And what was it that he needed to achieve before he was allowed out? Breathing on his own.

Breathing on his own at first he was still getting tube fed and then feeding and then there was sort of normal baby things that they need to achieve before they come out, feeding on the bottle.

And was that relatively easy or did it take a?

It took a little while but that was, that was fine, I think after he could breathe we were like this is normal baby stuff now and fine we were happy at that point we just couldn’st wait to get him home with us so we could get started.

Yes because it must have felt like everything had been on hold.

It was awful yes it’s, it’s but you see the people coming in with balloons and teddies and you think well that’s not going to happen. But I remember when we took [second son] home we were so relieved and excited we couldn’st wait to get him out of there but we were sitting in the car on the way home and I started sobbing and my husband was like, Are these happy tears?’s I was like half yes and half no. I’m so scared we have two little babies to actually look after now after all that and it was like we’sve got to deal with the practicalities now of actually looking after two babies which I think because we were so ravaged from the experience we were like how are we going to cope.

Yes, which of course I’m sure you did.

Yes, yes, you do.

To bring her home was about her tummy being closed up so the muscles and the skin, her, oh well you know, at least it had to all be back in, you know, slight risk of infection. And then also her breathing and, actually, I had prepared myself so much for the exomphalos* that I hadn’st, hadn’st thought about other issues. So the breathing, you know, it was, you know, there was a chance there’sd be other problems but I didn’st realise how much the breathing would be an issue. So it was really about her breathing on her own that was, you know, the, the hurdle we needed to reach and I could tell things were improving day by day, when I could bring her that little bit further. So it came to the point where there was less things attached to her. So I could move her that little bit, so I could hold her a little bit easier or there came a time when I could bring her to the bed on my own and that felt so normal. And it was such a, you know, a little thing. But I was so excited that I could take my baby to the bed and the nurses started letting me do some simple things or we’sd give her a bath. I remember the first time they let me take her out. I was so, we went to Baby Gap. To buy her a winter outfit. It was, she was born in September so we went home in December fifteenth, we took her home and I remember going out, taking her out of the hospital and bundling her up. And she still had a tube in and, you know, we were going into, into the store and people are gawking at this baby and we’sre in this really old fashioned pushchair that the hospital happened to have.

And, I’m pushing her along. I was just so happy. It was freezing that night, freezing. We had her totally wrapped up but I was like, this is so normal. We’sre going out, you know, taking my baby outside. The first time she’sd ever breathed air. So she was well enough that I could take her out and it just felt like, when we got that chance to go out, it was like, this is it. We’sre going home soon and I, but I tell you that date they said we could take her home, oh, just so incredible when you hear that, you know. It’s fearful. It brings out new fear but that, yes, it’s your chance. You’sve, you know, she’s done it. You know, you feel so proud of your child that you know you’sve done it. You’sve done it.

* 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.

I think there’s quite a refined protocol for preparing parents to come home so we done, we did some rooming in the nurses were very good as to helping me and giving me tips so by this time, stage [son] was on formula so you, obviously there’s one thing you know how to make up but there was also kind of them telling me, telling me how to manage that day to day like getting the bottles ready, making it most efficient and so, and I probably knew, I probably took advantage of them as well, you know, when you’sre discharged from hospital you just kind of, there’s two sides to that relationship. So you have all these very expert neo-natal nurses all who have slightly different styles of doing things as well and slightly different ways of swaddling the baby and holding the bottle and everything. So on one hand, you know, as a mum you kind of feel a little bit kind of intimidated and frustrated that you’sre being told to do one thing one way and then another way and then just, just why am I being corrected and I wouldn’st have this if I was at home and all that. But then you kind of look on the other side and say wow I’sve just got all these experts who I can just plug for information and tips and everything so I think probably in the last two weeks especially when we were in the last room, the special care room you’sre very much being trained for going home with your baby. So we, I think we were very much onto knowing exactly what we were going to do, I knew [son]’s routine I knew that it was best if we brought him home in a taxi at 5 0’s clock in the evening because then I can give him a bottle and then he tended to go down around 8.00 and everything I think had been planned in my own mind. And we’sd had time to get everything ready at home, get the bed ready get everything made up and almost like having his pyjamas ready before he left the hospital.

