Latest / Tom's Hirschsprung's Podcast / Episode 134 - With Megha (Part 2)

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Episode 134 - With Megha (Part 2) · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshprung'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: thirty four of Tom's Hirshbrungs Podcast. I am delighted to
0:53
Speaker 1: welcome back after I think it's about a year and
0:56
Speaker 1: a half or so. Mega, Welcome back.
1:00
Speaker 2: Thanks Tom. It's been great to catch up again after
1:03
Speaker 2: after such a long time. But also it doesn't feel
1:07
Speaker 2: as long.
1:09
Speaker 1: Yeah, yeah, it's because it's been it's been quite a while.
1:13
Speaker 1: Because you came on. I think it was a matter.
1:16
Speaker 1: I know we were talking about this a little bit off air,
1:18
Speaker 1: but a matter of weeks after giving birth you messaged
1:22
Speaker 1: me to say, get I cover into a podcast. It
1:24
Speaker 1: was like, yeah, sure, if you want.
1:29
Speaker 2: I think like at that point it was just wanting
1:31
Speaker 2: to have a bit of an outlet and just feel
1:34
Speaker 2: connected to sort of that new world that we had
1:38
Speaker 2: entered at that point, so it was really helpful. And
1:41
Speaker 2: it was also helpful that, you know, given that I'm
1:44
Speaker 2: in Australia and most of my family and friends are
1:47
Speaker 2: in the UK, for them to even just haven't understanding
1:50
Speaker 2: an idea of what was going on, because naturally, when
1:54
Speaker 2: that had, like we had received Anya's diagnosis, having to
1:58
Speaker 2: explain yourself to your friends and family became quite exhausting
2:02
Speaker 2: after some point. So it was just helpful just to
2:06
Speaker 2: be able to kind of have that and I was like, hey, guys,
2:07
Speaker 2: go and have listen to this and you'll just sort
2:10
Speaker 2: of know what's happening and going on. So I think
2:13
Speaker 2: that really did help with that too.
2:16
Speaker 1: Yeah, so I we're going to sort of pick up
2:20
Speaker 1: the journey, I guess from there, because it was January
2:26
Speaker 1: January twenty twenty five, and recording this now in June
2:30
Speaker 1: twenty twenty six. So yeah, best part of best part
2:33
Speaker 1: of eighteen months has flown by. And the good news,
2:36
Speaker 1: I guess from the last time we saw you, you
2:39
Speaker 1: are now out of hospital and have been for quite
2:42
Speaker 1: some time, which is did I guess that must have
2:46
Speaker 1: been quite a quite a huge relief to go in
2:48
Speaker 1: the end.
2:50
Speaker 2: Yes, it was a much longer and then expected hospital stay,
2:58
Speaker 2: given that we thought we were only going to be
3:00
Speaker 2: there for a couple of weeks. And you know, they
3:03
Speaker 2: had initially suspected that any had the short segment, but
3:06
Speaker 2: she didn't have short segment. She ended up having too
3:08
Speaker 2: economic plush, so they needed to keep her in hospital
3:13
Speaker 2: for longer because we had to adjust to life with
3:17
Speaker 2: the STROMA and getting the STROMA output under control, and
3:20
Speaker 2: then she was also on the TPN. So the plan
3:24
Speaker 2: during then was just to wean her off the TPN
3:27
Speaker 2: and introduce the feeds again and getting STROMA output under control.
3:31
Speaker 2: But during that there were so many ups and downs,
3:34
Speaker 2: and they they told us that it wasn't going to
3:36
Speaker 2: be sort of linear progress. There was going to be
3:38
Speaker 2: some good days and some bad days where you know,
3:41
Speaker 2: if the STORMA output was slightly higher, then it will
3:44
Speaker 2: set us back a couple of days. And so there
3:46
Speaker 2: was a lot of like back and forth and tweaking,
3:51
Speaker 2: a lot of you know, emotion or challenges as well
3:56
Speaker 2: in terms of just trying to get my around what
4:00
Speaker 2: was happening or what was going on understanding this you know,
4:03
Speaker 2: health condition that we had never heard of. Also like
4:09
Speaker 2: I had no idea what things like TPN was. I
4:11
Speaker 2: had no idea what you know, like I heard of
4:14
Speaker 2: like stormas and stuff, but I never had to have
4:17
Speaker 2: it as my reality and you know, do bad changes
4:21
Speaker 2: and learn about different products and working out what was
4:24
Speaker 2: best for her. So when that was all under control,
4:28
Speaker 2: we find and he got to go home, and I
4:31
Speaker 2: think it was sort of nearly around like like seventy
4:34
Speaker 2: eight days that we had sort of been there. It
4:38
Speaker 2: was very daunting to you initially because you know, you
4:42
Speaker 2: always had that comfort and support whilst being in as
4:45
Speaker 2: you know hard as it was being there of just
4:48
Speaker 2: knowing that, okay, you can just call a nurse and
4:50
Speaker 2: you know, you have the doctors coming around and seeing
4:52
Speaker 2: you every day. So it was initially very daunting going
4:56
Speaker 2: home because I remember even doing like the first bag
5:00
Speaker 2: change at home and I was like close to tears
5:04
Speaker 2: because I was like, how am I going to do this?
5:07
Speaker 2: And then I think by the end of thing, when
5:09
Speaker 2: we sort of you know, got unders said con surgery,
5:12
Speaker 2: which you know was nearly when she was about eleven
5:16
Speaker 2: months old. So she we left hospital where she was
5:18
Speaker 2: about three months and we had her sort of pulled
5:21
Speaker 2: through and reversal eleven months. I was like, I'm like
5:24
Speaker 2: an expert and a pro during like high changes now.
5:27
Speaker 2: So we had like a whole sort of table set
5:31
Speaker 2: up with all of her supplies, and we had like
5:34
Speaker 2: a whole routine of you know, like giving her a
5:37
Speaker 2: shower before, like giving her shower before having everything cut
5:41
Speaker 2: and ready and placed out, and it was just like
5:44
Speaker 2: I would be doing things and my husband would be
5:46
Speaker 2: passing me the pieces and we just sort of like
5:48
Speaker 2: kind of had like a rhythm of how we were
5:50
Speaker 2: doing her bag changes. There were a lot of challenging
5:53
Speaker 2: bag changes as well, because naturally with a crying baby,
5:56
Speaker 2: it's not easy. And it was really hard, like you know,
6:02
Speaker 2: seeing that and sometimes you know, managing the skin around
6:05
Speaker 2: stroma as well, and your stroma was quite prolapsed as well,
6:10
Speaker 2: so I should get more upset, you'll prolapse even more
6:13
Speaker 2: and then you'll go back in because she had the
6:15
Speaker 2: loop in theostomy, So managing that while was doing a
6:18
Speaker 2: bad change, it was. Yeah, it was very very overwhelming.
