Everybody deals with everything differently really I’m quite a wear my heart on my sleeve so I like to talk, I’m a very emotional person I bottle things up, I bottle serious things up and then worry about silly little things really. but I would say, I’sd say always try to get as much information from the nurses, you don’st have to, I always found in the end if you’sre not happy about something, you need to say it because otherwise I’sve, I’sve gone home from the unit where I’sve not been happy about something that has happened or one of the nurses have upset me and I’sve sat on it and it’s really upset me and I got towards the end where I actually said something and I felt better for saying that cos I knew something needed to be done, or something wasn’st right and I think that instead of them worrying about Oh I don’st wanna say that cos they might’s you need to get it off your chest. Because you know that’s your baby and you know your baby and you know when they’sre not right, they know when they need mummy, you know, so yeah just I don’st know really, it’s hard because everyone deals with it differently so, yeah I found support groups really helpful but not everybody would do that, you know, [Partner], [Partner] wouldn’st speak to, to a support group, he’sd be like Oh no I’m not doing that.s but, you know, just, just try and get a good support network even if it’s one person even if it’s two people, you know, don’st, don’st let people, you know, he’s your baby, your journey people don’st, everybody in their life do not have to be on the NICU unit with you, you know, it’s about you, the dad and the baby and, you have to decide who you want to support you, who’s gonna be great cos you don’st want people making your life harder, so, you know, you need, you need good people around you.

We’sll treat Bobby like he’s our, you know, we’sll look after him’s and, you know, having, it’s a horrible feeling because you can’st, when you have a baby, if you haven’st had a child before I don’st think you kind of understand it but when you’sve had your baby you want to protect that child more than anything, you want, and when you can’st and that control is taken away from you it’s awful because you see your baby poorly and there is absolutely nothing you can do about it and to sit there, you know, like I, I’m so lucky to have Bobby here today, you know, I know there’s parents out there that, that haven’st been as lucky as myself and [Partner] have been, you know, and you know, to sit there and think of losing your child is, is it’s awful, you know, me and [Partner] went through hell because we, we sat there and, you know, we were kind of like is he gonna be alright and we didn’st know, you know. That’s the thing when you constantly want someone to say yeah He’s gonna be alright, he’s gonna come home’s and they don’st, I think that’s the most frustrating thing and they’sre right too because they can’st give false hopes but, you know, you’sre constantly looking for that person to go Yeah he’s gonna be fine, you’sre gonna take him home and he’s gonna be absolutely fine’s because they, they don’st know that.

And do you ask, do you ask the question and they say I can’st tell you’s or is it just?

I think at first we did and like is Bobby gonna come home’s and stuff, and then we kind of realised they, they can’st tell us that kind of information because they don’st know, you know, Bobby was very lucky to recover from NEC and, and come out with what he come out with and be here now so. And as I was saying there’s been other babies that haven’st been quite as lucky as Bobby but, you know, we, we’sre very lucky that we had a very dedicated team. [Women and children’s hospital] were amazing they’sre very busy, it’s a very busy unit and it’s hard for parents because the nurses change all the time, it’s very busy, the doctors change all the time, you know, but it’s, it’s very, it’s that’s the specialist kind of unit it is because they do take very poorly babies because they’sve got surgical there.

But irrelevant to that it’s not about the money but I don’st think people realise how it affects everything. You know, I mean I lost pretty much four months full time wage so that has a major affects when you’sre getting ready to have a baby- four months is a lot of full time wage to lose because you’sre planning, all your planning times gone, you know, I mean it was lucky that we had certain bits but, you know, and then we just put everybody on stop, cos every time we seemed to do something or buy something Bobby took a turn for the worse so then I barred anybody from buying anything, you know, and, you know, we just didn’st have anything because we just, you know, we bought a bit at a time but it does, it does mount up especially when you’sre not getting a full time wage and I do think that that should change. I do think, for, because there is benefits you can get out there but because me and [Partner] both work full time we’sre not entitled to any, so, you know, I mean we do, we do get some money now for Bobby because of certain things that’s up with Bobby but, you know, that’s only because of the fact Bobby has complex needs but not because we get any other, you know because we earn too much which I think is, realistically we don’st because I’m on maternity leave so I only get bog standard SMP so.

