And then I didn’t have any more bleeding for another four weeks, so you sort of start thinking oh this is a bit of a, a bit melodramatic and a bit of a joke and I think, you know, when I got too complacent, then they began to sort of say, you know, you know, you mustn’t do this, you must do this. And I think the words that stuck in my husband’s mind is the consultant said, You know, you’re a walking time bomb. And it’s a question of when, not i, and he explained just how quickly things could happen, if I was to have a massive bleed. And told us that the other side really could be too far. I think the words he used were, It would be curtains for your baby, and possibly for you And so that sort of went okay.

Is that what he explained that first day when he came to see you or was that later on?

That was later on. They did it very well. They explained the gravity of the situation but not in a way that would have complete I mean every time, it was almost like a drip feeding process. And I mean, it might not work for everyone, but it worked well for me, because it enabled me to process little things at a time, and you know, the paediatricians came and explained what would happen if the baby was born now, at that point. The anaesthetist came in and explained what he would do, and how the decision would be taken as to whether it would be general anaesthetic or whether it could be done by spinal block and you know, if the extent of my bleeding was massive, you know, whether I’d have to be heavily sedated and in intensive care for a number of days. And I remember they did explain from day one the possibility of a hysterectomy and all of that sort of thing. So

Is that what he explained that first day when he came to see you or was that later on?

That was later on. They did it very well. They explained the gravity of the situation but not in a way that would have complete I mean every time, it was almost like a drip feeding process. And I mean, it might not work for everyone, but it worked well for me, because it enabled me to process little things at a time, and you know, the paediatricians came and explained what would happen if the baby was born now, at that point. The anaesthetist came in and explained what he would do, and how the decision would be taken as to whether it would be general anaesthetic or whether it could be done by spinal block and you know, if the extent of my bleeding was massive, you know, whether I’d have to be heavily sedated and in Intensive Care for a number of days. And I remember they did explain from day one the possibility of a hysterectomy and all of that sort of thing.

It sounds like communication in the hospital was really good.

Excellent, yes.

Can you just describe that a bit more to me?

How they communicated with me?

Yes. How it worked.

Well they came to see me every day, a registrar or a consultant came to see me every day. I mean some days I felt really lonely in there to be honest. Because they’d come in, any bleeding. No. Fine. And they’d go. And I didn’t require any, anything else. I didn’t require. I mean they listened to the baby every couple of days. But I didn’t need that, if I was in the community, I wouldn’t be having that, or the blood pressure checked every day. So there were some days when I thought, oh I could be anywhere. And they were incredibly busy there. But when I needed things, you know, it was immediate and it was spot on and it was compassionate and took into account the whole family. They were amazing. And on my never ending list of things to do is to write to the chief executive, just, you know, people just always complain.

We had one incident where I felt a doctor had been, had come into the room and hadn’t introduced himself. So I had no idea whether he was a doctor or a cleaner. And that was the only time, the whole time in hospital that I’ve had any sort of remote, I mean, you know, the portering staff used to bring me a bacon sandwich every morning. Well, you know, I got a bit bored of their breakfast cereals. They were, I shouldn’t say that, I shall probably get them into trouble. They were outstanding and, you know, as I said before they sort of drip fed information which I found really helpful.

When there were bigger bleeds it was reiterated, so they went through the same procedure again. One time, it was, I think it was about two days before I ended up delivering. And a girlfriend was over there at the time, and this same consultant who gave me the first explanation was the one on call then. And he went through it again, and he drew diagrams of how they could do various hysterectomies and he left the room, and my girlfriend burst into tears. I said, What’s wrong And she said, This is so awful Oh, you know, you maybe get so blasé about it, but you know, the anaesthetist were great, they all, you know, they explain things very clearly. Matter of factly, which is what I needed. And then when they felt I was becoming a bit complacent then they would term things perhaps more strongly. But you know, ultimately everything was left down to me to you know, to the point where I wanted to go out for dinner one night, and he said, I can’t stop you, but the risks are no

Yes, it was hugely emotional coming, leaving. I can remember just getting to the waiting room and just bursting into tears and then getting into the car and having to sort of we’ve made it, we’ve made it. I can’t believe we’ve done it. We’ve done it.

