, that is what he said.
8:58
Speaker 2: So that was kind of like, I'm not a medical professional,
9:02
Speaker 2: I'm like, okay, gas build up, sure, But at the
9:05
Speaker 2: same time, she's not even eating, so it seemed strange.
9:09
Speaker 2: And then, you know, as the night went on, the
9:12
Speaker 2: nurses and the doctor kept encouraging me to feed her,
9:18
Speaker 2: and that was extremely frustrating because she continued to vomit.
9:24
Speaker 2: Of course, you know, it's the same pattern over and over,
9:28
Speaker 2: and at this point it had become even worse the vomiting.
9:33
Speaker 2: It was then projectile vomiting and it was very, very yellow,
9:40
Speaker 2: and you know, the nurses offered to feed her throughout
9:44
Speaker 2: the night. I don't know if they thought there was
9:48
Speaker 2: something they were missing or something they could do that
9:52
Speaker 2: would be different than what I was doing. You know,
9:55
Speaker 2: they were calling her lazy, and it was really frustrating.
10:00
Speaker 2: It felt like no one was listening to me, even
10:02
Speaker 2: though I knew something was wrong. The doctor, he asked
10:09
Speaker 2: about a history of cystic fibrosis, as you know, there
10:12
Speaker 2: is sometimes a muconium plug with cystic fibrosis, And then
10:18
Speaker 2: he asked about Hirschbrung's disease, like he asked about family history.
10:22
Speaker 2: Of course, there's no family history, so I say no,
10:26
Speaker 2: to which he attempts to help her with passing muconium,
10:31
Speaker 2: and he again does the same thing the nurse did
10:33
Speaker 2: in the hospital during our postpartum care room, and muconium
10:38
Speaker 2: came out. He said, I don't think it's Hirshbrungs, because
10:42
Speaker 2: if it was, it would have sported it out. And
10:45
Speaker 2: I'm thinking, I don't know if that really makes a difference,
10:51
Speaker 2: like the like, you know what I mean, It just
10:53
Speaker 2: doesn't seem like that would be a necessarily typical thing,
10:57
Speaker 2: especially now knowing that Hirshbrungs is different in every kid,
11:02
Speaker 2: you know, every kid handles it differently and shows symptoms
11:06
Speaker 2: a little bit differently, Like I think because she was
11:09
Speaker 2: so backed up is the reason that it kind of
11:11
Speaker 2: more pooled out instead of you know, so he just
11:15
Speaker 2: right there was like, nope, I don't think so, he said,
11:20
Speaker 2: I don't think this warrants a call to London because London,
11:24
Speaker 2: Ontario is the closest children's hospital to us. So and
11:30
Speaker 2: this was a Sunday night. So basically, yeah, we say
11:35
Speaker 2: the night things did not go well progressively got worse.
11:40
Speaker 2: I then the next morning was I had stopped feeding her,
11:45
Speaker 2: even though they kept asking me to even the next day.
11:49
Speaker 2: I said no, like I don't think it's safe. I
11:51
Speaker 2: don't feel comfortable, like I'm not feeding her. She was
11:55
Speaker 2: hooked up to fluids, but you know, that does only
11:58
Speaker 2: do so much for baby, who obviously needs more. And
12:02
Speaker 2: then I was sitting there in the room, decided to
12:07
Speaker 2: get up and go look at her in the crib,
12:10
Speaker 2: and she was choking on her vomit. She was her
12:15
Speaker 2: eyes were rolled into the back of her head, her
12:18
Speaker 2: body was stiff as a board, and she wasn't breathing.
12:23
Speaker 2: So it was really scary, and you know, I just
12:26
Speaker 2: picked her up as fast as I could, and I
12:29
Speaker 2: like patted her on the back so hard, and finally
12:32
Speaker 2: she started breathing and she came to it and I
12:37
Speaker 2: screamed at the top of my lungs like somebody helped
12:39
Speaker 2: my baby, and my husband ran down the hallway to
12:41
Speaker 2: get somebody. We were all the way at the very
12:43
Speaker 2: end of the hallway, so we were far from the desk,
12:46
Speaker 2: and you know, a bunch of nurses came rushing in.
12:50
Speaker 2: The new pediatrician for that day came in. They moved
12:55
Speaker 2: us to a room that was right beside the desk.
12:57
Speaker 2: They hooked her up to an enng tube and they
13:00
Speaker 2: were like we're calling London. Thank god, thank god they did.
13:06
Speaker 2: And you know, it was very scary that she choked,
13:09
Speaker 2: and it's sad that that's what had to happen to
13:12
Speaker 2: escalate things. But at the same time, I'm like almost
13:17
Speaker 2: like thankful that happened, because if it didn't, like what
13:21
Speaker 2: if they still wouldn't have believed me, What if they
13:23
Speaker 2: still would have been brushing it off, like you know.
13:27
Speaker 2: So anyways, basically, they called the transport team. Took took
13:31
Speaker 2: like two to three hours for them to come from London.
13:35
Speaker 2: Because that is about two hours away from from us.