Yes I was, I had to go on maternity leave the day after I had Bobby which was difficult, I know you’sre probably aware that there’s a big petition at the moment to try and end try and increase the amount of leave that mums have and get paid longer for maternity because theoretically Bobby came home in August and I’sve got to start thinking about going back to work in January so that’s four months with my baby who was born 14 weeks early and so, you know, kind of five or six months of my maternity leave was spent in hospital so, you know, that’s no time, it’s not enough time. You know, cos my days were spent, not every day is spent having quality lovely time, going to baby groups going out for walks spending family time with [Partner], some of that’s spent in hospital, you know, and Bobby has between, between two and five appointments a week and he has done ever since he’s come home. This week he had 1, 2, 3, 4 appointments, we only cancelled a couple because of circumstances, next week Bobby’s got three or four appointments and you know, its’s kind of like that every week really, you know, we have physio appointments, we have dietician appointments we go and see Bobby’s surgical team, we go and see Bobby’s consultant his neo-natal consultant. We’sre going for a cardiology appointment, you know, were going to [Women and children’s hospital] we’sre going to [smaller hospital], we’sre going to [City] hospital, you know, it’s full on.

Well they told us not to Google from day dot, it was like Don’st Google’s but you do. When Bobby got NEC we Googled and wished we hadn’st cos it was just like, oh goodness, made us worse. But the hospital gave us a lot of information they gave us like when, they gave us this pack when Bobby was first admitted onto [smaller hospital] when he was first born with different things in. There’s like a BLISS group that you can go through, there’s all different types of places you can get support from but you’sre better off getting like from BLISS or from actual support groups that are kind- and that you know are proper support groups. You know, and talking to other parents on the units, nurses that, you know, that was quite good to get that kind of information from. So yeah, there is information out there but it’s the right information because when you Google you get, you get forums where people talk about their experiences but it’s not necessarily, every baby’s is different, you know, there’s like a lot of babies do get reflux but every baby reacts on different medications differently so you can talk to forums on what worked for you but that’s not necessarily might work for somebody else but, you know, it’s there’s lots of things out there really it’s just looking.

We did actually yeah but we did they actually came, we literally, we’sd literally were just walking off the unit and I got to, she doubled back one of the surgeons doubled back and come to get me and said, It’s gone really, really well and, you know, we managed not to have the stoma, we’sre all really happy about that’s and, you know, they, they were amazing, they were to be fair they came up, up to see Bobby every day and you know that wasn’st just kind of the, that was the people, the top, top surgeons that had Bobby, yeah they were good they came to see Bobby every day they, they included us, they spoke to us they asked us if we were worried about anything you know, cos we know Bobby, you know, we know his little ticks and, you know, yeah they were very good you know, really.

So, you know, I don’st think anything could ever, we came down to earth with quite a big bump [laughs] it was awful I was like I just didn’st, I didn’st enjoy having Bobby home at all. I loved him and it was great but I was on pins, I was anxious I was really emotional it was awful, now totally different it’s like, you know, it’s having well it’s not having a normal baby really, cos you’sve got a multitude of appointments and people coming to see you and stuff, added things that you usually wouldn’st have but it is nice now cos you can go out and you feel, do things normal’s as possible so.

And how many weeks has that taken you to get to, how many weeks have you been home?

Bobby’s been home since the 20th August so he’s been home just shy of two months so it’s taken me two months really, actually it’s probably the last kind of four weeks that I’m actually started to enjoy Bobby really and go to baby groups and do bits and bobs that you do, you know, Baby Sensation and Sing Along with Baby and stuff like that and going out properly and yeah.

Yes and no I mean getting home it’s like, like learning to drive a car you don’st learn to drive a car until you’sve actually passed your test and go out on your own do you. So it’s kind of that’s, that’s how it’s been cos I’sve learnt myself to know how to deal with Bobby and, you know, cos being home and being in hospital is two different things you’sre going out you’sre getting up you’sre doing different things, you know, it’s very, it’s very different to being in a hospital environment where if you’sve got to go off, you can say Oh, can you just feed Bobby for me or,’s you know, it’s very different cos Bobby’s, Bobby’s here full stop so, you know, it’s, it’s a whole different ball game, you learn to, yeah you learn yourself really, there’s no kind of right or wrong way I don’st think really cos every baby’s different they all have their own, their own different needs, you know, like Bobby does, you know.