And you know, I came in in September and all the leaves were on the trees and it was spring or early autumn, but it felt like spring and came home, and while we were in special care it was one of the really bad dumps of snow and I had to walk with my snow boots to sort of get to hospital and all the staff had been snowed in, and the season’s had changed and the Christmas lights were up and it was, you know, and I thought I’ve not driven a car, I haven’t eaten out, I haven’t you know, done anything normal for so long or been on my own which was really. And that was a long time before I was on my own. I think that was when I went to get my hair cut and I thought. I mean you’ve been in hospital and in a bizarre way that was a very lonely thing, even thought people are around you all the time. But, to physically not be encumbered in any way. It was a very, you know, you come home and things were actually in the right place and that’s not how I would have done it [laughs]. So, I had to get a grip. But it was lovely you know, being in, and it was a really special Christmas. It was a very intimate Christmas but it was you know, you are a lot more grateful for what you’ve got [laughs].

And has, you sort of touched on, on sort of whether people sort of move on. Have you kind of thought about counselling or kind of anyone to help you?

Yes, we have talked about. I think it probably would be really useful, because it’s the sort of thing where you do feel a bit ungrateful talking to other people. And you know, I keep in contact with some of the girls from special care who have got a lot more poorly babies than we have. I mean [second daughter]’s absolutely fine. So you feel a bit self-indulgent talking about it to people like that and you know, I mean, they will always be someone worse off. I think it probably would be really helpful, especially for [husband] I think, because men don’t tend to talk about it, and you know, I got, I got the sympathy and I got the oh this and that. But it was sometimes it was, people would say things like, Oh you must have been so bored And I’d think you really didn’t understand. Yes, I was. But gosh that wasn’t [laughs] what made it hard. It was that, and I, constant state of anxiety and that, I don’t think that went until [second daughter] had reached her due date, got over that first illness in, so probably really only a month ago, that sense of anxiety. Obviously it’s not as heightened as it was while I was in hospital, but it’s a long time to live with that feeling of. Oh my gosh. And I don’t think at the time I voiced it in my own head. it’s not now until I think I could have died. She could have died. We both could have died, and even now saying that, I feel slightly melodramatic saying it [laughs]. You sort of think gosh, you just should be grateful, but
I mean I guess four months is really not very long.

No, no.

it’s a bit like throwing a stone in a pond and the ripples just, the initial ripples are quite strong and then they sort of dissipate. But from time to, time to time, you know, you’re still getting a few little, you know. I think it’s been incredibly hard on my husband. I mean I don’t think anyone, prioritised him as much as perhaps he ought to have been. I was always very conscious. But you know, he was trying to hold down a very demanding full time job. He had his Mother in law living in his house for months on end. He was looking after his daughter. He was, you know, incredibly worried that, you know, his worst nightmare was to lose both of us. And then be left to raise [first daughter] on his own. And I think, men aren’t so good at talking about things, and I also think when it’s over. We are, don’t get me wrong, so grateful. People think oh well it’s done now. Everything’s back and everything’s worked out in the end di da di da di da. And I don’t think that, you know, they acknowledge how difficult it was or how, how far reaching. You know, and both of us, if we watch something on the telly about a premature baby you know, ohhh and you think there, but for the grace of God, with a lot of them, you know, and so, you know, I am in awe of my husband and of my daughter really.

And how was it coping with your daughter when she was coming to see you in hospital?

It was awful. It was absolutely awful, saying goodbye to her. That first night I was just [laughs] she was so little, she was only two still, and I can remember walking back and just being in floods of tears, and again the same lovely midwife just say, Oh you know, it’s so hard to be a Mum So
Okay.