6:24
Speaker 1: Definitely definitely, And I guess with prolapsed stomas as well,
6:29
Speaker 1: that there are a tough one there. There are plenty
6:33
Speaker 1: of people who've told me the sugar trick where you
6:36
Speaker 1: put sugar on. I don't know if that well that
6:39
Speaker 1: was told you as well.
6:40
Speaker 2: I never got around to doing that because I just
6:44
Speaker 2: was told that this is how her stromo was going
6:46
Speaker 2: to be, given that it's the loop in theostomy, and
6:50
Speaker 2: the surgeons at the hospital either said that they could
6:54
Speaker 2: potentially like revise it a little bit, but they're like,
6:58
Speaker 2: there's no guarantee that it won't come back out again.
7:01
Speaker 2: So I just said, look, we just have to accept
7:03
Speaker 2: it and get on with it. But yeah, like it's
7:07
Speaker 2: you know, I saw I've seen some people's stream as well.
7:09
Speaker 2: It's just like you know, the round piece like sort
7:12
Speaker 2: of just sitting on the tummy and you just you
7:15
Speaker 2: can cut your bags out to shape it, and you
7:17
Speaker 2: just know that it's going to always go on, whereas
7:18
Speaker 2: with onions, it just always changed shape. So we couldn't
7:21
Speaker 2: even prepare that much. So we had to always just
7:24
Speaker 2: I had to just eyeball how it was looking at
7:26
Speaker 2: that point and hope for the best again, you know,
7:32
Speaker 2: learn a lot of tips and tricks of like different
7:33
Speaker 2: products to use to sort of help it from like
7:36
Speaker 2: not leaking. And then I got to a point where,
7:38
Speaker 2: like with bags, that I could keep it on for
7:41
Speaker 2: like a couple of days if I got it on
7:44
Speaker 2: really well. So yeah, it became kind of like a
7:46
Speaker 2: fine art INDI end.
7:47
Speaker 1: And I surprisingly, I guess it's one of those things
7:53
Speaker 1: you just like we were talking a little bit before
7:55
Speaker 1: about how all hirst Sprung's people are different and how
8:00
Speaker 1: all different journeys are different. I guess the way Stomas
8:04
Speaker 1: react are also different as well. And I guess you
8:08
Speaker 1: have to just learn as you go and then sort
8:12
Speaker 1: of as time goes on you think, oh, okay, if
8:14
Speaker 1: it looks like this, then I'll do this or whatever
8:19
Speaker 1: it might be. And I guess that is the I
8:23
Speaker 1: guess frustrating sometimes thing with Hersprungs, where there isn't necessarily
8:28
Speaker 1: a manual that you follow all the time and you go, well.
8:32
Speaker 2: Work it out as you on your journey these.
8:35
Speaker 1: Exactly, it's not always one plus one equals to Sometimes
8:39
Speaker 1: it might equal you know, nine and make absolutely no sense, So.
8:43
Speaker 2: It's one plus one in course to Ah. Yeah, we
8:49
Speaker 2: learn over time that her stoma would be smaller in
8:52
Speaker 2: the morning, so we would always do like a bad
8:55
Speaker 2: change early in the morning, so before my husband would
8:57
Speaker 2: go to work, we say we'll do the bad change then,
9:01
Speaker 2: because like if there were ever times when I'd be
9:04
Speaker 2: home by myself, I was like what am I going
9:06
Speaker 2: to do with her bag? Weeks because one person would
9:08
Speaker 2: have to like hold the phone and put some TV
9:10
Speaker 2: on for her to eve her distracted whilst doing it.
9:13
Speaker 2: It was like a tomor and job. And then yeah,
9:17
Speaker 2: like we had like a good routine in place, and
9:19
Speaker 2: I think that really helped just make that Stowe my
9:21
Speaker 2: journey a lot easier.
9:23
Speaker 1: Yeah, definitely, definitely, I think there's two two people definitely
9:28
Speaker 1: better than than what is that, especially you have the
9:31
Speaker 1: wrigly baby. But yeah, so obviously leaving the hospital then
9:40
Speaker 1: having to do bag changes and whatnot by by yourselves
9:45
Speaker 1: and management to get on with that, which is which
9:47
Speaker 1: is fantastic. How has sort of life changed since leaving
9:53
Speaker 1: the hospital?
9:56
Speaker 2: It was definitely, you know, like I said initially, sem
10:00
Speaker 2: wars like just not having that extra support around you
10:04
Speaker 2: because you know, if there's anything that you slightly like
10:07
Speaker 2: for example, if there's anything that I was ever concerned about,
10:11
Speaker 2: and like say I was in the hospital and going
10:13
Speaker 2: and getting your coffee, like you know, the team at
10:16
Speaker 2: the hospital incredible, like the nurses, the doctors, everyone like
10:20
Speaker 2: you kind of just become like friends at that point. So,
10:24
Speaker 2: like I remember one day, I was like worried about
10:26
Speaker 2: the color of aistroma and I saw her surgeon just
10:29
Speaker 2: walking in the corridor and I was like, hey, you know,
10:31
Speaker 2: you know, I'm just little, and he was like, okay,
10:33
Speaker 2: I'm coming out and have a look right now. And
10:34
Speaker 2: he literally just came in at that point and had
10:37
Speaker 2: a look. And then he was just like, I know
10:39
Speaker 2: you're gonna be worried if I don't, like, you know,
10:41
Speaker 2: tell you that it's okay. So he just came in,
10:45
Speaker 2: had a look and he's like everything's fine, You're all good.
10:47
Speaker 2: And I was able to be like, okay, I can
10:49
Speaker 2: relax now. So you know, you go from like not
10:53
Speaker 2: having that to then going home and just questioning everything
10:57
Speaker 2: and be like is this okay?
10:59
Speaker 1: Is not?
10:59
Speaker 2: And then we had to start over time with realize
11:02
Speaker 2: what Anya's normal was, so you know, is it normal
11:06
Speaker 2: for her to do this and is it not normal
11:08
Speaker 2: for her to do that? And just make that assessment,
11:10
Speaker 2: which I think over time like we've gotten quite good
11:13
Speaker 2: at Initially, there was one or two incidents where there
11:19
Speaker 2: were like things you know about it. I wasn't not
11:21
Speaker 2: sure about it, and I just thought the best thing
11:23
Speaker 2: would be just to take her into the hospital, which
11:25
Speaker 2: I did so about like a few times I would
11:30
Speaker 2: just have did this, take her in just to get
11:32
Speaker 2: that reassurance. But over time I've just kind of learned
11:37
Speaker 2: what is normal for her, and you know, just over time,
11:42
Speaker 2: just with experience, you just get to.
