So, she we were very lucky. She was in the neonatal intensive care unit for less than 24 hours which, for a 34 week gestation, is fab. She was only on oxygen till 2pm the next day; so she was born at ten to midnight; by 2pm the next day she was off oxygen and breathing comfortably by herself. There was sepsis found marginally in the cord so she was treated on antibiotics as well.

But she was again only on two days; all her tests started coming back really positively. Jaundice, but again most newborn babies I think have jaundice. She needed minimal light therapy; she had the box under her clothes rather than the intensive sort of lights over her cot.

Feeding was her main issue. So she was tube fed. She was in SCBU (Special Care Baby Unit) for eighteen days and she was tube fed pretty much up till the day before we were discharged. I got to go into a transitional care ward with her for five days prior to her discharge and that was purely to get me used to looking after her; her used to me being her sole carer, and also to get the feeding down to pat. The doctors had decided that she needed one constant person to feed. So we started doing one bottle, one tube, two bottles, one tube, so on and so forth.

Until one day she did just take to it and the very next day we got home.

OK

The doctors, when they were on their round, they’d come and be like, “We’ve only come to say hi, is she eating her bottle yet?” There was nothing physically wrong with her which again has been amazing. She was a great weight when she was born.

She was five pounds five.

Did drop down to fourto four and a half pounds within the week but we changed her formula then, she went on to premature formula which built her right back up.

Because even then we didn’st know whether he would actually make it. I guess that would have been good in hindsight if someone could tell us what the chances of survival were.

All we heard I think was the fact that he was born at 32 weeks and so therefore he has a the chances are good, but you don’st know what that means. And so I know my husband found it really hard to bond because, a) well they look like little aliens because they’re so small and they don’st look like human beings in the traditional sense. They don’st look like babies, they look like little aliens and he was very scared to see him. And you know part of you is always thinking, ‘Oh, well we don’st want to get too attached because he might not make it. And maybe the chances were 95% but we didn’st know this, so maybe that’s something to consider.

Mm mm. And do you think percentages would have been useful for you or how would?

Yeah definitely

Yeah

Because genuinely we had no idea whether he was going to make it or not. I’m sure the nurses knew but and also, now in hindsight, I know that if it was more serious he wouldn’st have even been in special baby care, he would have been in neonatal intensive.

Yeah, yeah

So, I guess the whole journey is an education in itself, and now looking back I’ve realised he was fortunate enough to have been born at 32 weeks and actually he was fine, but I didn’st know that at the time.

It’s not until I had the ultrasound scan later on that day, in kind of the afternoon/evening time, then I think it really set in that I’ve got a really sick baby and if he’d had a brain haemorrhage, that he really wasn’st going to make it.

[And the doctor] said, “When I’ve seen children in the past with this on their scans, they haven’t made it. And if they do make it, they have cerebral palsy and it is a life-long disability. They won’t get to live very old, and even if they do make it,” and then he said, “The quality of life will be-, it just won’t be great at all, if that’s what you’sre going to want to know,” and we did, we wanted him to base it on his experience of what he’s seen. And that kind of-, you know you can read stuff about it and but when you see someone who’s doing this day in, day out. It was good to have someone’s experience and I think that it kind of really helps you when you talk to people and say, “From my experience, this is what happened in the past and this is what is going to happen.”

[The hospital] said, “You couldwe couldn’st resuscitate him.” They said, “We can’t resuscitate babies under 500 grams,” and he was under 500 grams. And they said, “There’s a really slim chance he might make it through delivery and if he does he’s not going to live for very long.”