And I just felt I missed out on so much. You know, when I got home, just in those few weeks, oh ten weeks, she’d grown up so much, and I so wanted to spend some time with her and do some nice things before the baby came and we didn’t do any of that so and just little things. She got glasses while I was in hospital. You know, I made my husband pick up samples and bring them in so that I could approve them [laughs]. But it’s things like that, just, just everyday life really. But, you know, she was amazing. I’m so proud of her. Even though she just really on the whole, didn’t, didn’t drop stride and afterwards, I think, you know, even now she’ll sometimes make some comment, I would have thought by now, it’s such a long time ago, that it might have, but she still remembers it quite clearly about, you know, which is your hospital and, and I think when I had my six week check with the GP, I left her with my neighbour just while I went down, and I said, I’m just going to the doctor. I’ll be back You know, and I’ll be back. You stay here with [name] and play And she just lost it. No

Because we’d explained things in very simplistic terms. So I had to explain to her, I’m not going to hospital She said to me, You promised you wouldn’t go back to the hospital And you know, so that was, and we explained things very basically, so when [second daughter] was born and we’d said to her, Mummy has to be in hospital until the baby comes out of mummy’s tummy and all the rest of it And so as soon as [second daughter] was born, she said, Well, why aren’t you home? Come on [Laughs]. And you think oh gosh.

And we had, when [second daughter] came out of special care, we had to stay over again, and trying to explain to her, that I had to go back in, even though it would only be a short I mean, she got so upset, she just screamed and screamed and gave herself a nosebleed in the hospital [laughs].

It was just, but you know, I mean they’re resilient and, I think to be honest it hurt me more than it hurt her [laughs]. I think.

Yes, I mean they asked inbut I guess in mean that context I was fairly adamant that I didn’t want any more. And part of me, I did have a discussion with the midwife about whether I should ask to be sterilized at the same time, and she said sort of said, Well everything is really raw first of all. And second of all your body’s been through enough. I don’t think we should do an unnecessary, not an unnecessary, but you know, an elective procedure when it’s potentially going to go through something on a more emergency basis And there’s something very final about that. As much as we say we don’t want, and we don’t, and I can’t imagine we will. I would like it to be my choice rather [laughs] than forced on me. And that’s how we felt about the hysterectomy I think. You know, if it happened, it happened, but it’s not going to be the end of the world, but yes.

Is that what he explained that first day when he came to see you or was that later on?

That was later on. They did it very well. They explained the gravity of the situation but not in a way that would have completeI mean every time, it was almost like a drip feeding process. And I mean, it might not work for everyone, but it worked well for me, because it enabled me to process little things at a time, and you know, the paediatricians came and explained what would happen if the baby was born now, at that point. The anaesthetist came in and explained what he would do, and how the decision would be taken as to whether it would be general anaesthetic or whether it could be done by spinal block and you know, if the extent of my bleeding was massive, you know, whether I’d have to be heavily sedated and in Intensive Care for a number of days. And I remember they did explain from day one the possibility of a hysterectomy and all of that sort of thing. So
It sounds like communication in the hospital was really good.

Excellent, yes.

Can you just describe that a bit more to me?

How they communicated with me?

Yes. What, what, how it worked.

Well they came to see me every, a registrar or a consultant came to see me every day. I mean some days I felt really lonely in there to be honest. Because they’d come in, any bleeding. No. Fine. And they’d go. And I didn’t require any, anything else. I didn’t require. I mean they listened to the baby every couple of days. But I didn’t need that, if I was in the community, I wouldn’t be having that, or the blood pressure checked every day. So there were some days when I thought, oh I could be anywhere. And they were incredibly busy there. But when I needed things, you know, it was immediate and it was spot on and it was compassionate and it took into account the whole family. They were amazing. And on my never ending list of things to do is to write to the chief executive, just, you know, people always complain and I justnbsp;

We had one incident where I felt a doctor had been, had come into the room and hadn’t introduced himself. So I had no idea whether he was a doctor or a cleaner. And that was the only time, the whole time in hospital that I’ve had any, any sort of remote, I mean, you know, the portering staff used to bring me a bacon sandwich every morning. Well, you know, I got a bit bored of their breakfast cereals. They were, I shouldn’t say that, I shall probably get them into trouble. They were outstanding and, you know, as I said before they sort of drip fed information which I found really helpful.

