So our child was in there for many months. There was very few things that I felt like I had control over, while I was there, and one of the things that I could control was expressing milk. So something very, very simple but it was the one control I had. So she, I started pumping from day one. I think it was one of the things that I wish the hospital had helped me a bit more with. I was left with this pump and the curtains were drawn and they said, Just do it. I had, honestly, I’sve actually never seen anything like it since. It must have been from a few decades ago. It was an older unit I’m sure and I was just left with it. I had no idea. I have absolutely no idea. First time parent here you go, express. So probably could have used a little more assistance and, actually, that’s something I could have used assistance with later on. So expressed for two and a half months and after two and a half months, she started breastfeeding. We were so blessed. I mean after two and a half months, for her to latch on and take, I mean I was so lucky. And one of the, the specialists in that said, the nurse that was specialising in it said, oh, we’sre, basically, it’s to the effect, you’sre an older mum. You’sll know how to do it. This is my first baby, you know. She’s two and a half months old. She’s never done it. I’sve never done it, you know. We, I want help, you know, and there’s people here. So, even when the help is there, sometimes they make assumptions and I think that’s something that, don’st make assumptions. No matter how old I am or what my background is, don’st make assumptions.

That’s a very good question, I guess probably would, the individual parts to think about, one of the things on my mind is around the expressing because one of the nurses said you did so well to keep going because my impression is that babies that are born that early the mums don’st usually manage to bring them home breastfeeding and I can completely understand why [laughter]. But yes one thing I thought there was don’st give up because it took me weeks and weeks for my supply to build up and I counted it down to the last mil so that I could see that actually it was creeping up little by little so that actually it felt very disheartening that it wasn’st getting anywhere and was it worth it. And so I did think there was a couple of times actually I really like to encourage mums who might be in that situation and with just practicalities around that because if you’re having to do it eight times a day you’sre getting your breast out eight times a day to do it and when I so we, within about the first three days fashioned a bra that we could just stick, you could just stick the funnel, shield things in so I didn’st have to get undressed. It sounds daft but when you’sre with there at the hospital and nearly three or four times you’sre going away to express because although you can do it by the bedside there was not often that much room or if somebody needs to do something you’sre in the way so it’s not very practical to do. I didn’st mind doing it but to just wasn’st practical so you’sd be going off and sitting in a windowless cupboard for half an hour and then with all the paraphernalia of washing up and bottling up and rinsing and sterilising whatever that went before and after, you could be gone for 40/45 minutes. And in [city] oh the doors, you know, you could spend 5 minutes trying to get onto the unit or round to the expressing room and then get out of the expressing room area back onto the unit and oh the frustration. You’sd lose a lot of time with the baby, so anything that you could do to make it quicker like have your adapted bra.

Yes, homemade bras..

Yes because I, you know, just holding, within 24 hours of just holding the equipment there it was really uncomfortable and wrist was aching and I can’st do this eight times a day for, you know, it could be how many months until, you know, he reaches term I thought this is completely unrealistic so I have to make it work for us, so a few little bits like that that helped make it do-able. And then just to also to encourage mums to persevere.

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.

But we talked to the doctor and I remember her particularly a female intensive care doctor who worked all over the hospital and was actually on the bleep as well for the, you know, for re-suss. She chatted to us, you know, I remember asking her quite specifically about what would happen, you know, when we turn the machines off how would it happen, what would happen. I remember I remember even laughing with her though, you know, we in the midst of it all we had, you know, this was going on over now five days a week or whatever, I remember almost with this particular doctor having a bit of a giggle at all the parents, you know, how different we all were in intensive care, how bizarre we all behaved if you see what I mean like, because I was sitting there constantly with this blinking electric breast pump stuck to my nipple, you know, like it come sort of through my T-shirt and stuff, so like all of the male doctors found this all, you know, you could tell really uncomfortable, you know they were coming over trying to have a serious conversation with me and I’sd be like yes carry on and you could bits of the nipple being squeezed out and stuff and I was merrily filling up every freezer in the hospital with milk because I was just still pumping and I wasn’st ready to, you know, stop at this stage I had no idea what was going to happen.