11:44
Speaker 1: Know that, right, Yeah, definitely, definitely it is. It is.
11:49
Speaker 1: And I know I've mentioned this this term before that
11:52
Speaker 1: is trial and error sometimes and you're just kind of going, Okay,
11:56
Speaker 1: well we did this before, what it is trying and
12:00
Speaker 1: but there are times where you'll do the same thing
12:04
Speaker 1: twice and sometimes it will work and sometimes it won't work.
12:07
Speaker 1: So so it is trial and error sort of kind
12:11
Speaker 1: of a special especially with total colonic plus that yeah,
12:19
Speaker 1: it can be can be wildly, wildly different. And with
12:23
Speaker 1: with the plus as well, and doing some research in
12:26
Speaker 1: it a few weeks ago, the plus can mean so
12:30
Speaker 1: many different things for people. What what what will you
12:34
Speaker 1: ever explain what the plus meant for for Anya?
12:38
Speaker 2: So we were told that most of the time with
12:41
Speaker 2: total colonic there is some kind of small bowel involvement,
12:45
Speaker 2: which is what takes you then into the plus category basically,
12:50
Speaker 2: And it could be the eering lengths of small bow.
12:53
Speaker 2: It could be a little bit, it could be a
12:54
Speaker 2: lot okay bid and then it could be extensive. So
13:01
Speaker 2: for Anya, we were told that she still had in
13:04
Speaker 2: that small bowl that she wouldn't need sort of any
13:08
Speaker 2: like long term kind of like TP and support. She
13:12
Speaker 2: was on the on the TP and whilst we were
13:14
Speaker 2: in hospital, but had like you know, she lost more
13:18
Speaker 2: bow or it was more extensive than she probably would
13:21
Speaker 2: have needed some TP and support going with that as well.
13:26
Speaker 2: And so for her, like given sort of is just
13:30
Speaker 2: the last part of her small battle. We were just
13:32
Speaker 2: told that for her it would just mean that we
13:34
Speaker 2: just need to monitor like her absorption of certain like
13:38
Speaker 2: written and minerals mostly B twelve. So that's something that
13:43
Speaker 2: we for now have to just monitor every six months
13:47
Speaker 2: just to make sure that her vinomin B told levels
13:49
Speaker 2: are adequate, and just absorption of a few other things
13:55
Speaker 2: like iron and vitamin D and those things. That's just
13:59
Speaker 2: what we were told that, like if you have like
14:01
Speaker 2: a shorter amount some more about that you might just
14:04
Speaker 2: need some kind of like supplementation with.
14:07
Speaker 1: Okay, Yeah, so I guess getting nutrients in when you
14:11
Speaker 1: have less bow the same with same with things like dehydration,
14:17
Speaker 1: I guess as well, trying to because we we we
14:20
Speaker 1: absorb every everyone with her sprung's will will have to
14:25
Speaker 1: be aware of that because we we have basically we
14:28
Speaker 1: have less bow, we have less absorbed. So yeah, yeah,
14:33
Speaker 1: I'm guessing that that becomes tricky as well.
14:37
Speaker 2: Yeah, and then yes, of course, naturally, the dehydration is
14:40
Speaker 2: quite a it's quite a key one as well. We
14:45
Speaker 2: only had like our first sort of real dehydration episode
14:49
Speaker 2: just a couple of weeks ago. Actually, so and you're
14:52
Speaker 2: called a gastrobug and she just I think, like her
14:59
Speaker 2: catching any kind of gas of ucles like my biggest fear.
15:01
Speaker 2: And you know, she's caught a few other things but
15:05
Speaker 2: has managed them, Okay, but with the gas stro it
15:09
Speaker 2: was just like there was just not anything we could
15:11
Speaker 2: really do at home to kind of keep her adequately hydrated,
15:15
Speaker 2: and which resulted in us having to take her into
15:17
Speaker 2: the hospital and get her rehydrated. But naturally, with the hirshbums,
15:23
Speaker 2: it's not just a straightforward thing of like okay, I'm dehydrated,
15:26
Speaker 2: just rehydrate me, and I can go home. There's a
15:29
Speaker 2: lot more work up that they need to do just
15:31
Speaker 2: to make sure and rule out that it's not like
15:33
Speaker 2: entricolitis or anything like an obstruction in the bow. So
15:38
Speaker 2: all of those things need to be worked out when
15:40
Speaker 2: like crossed off before you can essentially go home. So yeah,
15:45
Speaker 2: that was like our first sort of like big incidents
15:49
Speaker 2: post her leaving hospital the first time round actually, and
15:54
Speaker 2: also she had the pull through it as well, so
15:56
Speaker 2: that was quite another big hospital visit for us. But yeah,
16:03
Speaker 2: all very interesting experiences.
16:05
Speaker 1: Yes, yeah, you said the pull through was done eleven months,
16:09
Speaker 1: which I think is sort of roughly normal time is
16:12
Speaker 1: there for Yes, So.
16:15
Speaker 2: We had, like you know, after being discharged initially, we
16:19
Speaker 2: had like a few appointments with and your surgeon, and
16:23
Speaker 2: I think the key thing was just growth, just making
16:26
Speaker 2: sure that she was growing. We were always told that
16:29
Speaker 2: she will grow like a little bit sort of less
16:35
Speaker 2: compared to her peers, like she won't be like rapidly
16:38
Speaker 2: gaining way and things, which you know, she's surprisingly done
16:42
Speaker 2: well in the sense that when she initially was an
16:46
Speaker 2: hospital she went off the growth trouts to now sort
16:49
Speaker 2: of being back on the growth charts and being at
16:51
Speaker 2: like a good level on the growth charts. So yeah,
16:55
Speaker 2: we just had to kind of keep going. And then
17:00
Speaker 2: the decision was made that she was ready for it
17:03
Speaker 2: with like her weight, like her weight and development was
17:06
Speaker 2: going well, so yeah, we went for it at eleven
17:09
Speaker 2: months and then we kind of, you know, we have
17:14
Speaker 2: a really nice relationship with on your surgeon, like he's
17:17
Speaker 2: you know, he's amazing, and I just requested to him
17:21
Speaker 2: saying that could we please just do it before her
17:23
Speaker 2: first birthday so that we can actually like spend the
17:27
Speaker 2: month like off her birthday not in hospital because I
17:30
Speaker 2: was like, I just didn't want to be back there
17:32
Speaker 2: again at that point. So yeah, it was nice that
17:36
Speaker 2: we did it before our first birthday and then we
17:38
Speaker 2: were home in time for that and we were able
17:40
Speaker 2: to say that like actually celebrate and not be in
17:44
Speaker 2: hospital in wir Ray. Good.