When there were bigger bleeds it was reiterated, so they went through the same procedure again. One time, it was, I think it was two, it was about two days before I ended up delivering. And a girlfriend was over there at the time, and this same consultant who gave me the first explanation was the one on call then. And he went through it again, and he drew diagrams of how they could do various hysterectomies and he left the room, and my girlfriend burst into tears. I said, What’s wrong And she said, This is so awful Oh, you know, you may be get so blasé about it, but you know, the anaesthetist were great, they all, you know, they explain things very clearly. Matter of factly, which is what I needed. And then when they felt I was becoming a bit complacent then they would term things perhaps more strongly. But you know, ultimately everything was left down to me to you know, to the point where I wanted to go out for d

And what was the value of being informed? Did that help you cope with it better or

Yes. It enabled me to understand where they were coming from really. Because you do sort of get, well surely this is a bit over the top, and I guess because the bleeds I had weren’t particularly big bleeds. You think, well, you know, I got here. If it happens again I’ll just come back. Andit was that one explanation from the midwife that said, you know, when she talked about the blood dripping onto the floor and then I think [doctor] saying the last patient he had who had a big one like this was, he said, He’d been on that night, she said do I really have to stay And he saidWell it’s up to you, I think you ought to And he said he went home, and before he got home he got a call, Come back. She’s had a massive bleed And she’d lost half the circulation to her body or something by the timeSo it’s those sorts of stories that you think oh well okay that makes sense. And you know, he said to me, We probably see one grade four a year. You know, it’s not as if itwe’rerdquo; You know, but you feel a bit guilty wasting public funds and a room and it could beIt was funny, they would do the hospital tours to the expectant parents, and I’ve obviously I heard about five of them a week and they were coming round, and as they walked past my end of the ward. This is the ante natal room. You might have to come in, stay for a couple of nights if you’ve got high blood pressure and then you get to go home And if felt like you know, no it’s a lie, they keep you here forever [laughs].

When she was born, they wrapped her up and they brought over to me quickly just to sort of touch her, and they said, Can youou can hear that she’s grunting a bit, which means that struggling to breathe a bit. So we need to take her down. So they took her down. [Husband] stayed with me for a bit while they sewed me up. And then I went back into the labour ward and he, the midwife then took him down to special care with [daughter].

And she was doing fine initially, and at 34 weeks they didn’t think that she would necessarily have that much trouble breathing. I’d had the steroid injections the first time I came in, and then I think at 32 weeks I’d had all the steroids to try and mature her lungs and on the, I’d been having growth scans every two weeks.

They thought she was quite a healthy weight soI wasn’t, which again sounds a bit naïve that worried about how she was going to be. I thoughtand I think because they’d also taken us down to show us special care very early on and when we went on there had been a baby that had been born. She was the exact same gestational age, but she’d already been born at 26 weeks and so her parents very kindly gave us permission to have a look at her. She happened to have the same name as our elder daughter, which sort of freaked us out a bit, but so we’d seen what a 26 weeker looked like. And then, they showed us a 32 and there was such a massive difference. And they kept re-iterating every, you know, every day makes a difference at this age. So, I sort of thought we were going to be fine really. We were fine ultimately, but she had a few more problems breathing than they had envisaged her. But it, it turned out to be the exact right time, because of the antibodies that I have had also started attacking her red blood cells. So she needed to come out then, regardless really of, of the placenta issue sonbsp;

Yes, it was hugely emotional coming, leaving. I can remember just getting to the waiting room and just bursting into tears and then getting into the car and having to sort of [does short puffs out through mouth] we’ve made it, we’ve made it. I can’t believe we’ve done it. We’ve done it.

And you know, I came in September and all the leaves were on the trees and it was spring or early autumn, but it felt like spring and came home, and while we were in special care it was one of the really bad dumps of snow and I had to walk with my snow boots to sort of get to hospital and all the staff had been snowed in, and the season’s had changed and the Christmas lights were up and it was, you know, and I thought I’ve not driven a car, I haven’t eaten out, I haven’t you know, done anything normal for so long or been on my own which was really. And that was a long time before I was on my own. I think that was when I went to get my hair cut and I thought. I mean you’ve been in hospital and in a bizarre way that was a very lonely thing, even thought people are around you all the time. But, to physically not be encumbered in any way. It was a very, you know, you come home and things were actually in the right place and that’s not how I would have done it [laughs]. So I had to get a grip. But it was lovely you know, being in, and it was a really special Christmas. It was a very intimate Christmas but it was you know, you are a lot more grateful for what you’ve got [laughs].

