So the hospital hotel, which is right beside the hospital, and there was a couple of different units. We went straight from being discharged from the first hospital, where I gave birth, into the hospital hotel and I stayed there while she was in ICU. And it was right beside and it was so important. A little thing but, you know, to meet some of the parents there, not necessarily talking about your children. What did you have for breakfast? Oh, what did you get? Those little bits of snippets of conversation that were normal. They weren’st normal because you were on a different plane but it was little bits of conversations. So there was five weeks we spent in the hospital in their hotel, what a great thing and then to be able to move on into her own room where I got to spend every night with her. Was so important. I think, you know, because one of the buzz words when you’sre pregnant and you’sre expecting is bonding with your child. Bonding with your child and when you have a hospital, baby in ICU, how do you bond with them? You know, you you’sre not there twenty four seven. You’sre not touching them, you know, you’sre touching them but you’sre not getting to hold them and I remember the first time I held my child probably more than other people would, you know, because that moment was so precious, you know. She was three weeks then and the nurse was on and said, my mum was there, and the nurse said, Would you like to hold her today? And I was, do you know, it was like Christmas.

So the nurses in, I guess I’m somebody that likes to be involved in things and kind of do things as soon as possible so the nurses in the neo-natal intensive care would kind of, would happily let me help or do pieces of the change. Because obviously, you know, especially when your baby’s in a little incubator anything you can do that involves touching them or bonding with them you want, you want to do. and so you have, you probably have the pad for the first week to ten days just while everything’s settled and also while they were kind of monitoring the output and obviously it’s not just about changing the nappy because they would often collect the output and weigh the output and things like that so there was kind of additional things you would, you would be doing as part of the, the nappy changing that were necessary for them to monitor him. So I think for me as well, I mean you’sre kind of getting used to dealing with the fragile little baby who, you know, is so little and then you kind of have this, you know, you’sre afraid of kind of tearing the wound of hurting something and then the stoma* would bleed and you kind of have to get used to the fact that it’s bleeding. But you just kind of, I felt like unless I kind of force myself to do it I’m never, I’m never going to, you know, kind of have to learn how to do it. I think it was made clear to me quite early as well that the process of getting him out I guess you always think how do I get him home how do I get him out. And I realised that I had to get comfortable with him in order to get him home and to be able to look after him at home I have to get used to this. And it was really funny because [nurse’s name] the stoma nurse always used to go Oh you’sll be so good at this, you’sll be telling me how to do it in a few weeks’s time, oh you’sll be so good at cutting out’s, because obviously, you know, you get onto the stage of cutting out. You’sll be telling me how it, how it best fixes’s, so and that did become true, you become a little expert in, because obviously you learn this because of his geometry and exactly where its fitted, a certain stoma bag wouldn’st stick very well because, you know it would be too near the kind of the curve of his stomach so, you know, it’s amazing how you do become a little expert in these things.

* Stoma
Surgeons may divide the bowel in an operation and bring the two ends out on to the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.

So the first few days of [Name]’s life I don’st even remember but then I remember starting expressing all this, you know, trying to get all this milk out for this baby that you’sre not beside that you can’st really see and your body’s expected to have all these hormones and produce milk for it and it just doesn’st really happen because this baby’s not there with you you’sre not actively being a mum and you’sre not doing the nappy changes and you’sre not doing the care and yeah it was just a, it was a really different scary and emotional experience that I hadn’st anticipated that part when I was pregnant and [Name] would have to stay in the hospital, I just assumed I would be able to stay with her. And we even went round the hospital and looked at where she’sd be staying and I didn’st once think there’s no bed and yet I knew that after, there was a place that I could stay called [Name] House, which is in the grounds but even in my head I still didn’st think I would have to leave her, I felt, I knew I was going to stay there at night time I just hadn’st put two and two together that actually that means that you can’st be there when [Name] wakes up in the middle of the night. I think you’sre so wrapped up in the medical needs of your baby and hoping that they, they’sre gonna be alive at the end of it that I just had thought about little things, I hadn’st anticipated that the little things would be the things that would matter, it would be the mummy things that had been so easy to do with my other children, they would be the things that would matter that I missed out on that I didn’st get to do. [Tears up]

* Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord.

Alix: Well this was the difficult thing that everybody had different, all the nurses had different way of dealing with [son] didn’st they.

Antonio: Yes.

Alix: Some people would, some people would call him by his name some people call him baby or baby [surname] the odd time they even got his sex wrong and said she instead of a he [laughter] things like that. Some people would have, it was a sort of incubator were the lid came off like this and sides because the sides come down as well and some people would have the lid up but the sides still up, some people would have the lid up and the sides, actually no they didn’st really have the sides down did they, some would have the lid right up and they would have the lid laid down.

