Nicky

Age at interview: 39

Age at diagnosis: 39

Brief Outline: Nicky was expecting her first baby. He was born very early, aged 24 weeks and developed complications that required bowel surgery.

Background: Nicky is a lecturer in dietetics. She is married with one son.

More about me...

Nicky’s son arrived unexpectedly and very early, aged 24 weeks and 3 days. He weighed 700 grams and was immediately taken down to the neonatal intensive care unit (NICU)*. He was stable for a few days but then started to develop complications. He was on a ventilator to help his breathing and developed digestion problems. His abdomen became more and more distended and doctors decided that he needed surgery. He was in a general hospital so needed to be transferred to a hospital that had specialist paediatric surgical facilities.

He was transferred and Nicky and her husband were able to stay in a hospital charity house on the hospital grounds to be near their son. Doctors were concerned that he had developed a condition called necrotising enterocolitis (NEC)* and would need a section of his bowel removing. They met the surgeon who explained what she was going to do. When the surgeons operated they found that his bowel was blocked with curdled milk, and there was no NEC, which was good news. However, he did not recover well and developed repeated episodes of sepsis (infections). Eventually doctors worked out that he was reacting negatively to the milk he was being fed. Giving him a different kind of milk, that did not contain cow’s milk, improved his digestion and he was eventually able come home, aged 4 and a half months. 

* Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.

*Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected. 

Nicky and her husband prepared to follow their son to the specialist hospital. They knew they were in for a long haul.

Let me think, I think he went late afternoon early evening because I think we got down there I think it was about 9 ‘o’clock and we saw the, the transport team as they were coming out of the unit and I think he’d been there about an hour at that point so I think it was early evening. So it had taken, I think it had taken until probably early afternoon to locate a bed and then make sure transport was available and tie everything up. And then obviously for them to come over and then it takes a good hour and a bit for them to get him set up and transferred onto another transport kit incubator, ventilator all the medicines onto their, [syringe drivers], his drivers.

Did you watch all of that?

Yes.

Yes.

Yes.

So that was on a sort of moving trolley is it that they put everything on?

Yes, yes.

And with a dedicated team?

Yes yes they have their own neo-natal transport which is for their area so they’re actually having to go out of the area down to [city] but fortunately they were available to do that and I think had they not been available to do that than they would have been going to see if any of the other neo-natal transport teams could be available to step in but fortunately they were able to do that.

And that’s a nurse and a doctor presumably?

Yes, yes.

And so you sort of pack them off on the ambulance do you and then drive there yourself?

Yes, yes we actually came home because we knew that there was a long haul involved, we hoped there’d be a long haul involved so rather than just tear down following the ambulance we decided to come home have something to eat and pack a bag. We’d booked a hotel for the first night but it transpired over the afternoon that they’d actually got accommodation at the hospital and luckily we were able to cancel the hotel [laughter] without being charged. so we sort of came home and said right what do we need for, we sort of took enough stuff down for a week or so to start with rather than sort of just fly down there and then thinking well we’ll need X,Y,Z and we haven't got it and then it’s an additional hassle so we sort of came home and collected our thoughts [laughter] and our bits and pieces and then drove down after I think we got there about 9 ‘o’ clock something like that.

Nicky remembers the date when her son had his first really bad day. NICU staff stopped his intravenous feeding and were talking about the possibility of NEC.

The 15 February was a really bad day that was the first really bad day where we thought everything was okay and got onto the unit to find that actually no things were really bad. and his feed was stopped all together at that point because of the poor tolerance and I think that was when they started to think that there might be something else going on and I think that’s probably when NEC* or NEC started to come onto the agenda and there was a, you know, they said we don’t think it is but it’s always a possibility so that’s what we sort of have to be mindful of, you know, and watch out for. and I think at some point around that date they thought okay we should probably treat as NEC which was to put nil by mouth, could have been for ten days it was quite a period of time which again to me [laughter] with my background like disastrous yes he was still having the TPN* but that was a big setback. And expressing as well going through all that and then he couldn’t have it was quite frustrating as well as the fact that he was actually quite sick at that point. and I think he got a little bit better and we sort of then had about a fortnight maybe ten days, not quite two weeks of ups and downs and he'd be alright for a few days and then there’d be another sepsis or deterioration or something and he'd be quite sick. and then he'd get a little bit better and then he'd be sick again and his gut was distending by then just getting bigger and bigger and he just looked so uncomfortable with the veins you could sort of see really marked veins he looked like he wasn't far off bursting, you know, if he sort of got a pin anywhere near him he looked like he was going to go pop. although in himself he was actually quite well and didn’t seem most of the time too out of sorts with it and I remember one of the consultants saying he’s a master of disguise and he said I'm looking at, you know, these numbers and the blood results and he said you know and what I’m seeing of him he's not matching what I’m seeing on paper. Which I think was nice in one sense thinking yes go on [son] [laughter] got a little fighter. So the fact that he was quite strong in that respect, he should be looking a lot more sick than he is but yes that was a bit reassuring as well because it was bleak but actually look at him he’s okay and a couple of people have said focus on him look at him, you know, not the numbers not the statistics and that side of things so yes it was nice to be able to do that. 

* Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected. 

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

Nicky took weeks to build up her milk supply for her premature son. She fashioned a DIY bra to make it easier, so she didn’t have to spend so long away from her son.

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’t usually manage to bring them home breastfeeding and I can completely understand why [laughter]. But yes one thing I thought there was don’t 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’t 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’re 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’t have to get undressed. It sounds daft but when you’re with there at the hospital and nearly three or four times you’re 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’re in the way so it’s not very practical to do. I didn’t mind doing it but to just wasn’t practical so you’d 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’d 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’t 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.

After yet another setback, Nicky started to lose her faith in her son getting through. She rang the BLISS helpline and had counselling to help her cope.

On a number of fronts as well as it being a step towards home all be out it was a way off, we knew that, but it was another step towards home which for so long we hadn’t known and hadn’t dared hope that home might happen because as soon as things[started] to improve there'd be another setback with surgery and then he’d recover and then there was another [setback], do you know, what I mean it’s like having got back to [local city] was a massive milestone for us on a number of fronts. And then so quickly to become poorly again and go back through all the old is he going to make it, what’s causing it, what’s the problem all was, it just took the wind out of my sails and I fell apart basically yes at that point I struggled. And I’ve struggled on for a little bit and then I'd seen posters up about the BLISS charity having a helpline and so I rang them because I knew I was struggling. I wasn’t daft as well as everybody seeing I was struggling, telling me I was struggling I knew very well what was going on in my head and I just couldn’t see how I was going to get through much more of this really, starting to get your hope and then having it dashed again. So they arranged counselling for me.

And how has it impacted you two as a couple, it’s been a tough year?

Yes definitely and some times have been easier than others and we’ve certainly pulled together very strongly at the beginning and then when I started to fall apart I think I started to pull away but that got, once I had the counselling then that very much helped on that front. And I think now it’s just, just different isn’t it because there’s three of you in the equation and there’s just very little sort of couple time if you like because usually you see by the time [son] goes to bed I may even have gone to bed before him to try and get because I'll be the one who usually gets up in the night or gets up to fed him which can be, sometimes it’s not until 7 ‘o’ clock but it can be four, five, six so yes there’s, it’s very different but it’s just how it is isn’t it.

It passes

Yes, we’ll maybe get a babysitter one day but.

Nicky’s premature son was transferred to a hospital closer to home, which was good news, but actually visiting him everyday was a “logistical nightmare”.

And so you talked about being really isolating and those particularly those last weeks, how about when you finally got him home, how did that transfer?

It was just such a relief and it was just so much easier although it was just on high alert for any possible problem and setback because all we’d had was cycle after cycle of setback and problems we were just waiting for the next one and then we got it two weeks in but it was just so much easier. just like giving the medicines you haven’t got to go and find a nurse and say [son] needs to feed or he’s going to feed in the next half hour, I think he’s getting hungry can I have this medicine, can I have that medicine, can you warm this up or can you get that. you just did it and it was so much more relaxing, it was hard work everybody who has a new baby knows its hard work and the sleep was few and far between but it was just so much easier and the other big issue was the parking, the car parking and the physical battle to get to [local city], they’ve been replacing all the traffic, not traffic lights street lights on the road in and out and so it, oh every day it was, and fitting everything around expressing as well because up until he came home still expressing and it was oh I need to express at this time, the car park will be awful at that time, the traffic will be bad at that time so what time do I leave the house. And it would, every day as well as what time does [son] need to feed so that I’m there so that I can breastfeed him and not miss an opportunity to do that. So there was, everyday there was just that logistical nightmare but it was just like a cloak a heavy cloak. You wake up oh what time is it, what order do I do things, yes it was just so much easier such a relief to get home.

Nicky’s son needed to go in for surgery urgently, so her husband wasn’t there. The transport team transferred him and gave her an idea of timescales.

So that was Sunday emergency surgery.

Yes, yes.

Quite stressful for you and [husband].