17:46
Speaker 1: Yeah, we don't want to be in hospital for your birthday.
17:50
Speaker 1: If you can help it, it's all you can help it,
17:52
Speaker 1: it's all No. And then the pull through surgery itself
17:56
Speaker 1: was successful.
17:58
Speaker 2: Yes, so she they so they did her pull through
18:05
Speaker 2: and her reversal and one surgery. I know in some
18:09
Speaker 2: cases they do it in two stages where they do
18:12
Speaker 2: the pull through and then the reversal later, but we
18:15
Speaker 2: heard they did it all in one and we had
18:18
Speaker 2: about a week in the hospital where you know, all
18:24
Speaker 2: about the recovery and like getting the bowls to wake
18:27
Speaker 2: up after going through so much. It was a very
18:34
Speaker 2: long day from when we had like dropped her into
18:38
Speaker 2: seeing her when she had come out of theater. It was, yeah,
18:45
Speaker 2: like we just didn't know which way it was going
18:48
Speaker 2: to go because there was so many different kind of
18:50
Speaker 2: variables that we were told that, like, you know, she
18:53
Speaker 2: could still come out with the stonema, we might find
18:58
Speaker 2: something in there that we didn't expect. And what I
19:02
Speaker 2: had kind of like mentioned prepay for myself was like
19:04
Speaker 2: just to be prepared for anything, which is the thing
19:07
Speaker 2: that I didn't do the first time round. The first
19:09
Speaker 2: time round, when they took her in, I was like, Okay, yeah,
19:12
Speaker 2: she's gonna go in for surgery, come out, and we're
19:14
Speaker 2: gonna go home in a week or something. But obviously
19:17
Speaker 2: she came out and there were so many different things
19:19
Speaker 2: that had gone down in surgery at that point, so
19:22
Speaker 2: it was just trying to keep that open mind. So
19:25
Speaker 2: I just remember that day of like just literally walking
19:29
Speaker 2: around the hospital and just waiting, and then there's like
19:34
Speaker 2: there's like a telephone which is outside of the recovery
19:37
Speaker 2: war that parents can just like kind of call and
19:39
Speaker 2: just see like always my child out yet. Then I
19:41
Speaker 2: remember like we just kept going up there and being
19:44
Speaker 2: like is she out yet? Is she out? Like you know,
19:47
Speaker 2: what's hep and then just watching the phone, just waiting
19:51
Speaker 2: for that phone call. And yeah, like I just remember
19:56
Speaker 2: getting that phone call and they you know, they told
20:00
Speaker 2: us that you know, she's out and she did really well.
20:07
Speaker 2: And then the first thing we asked was just you know,
20:10
Speaker 2: did you know everything go as as they had planned to,
20:13
Speaker 2: and they said yes, and then they said that like
20:16
Speaker 2: they were able to do the reversal, they were able
20:18
Speaker 2: to do the call through. And I just remember like
20:21
Speaker 2: bursting into tears because it was just such a like
20:24
Speaker 2: you know, it was just so much emotion like coming
20:27
Speaker 2: through and you know, we would have accepted whatever would
20:29
Speaker 2: be the best thing for her, and we did say
20:31
Speaker 2: that we had that conversation with the surgeon. We just said, look,
20:34
Speaker 2: if we feel that you know, even her keeping the
20:36
Speaker 2: STOWMA will be the right thing for her, then we
20:38
Speaker 2: will fully support that, like we were not we will
20:41
Speaker 2: go with whatever you recommend, and he said that no,
20:45
Speaker 2: he felt that giving doing the reversal was the right thing,
20:48
Speaker 2: so we we accepted that. And then yeah, just going
20:53
Speaker 2: in and seeing her as well, like after that many
20:57
Speaker 2: hours being away from her was like it was just
21:00
Speaker 2: such a mixture of emotions again of like, you know,
21:02
Speaker 2: just the emotion of like what my baby has been through,
21:04
Speaker 2: as to sort of happiness that like it's done. But
21:06
Speaker 2: then you also have to then remind us of like, Okay,
21:09
Speaker 2: we still have a journey to go on after this
21:11
Speaker 2: as well. It's not just like you had surgery and
21:13
Speaker 2: then off you go and everything is great, which is
21:17
Speaker 2: like a big misconception. There's a lot of people have
21:21
Speaker 2: you know, like said to me, They're like, oh, but
21:24
Speaker 2: she's had surgery now, and I'm just like, I still
21:26
Speaker 2: have to be very vigilant. I still have to keep
21:28
Speaker 2: on top of things, like I still have to monitor
21:31
Speaker 2: her in ways that I say wouldn't monitor like my son,
21:34
Speaker 2: for example, who doesn't have hushbrines. So I was like, yes,
21:38
Speaker 2: that's that one part. But now it's like now the
21:40
Speaker 2: real journeys does because it's just like, what does this
21:43
Speaker 2: now mean like for us going forward, because again there's
21:47
Speaker 2: so many ways that the surgery can go afterwards as well.
21:51
Speaker 1: Yeah, definitely, definitely. I think you're absolutely right there with
21:54
Speaker 1: the misconception. I saw something the other day about her
21:59
Speaker 1: sprung and it said, well, once you have surgery, you're
22:03
Speaker 1: or was it the hirshprungs can be fixed with surgery,
22:10
Speaker 1: And you think, well, yes and no, like it's it's not, yeah, okay,
22:16
Speaker 1: that the the initial issues, you know, potentially usly taking
22:22
Speaker 1: the bad bit of bow out and sticking two together,
22:27
Speaker 1: but that I wouldn't class that. And I don't think
22:30
Speaker 1: many people, whether you're a parent of someone with Hirshprungs
22:33
Speaker 1: or whether you have it yourself, would class that as
22:36
Speaker 1: fixed quote unquote. So it's you're absolutely right when when
22:43
Speaker 1: you say that it's it's a managed condition, I guess,
22:47
Speaker 1: rather than a right, well we've we've fixed you now
22:51
Speaker 1: off you go, hm, but it's yeah, but it's I
22:57
Speaker 1: think you're yeah, absolutely right with that. I guess also
23:02
Speaker 1: when you're one of the trickiest things I guess for
23:05
Speaker 1: parents is waiting, the waiting through surgery. I mean, I
23:12
Speaker 1: was lucky enough that I was asleep all through my surgery,
23:14
Speaker 1: so I was fine, but.
