But yeah it was an odd sensation, when I came home it was even harder because I’sd gone from knowing everything about her, how many breaths she took a minute, what her blood pressure was, what the temperature on her foot was, what the temperature on her head was, what her heart rate was, everything, to knowing nothing and I just couldn’st cope with it, could not cope with it because I just, I was just so, I just could not cope with not knowing that she was alright and she obviously had no routine because she’sd been in intensive care unit for six weeks or high dependency, it’s always, the lights always on aren’st they even when they dim the slightly the lights always on, you cry someone always comes, someone picks you up all the time someone checks on you. So at home she was like that and it was just hell she just had to, she never slept, she never slept in the day, she never slept at night and when I got back no-one had you know spoken about the fact that I didn’st produce enough milk cos I had, I’sd had enough stored up at that point and they were still giving it to her but I got home and I suddenly realised when I got home that I didn’st have enough milk from my stores, my frozen stuff and I wasn’st producing. So the second night in I didn’st have enough milk in my boobs to actually feed her and she was screaming and crying and I had some milk that had antibiotics in it which they told me probably was safe so I tried to give her that and she was sick and diarrhea everywhere and it was in the middle of the night. I was like didn’st know what to do, do I feed her and poison her or do I starve her cos I had nothing else and I was told not to give her normal formula because her bowel condition. So the next, so I starved her and had her crying all night and the next morning I took her straight to my GP and told them and they were like oh I don’st know what to give her so they prescribed her some disgusting Nutramigen, I think it was called, formula which I started to give her which she did drink she was so hungry but it’s not like, its’s not horrible.

So the community, the community nurse was aware we were leaving the hospital but all the other medical professionals that [Name] had in the hospital that we were supposed to get the community version of didn’st happen. So I spent the first three days after I was home ringing all these people thinking that’s my job that’s what I’m supposed to do when I get home. It wasn’st my job, I didn’st realise that yeah so that was, I found that really stressful, you’sre at home with a baby who has more medical needs than you can shake a stick at, a 12 year old, a toddler and six health professionals a day coming in your house, you can’st think straight. Then you get a delivery of about thirty boxes for all your medical needs and I’m thinking Where am I supposed to put them?’s And they all just piled up in the hallway, it was like a brick wall of boxes. And [Name] doesn’st sleep, [Name] sleeps about three hours a night and because she had gastroesophageal reflux disease she sleeps on my shoulder. So nobody slept, I remember coming home from hospital the first night with [Name] being really excited that she was home and thinking Thank God you’sre just home’s and then thinking, Right it’s time for meds, I can’st remember where I put the piece of paper for the meds’s so I had to ring the hospital What do I do about [Name]’s meds I know I only left about an hour ago but can you tell me what I’m supposed to do with [Name]’s medication please?’s And you’sre just landed with this baby who has all these medical needs two hours before you were in the hospital where you could say to someone My baby’s doing this can you get a doctor please,’s or What’s that for’s or My baby’s NG tube has come out can you put it back in please,’s and suddenly we had to do it all. When neither of us have barely any medical training whatsoever and you just get on with it and do it you don’st even think about it, you’sre so stressed, you just don’st think until a year down the line. God wasn’st that awful, wasn’st that first week awful?’s Nobody slept, nobody ate, cold cups of tea were left on the side for hours on end and it was almost a juxtaposed it had been so wonderful that we were at home with the other children and we were a family against all this awful medical stuff we knew we had to do and didn’st, I didn’st really feel that confident doing it, I was confident doing it in the hospital but its’s different being confident doing it an environment where you have lots of medical professionals to help you if you get stuck, to doing it by yourself at home, alone.

And [Name] wasn’st allowed out, for the first eight months of [Name]’s life we went down the street to Tesco’s and back and that was it, she wasn’st allowed to socialise with other children or other, because she was at such a risk of infection because of her lungs and her respiratory problems that the surgeon beforehand had told us wouldn’st exist, so we couldn’st take her out we couldn’st go anywhere, we had, we lived in between hospitals, we had about three or four hospital appointments a week, visits every day from medical professionals for about the first six months and we just didn’st go out we didn’st go anywhere, there wasn’st time.

Lucy: But our lives still revolved around rectal flush outs, because he had to have them twice a day because he couldn’st clear himself at all.

Jason: Yeah.

Lucy: Everything worked around that any time we wanted to go out, you know, it had to be 12 hour intervals so I think we used to do them at like 9 o’s clock didn’st we, used to try and do 9:00 and 9:00 so that if we needed help we could get someone round to help us. But they’sre relatively easy.

Jason: We didn’st need any help because he used to sleep through them.

Wow, okay

Jason: He didn’st struggle at all he quite enjoyed it didn’st he.

Lucy: Yeah. It’s weird though cos now when I think about it my mobility wouldn’st have been great at the time with being quite soon post-surgery but it wasn’st actually that complicated then was it when he was so little.

Jason: No.

Did you feel confident doing them, felt like you’sd been well trained in the hospital and?

Lucy: Yeah I’sve never been squeamish I’sve got a background in biology a bit of dissection and stuff and I’sve flushed out rat intestines in the past as part of my degree so it didn’st really faze me at all I was like alright, okay yeah I can do that we can give him a flush out on the dining room table.

Jason: No you always lead the flush outs I was the guy who was handing the bits.

Lucy: He passed everything to me.

Jason: Yeah.

Lucy: I always found it a little bit, it did freak me out a little bit when I pushed the tube and you could see it poking out the side of his stomach I was like.

Jason: You wondered if it hurt him.

Lucy: Yeah I was like oh I don’st like this but, because he was so relaxed and you could see the difference, you know, he went from having a massive extent, you know, distended tummy and you could see it going down while you were doing it so you knew that it was the best things for him and yeah if wasn’st too bad at all really, little bit messy at times.

Jason: No issue with it at all.

Lucy: I got competitive with how much we could get out didn’st we?

Jason: Yeah.

I think when you come home, never having been doing medication and doctors before having to suddenly deal with a lot of medication is very difficult and I think there is no follow up to that, there’s no-one to go How do you do these levels, do these levels need to go up, does he, can he start to come off them,’s it’s only if you’sre having an appointment with our specialist that they’sll look at it, nothings looked at in the meantime. And [son] was on a lot of medication so to suddenly be brought home and I’sve got pictures and it’s like so much of it, you know, and Vitamin A, Vitamin D, Vitamin K he needed liver medication, his reflux medication, heart medication there was so much and it’s hard to manage, no-one can say to you, do a plan, do this, you know, the best way to give medication is have a chart and you can tick off or anything, no-one gives you any plans of how to manage it. And I think when you first come home until you get into a routine that works for you that’s something really difficult and really scary because how do you know you’sve given them, you’sve given them a 100% right, no-one tells you how to pull it up no-one tells you you’sre doing the right dosage, no-one checks it so how do you know, and you do learn but that’s really hard and there’s no follow up to that, none and that’s difficult to manage.

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.

The high point throughout all this year was the 1st November for me because we took down all the emergency numbers from the fridge because my life had been literally a hospital bag packed and our fridge had, you have the surgeons number, there’s [children’s] Ward you know, all these out of hours numbers and the fridge is just one of those places kind of centre of the kitchen isn’st it and you’sre always looking at it, always on my mind. And just that day to be able to take down all the emergency numbers felt like we’sd really, it was a really good day I’sll never forget it.