I don’t know how much of that’s just coincidence or your sub conscious but I’d done all of that, and then I was 26 weeks 26 + 2 I was, on that Saturday and my husband had gone to Spain on a stag weekend [laughs] and I was walking my daughter in the buggy in town coming up that big hill you came up today [laughs] and I could feel blood running down my leg.

And so I gotoh and [first daughter] said to me, Mummy why are walking so fast? And why are you crying And I was like, No, I’m fine, I’m fine. Mummy’s just a bit scared Why are you scared And then she sort of followed me into the bathroom and I was like, No, no, no. Mummy needs to go on her own And so I called the hospital, and they said, you know, to come in now. So I had to tryI couldn’t get hold of anyone. My husband was away and your mind goes a bit blank.

So I thought I’ll ring my Mother-law and she was in London which was, you know, instead of ringing friends locally. I couldn’t get hold of her, I couldn’t hold of my Father-law. couldn’t get hold of my brother-law and ended up leaving [first daughter] with a neighbour across the road and just driving myself to hospital and then the hospital called me on the way and said, you know, Are you on your way I said, Yes, I’m just trying to find money for the parking meter And they said, Well can’t the driver sort that out? You need to come up here And I was like, Well no, I drove myself i [laughs]. You should have got an ambulance Oh well you didn’t tell me tha [laughs].

And by which time, I managed to get hold of my Mother-law, so she arranged to come down to be with me. My Father-law came back to pick up [first daughter] and take her back to London with him. And sort of went into hospital. They strapped up to all the monitors, the midwife said, You know, calm down, your heart rate’s nearly as fast as your baby’ [laughs]. And so they checked the extent of the bleeding and all the rest of it, and then sent me down for a scan. And then diagnosed it as a grade four, placenta praevia then.

Sent the paediatrician in, and I, even then, had absolutely no comprehension at that time that the baby might come that day, and so, What are yourdquo; And by that time, my Mother-law thankfully got there, so there was someone with me. I still hadn’t even got hold of my husband at that point.

So he got back in the wee hours of the morning and got home just in time to see the consultant the next day, who was absolutely brilliant at explaining things. He was, both times, he came in much later in the piece because my consultant was off sick when the decision was made to do the procedure and explained everything again and his explanations were brilliant.

And I mean, so he came in, I got transferred to a private room and that was sort of it. They said, Make yourself at home. Why don’t you bring your own duvet in So we you know, started putting pic you know, my daughter’s drawings on the wall, and I had my own pillows and duvets and trying to, to make it as homely as you could. And then it was just sort of getting through it.

And then I didn’t have any more bleeding for another four weeks, so you sort of start thinking oh this is a bit of a, a bit melodramatic and a bit of a joke and I think, you know, when I got too complacent, then they began to sort of say, you know, you mustn’t do this, you must do this. And I think the words that stuck in m

When she was born, they wrapped her up and they brought over to me quickly just to sort of touch her, and they said, Can youYou can hear that she’s grunting a bit, which means that struggling to breath a bit. So we need to take her down. So they took her down. [Husband] stayed with me for a bit while they sewed me up. And then I went back into the labour ward and he, the midwife then took him down to special care with [second daughter].

And she was doing fine initially, and at 34 weeks they didn’t think that she would necessarily have that much trouble breathing. I’d had the steroid injections the first time I came in, and then I think at 32 weeks I’d had all the steroids to try and mature her lungs and on the, I’d been having growth scans every two weeks.