Antonio: Yes.

Alix: I think you could also, I think it had wee doors within the, within the side, there were so many different combinations of what you could do with it and everybody did it differently and that was what was hard to deal with because whenever you came in you came into the unit through the doors and it was one cot and then it was [son] down in the corner and whenever you went in, you kind or knew how you’re day was going to go, if you saw the lid up you thought is it a good day we can sit there, rest on the edge, you know, just you can touch him or just see him or talk and know that he can he can hear us and we had books underneath you know we were reading to him all the time and then there’sd be days you’sd come in and the lid would be.

Antonio: Closed.

Alix: The top would be closed and you really couldn’st get, you really couldn’st get into him.

Was that because of his condition was poorer and that’s why it was closed?

Antonio: Not necessarily, so that was a constant, yeh.

Alix: Not necessarily it would be just people dealing with him in a different way. The first day he was there and the first nurse I think she ended up being my favourite because well she was the one who introduced us to everything and she had the lid up and she was yes and she was very positive and very caring and I felt very safe with [son] in her care then you’sd have other people who would say you know have the lid down you know, he’s a very sicky baby, you know, we need to have.

Antonio: Don’st even remove the blanket that was on top of him because of the light. Or don’st touch him.

Alix: The light and things, his eyes, his eyes were closed and he was a full term baby, now I can understand a pre-term baby, you know, would be much more sensitive because they were awake and, you know, there are lights in the ceilings and, I don’st know just things like that, I just wish there was a bit more.

Antonio: Consistency across the care.

And then went back the next day and then throughout the whole next couple of weeks I was sat next to the incubator and I felt like there was no point me being there whatsoever. The whole time, the whole six months that [son] was in hospital, this is going to sound like a really awful person, but I didn’st want to love him or attach myself to him in case something happened, it wasn’st until he came home that I felt that like motherly son bond, I think I put it all on hold in fact, emotions or love or affection even for [partner] went like literally I was just like a robot throughout the whole thing. Then he, I just, going back to, the thing is I was sat next to the incubator for like 12/13 hours a day, doing nothing. Like I would see the other mums reading stories to their kids to their baby in the incubator or one mum constantly like every couple of hours changed the teddies, rotated the teddies round the incubator cos that’s all you could do, you couldn’st do anything like you couldn’st feed him cos he wasn’st being fed the only thing I could do every three hours go and pump my breastmilk so they can freeze it so that when he was ready to take milk. All you do is put your hand through the hole in the incubator.

You weren’st allowed to pick him up.

No it wasn’st until [son] was two days old we got to hold him but even then he was on a pillow and he had wires and I was just like that like holding a doll basically and it was like quite awkward cos there was wires everywhere and yeah it was like that, like it didn’st feel like I was cuddling my child it felt like I was cuddling a doll, so. So, the whole thing was just a real like I don’st think until you’sve actually, you’sve done that and I think, I was young as well I just didn’st know how to take it so I was.

After we got out of that cloud bit, he basically he woke up and literally he was in a, as the capsules went down basically he woke up and he woke up smiling and it was, until that point even in neo-natal where I felt like there was no purpose me sitting next to him, next to like next to him cos I didn’st feel like a mum because you know there was doctors and nurses and everyone looking out for him and like there was only certain things I could actually, I couldn’st even change his nappy really cos he had so many wires and I felt frightened to. They all bath- like I couldn’st really help bath that much so I just couldn’st feed him I just felt like an ornament sat next to him and just felt like there was no point. Within that moment that he woke up and he started, like he started crying at first and then he saw me and he, like he started smiling and it was like I’sve got it on video and he actually could like hear my voice and like if I walked round the other side he’sd watch me walk round to the other side and it wasn’st until that day like I actually thought that I was there for a reason like yeah it was a lovely feeling for him to wake up smiling, it was lovely.

I mean I think I didn’st give myself enough a chance, while she was in there, to take the breaks, even though I felt that I could trust people. I still felt like it was the only thing I could do for her, is to be by her side and talking to her, or reading to her, singing and, you know. And I probably never shut up the whole time she was there [laughs]. I was at the bedside and I knew a lot about the nurses by the end and they about me. But I think it was for me I, you know, and who I am as a person. It was just about that control and it was the little control I did have and finding control when you don’st have any. Or finding a way to be helpful, when you’sre helpless.