Well [husband] was actually at work [laughter], he was back upworking on the Sunday as a flight instructor he was in the air so I couldn’t get hold of him [laughter]so I had to leave a message with the flying school to say can you phone me when you get back down quickly. So he didn’t pick the message up until late afternoon when [son] was in the process of being readied to be taken across the hospital for the surgery and so he came back down but fortunately my sister and her husband had been visiting that Sunday anyway and so I wasn’t on my own I’d got them with me which was, which was really good to not be [alone], although the nurses were great to have them around as well because he was in a period of waiting for a couple of hours once they took him down did what they were going to do then stabilised him before they brought him back. But they were very good because it was a, they have a separate transport team that transfer the baby from the neo-natal unit to the surgical unit and then bring him back. And they were great they introduced themselves to us, told us what would happen and the timescales so that we understood that it wasn’t just there for the surgery and back there would be a period of stabilisation before taking him in and the same afterwards. And they phoned as well to say he’d gone in and then when he’d come out that they’d got back to the unit so they, they were keeping us sort of in the loop with what was happening because it’s like a period of a few hours where your mind is just racing and racing and racing oh what’s going on what’s happening and so as far as they could in as much as they could they just let us know where things were at so we’d got a rough idea of timescales.

Nicky’s son was born prematurely and developed necrotising enterocolitis (NEC). At 10 months, she was still taking him to at least one appointment a week. She was looking forward to knocking a few of them on the head.

But he's still being checked out regularly by various people, it would be nice to just say “Come in if there’s a problem” but I know why they do and I know it’s very good but it’s part of the just being normal it would be nice to knock a few of them on the head.

So are those all checks that are happening through the GP…..?

No things that have been set up through the hospital or the health visitor rather than the GP so we don’t see, physically see the GP very much at all most of its other services, we’ve got speech therapists, dietician, physiotherapist home visitor consultant neonatologist as well as other check-ups on his eyes because of his eye problems and his ears just hearing tests. And then the surgeon at [city] the surgical consultant and the gastroenterologist consultant as well so.

So you’re still in that kind of follow up phase aren’t you?

Very much yes and a lot, I mean for the last six weeks or more we’ve just had appointments every week, at least one appointment every week. And he has to have an injection every month over the winter of an antibody to try and reduce the risk of him getting bronchiolitis as well because he’s classed as having chronic lung disease.

Okay.

Having been ventilated for so long so they give them that every month to lessen the chance of them getting it and the severity of them of him developing it so it’s another, another appointment.

So you're travelling to [local city] quite a bit, to [city] a little bit?

Most of the follow up fortunately is actually [name].

Okay.

So we only need to go to [local city] for eyes, ears and the antibody injection, most of the other things are [local city] sorry [name].

Okay.

Which is much easier.

So at ten months you've got one appointment a week?

We certainly have done since, since the beginning of October its physio this week.

And you’re still on maternity leave?

Yes.

But you could well not be couldn't you?

Oh gosh yes.

You could effectively use up six months yes.

Yes my friend went back at six months in mid-October, yes had I gone back at six months that would have been July, end of July he would have only been home six weeks, well not even that readmission at the end of June, we really couldn’t have managed that. And with his sleep he was still very unsettled at night really so it would have been completely unmanageable as well as horrendous emotionally to be going back to that and I know some parents have to do that and...

Thinking about the practicalities of, you know, juggling all of these appointments with, you know, if you had to be back at work as well.

Oh gosh yes especially if you were full time.

Yes.

Very, very difficult and I'm hoping that by the time I do go back we’ll have got rid of a few in the nicest possible way, I don’t want to sound ungrateful because as I say the service and support we have is absolutely superb but yes it’s just nice to not have them really.

Nicky was very isolated when her son was in hospital and only her parents and partner were allowed to visit.

Did you have family around or friends or was it quite hard to kind of keep?

Family mainly, it was very isolating, very isolating because at [local city] the only people who are allowed onto the unit are grandparents so my parents would come every week and [husband]’s parents would come most weeks. But you couldn’t have anybody else there and by the time you were sort of talking about, I was on the unit as much as I could be because we were starting to breastfeed and build that up so I was there for as long as I could be during the day to get as many opportunities to get established with that because the quicker I got established the quicker the tube comes out the quicker he can come home, it was another milestone to coming home. But nobody else could come and so it’s, you know, I just found it, the last few weeks really very isolating and I just, you know, I’d have e-mail contact with family and a couple of friends and I just craved that, and the outside world information and the real world and what’s going on in your life as well it’s nice to have some normality in this mad world that we found ourselves within, so yes it was very isolating towards the end because of the restrictions with visiting and because it had been so long as well. It wasn’t too much of an issue up until probably the last month or so and then it found, it just felt a lot harder.

Nicky described the odd hiccup in communicating the care plan for her son, but on the whole communication was great – she never had any extra questions because she’d been given so much information.

And so your main communicators on the neo-natal ward were the nurses?

Nurses and doctors.

Both of them, okay.