They thought she was quite a healthy weight soI wasn’t, which again sounds a bit naïve that worried about how she was going to be. I thoughtand I think because they’d also taken us down to show us special care very early on and when we went on there had been a baby that had been born. She was the exact same gestational age, but she’d already been born at 26 weeks and so her parents very kindly gave us permission to have a look at her. She happened to have the same name as our elder daughter, which sort of freaked us out a bit, but so we’d seen what a 26 weeker looked like. And then, they showed us a 32 and there was such a massive difference. And they kept re-iterating every, you know, every day makes a difference at this age. So, I sort of thought we were going to be fine really. We were fine ultimately, but she had a few more problems breathing than they had envisaged her. But it, it turned out to be the exact right time, because of the antibodies that I have had also started attacking her red blood cells. So she needed to come out then, regardless really of, of the placenta issue so
So she was breathing on her own, and we thought everything was fine, so we sent the email out saying, O And she was five two, which was a really good weight for 34 weeks and then they came to, this is where it gets blurry for me, because I had quite a lot ofthey gave me Oramorph as a painkiller and it made me gobecause they couldn’t give the normal painkillers that they give a suppository because of the risk of haemorrhage still. And then they forgot that they hadn’t given me any, and I said, it’s actually really starting to hurt now So they gave, and the Oramorph just made me go completely dolally. I felt like I had tourettes. I was about to start shouting obscenities and I felt like I’d drunk about five bottles of wine, and I was going to So I asked them to stop that, but it, those first two days were a bit of blur, but the Friday the paediatrician said that she was starting to become unwell and that she was going to need some help breathing and that she would need a blood transfusion. And so they put her in CPAP and they were going to give the blood transfusion and then she became even more unwell.

And I was obviously getting most of this third hand from [husband], because he was down, going back and forth from special care, and in the end he asked the paediatrician to come and explain it to me on the labour ward. And they said that they’d done an x-ray and her lungs are quite under developed and they felt she need to have some surfactant and that they would have ventilate her to do that, and that one of the risks of ventilation is that it’s so much easier for the babies being ventilated because they’re not working so hard, that they don’t then want to come off.

So they ventilated her on

Meanwhile I’d been trying to start expressing, you know, to get things, you know, midwife there with her syringe, trying to get this miniscule amounts of colostrum [laughs] and we’re all getting excited when there was one or two mls of colostrum chasing it around the syringe. But that was the only thing I could do for her, and then I was like I’ve got to start expressing, and they were like, Well there’s not much point this early on And me saying, I don’t care. I’ve gotyou know, I can’t do anything else. I’ve got to, I’ve got to start

And so then I, then very early Saturday morning I’d gone round to the nurses quarters to get my pump and stuff and I saw the paediatrician, well one of the paediatricians and I said, Oh how’s my daughter And she said, Oh self extubated She said, All the machines went off and they ran out, you know, ran over and there she was with her tube in her hand as if to say I don’t say I don’t need this anymore [laughs]. So that was, you know, that made me feel, I was like well she’s a bit of a fighter, so she’s going to be fine. And, then she started becoming quite jaundiced which was also related to these, to these antibodies and those levels. So they gave her three doses of the phototherapy and then she just started getting stronger and stronger and then all of a sudden, you know. So after she’d self extubated she went back on the CPAP but only for a few hours and then she was breathing in oxygen for about, I think after eight days, and then she was breathing on her own, and without any sort of oxygen. They’d moved it around to the next room in special care for, you know, the babies that are getting stronger and just learning to feed really. So

And did it work the expressing?

Yes, yes, I mean I didn’t breastfeed my daughter, my first daughter, and I was really upset about it, and I had a much more relaxed view the second time around. I thought well, I’ll try, if it doesn’t work, I’ll just go onto formula I know, you know, [first daughter]’s absolutely fine. But as soon as I knew she was coming early and I couldn’t do anything else, I was absolutely determined. But again, I think it was in a way easier than having to breastfeed a new born that demanded every hour or two. Because I could set when I was going to express and she was taking such small amounts that I was able to, you know, I mean I can remember that first day getting that one or two mls and then we got ten, and then 40 and by the time I left hospital I was expressing about one and a half litres of milk a day [laughs]. And we had to buy a new freezer when we came home, just to put the milk in [laughs]. So, I mean I’m still expressing now twice a day. That’s you know, about, nearly five months later. Starting to tail that off on a bit, but sort of got slightly obsessed by making sure she had enough milk.

And those first few days that was all I was worried about. I can remember going down once at about 3 o’clock in the morning in tears, saying, Every time I express, I’m only getting a 100mls and I’m really worried I’m not, I haven’t got enough milk And [husband]’s like, Look at her she’s having 70 mls at a time and you’re expressing, you know, about every five hours you’re expressing 800 mls a day, you’re fine [laughs]. So you get everything completely out of proportion. So yes, it was just, again you don’t think about yourself much. it’s just, I mean I can remember calling my Mum at one point, and just being petrified and saying, just saying, How w