13:39
Speaker 2: So they came and they got her all situated. I
13:43
Speaker 2: was able to talk to the team who was going
13:44
Speaker 2: to be taking her. They replaced her n G two
13:48
Speaker 2: because it wasn't big enough. Nothing was coming out of
13:51
Speaker 2: the one that was put in. So then finally they
13:55
Speaker 2: put a bigger one in the team from London, and
13:58
Speaker 2: lots of greenish yellow bile came out immediately, And you know,
14:05
Speaker 2: they were they were so kind in knowing that, you know,
14:09
Speaker 2: like I'm obviously scared postpartum. She's a tiny, little fragile baby,
14:13
Speaker 2: like three days old. And then yeah, they got her
14:18
Speaker 2: all hooked up to everything that they needed to. They
14:20
Speaker 2: put her in this like little like incubator on a
14:24
Speaker 2: car to put her in the ambulance and bring her
14:26
Speaker 2: to London. Unfortunately, I couldn't go. I couldn't go with them,
14:31
Speaker 2: So I was very emotional and scared about that because
14:37
Speaker 2: it's a two hour drive away from me, and yeah,
14:45
Speaker 2: with people I obviously don't know, even though I know
14:47
Speaker 2: they're going to take the best care that they can
14:49
Speaker 2: of her, of course, so you know, they said, we're
14:53
Speaker 2: going lights and sirens, you know, we're going to take
14:56
Speaker 2: her and you guys will get there when you get there, okay,
15:00
Speaker 2: you know, And it was like, okay, like this is
15:02
Speaker 2: serious now, like this is for real. So then luckily
15:08
Speaker 2: one of the the nurses that was with her, there
15:14
Speaker 2: was a respiratory, an all pediatric, and there was a
15:18
Speaker 2: nurse and another medical professional. I can't remember, but of
15:24
Speaker 2: course that was such a blur for me. And she
15:28
Speaker 2: ended up getting my phone number and my husband's phone number,
15:31
Speaker 2: and she sent us a picture when they were in
15:33
Speaker 2: the ambulance, Sofia was sleeping, she was good, and it
15:37
Speaker 2: was like so reassuring that she did that. And then
15:39
Speaker 2: when they got to the hospital, she sent a picture
15:42
Speaker 2: and said we've arrived and she's being watched. So it
15:45
Speaker 2: was like thank god, you know, like so that was
15:49
Speaker 2: really reassuring. My husband and I came home, packed our bags,
15:53
Speaker 2: said goodbye to our son, and drove two hours to London.
16:00
Speaker 2: You know, bizarre, like three days after giving birth. You
16:04
Speaker 2: never would have thought that that's what you'd go through.
16:08
Speaker 2: But yeah, then we got to London. We immediately knew
16:12
Speaker 2: it was the place to be because they were immediately
16:18
Speaker 2: on it. She was admitted to the General Surgery team
16:23
Speaker 2: for a suspected bowel obstruction. So that's what the pediatrician
16:28
Speaker 2: in Windsor, that's what she admitted her for when she called.
16:32
Speaker 2: So then we were able to talk to some of
16:35
Speaker 2: the surgery residents and you know, they said, do you
16:39
Speaker 2: know what the plan is? And we were like no,
16:41
Speaker 2: like what's the plan? Like you know, by this point,
16:44
Speaker 2: I'm like the emotions are put aside. I'm serious, like
16:48
Speaker 2: we need to figure out what's going on, like you know.
16:51
Speaker 2: And he was like, we are going to do an
16:53
Speaker 2: upper GI test, lower GI test, We're going to do
16:56
Speaker 2: X ray, ultrasound like He's like, we're gonna do it all.
17:00
Speaker 2: And I was like, okay, let's do it, Like this
17:03
Speaker 2: is what we need to be doing, you know, because
17:06
Speaker 2: I knew something was wrong, like I when she choked
17:10
Speaker 2: and the team in Windsor came in to help. When
17:14
Speaker 2: I screamed for help, I literally said to them, I
17:18
Speaker 2: know that something is wrong between here and here, and
17:21
Speaker 2: I pointed to the upper of her abdomen and basically
17:24
Speaker 2: her bump. I'm like, something is wrong in between here there.
17:27
Speaker 2: It's not going down, it's only coming up. There's something
17:30
Speaker 2: going on, like you know, So then you know, we
17:34
Speaker 2: did all the imaging and you know, there was nothing
17:39
Speaker 2: that they could really see right away. It was crazy
17:42
Speaker 2: because they said, you know, usually you can see some
17:46
Speaker 2: kind of narrowing with her sprungs in imaging, but the
17:51
Speaker 2: only thing that was kind of narrow was her rectum.
17:54
Speaker 2: And you know, we did a contrast enema and even
17:57
Speaker 2: the radiologist said, you know, I don't think this looks
18:01
Speaker 2: like hirshprungs. There's a small narrowing near the small bowel,
18:05
Speaker 2: but he said that's not uncommon. So you know, at
18:09
Speaker 2: this point, you know, we're thinking, don't know what's going on.
18:14
Speaker 2: I think it was maybe day two. The surgeon had
18:18
Speaker 2: come in and spoke to us and said, we are
18:21
Speaker 2: thinking two possible things, but we don't know yet. And
18:24
Speaker 2: so he explained to us pyloric stenosis and he explained
18:29
Speaker 2: Hirshbrung's disease, and he said, I have never seen those
18:33
Speaker 2: two things together, but it's not impossible. So he was
18:39
Speaker 2: thinking that it was both of those things. So then
18:44
Speaker 2: day five rolls around and it's like she needs food.
18:49
Speaker 2: So they ended up taking her for a pickline procedure.
