Adam: And so I had 15 minutes of worry then I saw the surgeon and he was great and he just told me that it had all gone well and he talked through the operation and things and he said that they found the hernia on the other side but nothing had come through on that one but they’sd sown that one up as well. And so it was all good and then I was waiting but I was much more relaxed now thinking oh they’sre okay and it was like a huge it was like a coronation procession that came round on the bed and 20 people round her it could have been dramatic music and it would have been amazing.

Sonia: They wheeled me back feeding her like on this bed.

Adam: Through the whole hospital.

Sonia: And then the whole ward.

Adam: And then in the ward yeah. So she came round and I mean I was trying to look at Livvy and she had no interest in me. She fed for ages didn’st she.

Sonia: Well she’sd gone like four hours hadn’st she so it was the longest she’sd ever- at that age.

Adam: So I didn’st really get a look at her for another hour after that yeah it was- .

Sonia: Oh that was quite funny.

Adam: And you had a massive grin and you were crying coming round the corner.

Michelle: So we, you know, we talked through what had gone on through the surgery and how the closure had gone and you know, they were very pleased with the outcome so far said that they’sd managed to get everything back in that, you know, he was being ventilated so we were warned numerous times actually before he went into surgery that it was, he, it was going to be quite shocking when he first come out because he’sd a lot more morphine that he’sd been on already and would be ventilated and probably quite swollen and he was, but like I said we were prepared for that.

Harry: Still, still not very nice, eyes lolling in his head and.

Michelle: And he was really puffy wasn’st he?

Harry: Yeah and has got this big ventilator stuck in his mouth.

Michelle: Yeah.

Harry: That you can’st hear him you can’st hear him cry.

Michelle: He can’st cry, he can’st.

Harry: He can’st move his head so he looks, he looks very uncomfortable.

Michelle: Yeah they tried to, cos they said they want to avoid paralysing the body from the neck down so what they did kind of help preserve the stitches and help preserve some of the work, the good work that they’sd just spent five hours doing so they either go down the routes of lots and lots of morphine, which is what they did with him in the end.

Harry: To stop him moving around.

Michelle: To try and keep him so sedated that actually you don’st really, you can’st move that much or they have to go through drugs that basically paralyse the body which is slightly more severe so we didn’st really want to go down that route. So and they’sd done a very good closure and we’sre hoping that it would kind of heal in the best possible way and look a bit like a belly button but it, it wasn’st to be. So then that, that was all good wasn’st it, he was ventilated for a few days and the wound was redressed and then sadly he’sd got an infection in his wound and so he got e-coli which destroyed a lot of the surrounding skin and so his wound was very, very poorly for quite some time.

But I called [husband], it was rush hour then, so [husband] couldn’st drive back in he got the train back in and then we just lay in my bed together for four hours and I just, all we could do was close our eyes and not talk, I didn’st sleep I just laid there. And then finally the surgeon come back round he said, Done the operation opened up the hole and the bowels are in a bag so you know, she’s come through that, she’s ventilated and you can go and see her in a few hours.s So it was another few hours onto that I was allowed to go up and meet her and I just remember seeing her thinking she looks so ill, she just looked so ill.

Oh yeah, yeah so he basically was like – best case scenario, got all the bowels back in put them back together and he was quite realistic, he said, I’m not sure if it will actually properly work but it seems to have done the trick’s, it was almost like he was a bit like I’sll just try this out, you know what I mean, but I was just so happy cos I thought that’s the best, that’s the best case scenario so it was like complete elation like my God yes it’s worked. He said the next day Just see if she actually has a poo,’s cos that means that it’s worked which is a bit of a dramatic experience in itself. But she was still in the ICU unit at that point intensive care and she was ventilated cos the pressure on her lungs was too big but this is where she, she’s like I don’st need this in she was trying to rip it out, causing her throat to bleed I could see on the, on the monitor that it, the ventilator was breathing for her but she was trying to breath in between it so she didn’st really want it in. Then she, cos she kept trying to rip it out there was so much stitching up there they were worried she was gonna split it so then she was paralysed which was awful because she was crying and moving and then they paralysed her and she just kind of went [stares] like that.

Just while it healed?