They were very good actually. They, they told us about, you know, obviously they can’st speak in specifics until a baby’s born, but they, they gave us information about a baby born at 29 weeks gestation, you know, the main concern that we have is for the lungs. I’sd had steroids already to already to address, you know, to certainly try and address that issue. They explained to us about some of the likely medication and machinery that, that you’sd probably have to go on and you know, how they would sort of deal, deal with the baby in theatre and then take her away and that sort of thing. So, and actually that was really good, because when, I didn’st see her for quite a while, because they wouldn’st let me off of the delivery suite. But when my husband went upstairs and they were using terms like, oh this is the CPAP machine’s, he knew what that was and why they were using it. He already knew that and although it was still a big shock for him to see, you know, our daughter in that sort of situation, he did understand what everything was, and why it was there. So I’m really glad that we had someone come and speak to us actually, because, I would, I think otherwise I would have just been completely freaked out and you know, what’s going on, sort of thing. But because they’sd talked to us about what you know, a baby at 29 weeks gestations is generally what their condition generally is, it wasn’st such a shock.

He answered any question I had. He explained to me things like our guts might not work right the hearts; it’s not really a hole in the heart the valve just doesn’st shut right he explained to what all that was, and he explained it was very common; explained it might happen, told me not to worry; in time it might shut itself or if it is it’s a little operation. I knew that anyway because my sister was premature herself and she they didn’st detect it when she was a baby but about four years ago she had the operation herself so I kind of I knew about it anyway. Any questions I had obviously like the shock of finding out, ‘Wait a minute, they might not live. I just assumed they all, over 24 weeks, would live. No, that’s not the case. And he explained the statistics; he went through the statistics if she was born at 25 weeks, 26, 27 and 28. He went through, you know the survival rate.

And that meant a lot to me because it wasn’st a case of, “Och just take this baby out now I’m not feeling well.” It was a, “This is your success rate if you could just hold on,” and I was like, yeah. He was a [doctor’s name] and a lovely, lovely man, it’s so approachable. And it was I didn’st feel I didn’st feel rushed.

When he came to see me it wasn’st like, “Oh I’ve got to go,” it wasn’st like that at all. He had time to sit in the ward and speak to me and answer any questions I may have. And he told things in a non-medical way if you know what I mean, he didn’st spit out garbled medical jargon at me; he actually spoke to me like a person so I would understand. And I have to say I found that in the hospital in general they were all like that. They didn’st bombard you with information you just went, “Pff don’st know.”

They spoke to you in terms that you would understand and that made a big difference especially when you are looking at an area in your life you just never thought you’d be in and you just don’st know anything about it so

I remember when he was born and I couldn’st hear anything, and they took him away [clears throat] -because I’m, I was, I, you could feel the sensation of them pulling, pulling about my stomach. And after a couple of minutes – and obviously you don’st know what they’sre doing down there – but I just remember saying, I haven’st heard him cry. And one of them just shouted, Oh, don’st worry, he’s fine. But they’sd taken him off. He had to be revived. He was very blue.

So he’sd already gone at that point?

He, well, he’sd gone over to the other side of the room where they revive them, sort of there. And I said to my husband, Look, just go over and check that he’s OK. Because even then I couldn’st hear him crying, and it wasn’st, he was doing this like whimpering sound. It wasn’st a proper hearty cry, and it was just awful, it was awful. And then my husband went over, had a look at him, came back and he said, Look, he’s fine, they’sre just sort of getting him ventilated and everything now. And then they, they brought him over. As they were walking out with him to take him, put him into the incubator, they just walked past me with him. And he looked – I sort of said, Can I have a quick look? and they just sort of put him down. I couldn’st hold him or anything, but they just showed me him, his head, and he, it was just this mass of black hair and it was just, it was wonderful. Most amazing thing ever. And then they took him off and. They took a photograph of him and they bring it up to you, because obviously I’sd had a caesarean so I couldn’st go straight down.

I thought he’d be there in the little cot when I got back, you know next to my bed because I think I’d been been sewn up and they went off he was off to the side and did he get wheel I can’t quite remember because, you know I was slightly away with the fairies after that point so I can’t remember if he got wheeled out or I got wheeled out first but yeah he wasn’st there and no-one had told me that he was going there until I got back so. But my husband got to go and take a picture and I think we got a little Bliss card or something and so I got to see a picture of him at least so yeah.