18:53
Speaker 2: They put her under put a pickline in so that
18:55
Speaker 2: she could get total parental nutrition and be stable. Figuring
19:00
Speaker 2: out what's going on because obviously she kind of eat
19:03
Speaker 2: like orally, blood tests and everything. Eventually we started the irrigations,
19:11
Speaker 2: which helped significantly. Like obviously she became very distended, you know,
19:18
Speaker 2: her her tummy was not tender anymore. So it was
19:22
Speaker 2: really nice that we started doing that because it's like, yes,
19:25
Speaker 2: she needs this relief, like because if we hadn't have
19:28
Speaker 2: done that, you know, her bowels could have perforated, and
19:32
Speaker 2: you don't want that. So yeah, basically it took a
19:37
Speaker 2: little while to figure out what was going on. Once
19:39
Speaker 2: they kind of knew that it wasn't pylo or stenosis
19:42
Speaker 2: because they did a repeat ultrasound and it didn't get thicker,
19:46
Speaker 2: so they knew it wasn't. That they started working on
19:51
Speaker 2: suspected hirshprungs. They did the rectal biopsies and unfortunately they
19:57
Speaker 2: kept coming back in conclusive, so then there was only
20:02
Speaker 2: one that came back conclusive after doing three of them.
20:06
Speaker 2: They sent us home after two weeks doing the irrigations,
20:10
Speaker 2: said we'll see you in three to six months for
20:12
Speaker 2: a pull through surgery. It probably is Hirshprungs disease, you know,
20:16
Speaker 2: And at this point I had started feeding her. It
20:19
Speaker 2: was a little bit difficult. She would still have like
20:22
Speaker 2: slightly yellow spit up. It wasn't the amount that it
20:27
Speaker 2: was before, but it was still yellow. The teen wasn't
20:32
Speaker 2: concerned about it though, So then, you know, we were
20:37
Speaker 2: home for five days. We're waiting for the second biopsy
20:41
Speaker 2: to come back and confirm. And on day five, I
20:48
Speaker 2: was getting ready to go get more medical supplies for
20:50
Speaker 2: her irrigations and I go to get her out of
20:55
Speaker 2: her swing and she has vomited all over herself, bright yellow,
21:00
Speaker 2: and I'm like, oh no, this is not good. And
21:04
Speaker 2: I started to feel like the irrigations were becoming less
21:07
Speaker 2: successful as time went on, so I was kind of
21:12
Speaker 2: thinking that plus the vomit, I'm like, this is not good.
21:15
Speaker 2: Like we're back to the beginning. So I called my husband,
21:18
Speaker 2: I said, we need to go to London. He's like, okay.
21:23
Speaker 2: I called my mom. I'm like, you have to pick
21:24
Speaker 2: up my son from school because we have to bring
21:27
Speaker 2: Sophia to London. Something's wrong. So we go to London.
21:31
Speaker 2: We're in the er very quick, very very quick, like
21:34
Speaker 2: you know, and by this point she's like three weeks old,
21:39
Speaker 2: so it was very quick. She was the youngest one
21:42
Speaker 2: in there. And right after we were triaged, the nurse says,
21:47
Speaker 2: can I get a private room for this baby? Bring
21:49
Speaker 2: us to a private room. And then her surgeon, luckily
21:53
Speaker 2: he was there. He was on call, and he came
21:56
Speaker 2: down to see her. The resident surgeon came down to
21:59
Speaker 2: see her. They did an irrigation, did an X ray,
22:04
Speaker 2: you know, we basically did everything we could, and her
22:07
Speaker 2: surgeon ultimately was like, I'm not very happy with these results.
22:11
Speaker 2: Her stomach is very ballooned, so much so that it's
22:14
Speaker 2: impressive and not in a good way. And so he
22:20
Speaker 2: basically was like, you know, he knew that I was
22:23
Speaker 2: emotional to be back there and that it was tough,
22:26
Speaker 2: you know, like he knows and he goes, we might
22:32
Speaker 2: have to do a stoma surgery tomorrow. And it was
22:35
Speaker 2: like surgery, Like that's a big word, you know, for
22:39
Speaker 2: a little three week old baby. And he's like explaining
22:44
Speaker 2: it to me, and it's just it was just a
22:48
Speaker 2: lot in the moment. He explained that basically they would
22:54
Speaker 2: go in and do the biopsies full thickness biopsies when
22:57
Speaker 2: they do the surgery, and we would then have an
23:01
Speaker 2: answer as to what was going on. So I did
23:05
Speaker 2: feel some relief in knowing that that would be the
23:07
Speaker 2: case because we needed to know, and you know it
23:15
Speaker 2: it was a lot. He said that he would give
23:17
Speaker 2: it the night to find out if we would be
23:19
Speaker 2: doing surgery in the morning. Unfortunately, you know, either way
23:24
Speaker 2: we would have had to have done it. So he
23:26
Speaker 2: did make the decision that night, even without seeing her.
23:30
Speaker 2: He said, you know, it was easy for me to
23:32
Speaker 2: make the decision. After seeing her. He called the pathologists
23:35
Speaker 2: told him that he needs to be there when they're
23:37
Speaker 2: doing the surgery to do the biopsies right away. So
23:42
Speaker 2: next morning rolls around and she has, you know, her
23:46
Speaker 2: belly has gone down, but she's on suction and gtube.