I felt that I adapted to the whole like new world kind of quite quickly and quite well. I’sd obviously had that preparation of knowing where I was going but I sort of don’st know, it’s a difficult one because you’sve got no choice but to deal with it, where that’s your, if you don’st deal with it then it’s obviously something wrong with you like that’s your baby and you’sre gonna do everything you can for them so that’s all I could do for her was sit next to her bed, so that was all I could do. You don’st want her to be alone either so that’s what we had to learn was how to look after ourselves as well, like that’s one of the things we found difficult with was if we don’st go and have a meal then we’sre gonna starve but yet we can’st leave her and that’s one thing the nurses were really good at they told us to go away and have dinner like, look she’s sleeping she’s fine if anything happens we’sre gonna phone you and it would be like you can just walk away. When you’sre at home you can’st walk away you have to deal with a crying baby if you’sre eating or not but yeah looking after ourselves was hard just so we could look after her and once we kind of realised that if we didn’st look after ourselves then we can’st look after her either and that’s when we realised that you’sve got no other choice. And you’sre worth it every day [laughs].

Luke: Yes and just, you know, very much so they’sre saying, you know, we need to have access to him, which I completely understand and they want to be in a situation where they can rush in and do what they need to and, you know, I completely support that. but also I’m, I believe that physical contact is really important particularly when you have gone from an environment where you’sre actually being carried inside someone and can hear their heartbeat to being put into a very sterile environment and, you know, so yes we did, we did prevail. But he was then yes he was then moved to NICU and NICU was very much set up as the babies are in here, the parents are not and parents will come in and maybe visit for an hour at set times and, you know, kind of they got him set up and they said okay you can kind of go home now. It’s like well no we’sll be staying here with our baby they were like well you can’st sleep here. But obviously we hadn’st slept at that stage since and initially I stood and eventually they got a seat.

And why was that so important to you?

Luke: I think a whole number of reasons really I think…

Angie: Why was it important that we were there with Isac?

Yes and why, why was it important not to leave him at all?

Luke: First of all our starting point is attachment parenting is our start, so our parenting style is one where we are with our kids and support them. But I think, you know when you are going through the most traumatic stuff imaginable I think you have a right to have someone with you and I as an adult if I’m going through something really hard want to have someone, want to have someone with me and so for a child how much more important. And if he died which was a possibility, I wanted, I needed to be able to say at the end of that that I had been there for him that if I could do nothing else but watch over him that I had done so.

Do you think the staff understood that?

Luke: No.

Yeah, it was I had him obviously on a Thursday I couldn’st, I couldn’st get over the hospital until the Friday but I was quite a determined patient so within what six hours I was up and I was walking around because nothing at all was going to stop me. And the hospital they did absolute brilliant didn’st they, I must admit the care, like I said the care side was brilliant and they’sd actually got a nurse and they allowed me to go and see [son] the following day, so I went and visited [son] on the Friday. And that was the first time I was able to hold him and actually bond with him cos I mean I’sve gone 27 and a half hours without even seeing him, you know, Simon he obviously stayed at the one hospital I was in the other hospital see so I, I hadn’st just lost my baby then I’sd also lost my husband, you know, my partner, who was, we was in it together and on the night I was there I was, I mean I was on my own, you know, on that night and I hardly slept. And I’sll never forget sitting on the end of the bed and the midwife coming over I was absolutely sobbing my heart out and she was like Are you okay?’s and I was like ‘sNo,’s and I turned round and I said that I hated Simon because he was there he was with [son], I should have been there, do you know what I mean and, you know, there was that side of it and she was like It’s okay don’st worry.s And then that was when the very first time when you know, when she phoned up and she actually phoned up the children’s hospital to see how [son] was this was in the middle of the night, you know, I’sd already gone from 12 o’s clock in the afternoon until about it’s got have been easily one or two o’s clock in the morning when this all happened. You know, and all I say was, you know, he’s okay and that was it. But you know, she says oh, but then the following day I was up and about and I was like I need to go, I need to go and see him, I need to go and see him. So they got me a wheelchair and they organised this taxi with this nurse who came along with me and they took me over to see [son] and I spent, I spent about four hours there didn’st I, four or five hours there. The nurses showed me all-round the rooms and our bedroom and, you know, I was introduced to [son]’s main nurse and everything else like that so I actually felt being a part of it then. You know, as soon as I walked, you know, I was wheeled in a wheelchair, someone said right Simon this is what this machine does, this is what this machine does because obviously [son] he’sd got pipes and tubes and everything everywhere and you couldn’st see him for tubes and, you know, this that and the other. And that was the first time I’sd actually seen [son] for [son], I didn’st see the hernia or anything I seen him as a little boy, you know, as a baby. So, you know, I turned round and I asked the nurse I was like Can I hold him?’s cos that’s what I wanted to do I just wanted to just hold him that was it. So it took two of them didn’st it, it took two of them to get him out, two nurses to get him out and they put him on me and that was it there was no, there was no turning back then was there, it was, that was the point when I realised that we’sd got a fight but it, you know what I mean, it could have been a lot worse, you know when, when you’sre holding him that precious little bundle in your arms is like okay you know you’sve got this problem but that don’st matter cos you’sre here, you’sre here and that was all that mattered, you know, and you think to yourself but that feeling it was just I’sd finally been able to have a cuddle with him and, you know something that should have happened, for obvious reasons it couldn’t but, you know, it should have happened, you know, as soon as he was born and. Cos you still go back to the, the fact that the why me?, you know, and all that type of stuff and, you know, you think of all the other, other women, you know, they have their baby’s and they’sre perfectly healthy and you miss out on all of that and I will never be able to get that back but I don’st think I’sd have it any other way because, you know, he is an absolute buster he’s, you know, he’s a beautiful young man now, you know but it still, it still doesn’st make it any easier.