My anxiety levels have been awful really it’s been hard for everybody because I’sve been up and down emotionally. I actually currently are having what is called Conditional Behavioural Therapy because I’sve basically got post-traumatic stress from Bobby. When Bobby first came home feeding Bobby was awful I remember going to the doctor and saying I feel,’s how I felt, and they were like you need to kind of take yourself away from what’s making you anxious and I said Well one of them things is feeding my son’s because Bobby had quite a big choking incident on me and it was, it was, I was just on pins, I was just on pins all the time, with his breathing, with his feeding, his sleeping it was awful. And they were just like Are you going to hurt Bobby?’s Yes I am, yeah I’m gonna hurt my son [laugh] like no, of course I’m not gonna hurt him. But I’m just finding this ordeal quite hard, you know, and I thought – I was finding being on my own with Bobby quite hard I didn’st want to be on my own with Bobby, I was scared to death something, if something happened I was scared of him stopping breathing it was awful, horrible, horrible feeling and it’s just, you know, if Bobby makes, like now you get used to his noises, you know, when he’s cooing you know when he’s like grunting and just being a general baby but I didn’st know that that’s what it was, so yeah emotionally it’s hard.

Yeah and you were talking about the anxiety and the CBT, do you feel that now you’sre less anxious with him and that you’sre getting more confident or?

Yeah, yeah I don’st feel, I don’st feel as anxious with him and there are certain times where I just probably need to get myself a check and think Oh is he alright,’s you know, and you hear certain things but I think it’s all, I think you’sve got, I think sometimes you’sve just got to get a grip and look at yourself and look at him and I forget to do that sometimes and like [Partner] Will say will you just get a grip’s. Because I’m like Oh my god, oh is he alright, do you think he’s alright’s and you actually get yourself into a state where I think sometimes you’sve just got to stand back and look at him and think actually, you know, you’sve got good colour he’s looking at you, he’s feeding, you know, he’s doing all the things he should be doing so what are you worried about, you know. But yeah I do think it is getting easier but then probably something will happen and I’sll be back to stage 1 again.

So you feel like it’s very easy to go back to that stage?

I think if Bobby got poorly I think and he had to go to hospital which is potentially inevitable at some point, I think my anxiety would go back up again but I think, I imagine that every parent if their child has to go into hospital or is so poorly that they need intervention I imagine they would probably be very upset and anxious about it as well. But going into hospital is not a strange thing for us really, it’s the norm.

Yeah, yeah I do, I really like that the lady that’s doing, doing my therapy and she’s really, she’s really good and she’s younger which always helps because obviously I’sve had bereavement counselling in the past and the lady was amazing who did it but she was, she was a lot, lot older and it was hard for her to talk to because she was very old school and very much Well, you, you’sve kind of got to get on with it’s. She was amazing, she helped me through a really difficult time, but this is nice because she’s young and she knows what it’s like having a young family, she knows what it’s like going through, you know, cos it affected mine and [Partner]’s relationship, you know, we, we’sve been quite hard to live with each other because, you know, I get annoyed with him, he gets annoyed with me I’m fatigued because I’m up with Bobby, he’s you know, and it’s hard, it doesn’st, I don’st think people realise that it’s not just the stress of bringing home a baby it’s that aftermath of what you’sve had to go through and how Bobby is now. He is a normal baby of course he is, and he’s our baby but he does come with complications, you know, he comes with a shed load of appointments, he comes with, you know, his own health complications in himself, you know, I have to give Bobby, Bobby has meds every single day, you know, it’s not a normal, it’s normal for us and I wouldn’st change him for the world because Bobby’s Bobby but, you know, when you first get pregnant and you’sre having a baby and this is not, it’s not what you, what you think you’sre gonna be like, you know.

And where have you got support from?

Our families have been amazing you know, without families I think we would have been I think without our families because [Partner] had to work I’sve got to say my mum was absolutely amazing through it she’s been here for both, you know, for both me and [Partner], she’s great with Bobby now. She was kind of like my right hand man because obviously [Partner] couldn’st get the time off and she’s been great. But families in general have been absolutely amazing anyway – so they’sve been absolutely amazing our families. We’sve had a couple of good friends that have been the I’sve got to say the support group was absolutely great because they knew exactly what we were going through, they knew, they’sd been through it themselves, you know, it was, they were amazing really. The staff on the units were amazing, you know because they knew what was going on with Bobby they used to tell me off for monitor watching, they’sd be like Right, will you stop watching the monitor, I’m actually gonna turn that monitor away if you keep looking at it.s Because you do get obsessed with them, it’s so, you do get obsessed with them. But yeah, yeah it’s been, we’sve, sometimes it’s quite a personal journey to be honest because you, you, you know, the only other person that knows how you feel is, is [Partner] or you know and so yeah.