23:50
Speaker 2: You know that's not long term obviously, and she's not eating.
23:54
Speaker 2: So you know, even though her belly went down, she
23:57
Speaker 2: still needed that surgery. So yeah, basically she goes into
24:02
Speaker 2: surgery and four hours later, her surgeon calls and he
24:09
Speaker 2: was like, hey, Sadie, Sophia did well. She's in recovery
24:15
Speaker 2: and she he said, long segment her spring disease. So
24:19
Speaker 2: he said her rectum and her entire bowel like her colon.
24:27
Speaker 2: So I guess like long segment and total colonic could
24:31
Speaker 2: maybe be similar in a way. But yeah, so basically
24:35
Speaker 2: her entire colon. I then learned about total klonic after
24:39
Speaker 2: her diagnosis, so I realized that that's what it would
24:42
Speaker 2: be called. So after surgery, you know, she has her
24:47
Speaker 2: iliostomy bag. She had a laparotomy with diverting loop iliostomy
24:57
Speaker 2: and full thickness biopsies. That is what she had. So
25:01
Speaker 2: basically they do a small five centimeter incision just above
25:05
Speaker 2: her belly button to the left, and then they went
25:10
Speaker 2: in did the biopsies, like pulled her bowels out to
25:15
Speaker 2: check everything out, and then created the diverting loop stoma iliostomy.
25:21
Speaker 2: So she does still have her colon right now, and
25:24
Speaker 2: then that would be our next surgery is the pull through.
25:31
Speaker 2: So yeah, basically after surgery, you know, it was hard
25:35
Speaker 2: to see her in the condition she was in. She
25:38
Speaker 2: was very pale, her heart rate kept skyrocketing. Yeah, and
25:45
Speaker 2: you know, obviously she's got these bandages and stitches and
25:50
Speaker 2: this new austiny bag over her stoma, which a stoma
25:55
Speaker 2: after surgery is intimidating, looks scary, It looks very scary.
26:03
Speaker 2: It was obviously very big at the time, but as
26:08
Speaker 2: time went on it did get smaller and it is.
26:11
Speaker 2: It is a very nice stoma that she has. Now
26:13
Speaker 2: it's not so big and intimidating anymore. I remember being
26:18
Speaker 2: in the hospital and thinking like, why can't I get
26:21
Speaker 2: a bag to stay on? But you know, now I
26:24
Speaker 2: can realize that it's because of how big the stonma
26:27
Speaker 2: was making it so difficult. But now it's much it's
26:31
Speaker 2: much easier. Of course, especially with the lack of baby
26:37
Speaker 2: osto meat products. It's like, you really want to find
26:39
Speaker 2: something that works.
26:41
Speaker 1: Yeah that does that?
26:42
Speaker 3: Still is that still the thing, because it still seems
26:46
Speaker 3: to be you know, they seem to have adult bags
26:49
Speaker 3: for children or baby stoneas. Is that still Is that
26:52
Speaker 3: still the case?
26:54
Speaker 2: Yeah? So for Sophia, there is two different like newborn
26:58
Speaker 2: baby like ostome products. One is by a Hollister and
27:04
Speaker 2: one is by Coloplast. Personally, I like the Hollister the best,
27:10
Speaker 2: but yeah, there was only those two options. So I
27:13
Speaker 2: was kind of in the hospital working with both options,
27:16
Speaker 2: like which one works better? And like it was horrible,
27:19
Speaker 2: like it would leak like two three times a day.
27:21
Speaker 2: I would have to change it, like you know, I
27:24
Speaker 2: became comfortable with doing it, but at the same time,
27:27
Speaker 2: like my poor child, like tearing this off so many
27:30
Speaker 2: times a day and putting a new one on, like,
27:32
Speaker 2: you know, but we've got a routine now. It's good.
27:35
Speaker 2: It's a lot better. But yeah. So then more tests
27:41
Speaker 2: came after her diagnosis though, because her surgeon mentioned a
27:45
Speaker 2: lot of times other things can be associated with long
27:49
Speaker 2: segment or total chlonic because that is something that's more
27:52
Speaker 2: commonly genetic. So he wanted to look for CCHS, which
27:59
Speaker 2: is the congener at all central hypoventilation syndrome. So that's
28:04
Speaker 2: if you have like the fox to be gene mutation,
28:07
Speaker 2: which she did. Get genetic testing done. We have our
28:10
Speaker 2: appointment at the end of the month to find out
28:13
Speaker 2: what it is. But they're not concerned about the CCHS
28:17
Speaker 2: syndrome because they did breathing like respiratory monitoring on her
28:26
Speaker 2: throughout the night and she was she was okay, she
28:29
Speaker 2: was good, so they weren't worried about that. And then
28:35
Speaker 2: you know, genetics when they came up to take her
28:37
Speaker 2: blood work. They also just kind of like looked at
28:40
Speaker 2: her facial features and her body and stuff to make
28:43
Speaker 2: sure there was no other like syndrome that they could
28:46
Speaker 2: see to the eye. So yeah, as of right now,
28:53
Speaker 2: everything's good. They they did an echo cardiogram on her heart,
28:58
Speaker 2: they did ultrasound on her kidneys because sometimes those two
29:02
Speaker 2: things can be impacted as well. But yeah, everything looks good.