So he needed to be putting on weight and I guess also ready to be able to manage him with his, with the stoma at home as well. And that’s quite an interesting one because putting on weight is quite easy to define it’s, you know, daily weighing and him tolerating the milk and him, kind of him, you know, quite obviously putting on weight. I think parents think ready to manage the stoma at home is a slightly different thing because that’s not something they can probably tell you either with a test but I kind of understood that that, well he couldn’st come home really unless we could manage him at home. So and there isn’st any definition of when you’sre ready or when you can manage something because it’s not just being able to physically do something it’s also having the confidence in yourself to be able to do it as well and to be happy doing it. And also they’sre keen that both parents can do it as well which is harder say for my husband to get as much practice in doing it because he’s only able to nip into the hospital, you know, after the first couple of weeks he was only able to nip into the hospital after work.

Yes.

But, you know, it’s really important that both parents can manage, can empty a stoma bag can deal with the situation when a stoma bag falls off. I think probably, you know, just observation and also looking at my enthusiasm for managing it and dealing with the task. I would say I think it’s fair to say though it’s probably not a test because probably a test is on myself as well of these kind of almost saying to them yes I can do it now I’m happy doing it rather than them, you know, scoring me in the background. I’m sure there’s a degree of that and that’s necessary for the safe guarding of the child but I think, I think a lot of it is also me getting to a point where I was saying to them yes look I am happy about doing this why can’st you know, I should be able to do this at home.

And do they prepare you by having you in and stay for a few nights, is that right?

That’s right yes so we did the rooming in I found, I actually found the rooming in quite hard because I found just living in the hospital 24 hours very claustrophobic. Because I’m someone who likes, just needs to get out, get fresh air so I found that quite artificial. But I can understand why it works for some people, to be honest for me I found the whole experience quite, quite frustrating to be honest so I didn’st really feel I benefitted that much from it.

Michelle: Actually the transition to home we kind of gloss over was they were fantastic they have a couple of rooms that you can room in with your baby before you go home because actually it is really daunting despite having two other children we’sve never, we’sd never spent a night with him were he’s not in a box being supported by 24/7 nurses so.

Harry: That’s exactly it, you kind of get used to having that, I mean, the biggest safety blanket you can possibly imagine everywhere. So you’sre there you’sre doing the kind of tying up the nappies and kind of pressing a button to turn the alarm off if someone tells you to but actually you don’st have any responsibility.

Michelle: You’sre told when to feed and you’sre, if you have a question about why someone’s crying they’sre immediately there to help you so, you know, you don’st you learn not to think for yourself because all you are doing is supporting them rather than you having sole care of your child so you don’st actually feel, you’sre infantilised you don’st feel equipped to deal with that. So actually it was really helpful to have that night where they’sre just outside the door and you can, it’s quite odd isn’st it to think, you know, they transfer them to a separate little crib that you can kind of wheel into a room, feels quite strange when you’sre first in charge of them doesn’st it, quite scary.

Harry: And then you.

Michelle: Quite scary.

Harry: Yeah you just take him home.

Michelle: And then you take him home [laughs].

Must be terrifying [laugh].

Michelle: So it I, you know, it is quite scary but actually they, they very much encourage you as you go through, once you get out of ITU and you get into high dependency and certainly in SCBU they, you’sre totally encouraged to do as much care for your baby as you can, it’s your baby they’sre there to support you and to medically jump in if need be but don’st expect that they’sre there to feed and care for your baby because that’s your job. So, you know, they were very good and clear about that which was really helpful actually because it gives you the confidence to start taking over and to start trying to build, I mean I felt like I was kind of bonding with him when he was in there but you can only do it to a certain extent because they’sre attached to lots of wires and you need help to come and take them out and put them back in and you never have skin to skin contact with them because there’s too much going on. So actually you can only do that once you get home, I’sd never breastfed him until he came home so and by that stage he was two months old so it, you do have a big gap and it feels like everything is on hold until that point at which you bring him home. And it’s kind of a, you have a new born baby that is actually two months old so it’s quite an odd psychological thing to get your head around where you’sre dealing with someone who developmentally is older than their years if you see what I mean, you know. So you’sre starting from slightly differ point, you kind of hit pause for a couple of months.