Yeah so, it was, they said that the best, although it looks horrific to paralyse someone even a baby you can’st, you can tell an adult can’st you or a child at least you need to lie still but with a baby you can’st and if that rips open it’s just all gone. But I remember they did, gave her the drugs to paralyse her and she went like that and then she looked at me and went [flaps arm] and I was like She just moved her arm,’s and the nurse said, She can’st move her arm.s I’m promising you she just moved her arm,’s and I said, Watch her,’s and she did it again so the nurse was like, right she’s having a bit more [laughs] so I was like, what a feisty little thing really, trying it on already. But yeah so she was in there, I can’st remember how many days she was actually in there I think she was in there a couple of weeks after and then she got moved to the next room which was high dependency and she’s still got the long line in, she’s still not eating. That was the other thing that was hard to deal with cos the nurses and doctors were saying she’s gonna be hungry she’s gonna feel hunger and she can’st have anything. So the only thing they let me give her was a tiny bit of sugar water on her lips but she could not, they said she’s got to get to through the hunger pains as well like a normal baby would be oh lovely load of milk, she can’st.

That first night after surgery he was quite, he was quite poorly. He in terms of the surgery it went well in that they did get his bowel back in but it was a tight squeeze cos he had such a lot out, so what they had to do was put a patch in to hold the bowel in it was like a membrane that would degrade over a period of time and then they basically seal the stomach together over the top of that, and you have a little drain in. And so that’s how things had gone well although Mr [name] did say it was tight he might pop open it’s something we’sve got to be aware of because it was such a tight squeeze. So he came back from surgery and he came back off the intubator, I think they’sd had a struggle getting him off and the anaesthetist came to see us, she came to see us before actually and talked us through everything so that was reassuring she explained what she would do and it’s quite reassuring as well, I don’st know if it’s because they’sre so little it’s all consultant lead or it is at [city] for the babies so again it’s that reassurance and I know you probably shouldn’st, but you think oh I’m getting the consultant looking after my baby’s, just that extra level of assurance. So she explained what she would do before and afterwards she came up to see us and she said it was a bit of a struggle to get him off the intubation he might need to go back on it later and then across the day he got, he found it harder and harder to breath I think combined with everything going back in it squashed up his lungs a bit obviously everything had had loads of space and then it all gets squashed in.

And that night that’s probably the worst night that night they re-intubated him I don’st know what time about 10 o’s clock and I don’st know whether by doing that or whether it was just a consequence but his lung then collapsed and his breathing and his sort of stats and his blood levels were all to pot so he was, he was poorly but he then seemed to steady off. So I went back to Ronald McDonald to get some sleep and then [husband] came to get me it must have been an hour later and said, Oh they said he’s critical,’s that was awful, just awful. But so I went back over not knowing what to expect and they were doing the blood gases which is where they basically take a sample from his toe and they’sre just checking what his oxygen levels are in his blood. And I think they were doing that every half an hour and the one that came back started to show an improvement and then he picked up from that point but it, it just amazed me how, how quickly it could turn one way or another with babies they’sre just so delicate but yet so resilient. You think they’sre doing okay and then he just went down and then very quickly came back up and that’s what they do when they’sre monitoring and putting the right drugs in to manage all those all those statistics come out, those blood tests. But yeah that was a horrible night.

Did you stay with him all night that night?

Pretty much I think in a space of two or three hours, but then it’s quite quick how they rectify themselves so that reassurance is right, and the nurses are very good they will ring you if, for anything if you want them to. So yeah I think I stayed most of that night and then went and got some sleep the very early hours of the morning but then by the next day he’sd picked up again and was steady. And I think it was about three days after that they started giving him food because before that he’sd not been able to have anything.

So she’sd come out of the surgeries and you’sd see that the silo was smaller. It was always very bloody. It was, it took me a little while to get used that after the surgeries. It looked really different and then, when she’sd cry, you couldn’st hear it. You could just see it and I found that really hard, you know. Your baby was crying but you couldn’st hear them. It was silent cries. It was really hard but at each surgery I could see that it was getting smaller. That you, there was that bit of hope, you know, and I think that’s the thing that you carry with you every day is hope. You, you know, it’s, you know, it’s that, that hope and that advocate and you just think, okay, I’m this person and I, you know. I need to be there and I need to be hopeful and, you know, every time you had a surgery, you felt that little bit of hope that you were, you know, the light at the end of the tunnel that you will get there in the end.