She got really severe oral aversion and wouldn’st let anyone near her face, she would scream every time you touched her face she didn’st even like being stroked or yeah because of the NG tube* and all of the, the needles and the, which is hard having a baby that, what do you do with babies you go and kiss then on their face and you touch them and you squeeze them and yeah [Name] didn’st want any of that. And because she was hooked up to so many monitors and drips and we couldn’st go more than, you couldn’st pick [Name] up and take her more than a meter away from the bed so [Name] had never seen sunshine, she’sd never seen sunshine she’sd never been outside she’sd only ever been in hospital lighting and hospital air and when she was transferred to the [Name] Hospital it was in the middle of the night [laughs] I was like Look [Name] stars’s, [Name] was like [puts head to one side and imitates heavy sleep and loud breathing] Oh, you can’st see the stars.s So yeah there was this one lovely moment where I had [Name] in the bath so they had to take her monitor off her and she was having her NG tube changed so she had nothing on and I realised she wasn’st attached to any tubes so before the nurse came back in the room I, Come on, come on [Name], come out’s, I whipped her out of the bath and Look’s, and held her up to the window and said Look it’s fresh air this is what the sky looks like, these are trees.s Yeah it was lovely yeah it was a bit of a, [gasp] we are eight weeks down the line and this is the first time I’sve ever held my baby when I’sve not had to worry about a tube or a wire or a, and I can show her outside all be it from a fourth floor window of a hospital but yes this is what outside looks like.

*Nasogastric (NG) tube
A tube placed through the nose into the stomach. This may be used to drain the stomach contents after surgery or to provide milk when babies are not able to feed fully by mouth.

Yeah, I think we just cope with things very differently and so I think it began when I was pregnant and I remember, I mean, you know, I was sixteen weeks when, when the diagnosis came in. So, you know, not long after I could feel the baby kicking and stuff. And, you know, when we had my first daughter, you know, my husband would, you know, give me a cuddle in bed at night. I would lie on my side and he would, you know, rub my bump and feel the baby kicking and stuff. And then, he had been doing that, although I suppose the baby probably wasn’st kicking at this stage and then as soon as we got the diagnosis, he stopped doing it. And I did call him on it and said, you know, that’s out of order because you can choose to withdraw from the baby, but I can’st [laughs].

And then I think because then I was pregnant, you know, and I was feeling that I needed to look in to funerals and things like that and he just, he just could not go there at all, and he’s much more, he’s, he’s quite an optimist. He’s got quite a sunny outlook on life and [laughs] I haven’st really, I’m quite a, I wouldn’st say I’m a pessimist.

But I do, I’m quite a realist I think and so that was just my way of coping, and I think it is difficult for men. But, you know, it’s, he could leave the situation and go to work and I couldn’st, you know. Because you’sre carrying the baby or you’sre, you know, you’sre the main carer and sorry, I feel a bit disloyal saying this stuff. But I think and, you know, when there was a big deal about him going home the night she was born and, which, you know, could have meant her being on her own, when she died, which just to me is I’m horrified thinking about it. And then he actually went back to work very quickly, when while she was still in intensive care, and she was only in intensive care for ten days. So he didn’st even take kind of proper paternity, and I think he’s very much a, he never wants to let anybody down.

So my take on it was that, I think what happened is he was so busy trying to make sure that our elder daughter was okay and that work were okay, that he kind of forgot about me a bit, and about our younger daughter. And I think he was holding himself back from our younger daughter a bit when she was, because I think that’s he difference – When you’sve been carrying a baby, even if the baby dies when it’s a few hours old, you’sve still loved that baby and given it all those vibes, if you’sve bonded. I mean, I know some mums just prevent themselves from doing that but I think that’s probably quite hard to do when it’s kicking and moving about inside you. So I think I already kind of had a relationship with the baby and I don’st think, and I think he held off from that.