29:07
Speaker 2: Hopefully only the total Kalana Kirshbrungs, I think that's more
29:11
Speaker 2: than enough for a little one to handle. But yeah,
29:17
Speaker 2: so right now, we're just managing her ostomy and she's
29:23
Speaker 2: doing well with it. Of course, she's had it since
29:27
Speaker 2: three weeks old and she's five months, so she's doing
29:30
Speaker 2: pretty good. Sometimes there's a prolapse that can be very scary.
29:36
Speaker 2: I think the biggest thing with her iliostomy, especially when
29:39
Speaker 2: we were still in the hospital, was gaining weight. It
29:43
Speaker 2: was really hard to see consistent weight gain for her.
29:49
Speaker 2: So they ended up putting her on sodium chloride because
29:53
Speaker 2: they were like, this will help her retain the weight.
29:57
Speaker 2: Because we weren't allowed to leave until we had five
29:59
Speaker 2: concenttive days of wait gain, so we were like, come on,
30:03
Speaker 2: we need these five days. We want to go home.
30:06
Speaker 2: You know, so I wanted to enjoy my newborn because
30:10
Speaker 2: that all of that is not at all why I
30:14
Speaker 2: expected after giving birth to her. Still so bizarre to
30:20
Speaker 2: me that that's how everything happened. I think there's definitely
30:25
Speaker 2: some trauma, you know, but I just try to be
30:30
Speaker 2: grateful and stay positive, and you know, she's here and
30:34
Speaker 2: she's doing well, and that's the most important thing to me,
30:37
Speaker 2: of course. So yeah, it's been quite the journey.
30:42
Speaker 1: Yeah, I mean that definitely definitely sounds like one heck
30:47
Speaker 1: of a journey. I mean, there's parts in that story
30:49
Speaker 1: where I don't know, when you're talking about the bile,
30:53
Speaker 1: about all of that being sticked up, sounds like like
30:57
Speaker 1: absolute classic hirshprungs. There was a shame that that wasn't
31:02
Speaker 1: diagnosed straight away. But you mentioned stoma, is there there's
31:08
Speaker 1: a couple of things, a couple of things or talk
31:10
Speaker 1: about with the prolapses. Do they still teach the sugar
31:15
Speaker 1: trick where you put sugar on the on the stoba? Yes.
31:19
Speaker 2: So, actually we had in home nurses for like a
31:23
Speaker 2: few weeks after getting home. I'm pretty independent with it,
31:26
Speaker 2: so we don't have them anymore. But when her first
31:29
Speaker 2: prolapse happened and I reached out to them. They mentioned
31:32
Speaker 2: that sometimes you can put sugar on it and it
31:35
Speaker 2: will go back. In one thing though, that I have
31:39
Speaker 2: found to work so far for me, knock on wood
31:45
Speaker 2: is like cold compress, so that seems to help. If
31:49
Speaker 2: I lay her down, she's calm, you know, like of course,
31:52
Speaker 2: not crying and freaking out. Then I just put a
31:55
Speaker 2: cold compress on her soma every once in a while,
31:58
Speaker 2: take it off, look at it, take it off, look
32:00
Speaker 2: at it type thing, and eventually it will go down.
32:05
Speaker 2: So that has been helpful because I'm sure you know
32:12
Speaker 2: you've probably heard, but with prolapses, if they don't go back,
32:16
Speaker 2: or if they get dark in color, or you know,
32:18
Speaker 2: if stool is not coming out, then that is a
32:22
Speaker 2: risk because that could mean an emergency surgery to remove
32:25
Speaker 2: any dead tissue that could have happened during that prolapse.
32:28
Speaker 2: So you know, that is a scary thought. And unfortunately,
32:34
Speaker 2: because she's a baby and lacks the abdominal muscles, when
32:39
Speaker 2: she cries and she's like really crying, sometimes that's what happens.
32:43
Speaker 2: So it's it's pretty It's like I want to keep
32:46
Speaker 2: her happy all the time.
32:48
Speaker 1: Yeah, absolutely, I didn't know the cold compress one. I haven't.
32:53
Speaker 1: I haven't heard that one. That's a really interesting one.
32:56
Speaker 1: I don't. I don't know if anyone else listening has,
32:58
Speaker 1: but I yeah, I hadn't heard that one at all.
33:01
Speaker 1: And on stonemas as well. I know you mentioned that
33:04
Speaker 1: when he went in the second time and they talked
33:10
Speaker 1: about stonma surgery. And presume when they talk about stoma
33:14
Speaker 1: surgery then they might be like a form to sign
33:17
Speaker 1: or something just in the moment. So I've spoken to
33:23
Speaker 1: parents who've been in a very similar situation to this.
33:27
Speaker 1: In the moment and they're talking about the word stoma,
33:30
Speaker 1: does any of it go in at that time?