23:17
Speaker 2: The family, Yeah, like it's the most agon Like it's
23:22
Speaker 2: so slow the day like it's like just ridiculously slow.
23:29
Speaker 2: And then yeah, like every minute like just watching like
23:34
Speaker 2: the time on your phone change. And yeah, like I
23:39
Speaker 2: just remember just kind of like circling around like the
23:42
Speaker 2: operating suite just hoping to get like some kind of
23:46
Speaker 2: even though I know I couldn't see her, but just
23:48
Speaker 2: somehow hoping that maybe they might walk past with her
23:50
Speaker 2: or something. I don't know, Like my mind was just
23:52
Speaker 2: kind of all over the place, just just wanting to
23:54
Speaker 2: see it, just wanting to know like what was happening.
23:59
Speaker 2: And yeah, it was. It was a tough day, like
24:02
Speaker 2: it was you know that morning as well. We you know,
24:08
Speaker 2: they give you the call the day before to say, okay,
24:10
Speaker 2: this is the time that you need to come in
24:11
Speaker 2: and everything, and then we went in for like pretty
24:13
Speaker 2: odd appointments and they have a discussion with you because
24:18
Speaker 2: when she went in for her first because you're so small,
24:20
Speaker 2: we wren't an apt to go in with her. But
24:23
Speaker 2: this time because they said that you know, she's older,
24:26
Speaker 2: they can get quite distressed if the baby can be
24:29
Speaker 2: quite distressed if they don't see their parents, so they
24:32
Speaker 2: said one parent can go in whilst they pulled her
24:35
Speaker 2: to sleep, and I was like, I can't do it.
24:38
Speaker 2: I was like, I just I can't see that happening,
24:42
Speaker 2: Like it would just break me down completely. So my
24:45
Speaker 2: husband is the one that went in with her and
24:48
Speaker 2: watched her like be put to sleep, and then I
24:52
Speaker 2: was like like, yeah, it was just something that like
24:57
Speaker 2: he's a little more stronger than me, so he was
24:59
Speaker 2: a or to handle it well, whereas I was still
25:02
Speaker 2: crying outside. And while it was going on, and then
25:06
Speaker 2: they said to us, okay, it could be about like
25:09
Speaker 2: sixty seven hours, it ended up being a little bit longer.
25:11
Speaker 2: So then you just start thinking, oh my god, what's happening,
25:13
Speaker 2: what's going on? Why is it taking so long? Yeah, it's.
25:21
Speaker 1: You kind of feel sometimes as though it might be
25:24
Speaker 1: handy if they didn't give you a time, because every
25:28
Speaker 1: time I imagine if they say it's the world, like
25:31
Speaker 1: they said between six and seven hours, as soon as
25:34
Speaker 1: it's seven hours and one minute, I imagine you start worrying.
25:41
Speaker 1: But laterally yeah, yeah, and then you think, well, what's
25:45
Speaker 1: wrong or yeah, because again because we're human. We automatically think, well,
25:51
Speaker 1: something must have gone wrong now that it's seven hours
25:54
Speaker 1: and you know, over seven hours. But but yeah, I yeah,
25:59
Speaker 1: so sometimes, yeah, I hope they don't give a time
26:02
Speaker 1: because it's I know, it.
26:04
Speaker 2: Just gives all like a rough ball park of like
26:06
Speaker 2: you know, it's an all day thing. But I'm the
26:10
Speaker 2: type of person that even like with Anya said or
26:13
Speaker 2: whenever he was, I would really just keep asking questions
26:18
Speaker 2: and like, it's just that I want to know everything.
26:22
Speaker 2: I want to know, like every single detail and everything.
26:24
Speaker 2: And I think like even at some points he was
26:26
Speaker 2: like it's okay, Like you know, I would think about
26:29
Speaker 2: that later and I was like, no, I need to
26:30
Speaker 2: know now, like I want to know. But yeah, like
26:35
Speaker 2: it's yeah, it's a it's a day that, like you
26:39
Speaker 2: just you just can't explain, like I will remember that
26:44
Speaker 2: day so clearly, I think for the rest of my
26:45
Speaker 2: life now. And yeah, it's and then you know, it's
26:51
Speaker 2: like happiness seeing them come out, but then also just
26:55
Speaker 2: emotional to see them in sort of pain as well,
27:02
Speaker 2: which is even harder to see them go through what
27:05
Speaker 2: they're going through, and you know, I just remember her
27:08
Speaker 2: being so like just out of it, she was just
27:11
Speaker 2: like not smiling, just so miserable and like she's such
27:15
Speaker 2: a happy child, you know, and by eleven months, like
27:20
Speaker 2: it was very different to sort of her being two
27:22
Speaker 2: weeks old and her being eleven months old, because at
27:24
Speaker 2: two weeks old, she was just you know, like a
27:27
Speaker 2: blob basically, whereas like eleven months old, she's like her
27:30
Speaker 2: whole individual person with her own personality. And it was
27:33
Speaker 2: really hard seeing her not for a few days be
27:36
Speaker 2: her like normal bubbly, but also amazing that how like
27:41
Speaker 2: a week later she was kind of back to her
27:43
Speaker 2: normal self, like sort of as soon as we were.
27:47
Speaker 2: We were in the hospital that time for six nights,
27:49
Speaker 2: and then like sort of a week later she's back
27:52
Speaker 2: to laughing and smiling again. And then you're just like, oh, okay,
27:56
Speaker 2: did that all just happen in this last week? It
27:58
Speaker 2: feels so surreal. Yeah, kids are just sing resilient, like
28:02
Speaker 2: it's it's crazy.
28:05
Speaker 1: Yeah, yeah, absolutely, it's Yeah. I again, I think because
28:11
Speaker 1: we go through a lot of surgery, as or generally
28:16
Speaker 1: go through a lot of surgery very young, I think
28:20
Speaker 1: our pain threshold also is possibly a lot higher because
28:25
Speaker 1: the I mean, especially with with the type of surgery
28:29
Speaker 1: is as well with being stomach surgery. Generally it's pretty invasive,
28:35
Speaker 1: and yeah, but that's great. That sort of a matter
28:40
Speaker 1: of sort of like a week later or so that
28:42
Speaker 1: things were were almost got back to normal or like she.
