What did/do you really think of the SCBU care your prem got?

[holsobsessed]

Hi, the reason I ask is that when my DD was born at 31 weeks (15 months ago) I found SCBU really terrible, particularly the night care and I don't know how much was down to me being perhaps overanxious or what my expectations should have been of the care she got?
For example she was bottle fed without my permission one evening, when I really wanted to breastfeed and when I unusually visited her one evening (usually I stayed with her during the days) I could hear her crying down the corridor and her left in some distress (yucky nappy) while nurses were chatting around the station. She was moved into different rooms without me being informed so I panicked when arriving one day and I was given completely conflicting advice on her feeds. The list could go on and on.

Has anyone else had the same experience?

I appreciate some of the SCBU nurses are very good but I have never seen anywhere any issues/ complaints around prem care and I also wonder whether others (myself included) found it difficult to complain as you are obviously so grateful for the fact that SCBU exists at all, that you are put in an impossible situation.
Sorry it this is a bit rambling!

i think that it's a very hard time anyway - you are so stressed by everything - that some things can eat away at you. You have a baby but you don't have a baby iykwim, others have that responsibility - it is v sad to have to ask if you can hold your own baby - but that was how it had to be.
SCBU care for me was fantastic - the nurses looked after me and dd (a 27 weeker) - great help with bf for example. there were a few niggles - and some nurses i got on better with than others - but as you say, without SCBU dd wouldn't be here, so i can't complain about the small things. If any action had affected dd's health then of course things would be different.

Hi Hols,

In general, I found the care DS had in SCBU fantastic. However, what I did notice was a change in attitude among a few nurses once he got to nursery. With a couple of them, it seemed like they didn't want me to succeed at bfing almost, and really upset me a few times (interestingly, one definitely and I think the other one also, did not have children). I was also pissed off that the unit did not, I was told, have the ability to cup feed babies (not enough trained staff) as I desperately didn't want DS bottle fed - I had low BM production and he was having NG tube top-ups with formula, but I was hoping to be able to boost my milk once i got him home and could feed him more often - they were on the ridiculous four hour feeds there, which certainly didn't help. Once I was back in hospital staying with him (couldn't for most of his stay because I lived too close to the hospital to be allocated accommodation) to establish BFing, once they thought it was going ok (I had my doubts because I seemed to be expressing the same amount of milk whether I'd fed him or not, which seemed wrong to me), they took the tube out. Then when he was weighed a day or two later when we were hoping to take him home, and had lost weight slightly, of course I had no option but to let him be bottle fed too because of course I wasn't going to risk him losing more weight and not getting him home. In the end, it ruined my chances of BFing properly because I got him home, he refused to latch on for three days, I got mastitis and lost the milk in my right breast and of course I had to bottle feed him, again because there was no way I was going to let him go back into hospital through losing weight.

I don't know whether things would have turned out differently in the long run, but I met another girl afterwards from a different SCBU who was only producing the same amount of milk as i was and there they did cup feed and I think demand fed, and she was in the end able to fully BF her baby. So I have this lingering sense of frustration and annoyance and of course the emotional hurt at not being able to BF properly. I did carry on with the one side for a few months, but the milk dropped down very quickly in that so it was only a token amount probably.

This has been a long post, sorry, but I still need to say this from time to time.

Incidentally, with one of the nurses who made me cry (she didn't see me do it, btw), I did want to complain, but I was about to go home for the night leaving my four-week old premature baby in her care - that situation acts as the best method of tongue-biting in the world.

I think hindsight is a wonderful thing - if like me, you were a first-time mother, it is hard to know what to do when you have no experience of having a child, let alone a prem one. If I had the same situation happen again, I would certainly be far more certain, and assertive, about how I wanted things done. By the way, DS is now 13 months and a belter, so I do try to put some perspective on it all, and recognise we have both been so lucky - saw enough real heartbreak in that unit to count my blessings many times over.

not so good. But maybe thats cos she was 42 weeks and brain damaged.
I had to complain she was lying naked with all her bits on show and make them treat her with dignity.