Yeah. And we’sd been given the opportunity to have a look round the neonatal intensive care unit at the women’s hospital. So we did feel very supported from a medical what will happen next point of view. But one thing I felt wasn’st well addressed was breastfeeding, actually. Which was really important to me, having fed my eldest son. And so I independently contacted the feeding adviser for the women’s hospital. But again, I think that’s very much the focus becomes on, on the baby and the very medicalised side of things. So normal conversations like breastfeeding don’st tend to, don’st tend to happen.

Did you get anywhere with breastfeeding in terms of the information ahead of time or?

Yes, I did get a little bit of information about expressing and being able to give that to, to [son] early on. But it was quite minimal and I felt like it was me searching it out rather than it was offered.

And there wasn’st really any advice on how to keep going, you know. And also, and this was a big issue for me, I discovered that they pasteurised the milk that they, you can donate to the milk bank in the children’s hospital but they sterilise the milk and pasteurise it. Which obviously takes away a lot of the goodness from the milk and that’s not the same policy as at the children, The women’s hospital and I didn’st feel I’sd been informed about that. So, when we discovered that, it was only after about a fortnight or something and most of the time, he had, he was either on TPN*, so he wasn’st taking it. So it didn’st have a big impact but I, they wouldn’st store the milk unpasteurised for us.

In the milk bank there so that meant I had to express, bring the milk home, take it in every day. I couldn’st use the milk bank facilities at the children’s hospital. Which for, you know, poorly baby, you want to do the best by them and again, that was a really specific example of him not actually getting the same level of care or environment that he would have got in the neonatal unit.

*(Total) Parenteral Nutrition (TPN)
TPN is nutrition is delivered directly to the blood via a vein.

The other thing that was wasn’st great was the support for me wanting to breastfeed so, you know, given all that’s going on I was, you know, this is what I’sve gotta do and it was actually my midwife, my community midwife who sorted me out with a pump and all of this and so, and because I had a clue, I’m a health professional and I’sd breastfed a child before I knew what needed to happen but if I hadn’st had that or been determined or asked questions, no-one said a word about it no-one was interested because as far as the medics were concerned, this baby wasn’st getting fed for three weeks anyway, you know, and I just don’st, there was just no expectation but for me it was really important because this was one thing I could do. So yeah.

So I did that but they had a breastfeeding support nurse in the hospital and they had a little room that you could go to this kind of miserable place that, you know, so they had equipment there as well that I could borrow when I was there during the day. So I would go away to this little room with a pump and in some ways that was nice as well cos it was a break away from staring at sick babies you know, so I’sd go away and do that. And you get into a little rhythm of where to put bits and bobs and how to sterilise them and whatever.

But you didn’st really get support for that at the beginning?

No, absolutely not, but and even the breastfeeding support nurse the one thing that I remember from her was that one of the nurses had said Oh you know, a mum has been here all day would it be alright if I give her-,’s because there was a ward round and I had missed, there’s only a tight window for going to get food in the canteen and I’sd missed that so she said Can I just give mum something to eat off the trolley I believe we can do that for breastfeeding mums?’s and the breastfeeding support nurse said, But she’s not breastfeeding is she?’s because my baby wasn’st able to eat and I wanted to punch that woman, it was the most insensitive thing to say to a mum who’s sitting setting her alarm every three hours to do this, you know, she wouldn’st even give me a free meal. so yeah, but, you know, I was determined so I did it and like I say it was the thing I felt I could do, so I was obsessed about it.

And was that important?

Yes.

And you couldn’st do anything else.

No I couldn’st do anything else for my baby I couldn’st even pick her up at this point, I couldn’st feed her, I couldn’st comfort her when she was crying, I couldn’st do anything. So yeah it was something I could do and actually it worked, you know she, I breastfed her for 15 months so screw them all [laughs].