28:48
Speaker 2: Was that new normal, because then it was like adjusting
28:51
Speaker 2: to life without the stroma, which was really weird for
28:55
Speaker 2: us because I just wasn't used to it. Like the
28:58
Speaker 2: stromo became around normal and then you know everyone speaks
29:04
Speaker 2: about that like dreaded nappy rash like posts fall through
29:09
Speaker 2: which touchwood. We didn't experience because we just like I
29:17
Speaker 2: was just like constantly like I just did. I don't
29:19
Speaker 2: think I slept because I was just like constantly trying
29:23
Speaker 2: to hear out or listen to see or even just
29:25
Speaker 2: to smell if she had done a pool while she
29:27
Speaker 2: was sleeping. And I remember those first like couple of
29:32
Speaker 2: like weeks, especially where I'd wake up in the morning
29:35
Speaker 2: and it was just like the room was just feeled
29:37
Speaker 2: like nappy bags because of like how many changes I
29:40
Speaker 2: did in the night and then just trying different creams,
29:47
Speaker 2: like I remember reading just all those like you know,
29:49
Speaker 2: Facebook pos and instagrams like pose off like other herd
29:54
Speaker 2: from parents talking about what they use or what they didn't,
29:57
Speaker 2: and it's like just trial and error again or finding
29:59
Speaker 2: like what worked for us, and luckily we found some
30:03
Speaker 2: creams that worked really well and we use those and
30:07
Speaker 2: we managed to sort of get away with like the
30:11
Speaker 2: real extreme stories that I was initially preparing myself to
30:17
Speaker 2: go through.
30:19
Speaker 1: That's really good, really really good. And that's where social media,
30:24
Speaker 1: I guess, can be really helpful where you get especially
30:28
Speaker 1: there are quite a few Facebook groups and quite a
30:30
Speaker 1: few large Facebook groups. Yeah, and it can work both ways.
30:35
Speaker 1: You can have because generally people don't post you know,
30:42
Speaker 1: everything's normal or nothing's really happening. You know, it's all
30:46
Speaker 1: going to be one extreme or the other. So it's
30:49
Speaker 1: either going to be everything's terrible, I need loads and
30:51
Speaker 1: loads of help, or actually, you know, everything's gone really
30:55
Speaker 1: really well or whatever. So I guess you don't really
30:58
Speaker 1: get those stories in the middle where it's just you know,
31:06
Speaker 1: have bad.
31:06
Speaker 3: Days and you know we've gone through, like you know,
31:10
Speaker 3: there's so much to it as well, like there's been
31:13
Speaker 3: some days which have been great, some days which have
31:15
Speaker 3: been really tough, and you know, just because we may
31:17
Speaker 3: not have had an issue in that it doesn't mean
31:19
Speaker 3: that we've not had issues in other areas.
31:22
Speaker 2: And that's what I think. You have to just remember
31:24
Speaker 2: that there's so much to this journey that it's not
31:28
Speaker 2: just a straightforward one. And again how it just varies
31:30
Speaker 2: with everyone, Like you know, there's people who have the
31:33
Speaker 2: same level of persh brands but have completely different outcomes
31:36
Speaker 2: and experiences. And then yeah, it's just it's a very
31:40
Speaker 2: weird one. Like no one can tell you that this
31:43
Speaker 2: is your outcome and this is how it's going to be.
31:46
Speaker 1: No, no, And you're absolutely right, I think I said
31:51
Speaker 1: earlier on you know, one hundred and thirty four episodes
31:54
Speaker 1: in now and I haven't found two that are the same.
31:57
Speaker 1: So everybody, because yes that the condition may have the
32:03
Speaker 1: same name, or you may have you know, the being
32:07
Speaker 1: six different types. You might have the same type as
32:09
Speaker 1: someone else, but you could live a completely different life,
32:16
Speaker 1: you know, And and there will be And I want
32:19
Speaker 1: to stress this point as well to people that even
32:22
Speaker 1: though a lot of people come on here because a
32:25
Speaker 1: lot of things have happened, there have been plenty of
32:29
Speaker 1: people I've spoken to and probably you've spoken to as well,
32:32
Speaker 1: where not a lot has happened where it is the yeah,
32:38
Speaker 1: And I've had people on before who they'll message me
32:42
Speaker 1: and they'll go, oh, my child has has hirshprungs and
32:45
Speaker 1: you know, I've had the pull through and things are
32:47
Speaker 1: going are going all right, but obviously they don't want
32:50
Speaker 1: to come on the podcast because it would be a
32:53
Speaker 1: five minute podcast and they go, oh, we have to
32:55
Speaker 1: pull through and now everything's all right, and that there
32:58
Speaker 1: are there are a lot of stories out there like
33:01
Speaker 1: that as well. So I guess it's it's not yeah,
33:06
Speaker 1: like you say, everybody is completely different, but but there
33:11
Speaker 1: are a lot of positives out there. There are there
33:13
Speaker 1: are an awful lot of positives out there.
33:18
Speaker 2: I like to remind myself of that when, like, you know,
33:21
Speaker 2: they are still some days where I still, you know,
33:25
Speaker 2: like when we had our recent gas rost in in
33:28
Speaker 2: the hospital, where I was like why is this happening?
33:30
Speaker 2: You know, like what is going on? Like how is
33:33
Speaker 2: this happening? And it takes you back to that kind
33:35
Speaker 2: of like mental space of like questioning everything. And but
33:41
Speaker 2: then you have to also just remind yourself again of
33:43
Speaker 2: like that there is good outcomes as well, Like it's
33:49
Speaker 2: not always just doom and gloom, and you know there
33:52
Speaker 2: there are some instances where like families are like you know,
33:57
Speaker 2: having like real big challenges and everything, and like you
33:59
Speaker 2: read those posts as well, and your your heart does
34:01
Speaker 2: go out to them because you're just like, you know,
34:04
Speaker 2: this is tough, and you know, just because of me,
34:09
Speaker 2: something might be good now doesn't mean that it's always
34:11
Speaker 2: going to be like then. Just be something bad is
34:13
Speaker 2: happening now doesn't mean that it's always going to be
34:15
Speaker 2: like that as well. Like it's just.