The care my ds (born at 33 weeks 6 years ago) got was fantastic - we were in 2 different SCBU's as the hospital I should have had ds in had no special care cots. We got transfered back there after a week thankfully.
THe main problem I had was that I felt that I wasn't being listened too when I was getting more anxious about ds being in a hospital I couldn't get to on a daily basis once I was discharged C.section delivery and dh doesn't drive). It took for Dh to kick up after seeing me so upset for them to actually arrange something.
We still go back to the SCBU occasionally as they have a coffee morning weekly

non-preemie SCBU babies aren't invited to coffee things and are never mentioned on funndriaing stuff

I think this one if your baby was in SCBU you could go. I think one of the main reasons for it being on was a) as the doctors did their big ward round on a Wednesday morning and b) babies home on oxygen went in for SATs to be checked or to see the physio

Thanks all for your thoughts really helped me address what may seem as niggling concerns yet had really bothered me 15months later. (All the things I wish I had said at the time......etc)

Callieco, your experiences regarding cup feeding as opposed to bottle feeding and those rigid 4 hour feeds almost directly mirrored my own - and I think you're right in the sense of being a first time mum in that kind of situation makes it so difficult to speak up.

I hadn't appreciated needmorecoffee that non preemie SCBU babies aren't invited to some SCBU coffee mornings etc - that's dreadful.

I had fantastic staff in the NNU, I couldn't have higher praise for them.

Only bad things that we had was they didn't ask me to leave one day for handover and I was furious what they were saying. I suffered badly from "day three blues" which with everything I had been through was understandable I think, they were handing over that I was depressed and struggling etc, it shouldn't have been brought up and was played up more than it was. Also talking about another mum, who was having problems with daddy and they were saying "dad's not interested, he's only been once" and things like that. The other problem I had was with the ward I was on, but that's irrelevant.

I think that you should ring your locals PALS and ask to go in and talk to them about how things were.

I would definately mention feeding. They should find out right at the start how mum plans to feed, if it is breast then make sure it is written on everything NG AND BREAST ONLY, NO BOTTLES so that everyone knows. Same goes with dummies.

I would say ds's care was generally fab (32 weeker last year) I did have niggles tho and thats all they were, I understood that he was in the best place possible for his needs at the time and altho things like me not wanting him to have a dummy in case it impeded bf, i didnt really want him having a bottle for the same reason and as it was we struggled and eventually gave up with bf after a month of him coming home, however he is a healthy chubby baby who is content and that is the most important thing, I also think that the regimed start to life has helped him be more settled at home, but generally they were all bery helpful and friendly and the babies got lots of cuddles

dd3 was in scbue, was a 38 weeker so not prem. she was in for low blood sugars. the care was fab, but i felt miserable as i wanted to get home. i didnt want dd3 in a seperate part of the hospital to me, epesically onc ei knew how to do tube feeds on my own. fortuntl;y she was there for just 24hours, but felt like the longest 24hours in the hospital for me.

holsobsessed, my dd was born at term with a heart condition. I can only sing praises for the 2 weeks she spent in NICU/SCBU.

I had lots of support for bf-ing, but there were individual nurses who were horrible. Luckily, there was a bf-ing counsellor who could balance out the shoving-nipple-into-reluctant-mouth crap. Otherwise, I had an expressing quiet room, 24 hour easy access to electric breast pumps, sterilising equipment, fridges in NICU/SCBU. Once dd's condition was deemed to be stable and I indicated I wanted to bf dd exclusively, the hospital had rooming-in where I looked after dd the whole day in a private room with a double-bed - bliss.

For bf-ing, I think maternity units at NHS hospitals are generally bad at it anyway (see threads on mn). Not just confined to SCBU, so wouldn't be so hard on SCBU on this issue.