33:34
Speaker 2: Yeah, that's a good question, honestly. Like I was very
33:40
Speaker 2: emotional in that moment, especially once I kind of heard
33:43
Speaker 2: that that's what he wanted to do. But he kind
33:46
Speaker 2: of explained it like right away when he was talking
33:49
Speaker 2: about it. He mentioned, you know, we might have to
33:52
Speaker 2: do a stoma surgery tomorrow, which is when I would
33:55
Speaker 2: go in and bring her working bowel to her abb
34:00
Speaker 2: him in. And I actually knew what a stoma and
34:04
Speaker 2: antomy iliostomy was already. My grandma had colon cancer for
34:11
Speaker 2: six years and she had an aliostomy as well, so
34:16
Speaker 2: I already knew like what it was. I of course
34:20
Speaker 2: didn't know the side of what I'm on now, like
34:24
Speaker 2: changing it in all that, et cetera. But I knew
34:30
Speaker 2: that it was a thing, and most commonly you know,
34:33
Speaker 2: in bowel cancer patients that would receive it or even
34:41
Speaker 2: you know, I'm now learning like a lot of people
34:43
Speaker 2: who have crones and colitis also will end up with
34:46
Speaker 2: an ostome, and you know, they talk about how it
34:48
Speaker 2: gives them their life back. So I did know a
34:51
Speaker 2: little bit about it, and then once he explained it,
34:54
Speaker 2: but in that moment, I was just thinking, like my
34:57
Speaker 2: baby going into surgery, Like this is scary, like, you know,
35:02
Speaker 2: especially when she's already not well off and that's why
35:06
Speaker 2: she needs surgery. It's kind of scary, like she's already
35:08
Speaker 2: so fragile, you know, like how much can she take?
35:12
Speaker 2: You know? So it was it was scary. There was
35:14
Speaker 2: lots of days and nights that I just kept praying
35:18
Speaker 2: that you know, she would stay with us and she
35:21
Speaker 2: would you know, be okay, and the doctors would figure
35:24
Speaker 2: out what was going on. And you know, I grew
35:27
Speaker 2: up Catholic and I and I pray, and I've never
35:31
Speaker 2: prayed harder than I did in that time, honestly, because
35:35
Speaker 2: I just thought, Lord protect my baby. Like you know,
35:38
Speaker 2: it's a scary time to go through all of that, right, So.
35:43
Speaker 1: Yeah, absolutely, And I know that faith has been there
35:48
Speaker 1: for a lot of people, especially in those very, very
35:52
Speaker 1: trying times. And I think there's a lot of people
35:56
Speaker 1: I talk to who who really really quite a lot
36:00
Speaker 1: on faith to really get through getting through those times.
36:05
Speaker 1: And I think that's, yeah, definitely.
36:08
Speaker 2: I think I was a little bit frustrated. So you know,
36:12
Speaker 2: of course, with both my pregnancies, before giving birth to
36:16
Speaker 2: both my kids, I've always you know, pray to God
36:20
Speaker 2: that they would be healthy, we would have a safe
36:22
Speaker 2: and healthy delivery, and you know, and I think I
36:27
Speaker 2: was a little bit I was a little bit angry
36:30
Speaker 2: that she was born and all of this was happening,
36:34
Speaker 2: like but you know what, something I've realized is that
36:39
Speaker 2: God gave her to me, and God gave her to
36:41
Speaker 2: me for a reason, and you know, I have to
36:47
Speaker 2: trust in his plan. And you know, like I said,
36:53
Speaker 2: God gave her to me for a reason, and iould
36:55
Speaker 2: truly feel like you know, I'm doing everything I can
36:58
Speaker 2: for her, and even a special when it comes to advocating,
37:01
Speaker 2: because you know, a lot of people don't know what
37:03
Speaker 2: Hirshpring's disease is, so.
37:08
Speaker 1: Oh they don't they definitely do that, But yeah, I
37:13
Speaker 1: think there is also, like you kind of alluded to, there,
37:16
Speaker 1: that sort of feeling of why me? Sometimes you know,
37:20
Speaker 1: whether it's in your situation, whether you're a parent of
37:24
Speaker 1: a child with Hirshbrungs, or whether you're in my situation
37:27
Speaker 1: and you have Hirshbrungs and you kind of think, yeah,
37:30
Speaker 1: but why why did I get it? Especially because we're
37:33
Speaker 1: sort of in similar situations where we have no family
37:35
Speaker 1: history of the condition. I have no family history, Sofia
37:40
Speaker 1: doesn't either, So you kind of think, well, why why
37:44
Speaker 1: why did I get it? You know? Or why did
37:46
Speaker 1: my baby get it? And I think that is a
37:49
Speaker 1: perfectly understandable reaction. I think that's perfectly normal, and hopefully
37:57
Speaker 1: one day we will get we will get an answer,
38:01
Speaker 1: but at the moment, we kind of don't. How you
38:06
Speaker 1: spoke a bit before as well, just on that sort
38:10
Speaker 1: of mental side as well, about the sort of PTSD
38:14
Speaker 1: trauma effect that's absolutely again in my experience and the
38:20
Speaker 1: people I spoke to, that is absolutely one hundred percent
38:24
Speaker 1: a thing, one hundred percent real and it you know,
38:29
Speaker 1: I think that is again when people talk about the word,
38:34
Speaker 1: I think the word trauma's overused and PTSD the words
38:37
Speaker 1: are overused a little bit, very true.
38:38
Speaker 2: Yeah, and you know what, everyone's level of traumatic is
38:43
Speaker 2: going to be different as well. So you know, I
38:47
Speaker 2: fair it is overused, but I do truly feel because
38:51
Speaker 2: there is these feelings that keep, you know, coming in
38:54
Speaker 2: in certain moments. You know, if I look at pictures
38:57
Speaker 2: of when I was pregnant, you know, or when I
39:01
Speaker 2: first gave birth to her, and you know, this is
39:04
Speaker 2: before everything happened, it kind of hits me in a
39:07
Speaker 2: different way, like, you know, I never had these expectations
39:11
Speaker 2: of what would come afterwards, you know, Like so, yeah, I.