34:18
Speaker 1: Yeah, I mean, it's it's it's one of those things
34:22
Speaker 1: where if someone could tell you, you know, five years down
34:25
Speaker 1: the line, this is going to happen, ten years down
34:27
Speaker 1: the line, this is going to happen, would be really
34:29
Speaker 1: really helpful. But it's just it's at the moment. And
34:34
Speaker 1: I'm not saying that will ever happen, and it won't
34:36
Speaker 1: ever happen, but at the moment that's it's a difficult
34:40
Speaker 1: one to do. But I'm hoping as more research is
34:44
Speaker 1: put on, because I think there's more research now than
34:47
Speaker 1: certainly I've ever known before. I mean in America over
34:52
Speaker 1: here in the UK, there's there's an awful lot of
34:55
Speaker 1: Hirsbrung's research going on and people also, so not just
35:01
Speaker 1: doing research into babies that have hirshprungs, but actually what
35:07
Speaker 1: is life like when you get to teens, what is
35:09
Speaker 1: life like when you get to twenties, thirties, you know whatever,
35:13
Speaker 1: And just giving people a flavor of, you know, what
35:18
Speaker 1: might happen in the future with a variety of hirshprungs.
35:22
Speaker 1: So not just looking at short segment people or long
35:25
Speaker 1: segment or totes colid, but just going through a variety
35:30
Speaker 1: of different hirshprungs and giving people a bit of a
35:34
Speaker 1: flavor as to what might happen, which I guess is
35:37
Speaker 1: be useful.
35:39
Speaker 2: And I think like as parents, when you hear okay,
35:42
Speaker 2: your childhouses, that's what you want to know, right, You
35:45
Speaker 2: want to know what their future is going to be like,
35:47
Speaker 2: and not just immediate future, because I have seen that
35:51
Speaker 2: there obviously is that more focus on children. Well, I
35:56
Speaker 2: have often wondered what happens when I'm is like eighteen plus,
36:01
Speaker 2: like were like issuing support? Where will she go? What was?
36:05
Speaker 2: And I've even like spent time like googling, you know,
36:09
Speaker 2: like adult colorectal surgeons who who know about hirshbark and
36:13
Speaker 2: I had to interesting. I had to go for an
36:16
Speaker 2: appointment where the colorectal surgeon just about my gall bladder.
36:20
Speaker 2: And the first thing I asked him, I was just like,
36:22
Speaker 2: have you ever seen any adults with hirshbrums? And he
36:26
Speaker 2: was just like, yeah, just in my whole career, one
36:28
Speaker 2: one person. And I was like, what, Yeah. I was
36:34
Speaker 2: more curious to know about that than to know about
36:36
Speaker 2: my gall bladder, because I was just like, I just
36:38
Speaker 2: want I just want to know. I want all the
36:39
Speaker 2: information possible, but it's very limited when it comes to adults.
36:46
Speaker 1: It is, it is, and I think it's definitely something
36:49
Speaker 1: I want to do on this podcast as well, is
36:51
Speaker 1: to try and find more adults, whether they're my age
36:55
Speaker 1: or you know, a bit younger, bit older, try and
36:58
Speaker 1: find more adults, and to view more adults and who
37:01
Speaker 1: fabbed the condition and see what they're doing really, because
37:06
Speaker 1: but there are lots of success stories out there. There
37:09
Speaker 1: are lots of people who are you know, I mean
37:12
Speaker 1: there's all sorts of jobs I've had with people on here,
37:16
Speaker 1: you know, with people who are you know, doing nail
37:19
Speaker 1: technician or fitness instructors or well mainly actors. Everyone seems
37:25
Speaker 1: to be an actor with Hershbrown. So so if Annie
37:27
Speaker 1: is thinking of a career in acting that there's a
37:30
Speaker 1: lot there's a lot of a lot of people out there.
37:33
Speaker 2: Yeah, I think she'd be pretty good. Actually, she's Yeah,
37:36
Speaker 2: And I could definitely see her being in that industry
37:39
Speaker 2: for sure.
37:41
Speaker 1: She's a lot other people to follow.
37:44
Speaker 2: Yes, a lot of inspiration actually around. So that's why
37:48
Speaker 2: one thing that I'm very lucky for her. I'd like
37:51
Speaker 2: to grow up to be able to see that and
37:53
Speaker 2: being able to sort of have access to those stories.
37:58
Speaker 2: And I've even just like made like her frame here
38:01
Speaker 2: in Australia as well, and also like in London another
38:04
Speaker 2: mom whose daughters are like they're all like around the
38:08
Speaker 2: same age. So I was like, it's so nice for
38:11
Speaker 2: Amya to also have that as she grows up, to
38:14
Speaker 2: have like friends sort of even here and you know,
38:18
Speaker 2: we consider UK home as well that she can always
38:21
Speaker 2: like sort of keep in touch with then you know,
38:23
Speaker 2: go through that journey with. So she's so lucky that
38:26
Speaker 2: she will have that network as she grows up. Yeah,
38:29
Speaker 2: are you also like isolated?
38:32
Speaker 1: Yes, definitely that that's that's so so important because it
38:36
Speaker 1: can be sometimes a bit you know, especially like you
38:39
Speaker 1: said right at the beginning, when you have to explain
38:42
Speaker 1: to people all the time and or you know, certain
38:46
Speaker 1: things happen in life and you go, well, yeah, that's
38:49
Speaker 1: because I have her sprungs and they say, well, what's
38:51
Speaker 1: her sprugs. They have to explain it that it goes,
38:53
Speaker 1: you know, but to have a group of friends, especially younger,
38:59
Speaker 1: who yeah, baby, baby, don't ask obviously don't ask those
39:03
Speaker 1: questions yet, but even when they do ask those questions,
39:06
Speaker 1: be hopefully just sort of accepting and go all right,
39:09
Speaker 1: you know this happens because to the hairs bro, you
39:13
Speaker 1: know that that's really really valuable.
39:16
Speaker 2: I guess. So so lucky to you know, with the
39:20
Speaker 2: power of the Internet and social media and everything that
39:24
Speaker 2: there is that access there. So yeah, like it's it's
39:28
Speaker 2: definitely exciting, and you know, I am very excited for
39:32
Speaker 2: her future. And as she gets bigger and you know,
39:36
Speaker 2: like she's you know, luckily, she's you know, a very
39:42
Speaker 2: special child. She she's you know, developmentally, she's you know,
39:48
Speaker 2: having like she's doing well. She's she goes to daycare
39:52
Speaker 2: as well now, so like she has a great time
39:55
Speaker 2: there and seeing like her little personality come out and
40:00
Speaker 2: sometimes it's only like sort of when I change her
40:02
Speaker 2: happy and I see like her scars on her, tell
40:04
Speaker 2: me that it reminds me of what she's gone through.