So I was initially breastfeeding him and the output was very high and he was actually he was, you know, taking to it fine he seemed to be coping alright actually. But the output was very high and he was losing weight and so when he was, I think when he was about two weeks old, he was below his birth weight which I know is quite common maybe but not at two weeks. so the, it had been indicated to me that children with stoma’s can have a problem with absorbing breastmilk or normal milk because of the fact that you know, the stoma being kind of high and not passing through the large bowel. I hadn’st realised quite how common that is actually, I think about 80% of children can’st tolerate milk. I don’st know study, it was kind of, I only found that out afterwards. So I found out on the day he was about two weeks old on the Sunday that he wasn’st putting, he was losing weight and there was a suggestion that we try him on Pepti-Junior you know, which is a broken down milk which children with stoma’s* are maybe better able to absorb. And they said they would do some tests on his, on this reducing substances on, reducing substances tests on his, on his poo to see if that was actually the problem. Which I wasn’st, I was told the test would take about three days to come back but in the meantime I should continue breastfeeding him, if I had the breastmilk. I wasn’st happy about that because I felt that, if your child isn’st putting on weight you just try something else you don’t, I felt you don’st wait three days for the test to come back. And so I, I my breast milk dried up then [laughter] and we put him on Pepti-Junior and he did start quickly putting on weight. And the reducing substances came back to confirm that the decision taken was correct I was, that was the one situation that I was very, I would say I was quite annoyed about. And I can understand probably that taking him off breastmilk was probably a sub optimal thing to do because obviously we need to encourage breastfeeding and breastfeeding is probably the only optimal option. But when a child is losing weight and we knew that there was probably a relatively low chance they weren’st going to be able to tolerate breastmilk anyway and given he’sd had such a difficult start in life not gaining weight was an extra-large problem. I was quite it made me quite skeptical of someone promoting the breastfeeding, I think I felt that strongly about it.

* Stoma
Surgeons may divide the bowel in an operation and bring the two ends out on to the tummy wall. This is usually a temporary situation to help the intestines or bowel rest and heal.
Faeces (poo) passes into a bag attached to the outside of the body.

Sonya: And the sister who took me was, I don’st know I can’st think of the words to describe her but she was militant maybe was the right word. Like Livvy had literally just come round and I picked her up and was holding her and she was like Right you need to feed her, you need to try and feed her now,’s Okay.s Is that normal, is that normal has she normally latched on by now, is she latched on right?’s And it was just like really in my face, quite aggressive, really over the top and the anaesthetist was going Just, just give her a minute she’s literally just come round, just give her a minute.s And I’m thinking oh my God is there something wrong and she obviously had a check list she needed to get through to see if she was okay after the anaesthetic but it was literally within like a minute of me seeing her.

Adam: And it was putting the pressure on you to diagnose in a way.

Sonya: Yes.

Adam: Like is this normal does she appear normal when you only know what’s normal when the baby’s a three week old baby’s just come out of a general anaesthetic like how are you supposed to know what.

Sonya: And I – you know she is still sleepy so, and the anaesthetist is saying if she’s not feeding in ten minutes then we’sll worry now it’s fine because she’s still, I mean look at her she, I mean she was still like she’sd just come round from a ten hour sleep, so I didn’st enjoy that bit it was that kind of initial rush of great relief and wow she’s fine to oh is she fine I’m having all these questions shoved at me with a, a clipboard [laughs].

You don’st normally have someone with a clipboard over you while you’sre trying to feed your baby either do you so kind of yeah.

Adam: And ten people in the room and whatever and all that business as well so.

Sonya: And also she didn’st know, I mean obviously I was only three weeks into breastfeeding could have still been really difficult she hadn’st asked before, all this you know, if things were going well or whatever, so wasn’st great but it turned out she was fine and within a couple of minutes she had latched on and was feeding away.

Adam: Feeding like crazy.