39:16
Speaker 1: Think that and that's that's real trauma, you know that
39:19
Speaker 1: that's the real sense of the word, you know, as
39:21
Speaker 1: opposed to when people use it quite flippantly, which frustrates me.
39:25
Speaker 2: That's that's one hundred percent, No, one hundred percent, Like
39:30
Speaker 2: you know, being in those hospital, those days and those
39:34
Speaker 2: nights of you know, watching her and there's nothing I
39:38
Speaker 2: could do for her to console her. Like, you know,
39:41
Speaker 2: all I could do was give her her soother I
39:43
Speaker 2: couldn't feed her, I couldn't I could hold her. I
39:45
Speaker 2: could rock her, you know, which was really you know,
39:49
Speaker 2: something I'll always remember is the nurses and my husband
39:53
Speaker 2: both like constantly both times being at the hospital before
39:57
Speaker 2: and after her surgery, mentioning every time I would be
40:02
Speaker 2: holding her in the rocking chair and rocking her that
40:05
Speaker 2: she just seems so content with me. And that was
40:08
Speaker 2: just always something that I will remember because that was
40:12
Speaker 2: that felt good in the moment, like I was her
40:15
Speaker 2: safe space in the moment, you know, even though she
40:18
Speaker 2: was dealing with so much in so much pain, and
40:21
Speaker 2: you know, so that's something I'll always remember that's actually
40:24
Speaker 2: special from that. But other than that, yeah, like all
40:27
Speaker 2: the testing, you know, I went with her to every
40:31
Speaker 2: single imaging, every single test that I could go with
40:33
Speaker 2: her too, Like I went with her, And it's a
40:38
Speaker 2: lot for a little baby to go through all of that,
40:40
Speaker 2: you know. And yeah, it's it's not what you to
40:45
Speaker 2: expect after having a baby, that's for sure.
40:47
Speaker 1: No, h No, I think that obviously people with who
40:53
Speaker 1: have family the history of hershbruns who kind of you know,
40:56
Speaker 1: you can sort of plan for that, but no, when
40:59
Speaker 1: your site's wiped like that and you won't plan at
41:04
Speaker 1: all for that. It is Yeah, as I said right
41:07
Speaker 1: at the very beginning, to then come on and do
41:09
Speaker 1: a podcast five months on, it is incredible.
41:13
Speaker 2: Thank you.
41:14
Speaker 1: Yeah.
41:15
Speaker 2: No, I'm very honestly, like like I said about like
41:19
Speaker 2: you know, meant to be her mom and God gave
41:22
Speaker 2: her to me. I truly feel like advocating for her
41:26
Speaker 2: and advocating about her Shpring's disease and you know, spreading
41:30
Speaker 2: the word for awareness and all that stuff is truly
41:35
Speaker 2: it feels like up. It feels like I'm doing something.
41:37
Speaker 2: It feels like I'm you know, I really do want
41:42
Speaker 2: to help those who are dealing with this. Like like
41:44
Speaker 2: I said, a lot of people don't know about it,
41:46
Speaker 2: and you know, I didn't know about it until having
41:49
Speaker 2: a daughter with it, and then you know, even friends
41:53
Speaker 2: and family not knowing about it either. So you know,
41:56
Speaker 2: I think also one of the things about not knowing
42:00
Speaker 2: about it is people don't realize just how severe and
42:03
Speaker 2: serious it can be and how how it starts, like
42:06
Speaker 2: you know, because it is traumatic. I would say for
42:10
Speaker 2: you know, parents and Luckily the baby won't remember things
42:14
Speaker 2: from when they're a newborn. But either way, they're still
42:17
Speaker 2: going through it in the moment, right and it's painful.
42:20
Speaker 2: It's uncomfortable, like you know, they don't get to just
42:24
Speaker 2: be a normal baby and just eat and sleep and
42:27
Speaker 2: poop all day right like so you know, but yeah, no,
42:33
Speaker 2: I do find a passion in talking about it, so
42:37
Speaker 2: I'm glad to be on here.
42:39
Speaker 1: Yeah, it's definitely And just finally, I know we said
42:42
Speaker 1: we were going to to talk about this as well.
42:46
Speaker 1: So again I mean bodies to remind me of this.
42:50
Speaker 1: But Sofia is due another surgery and there's a gofund
42:53
Speaker 1: me but that's surgery. Do you want to talk just
42:56
Speaker 1: a little bit about that.
42:57
Speaker 2: Yeah, yeah, so yeah, base Sophia will be receiving her
43:03
Speaker 2: pull through surgery and which you know, the surgeon would
43:08
Speaker 2: go in remove her colon and any other affected bowel.