He needed CPAP.

And what’s that?

So, that’s like pressurised air. So, they didn’st intubate him which is putting a tube down his throat. They kept oxygen under his nose.

Yeah

Which basically is like pressurised air to keep his lungs open. And they give him a bit of oxygen with it, so they’re just assisting him with breathing, they’re not doing it for him.

Yeah

So, they’re doing a bit so he had to have that; he had to be in an incubator. And he had to have some like drips, like I can’t remember what it was called, but not food but as in like sugarylike a bit of like glucose and things yeah.

I didn’st know what chronic lung disease was. At all. I didn’st even know my daughter had it. It came about in conversation because she’d had the infection and we weren’t allowed her out for a cuddle, and I was very stressed, and her paediatrician consultant said to me, “Well it’s just, you know we’ve got to take extra care because she’s got chronic lung disease.”

And I never said anything, and I come out and I said to her dad, “What’s that?” And we’d been given a book, like a bible on having our prem baby. And it had allit was from Bliss and it had all these conditions in it now. See I can’t read that book. I don’st want to know, ‘Oh my goodness this could happen. I can’t I couldn’st deal with that. But when I found out what she had I went to that section of the book but I couldn’st read cerebral palsy. Well no I don’st want to know any of that.

I was never I mean I didn’st sleep anyway but it would have been worse had I all that going through my head. And so I read about chronic lung disease and then I asked the nurse; I spoke to the nurse about it. I think nurses are more approachable maybe than consultants, and she certainly was. She watched Imogen most days when she worked so I asked her and she explained things to me very good. Because, you know when the consultant said you know, “She’s got chronic lung disease and you may be we’re going to have to start thinking about preparing for her going on oxygen.”

How are we doing that then? So, it was good that that was all you know the nurse explained to me what all these things were going to be because I had no idea what that was.

Oh kangaroo care is the skin to skin. So, usually when they’re in neo-natal and they’re in intensive care they’re just usually in a nappy. And then they encourage you to take if you don’st feel comfortable but they encourage you to like put the baby down your top justeven for a full term baby skin to skin it’s the very first thing they try to encourage, so they try to encourage it as much as they can, and they just seem to settle. They’re meant to still be inside you so you’re the only person they really know, then all of a sudden they’re taken out their comfort zone; they’re not with mum; they’re put in this incubator OK it warms them up but it’s not really stimulating of their mum so when they’re on you they just they just seem to relax.

Mm mm. And did you feel that was very important for your bonding?

Yeah definitely. It’s hard for it to bond through I don’st know it’s just when you’re on your clothes and you’re cuddling her you just don’st seem to be close to her, but with kangaroo care then they’re on you; you can feel them breathing; you can smell them and then they give you mirrors as well, which when they first handed me a mirror like a little compact mirror I was like, ‘What’s that all about?’ But like you can’t see their face; they’re down here on you and then you hold the mirror and you get to actually to see them on you and that really helps because you can see to see how settled they are because when you’re not holding them down they’re quite fidgety; they’re trying to get comfortable, whereas when you’sve gotthey’re on you they just seem to relax, just like fall asleep on you.

Well, with vitamins, iron and something else we had to put in there; it was three different things we had to put in there. And it was more so important for her than it was for a full-term baby. They said they still have to add it in, and I think the other thing that pushed it a lot is when they have breast milk your antibodies, they pick up your they ingest your antibodies so they’re more likely to fight off infection. So when you’sve got this tiny little baby that hasn’st got the immune system that it should have because it was born early, I think that’s another reason that pushes you for it because you think you’re just trying to do anything to make sure that baby’s doesn’st have to end up back in hospital, because something as simple as a cold can send a prem baby back in and fighting for its life. So, I think you feel you have to, but then I also when I had to stop I thought, ‘No, she’s had what she needed to and the most important thing is she has a happy mum and she’s being fed; I don’st think she’s worried about anything else.