You know, it was tricky though because the surgeries put more pressure on her. She, she’sd be fine before the surgery and then she wasn’st afterwards and it was hard because you’sd see that, how much pressure it was putting on your child’s breathing or, you know, and how, how they weren’st coping with it. But it was necessary and, you know, those are the moments like was this the best course of treatment for her? Was this the way that she should have been treated here? But you could see the progress and, you know, I at some level, you give away that control and say, I have to trust that they know the best thing for her. They’sre, you know, they’sre looking at her, the whole picture of her medically. And doing the best thing for her.

But all these questions start to risen, regarding his, his future life what is going to happen does he need to get an oxygen tank with him all the time we never really talked about the, the second effects or the secondary things that could happen. We asked about them and they were all well the book said that your baby can have, development issues, that you will get respiratory problems, that he can probably not hear to noises – but we will not know until the later stages so we will keep a very close monitor for that. Then I think the last day on [city] was really another shocking day because we were told that as soon as he recovered or he demonstrated to breathe by himself or to be able to breathe by himself that we were going home and that was their only comment you are going home as soon as he can breathe by himself. So it was a day where we, well he was fine, we went to bed but we decided to stay quite late in the unit because of that nurse, Alix said I want to stay until midnight. There was a another nurse that night that was closer to us and we were talking to her and she said, Oh yes he’s still quite poor and she mentioned the word, poor, this was after one of the lungs collapsed and she said that We will let you know, whenever if something happens we’sll call you back. So the next morning we call the unit, no we were supposed to call the unit but we had our showers and we had two missed calls one for Alix and one to me. So we thought well this is going to be bad news again and so we were we were called directly to our phones at this time in the morning that means it’s very bad news. So the first thing we did after that was call back the unit and they said, Well this is this is the [surname]’s we want to see, what’s the status for [son]? and they said, Who’s [son]? Yes he’s the baby that’s in the cot beside you because we were close to the phone or to the line receiving all these calls. He’s in cot number two and he’s just beside you and they said, No, no there’s no [son] in this unit, But you called us so what does that mean? Oh don’st worry let me try to find the information and we will call you back. So we were shocked right so we, again so we had all these ups and downs, we went to surgery then he came down again he was really poor two nights ago, he was better yesterday but wasn’st fine, wasn’st perfectly fine, or wasn’st the same level that he was before surgery or just after surgery, what’s wrong? So they called us back and they said, Oh yes he’s not with us because he has been transferred to the high dependency unit and that happened over night. So we were calling you because you were going home. And they mentioned again the word home, And you need to come and see which are the procedures to follow. When they told us that we thought well this is going to be a couple of days until they stabilise him in the high dependency unit so we asked the question How long is this going to take? And they said, We are already starting with all the documentation, I think a maximum of one hour [laughter] we were like how can this be happening right.

Sonya: And the sister who took me was, I don’st know I can’st think of the words to describe her but she was militant maybe was the right word. Like Livvy had literally just come round and I picked her up and was holding her and she was like Right you need to feed her, you need to try and feed her now,’s Okay.s Is that normal, is that normal has she normally latched on by now, is she latched on right?’s And it was just like really in my face quite aggressive really over the top and the anaesthetist was going, Just, just give her a minute she’s literally just come round, just give her a minute.s And I’m thinking oh my God is there something wrong and she obviously had a check list she needed to get through to see if she was okay after the anaesthetic but it was literally within like a minute of me seeing her.

Adam: And it was putting the pressure on you to diagnose in a way.

Sonya: Yes.

Sonya: Like is this normal does she appear normal when you only know what’s normal when the baby’s a three week old baby’s just come out of a general anaesthetic like how are you supposed to know what.

Sonya: And I – you know she is still sleepy so, and the anaesthetist is saying if she’s not feeding in ten minutes then we’sll worry now it’s fine because she’s still, I mean look at her she, I mean she was still like she’sd just come round from a ten hour sleep, so I didn’st enjoy that bit it was that kind of initial rush of great relief and wow she’s fine to oh is she fine I’m having all these questions shouted at me with a clipboard [laughs].