So we were able to dress him I was able to start breast feeding Bobby which was brilliant it was amazing you know, it was breast feeding, cos I’sd been expressing and if you ever speak to any NICU mum they always say the chore of expressing is like literally horrific it’s awful. it’s the worst- it’s the best thing because it’s the only thing you can do for your child but it is a chore by the end of it because you’sre expressing every two to three hours, you know, you haven’st got your baby with you which helps you produce your milk so you’sre like looking at photographs you’sre trying to, you’sre trying to, it’s just, it’s just awful really. But you’sre doing it for the greater good and to actually then get your baby to latch on is an amazing feeling cos you feel like you’sve done it all for a really good purpose. yeah we were basically getting ready to going home from nursery, the only reason he was there really was cos he had a broviac line in, he had a couple of blood transfusions then we got ready to go back to [Smaller hospital] and we got transferred back into the nursery, which-

And the breastfeeding did that just tell me about how important that was.

Massively like it was, I never realised that you can breast, I never realised that you can get milk out really so when they said Do you want to breastfeed’s I was like Yeah’s cos I just presumed that my milk would come in, I don’st know what I thought actually, I didn’st realise that it would come then. So I was like Yeah I wanna breastfeed but how am I gonna breastfeed will it kick in,’s I don’st know for some strange reason I thought that my body would kick in on August and I’sd just get all this milk, I didn’st, I don’st know why it must have just been from a baby moment I was having I suppose. But when, so when I started to get help to bring my milk out that was majorly important expressing became my life [laughs] really every three hours and once overnight and I did that solidly for like four months. The odd night I let myself sleep through cos you’sre just exhausted but yeah pretty much did that but obviously with stress when you’sre tired and if your diets not great, if you haven’st drunk enough it does affect your flow, it did me. And I tried to get my flow back up but it was just, it was just hard, cos I’sd been expressing for five months, you know, by now you should be weaning your baby technically and plus it’s not just expressing, it’s not just like a mum that’s had a newborn and she’s expressing because she can’st breastfeed at that point, I haven’st got Bobby’s smell I haven’st got Bobby there suckling and doing all the things that baby’s do to help you produce. And so I’m having to sit down here where I’m now, at 2 o’s clock in the morning with two pumps, freezing cold, [Partner] will have made me a cup of tea trying to, with a picture of Bobby up there, but you can’st do that anyway cos you know that he’s poorly so you’sre upset and you’sre like trying, it’s just, it’s, it’s just a whole different chore but you wanna do it cos you want him to have the best but I thought I would have had so much milk it would have done him until about two but we’sve gone through literally like five months with the expressed pumped milk, I had a freezer full my mum had a freezer full, we’sve gone through it in like six weeks, it’s just gone. And literally we’sve had to like slowly wean Bobby onto formula but yeah. I mean it’s like, I breastfed for a good two weeks, not solidly because obviously I wouldn’st be there overnight and they had a bottle to feed Bobby overnight but I just couldn’st, I couldn’st get my flow up enough to be able to breastfeed him, I’sd love to but I would have loved to have breastfed Bobby right up until he was weaned but unfortunately I couldn’st so.

And he was amazing [consultant], you know, he put us at ease he was a really, really lovely man I mean the whole, across both NICU* units, you know, the doctors, the consultants, the registrars, the nurses, you know, the, all the team on there, you know from the reception are amazing and you know you do become like a second family because they see you every day they see you at your worst they see you at your best, they see Bobby, you know, they get attached to Bobby cos you know, you spend 17 weeks in hospital you do get fond of the nurses because they’sre the only people that understand or kind of can relate to what you’sre going through. So these consultants I’sve always said were so lovely because they’sd stop and talk to us down the corridor, you know, How’s Bobby today’s and you don’st get that very often but Mr [Name] and I believed the other surgeon was Professor [Name] I want to say [Name-name] but he was very lovely, but they worked very closely together and I just remember when Bobby went back to [Women and children’s hospital] the second time as we walked down, and I’m like, you know, crying really upset cos I’m thinking goodness he’s got NEC* again why, why are you doing this to me. And I just remember Mr [Name] kind of leant up against Bobby’s incubator and he was like Do I look worried?’s and I was like there’s crying and No,’s he was like Cos I’m not, this isn’st NEC this is Post NEC Strictures and we will sort it.s And you just kind of feel totally at ease cos you feel like yeah you know, you’sve got him and because he knew Bobby it kind of put you at ease as well because he was like yeah Bring him over we’sll have a good look at him’s and stuff.

*Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.

* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.