As for the formula-pushing, babies in SCBU tend to have health problems, that is why they are there. Mothers who can establish bf-ing quickly are usually the lucky ones, but rare. The diligent ones express, but usually not in the quantities needed (mother stressed and all). So SCBU tends to need to resort to formula to top up, hence the more casual attitude? Not necessarily right, but I can see why.

As for nurses chatting whilst your dd was soiled and crying, that would piss me off royally. When dd ended up with bad nappy rash, one nurse in SCBU tried to palm the blame off to me by saying I did not change her enough. She was a night nurse (supply?) who I ignored as a one-off nut case.

Moving into another room without telling you is not great. But would they know where to find you? I think that if they needed to, they would just do so (need to ensure maximum beds are available) and then wait until you next visit to tell you. When you went down to SCBU, were they in shambles and unable to tell you, or were they able to track your dd down?

As for conflicting advice on feeds, not usual for a maternity unit at all - IMO, most hospitals don't have a clue, SCBU or not! I too had a lot of conflicting advice on how to establish bf-ing, in the midst of tube-feeding, measuring feeds, formula/breastmilk top ups, advice from nurses, bf-ing counsellors, dieticians, speech and language specialist, pediatrician. Really stressful. At the end of the day, once the tube was removed, and dd was left to get on with it, she bf like a trooper and continued to do so for 17 months.

Because SCBU has to balance feeding issues with health issues, they tend to take over rather than go with the flow/support what the mothers want. Sorry you had a bad experience.

ok, this might be long...

I have had 4 babies that have needed SCBU, some more than others.

DS1 was in SCBU for 1 day and then had transitional care on the ward. The nurse was evry good and talked me through EVERYTHING.

Dd1 was a 31 weeker and spent 5 weeks in SCBU. This is were I found out that SCBU could be crap. She had desats and bradys all the time, they refused to give her o2 and would wait for her to brig herself back up, even if she was grey!!
They diagnosed anemea (sp?) a cold and a few other similar things. What we discovered AFTER she left SCBU was she also had blood poisoning and group B strep. They gave her blood without our knowledge or concent, I found out the next day.
I went up to SCBU one day, walked into the nursery and her cot, teddies, botttles for EBM, everything was gone I panicked and thought she had died.. was running around screaming. A nurse found me and told me that they had moved her into high depend. unit. (nice to be told BEFORE I got there!!?? )
They gave her a brain ultrasound sound and we were told that she was healthly, a year later she was diagnosed with Cerebral palsy as a result of her premature delivery.

DD2 was 33 weeks and spent 2 weeks in SCBU. As a result of Dd1's time in SCBU, I made sure they kept me fully informed and I got her out of there as soon as possible.

DS2 was 33 weeks and spend 10 days in SCBU. We actually decided to move my care to another hospital and the SCBU there was great, but I was asked to consider a bottle, even though I was wanting to BF (i refused) The nurses were great and I would go back to that hospital again.

Mine was a 28 wker. I was in intensive care for week and only met my LO when he was a week old.

I thought the nurses were great with DS, but were a little lacking in understanding about my situation. They expected me to be in the SCBU by his cot all day, every day, but I was neither physically nor emotionally up to it. I felt judged and guilty when I just needed some rest and some time and understanding.

He is 2 and a half now. He is a star and I love him fiercely. He is going in for an operation soon and I will not leave him for a second when he comes round. I am not a bad mother, but was made to feel like one for the first 2 months of ds's life.

ds2 (28wks) was in SCBU for a couple of months, the nursing care ds2 received was fantastic, he was fully ventilated & in ICU & we could not of paid for better care.
They cared for the entire family, very encouraging with bf encouraging me to keep going with expressing etc & stocking the freezer. answering all my questions putting up with me crying every 5 mins & phoning them at 2am.
The nurses were so professional & I witness one nurse challenge a consultants dx of another baby that ultimately saved that babies life.
The DR's although fantastic with ds2 & without them he would not be here did not have a great bedside manner with us & only when he was very ill did they volunteer their time for us BUT I appreciate the babies are their patients not me.
My only critisism is the lack of privacy, so many intensive care cots in one very small room made it feel too public.