Yes definitely at [local city] we saw a lot more of the doctors at [local city] than we did at [city]. I think because it was a smaller unit and most days they would use, they would see us there and come over at some point to talk to us and give us some update whereas that didn’t happen so much at [city] we didn’t see the doctors anywhere near as much. and we had a bit of a hiccup when we got to HDU at [city], it seemed to be, I don’t know whether it was just, it’s always like that but it just appeared that we were there, there seemed to be a different consultant every day on HDU and so there was, it became quite disjointed, One day you’d have a plan and it was ABC change medication to this that and the other and what have you, next day it would be a doctor and they’d have a plan but there didn’t seem to be any reference back to yesterday’s plan and so it was OK we’ve got a new plan, but what about yesterday’s plan. And things got a bit disjointed and we had to do a bit of chasing up there and asking to talk to doctors and for clarification about things because things weren’t the continuity of care wasn’t there it just got a bit messy at times.

Because it was a bigger unit or? The way they were staffing?

I think it, I got the impression it was the way it was staffed because it seemed to be that there was a different doctor, a different consultant each day is how it, it seemed. And I know you tend to get that over the weekends going into weeks but it seemed to be in the week as well, it was an ongoing problem. So there were a few issues there but certainly at [local city] they were just so [laughter] free flowing with information that you very rarely had to ask a question because they’d told you the answer before you realised you had the question, it would be “Any questions?” and there really weren’t any because they’d just given you so much information. 

Nicky found reading other people’s stories too hard in the early days when her son was still very unwell.

Most of it was by the staff and then I would go online but I went on very cautiously again with my background and I know there’s a lot of rubbish out there and you have to be very careful where you look. and I know the way that some websites are written, if they’re written by professional they’re written in a different way and it’s very factual and an emotional mother reading something that’s very factual statistics wise can be very difficult so I was very mindful about what I looked at and where I looked depending on my emotional state at the time or what I wanted to find out, what I needed to find out. And I didn’t rush to look at things in the early days either, probably because the team, the nurses and the doctors were just so very good at explaining things and giving you all the information.

So you felt like they were giving you all the information that you needed?

Yes, yeh there was very little that I looked up in the early days and also I didn’t feel able to look it was too hard, on the unit there were photos of babies and their stories, little summaries, I couldn’t look at those for weeks and weeks and even when we went back to [local city] I still found it hard and would still make me cry, probably if I looked at them now it would still be tough. So there was a lot of stuff that I felt I couldn’t engage with because it was too hard, somebody mentioned a website that they’d come across about pre-terms that had been put together by a couple of mums I think. And I had a very quick glance at it but I couldn’t look at any detail because it’s just too hard I was much better at processing and dealing with the facts rather than any emotive content and anybody’s personal story but that was just too hard. Even though I knew that there were positive stories there I wasn’t a 100% whether the one I picked would end up with a happy ending and it was too much of a risk to go there and look at that for a good while to be honest.

Nicky said she really appreciated the clear diagrams the surgeon drew for her. It helped her understand, and be able to translate it for her family.

I don’t think there was anything that didn’t get answered because the surgeon was very good and the other thing that she did was she tended to draw diagrams I can’t remember whether she did before the surgery but she certainly did afterwards to show us what she’d done and what she thought the problem was and, and that was really, really helpful to see it visually [laughter] as well as hearing. Although I knew what she was saying I understood because I know the gut and the anatomy and that was an advantage again that I'd got that background it was I always kept thinking if I hadn’t got the background that I had it would be so much harder because I wouldn’t understand I wouldn’t know anywhere near as much so it was nice to have that background most of the time. But even so it was nice to have it clearly drawn out so you could see and to show other people as well so that they could appreciate what had been done.

Yes absolutely.

Because you explain it to them and translate it to family.

[husband] hasn’t an anatomy background has he so?

Not huge one but he’s, he picked up an awful lot [laughter].

Oh I bet yes.

Yes, yes.

Nicky said she was wary of where she looked for information online, and recommended relying on the doctors and nurses looking after your baby for information.

I don’t think so, although I suppose when you say what would you say to other people and about the information aspect, yes just be careful where you look for the information and really use the medical teams that you're working with for your source of information as far as possible and probably the BLISS charity I’d recommend, they've got a lot of useful resources on their website as well. Yes probably just be careful, I can remember one mum who was getting really worried because her son wasn't doing so well, his oxygen requirements had gone back up again and she didn’t understand why and she wasn’t really saying to the team that she didn’t understand and she wasn’t asking them to explain it again because she hadn’t understood it the first time and that was causing her some anxiety, so make sure you do understand because it’s so important and I’d really encourage people to use the, the nurses and the medical teams as their source of information because there is a lot of worrying information out there that can make a worrying stressful time even more difficult.

Yes, yes. Thank you.

So yes so just you were just telling me about the importance of being careful where you look.

Yes, yes I definitely encourage people to talk to the medical; team the doctors and the nurses who are looking after their baby, their child for the information get as much information from them as possible and if you don’t understand it ask them to explain it again be very careful where you look online there are some very useful places but there’s also some places that are less helpful so just be very mindful of where you are looking if you’re going outside of the team.