I think because you’sre giving your baby, you’sve given your baby, you’sre giving your baby to people who are gonna cut into him and remove something from him, you know, you don’st expect that when you’sre, you know, when parents come out with this gorgeous new born baby and, you know, tired and stuff like that and, you know, that’s kind of like the norm, coming out with your baby who’s got a scar across his tummy, you know, and he’s got a scar here and, you know, and it’s quite hard really because, I mean I’m not bothered because, because it’s, I think that’s a war wound of how amazing my son’s been but you don’st want your baby to have to go through that. You know, but you know, that’s what it’s took to get Bobby where he is now but it’s hard because you’sre giving your baby to somebody who’s gonna, who’s gonna do something that’s quite, I mean he had major surgery and, you know, we could have lost him in that, you know, cos it could have been too much for him, it could have, you know, he had to be anaesthetic which is quite, quite dangerous in itself for a neo-nate really so, you know, yeah it was quite, quite hard really.

.we got another phone call after that week at about 3 o’s clock in the morning saying Bobby was, his tummy was distended he was having green aspirates and everything again. And they think he’sd got NEC* again and you’sre kind of thinking well, is this happening again, you know, how can we be so unlucky that, cos Bobby was actually dressed he was in half an incubator ready to go to nursery he was on optiflow so, you know, he was doing so, so, so well and he started to try and latch on which was amazing, you know, after so many weeks. So we went back over to [Women and children’s hospital] and basically after about a week they did loads of tests on Bobby and found that he had what was called Post NEC Strictures so that’s where Bobby’s bowel had from the infection had healed but where the scar tissue had kind of restricted Bobby’s bowel so it made it, although it kind of faeces could get through it had gone quite small. So they need to go in and they prepped us for, Bobby was having a stoma basically what they were gonna do was go in remove the bad part of Bobby’s bowel and then give it time to heal so they were gonna put a stoma in so he was going to end up with obviously his bowel outside of his body and then a bag.

* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.

Yeah they really were amazing, you know, don’st get me wrong we were there 17 weeks so there were times where things could have been improved like anybody, you know, I’m not, I mean I, I’m a nurse myself I’sve worked in many different sectors of nursing and I know mistakes happen, things do happen, it’s how it’s put right and I think, you know, we’sve had good experiences and we’sve had bad experiences but generally on the whole the staff are very, very dedicated to their job and they’sre genuinely, genuinely do care about your baby and that’s a lot, cos he is my baby and I think you forget that through this process because, and you have to remind yourself that that’s my baby. If I wanna cuddle him I’sll cuddle him, if I wanna change him I’sll charge him and, you know, the first nappy change is a big thing, you know, I mean I didn’st hold Bobby till he was six days old and, you know, to not hold your baby for six days is hard because you want to touch him you wanna protect him and I think when Bobby actually got NEC* I didn’st hold Bobby for 17 days in total, so that was hard.

* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.

So we went over to [Women and children’s hospital] for the first time and we had to go, that was awful because you got used to this really lovely unit where you knew the nurses, you know, they’sd been amazing they’sd seen you at that point at your worst, and you knew them they knew Bobby, to going to a massive unit at [Women and children’s hospital] where there was like eight rooms, you know, there’s, there’s the intensive care rooms they’sre kind of there’s like ten incubators in there and it’s so busy it’s ridiculous yes they’sre amazing at what they do but it’s so busy, so you’sre on pins cos this is your son and they know him and I know him and I knew all Bobby’s little niggles what used to bother him. So we ended up at [Women and children’s hospital] and the surgical team came to see Bobby and they were like Right we’sre just going to treat him conservatively at the moment and see how he goes on.s Bobby seemed to get better and made it onto basically over weeks, he was there for four weeks at this point and they were saying it was just the CRP just was, was going up and down kind of from about ten to 16 so they were happy with Bobby, sent Bobby back to [Smaller hospital] originally, and we were back there for a week then we got another phone call after that week at about 3 o’s clock in the morning saying Bobby was, his tummy was distended he was having green aspirates and everything again. And they think he’sd got NEC* again and you’sre kind of thinking well, is this, is this happening again, you know, how can we be so unlucky that, cos Bobby was actually dressed he was in half an incubator ready to go to nursery he was on optiflow so, you know, he was doing so, so, so well and he started to try and latch on which was amazing, you know, after so many weeks. So we went back over to [Women and children’s hospital] and basically after about a week they did loads of tests on Bobby and found that he had what was called Post NEC Strictures so that’s where Bobby’s bowel had from the infection had healed but where the scar tissue had kind of restricted Bobby’s bowel so it made it, although it kind of faeces could get through it had gone quite small. So they need to go in and they prepped us for, Bobby was having a stoma basically what they were gonna do was go in remove the bad part of Bobby’s bowel and then give it time to heal so they were gonna put a stoma in so he was going to end up with obviously his bowel outside of his body and then a bag.

* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.