40:07
Speaker 2: Like I don't feel that this condition defines her as
40:09
Speaker 2: a person at all. And you know, I wish I
40:13
Speaker 2: could go back and tell myself that back then as well,
40:15
Speaker 2: that this is not going to define her as a person,
40:19
Speaker 2: Like you know, she's she's still going to go on
40:21
Speaker 2: to do all the great things in life and have
40:24
Speaker 2: a grate fulfilling life And I'm just a lot something
40:27
Speaker 2: that's going to ball up and this is not something
40:28
Speaker 2: that's going to hold her back. Whereas initially I just
40:32
Speaker 2: like all the things that came into my mind, Like
40:35
Speaker 2: I was like, is she going to be able to
40:36
Speaker 2: do this? Is she going to be able to do that?
40:38
Speaker 2: And like my mind was going sort of all over
40:41
Speaker 2: the place. So I'd love to go back and tell
40:44
Speaker 2: tell the old me, you know, back in Sember twenty
40:46
Speaker 2: twenty four, that it's going to be okay.
40:49
Speaker 1: Yeah, yeah, And you're absolutely right. There will be parents
40:54
Speaker 1: listening to this in the same situation that you were in,
40:57
Speaker 1: you know, who've just had a a child diagnosed with
41:02
Speaker 1: Hirshprung's early on and first thing that people do is
41:06
Speaker 1: google it and hopefully this podcast will come up and
41:11
Speaker 1: then you know they can listen and hear that actually,
41:14
Speaker 1: you know, eighteen months down the line, you know, things
41:19
Speaker 1: have really improved, and you know the fogers lifted, so
41:24
Speaker 1: to speak, and that actually a lot of those worries
41:27
Speaker 1: that you had at the beginning, is this this kind
41:29
Speaker 1: of happen? Is that going to happen? Now they'ren to
41:31
Speaker 1: be able to do this that the other have sort
41:34
Speaker 1: of been Yeah, fears unfounded, which is which is so good,
41:38
Speaker 1: so so good to hear.
41:40
Speaker 2: Yeah. Like I even remember this was whilst Anya was
41:45
Speaker 2: still like admitted in in Nicou at that point, and
41:51
Speaker 2: we had just gone out to get some dinner, and
41:54
Speaker 2: I remember my sisters were with me at that time,
41:57
Speaker 2: and we were just having dinner and I just I
42:00
Speaker 2: just started crying when we were in the restaurants. I
42:02
Speaker 2: was like, is I'm you going to be able to
42:04
Speaker 2: come out and eat in a restaurant with us? Because
42:06
Speaker 2: I just didn't understand like what this condition meant for
42:10
Speaker 2: her and everything, and like I just remember breaking and
42:13
Speaker 2: I was like, you know, simple things like that I
42:16
Speaker 2: even questioned that, like will we be able to do that?
42:18
Speaker 2: And now she's like, you know, she's like a proper
42:21
Speaker 2: foodie and you know, like she will will be eating
42:25
Speaker 2: something and then she she wants to eat what way eating,
42:28
Speaker 2: and like generally, like she pretty much has everything that
42:31
Speaker 2: we would be eating, so she's not limited in her diet.
42:35
Speaker 2: She has like a few allergies to like egg and
42:39
Speaker 2: like coconut, surprisingly, those types of things we have to
42:43
Speaker 2: avoid with her, but generally, like she she wants to
42:45
Speaker 2: eat everything and anything, which is you know, it's so
42:50
Speaker 2: beautiful to see because whenever she's like she wants something,
42:53
Speaker 2: I was like, oh my god, hey let me quickly
42:55
Speaker 2: go get it ready for you. Hey have it? Have
42:57
Speaker 2: it like you know, eat eat so's It's just such
43:00
Speaker 2: a nice thing to see. And yeah, like I just
43:04
Speaker 2: wish again like that I could go back and tell
43:07
Speaker 2: the crying me in a restaurant that it's going to
43:09
Speaker 2: be okay.
43:11
Speaker 1: Yeah, yeah, no, that that is so so good to hear.
43:14
Speaker 1: But it has. It's been brilliant to see you again
43:18
Speaker 1: because I know you've been You've been a huge I think,
43:21
Speaker 1: apart from my parents, you're probably the biggest supporter of
43:24
Speaker 1: the podcast and liking things and following people and that
43:27
Speaker 1: the other so it has it has been great to
43:30
Speaker 1: have you back on again and obviously with whatever you
43:35
Speaker 1: want to come back on and give an update then
43:38
Speaker 1: then I'm sure everyone would would would love to hear
43:40
Speaker 1: you again.
43:41
Speaker 2: Well still, I'm sure there'll be more of me, don't worry,
43:44
Speaker 2: Like it's this world has become like a true passion
43:48
Speaker 2: of mine, Like I love seeing the seeing and hearing
43:54
Speaker 2: the stories. And yeah, I've really enjoyed connected with so
43:59
Speaker 2: many parents through your like podcast, different parents that have
44:03
Speaker 2: connected with and stuff, and it's been amazing, Like you know,
44:06
Speaker 2: all over the world. I have like, you know, friends
44:08
Speaker 2: all over the world. Now I would say like, and yeah,
44:11
Speaker 2: it's been, it's been, it's been amazing, and I really
44:14
Speaker 2: hope to sort of, you know, put it out there
44:16
Speaker 2: that like this community is amazing. Everyone is so warm
44:21
Speaker 2: and lovely and so helpful and we're just so lucky
44:25
Speaker 2: to all have each other in that. And yeah, like
44:29
Speaker 2: you know, I've said this before as well, that you know,
44:32
Speaker 2: I'm always there. If any family ever would you want
44:36
Speaker 2: to chat or speak about anything, like, I'm more than
44:38
Speaker 2: happy to share our experience and even just be like
44:41
Speaker 2: a listening ear and sometimes that's just all you need
44:43
Speaker 2: as well, rather than someone telling you okay, it means
44:47
Speaker 2: this that sometimes you just need the to have that
44:49
Speaker 2: come like then, So yeah, I'm more than happy to
44:53
Speaker 2: help in any way that I can.
44:55
Speaker 1: Fantastic, Well, thank you, thank you so so much for
44:58
Speaker 1: coming back on again. It's been great, and yeah, we
45:01
Speaker 1: will do this. We will do this again another time.
45:04
Speaker 2: Definitely, thank you.
45:11
Speaker 1: Thank you for listening and being part of this growing community.
45:15
Speaker 1: If you have enjoyed the episode, don't forget to subscribe,
45:18
Speaker 1: leave a review, and share it with someone who might
45:20
Speaker 1: need it. You can connect with us on social media
45:23
Speaker 1: via Instagram, Facebook, and TikTok under the name Tom's Hirshprung's Podcast.
45:29
Speaker 1: See you next week.