Message withdrawn

Ds was a 35 weeker, and SCBU was alrightish, but I wasn't made to feel part of his life iyswim. There was no continuity, and no one ever really explained what was going on, how long he might be there etc etc. One nurse was fab about expressing advice when I finally met her - but she'd had preemie triplets that she'd bf.
The ward were awful - had to go round the ward myself to find someone to show me how to express, and there was no fridge on the ward so every three hours I had to wake myself up (they wouldn't do it, express, go out of the ward, get into SCBU, put milk in fridge etc after a fairly large pph. When DS went onto 6 hour direct feeds SCBU called the ward to say he was awake and I could try, I was asleep and the ward wouldn't wake me.

DS a 25 weeker. I am unbelievably grateful for the doctors and nurses that looked after him. However, there were many things i should have been told that i wasnt, and it was on many occasions that i had to air my opinions on this the day after they occured. This was because i was absolutely livid and if i told them straight away i would have been kicked out of the place! Going to work (i had to go back after 27 days, but thats another story) and coming to hospital to find a drip in my sons head was no laughing matter.

Or the time he had suspected meningitis and my one pound baby was given a lumbar puncture with no mention to me! or the time he had a serious infection which i wasnt told about. Boy i could go on forever!

Also there was one nurse (Im glad she wasnt in intensive care though) who NO ONE wanted looking after their baby. She would mix up charts etc. she was so absent minded. thats probably why she wasnt in intensive care or high or low dependency. she was in the nursery. She was lovely though

One more thing. I had my son at 23 but i looked about 15. the docs used to talk to me like i was stupid, and also they would explain things to my Mum thinking he was hers!

I think ive gone on enough. As long as they re home safe and well, thats the main thing.

I hope you ladies don't mind me having a nose but I used to work in NICU for 12 years no longer do because of ill health, the not being able to do what I considered my job (i.e. caring and talking to parents) became too much and find the comments interesting.

Sadly most comments are ones I have heard before and I totally understand why they are upsetting I used to want to tare my hair out sometimes communication is always a big one and so so easy to rectify with just a little thought I frequently ended up with babies of parents some nurses considered difficult because they needed talking to more than they considered necessary, without being asked I explained what I was doing and why it seemed to me as natural as talking to the babies as I was doing things and before I handled them.

I once got told I was pampering to a parent when I rang them up at 7am before I knew the dad would leave for work because we had spend time resuscitating one of his babies over night. I wanted to explain what went on because I had been there, reassure him that had things not improved rapidly I would have rung them to come in but felt as things had they needed their sleep and check that was ok or if they wanted ringing no matter what. And last give him the chance to visit before work and reassure his partner things were ok and prevent him getting the panic phone call from her when she arrived. Because if that was my child that is what I would have wanted. I got upset because they stopped coming in late when I was on nights or ringing and one day I asked them why I thought I had done something to upset them but it was because they trusted me and knew if I was there they would know if there was a problem so did not have to keep checking and could happily go home and sleep. Problem was they always wanted me looking after their babies when I was on and sometimes with the fragile sick ones you just need a break and to cuddle some bigger babies and reassure yourself what they turn out like usually

Callieco of course he lost weight when he went from 4 hourly feeds including NG he was using more energy and was busy increasing your milk supply it's normal most babies doing that would do so too. Add to that you were anxious with a limited weight loss and support at home you probably would both have done fine (please excuse me while I go and scream somewhere )

All I can say is please pass comments on to the unit you are on best time is when you are there it should never be detrimental to the care. If you do not feel you can talk to the nurse in charge or manager at the time. Please write afterwards it's nice to know what you do right but for those who are trying to change things from within (with some staff it is a loosing battle) it helps to have things on paper and to add to what you know should be happening.