But then on Thursday we saw him again sleeping and with the high frequency ventilator and they told us well the problem we have now is not because of the hernia but because one of the lungs, the good one, collapsed, it’s just full of liquid and cannot cope with this, it’s probably because he has been intubated for a long time and just collapsed. So of course now it’s now with the high frequency ventilator we are making that exchange of gasses working but without the high ventilator he cannot breathe by himself. So it was quite frustrating because all the time from day one to day ten and then day 13 which was the surgery I was always telling the doctors just give him a chance just give him a chance to go to surgery that’s his chance if everything else that you can do before is just going to keep him stable but he needs the surgery, he needs the repair, if he doesn’st get the repair then it’s all the efforts that we are wasting so please give him a chance even if it, this is when he was in a really, really, really poor condition. Even if he’s in a poor condition just take him. And of course they were just trying to consider my comments as yes you are the parent and you know, we know and we understand how you feel but we’sre the experts and we’sre going to deal with this as necessary again very again they were not confronting us they were just accepting our feedback. But then going through the surgery and looking at him recovering and then suddenly falling down again was very frustrating because, we gave him the chance and now he was not responding to that chance so we were very sad, we thought he was going to be that his lung was not big enough or not strong enough to be able to breathe by himself.

So that’s when the physiotherapy idea came from one of the surgeons, sorry one of them, I think it was one was between the surgeon team because they were consulted every day, Miss [name] came every day to see [son] after surgery and they it was the surgeon team and the paediatric team, the paediatrician team to discuss about this physiotherapy. And similar as the days before the surgery he was very poor on the Thursday and because of the lungs collapsing they collapsed one twice, the big one twice and the small one once. then on Sunday morning we came back and he was back on his tummy and he was waking up and they said well we don’st know what happened the only thing that we did overnight was to change the tubes, we were changing the tubes form a 3.5 to a 4 and that, that well we follow the physiotherapy and that seems to be working. Because Alix was not happy with the nurses during the night or one particular nurse during the night. I don’st think it was the nurse, I think it was really the condition after surgery, the recovery after surgery. So that was on a Sunday he recovered and then from there on that’s probably day 17/18 from then, then on every single day it was one drip less, one sensor less, one tube less and then suddenly we saw the smile, because there was no tube. So it was it was the recovery was just so quick. And then that brought back the comment from the Spanish guy he said they are so fragile but they are strong inside and that’s tryst, yeh, so they can.

So after the surgery, I think when your child is going to have surgery you do everything you possibly can to stay strong until that point and there’s adrenalin and there’s support from lots of different sources right up to that point and the surgery happens and almost a lot of that support goes away and you’sre left thinking well you, for me I knew I had to be strong up until the point of the day of her operation, I didn’st realise I would have to keep being strong, so strong afterwards. So and I think a lot of the community nurses and the health visitors were all, we all had this date in our minds and on that date [daughter] would be fixed and it was not like that at all. We came back from hospital after her operation and that was when we had the suspected hernia’s*, greater risk of bowel infection and the things that we weren’st told like [daughter’s] bowel was going to be hyperactive after the surgery and her poo would be very acidic. So what we had to use was a mixture of a barrier cream and an alkaline cream to save her skin because it burns the skin, and keep changing her nappy like every ten minutes. And that was, it felt, it doesn’st sound it but that was quite stressful because every time she was constantly going to the toilet and her skin was getting all burnt and that was awful. We had no idea that things like hernias could happen and they then told us when she had the hernia or when it was a suspected hernia that that could involve another operation and this was just a few days after surgery so that is quite hard to handle. And so all of these things and I think I certainly started to find it really hard after surgery I was really feeling quite weak and emotional and how long do I need to be strong for because I’ve done everything in my power to be strong up until the point of the surgery and actually after the surgery was really difficult as well. Dealing with a baby with, you know, wounds and then the other thing we weren’st told until after the surgery was the bowel the bowel can shrink and I guess then you’sve got the scar tissue so it can shrink the skin surface so effectively [daughter’s] bowels could start shrinking and all the pipes could become thinner and she would be constipated, and that happened. You have to use a dilator with her every day which is like a metal thing that you poke up her bottom to make sure it doesn’st shrink but it did shrink. So then we had to and again the worst possible outcome there is more surgery to stretch the bowels. So we had to use a bigger dilator and do it more often and those things were really, really awful.

* Hernia
A hernia occurs when part of the body (usually the intestine) protrudes into a place where it should not be. An inguinal (groin) hernia in babies happens when a sac that joins the tummy to the scrotum or labia does not close, allowing the bowel (or ovary) to bulge into it.