43:15
Speaker 2: I know that her rectum is affected, but this is
43:18
Speaker 2: kind of where things come into play. Unfortunately, in Canada
43:23
Speaker 2: where I live, there is really no general uh there's
43:30
Speaker 2: only general surgeons that do these surgeries. There's no specialist
43:34
Speaker 2: like cole erectal specialist and pediatric at that. So basically, uh,
43:41
Speaker 2: being in a Hirshprung's group on Facebook, I have you know,
43:45
Speaker 2: learned about different resources, different people's stories, experiences, and it
43:51
Speaker 2: sounds like, you know, many families you know, go through
43:56
Speaker 2: issues after a pull through or you know, they're going
44:00
Speaker 2: through other surgeries, and it sounds like some families end
44:05
Speaker 2: up going to see doctor Wood in Ohio at Nationwide
44:09
Speaker 2: Children's Hospital for colorectal care. And you know, I thought,
44:16
Speaker 2: with her having such a severe and rare form of
44:19
Speaker 2: her Shprungs disease, you know, one that happens in everyone
44:24
Speaker 2: to fifty thousand or one hundred thousand kids, it's quite rare,
44:30
Speaker 2: and I felt that it was important that we see
44:33
Speaker 2: a specialist for her to have the most success in
44:37
Speaker 2: long term after her pull through surgery. You know, so
44:42
Speaker 2: I created a GoFundMe because anything out of country is
44:47
Speaker 2: not covered unfortunately by our Ontario o hip program, and
44:54
Speaker 2: it has to be paid out of pocket. Fortunately, they
45:00
Speaker 2: we have given us a discount because we are out
45:02
Speaker 2: of country, but it is still sixty thousand dollars to
45:06
Speaker 2: go to Nationwide for us, so and that would be
45:09
Speaker 2: honestly even if we were to go somewhere out of province.
45:13
Speaker 2: I know that Montreal has a hospital that does some
45:19
Speaker 2: coarectal work, but even if we were to go there,
45:22
Speaker 2: it would be about thirty to forty thousand dollars as well.
45:27
Speaker 2: So I just really want to give her the best
45:30
Speaker 2: chance at long term success with her pull through surgery
45:33
Speaker 2: so that she can have a somewhat normal childhood and
45:37
Speaker 2: hopefully you know, not have to have significant amount of
45:42
Speaker 2: medical intervention or surgeries afterwards. And yeah, just by seeing
45:50
Speaker 2: a specialist, I think that it's going to be the
45:52
Speaker 2: best thing for her in having that success. You know,
45:56
Speaker 2: doctor wood At Nationwide has done these surgeries for twenty
46:00
Speaker 2: six years. He's been working with pediatrical erectals. So I'm sorry,
46:04
Speaker 2: I can't beat that. Like, really, twenty six years in
46:07
Speaker 2: pediatrical erectal is highly highly specialized, you know. So, and
46:14
Speaker 2: it's of course nothing against any general surgeons. Sophia's general
46:18
Speaker 2: surgeon saved her life, you know, and he he is
46:21
Speaker 2: a great surgeon of course. Of course, you know, he
46:24
Speaker 2: did mention to me when we had Sophia's follow up
46:27
Speaker 2: that he'd only seen a few of Sophia's cases in
46:30
Speaker 2: his in his career. So that's kind of like, you know,
46:36
Speaker 2: if he's only seen a few maybe he's only done
46:38
Speaker 2: it a few times, you know, So it's you know,
46:42
Speaker 2: I just want to get for the best chance possible
46:44
Speaker 2: at long term success, like I mentioned, by seeing a specialist.
46:47
Speaker 2: So I did create a GoFundMe. You know, we are
46:50
Speaker 2: hoping to raise, you know, a significant amount of help.
46:55
Speaker 2: I will be doing like a pasta fundraiser with my
46:57
Speaker 2: family and friends in our town. And you know, even
47:03
Speaker 2: if we can get it down to an amount that
47:05
Speaker 2: we can afford being on only one income because of
47:11
Speaker 2: course I'm one on Matt leave, and two now that
47:15
Speaker 2: she has this complex, rare disease, I have to be
47:18
Speaker 2: her caretaker as well. So yes, there's a lot of
47:23
Speaker 2: things that come into play, and I'm just really hoping
47:26
Speaker 2: that I can give her this.
47:28
Speaker 1: This chance, absolutely, And I'll link the link for that
47:31
Speaker 1: will be in description of this video. It will be
47:33
Speaker 1: in the If you listen to this on Spotify, it'll
47:36
Speaker 1: be in the link there, or Apple will be in
47:39
Speaker 1: the link there. Wherever you're listening to is. There will
47:41
Speaker 1: be a link below that you can contribute to the
47:46
Speaker 1: go fundme for Sophia but I just want to say
47:49
Speaker 1: thank you so so much for coming on. It has
47:52
Speaker 1: been a pleasure to chat to you again. As I
47:54
Speaker 1: mentioned five months on after after giving bird and going
47:58
Speaker 1: through such much an incredible time. I guess it's just
48:03
Speaker 1: left for me to say that I wish all the
48:06
Speaker 1: very best with the go fundme and for everything else
48:10
Speaker 1: for you and Sofia in the future. Thank you so
48:14
Speaker 1: much for coming on.
48:15
Speaker 2: Yeah, thank you Tom, Thank you for having me, and
48:17
Speaker 2: thank you for sharing the go fund me and spreading
48:19
Speaker 2: the word for Sophia. We really appreciate it my pleasure.
48:25
Speaker 1: Thank you for listening and being part of this growing community.
48:28
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
48:31
Speaker 1: leave a review, and share it with someone who might
48:34
Speaker 1: need it. You can connect with us on social media
48:37
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
48:42
Speaker 1: See you next week, Bay to Bay