Don't want to move from NICU to SCBU

(22 Posts)
Dildals Wed 07-Aug-13 19:25:08

My babies were born at 29 weeks about 10 days ago, and sadly twin 1 did not survive. Unsurprisingly we are really anxious for twin 2 to do well.

Twin 2 is in NICU at the moment doing brilliantly. She does not require any breathing support, takes all her feeds from mum's milk and the only permanent line she has at the moment is the nasal gastric tube. She does have a few episodes of 'forgetting to breathe' but she corrects this herself.

So, naturally, the medical staff have started to prepare us for the fact that she may be moved to either the high dependency or the SCBU soon. We, on the other hand, are very much Not Keen. The ratio of nurses to babies is a lot higher on the other wards and we are dead scared the hospital will do another fuck up (excuse my French) and lose another one of our babies. I know we are totally being anxious parents, but, let's face it, we have good reason to be!

If she moves to SCBU I feel an all night vigil coming on.

Does anyone have any experience with this/advice to share?

glorious Wed 07-Aug-13 19:59:45

Congratulations on your babies and I'm sorry it's been such a tough time. I don't have any experience to help you but you might like to ask for this to be moved to premature birth where there are lots of people who will and you might get more replies. If you want to do that click report on your post and explain.

I hope your DD goes from strength to strength.

valiumredhead Wed 07-Aug-13 20:06:23

When ds was in scbu there were 3 rooms one with one to one care, then as the babies got better there was 2 nurses to 4 babies in open cots and parents could help feed etc and then they went into a room with normal cots just before they went home. There are LOADS of doctors and nurses the level of care is amazing.

It's a very anxious time but this it's a good thing as it means your baby is progressing smile

Sorry for your lossthanks

lougle Wed 07-Aug-13 20:10:18

Congratulations on the birth of your twins. I'm sorry that twin 1 died sad

The NICU/SCBU staff will all be well experienced and rotate from one to the other to keep their skills up.

Your baby needs to learn to be a baby and part of that is having a less busy environment. It's actually quite bad for a baby to be surrounded by so much noise, bright lights, etc. When I worked in NICU, there was a phenomenon whereby one baby setting their alarms off would quickly lead to all the babies doing so - it's so stressful for them.

I understand, of course, that you are seeing it as 'better alive and stressed than not alive' but NICUs really don't move babies unless it's the right thing to do and they will always move them back again if the baby needs it.

Dildals Wed 07-Aug-13 20:55:03

lougle the SCBU and HD ward are quite cramped and noisy though!
What also hasn't helped is that I hear the mums complaining about the SCBU ...

lougle Wed 07-Aug-13 21:57:31

Mums will complain. No matter how good or bad it is. They are in a helpless situation and they can't change the health and progress of their baby, so all they can do is complain about the ward. It's like a subconscious displacement. make your own judgement.

Dildals Wed 07-Aug-13 22:12:15

The other thing they can do is express and be there for their baby. I will make my own judgement.

I'm sorry for your loss. I think you need to remember too though that another baby may be born tomorrow needing the nicu cot. There is always movement in these areas and there's always somebody getting better with somebody else coming up behind needing that care. Your baby is doing well, as another poster said, she needs something more normal now.

cantsleep Wed 07-Aug-13 22:18:40

I was nervous when my ds2 was moved from NICU to HDU, he had been in NICU for a week and I was nervous he wouldn't receive the same high level of care.

Once he was in HDU I suddenly realised what a calmer environment it was and then even more so in SCBU. There were still plenty of nurses and doctors and I felt reassured every step of the way.

Perhaps talk through your concerns with the consultant and go through exactly why they will be moving your baby so you can she how much he/she has progressed and what sort of things to expect from the continuing care.

Good luck x x

I'm sorry for the loss of your baby.

I personally found the move to SCBU from NICU a good thing. It showed progress for my DS, it meant I could be more involved in his care.
I did have complaints about things in there, but looking back they were very trivial ones (although very important to me at the time). So the mothers you hear complaining are in the middle of such a traumatic time - they want the very best for their babies. Everything is magnified in NICU/SCBU.

Your own judgement will be a factor in the care of your DD, don't worry.

clabsyqueen Wed 07-Aug-13 23:04:20

Sounds like your little one is doing very well - no breathing support at such an early gestation is great. I'm so sorry that you lost a baby and even more alarmed to hear that it might have been due to a staff mistake - truly horrifying thought.

I found every move 'down' to be very stressful, staff:baby ratios are less favorable and staff seem to be less experienced. That is true to an extent but a good unit does rotate their staff around all room so that they experience all levels of care.

I won't lie - I did increase the number of all night vigils I put in when my baby was almost out the door in 'bottom rung' special care as I was worried about some of the staff. I just accepted that it was a small price to pay for peace of mind since I wasn't able to change the staff or improve ratios. Though once when a set of twins were brought into a single baby space I did ask for another nurse to be on and I got one!

It was a big battle for me to accept that my baby was sometimes being cared for by staff I didn't trust or like - I got over it by making extra special efforts to get to know them. Hard work but we spent 12 weeks 3 days moving backwards and forwards between all the levels so I had no choice. Best of luck on your journey.

MiaowTheCat Thu 08-Aug-13 09:01:45

I found it easier but just because the staff happened to be nicer and more approachable (our NICU stay was very brief though). The one I found awful was the move into transitional care on the ward with me - but that's down to how fucking disgracefully managed and "organised" (I use the term loosely) it is in our NHS trust.

The birth trauma midwife I saw prior to DD2's birth drippily commented "oh yes, I see a lot of women who've been quite distressed by the transitional care experience"... well some one bloody look at the fact that you've got a couple of real bad apples working that role with the empathy and interpersonal skills of a housebrick! (One was seriously so bad that the nice transitional support worker who really "got" it as she'd had preemies herself and realised how it was would check the staff rota for me to advise me when housebrick was due on shift so DH could make sure he got there for the start of her dayshift that day and be there till evening shift changeover).

Because they kept me in all the time DD1 was in there I was quite a regular on the unit at stupid o clock in the morning - well middle of the night on a ward bay with mums and babies and the screamers in wasn't conducive to sleep anyway - and I found I got a much more candid picture of how we were doing with the night staff chatting to me for some reason.

Dildals Thu 08-Aug-13 10:05:28

Yes miaow I hear you on the 'housebrick' ... one midwife basically told me I should be grateful that I had one twin left. And that I would be back on the labour ward within 18m no doubt with another baby. Sure. I think you need to leave now ... People just say things without thinking sometimes I think.

The ward takes on a completely different atmosphere in the night time, much calmer.

So your baby came down to the postnatal ward to stay with you?

The communication is so important and would alleviate a lot of fears and worries of parents, but seems to fall completely by the wayside for some reason.

I just hope I can take her home as soon as we can.

valiumredhead Thu 08-Aug-13 15:08:16

Oh yes, one 'house brick' said to me 'you should be at home making the most of your 'time off' hmm

Also had the 'see you in a couple of years with your next one'hmm

Also met one of nurses while out shopping about a year after ds was born and she said 'oh yes,I remember you, you were the lady who cried all the time'

Ffsangry

valiumredhead Fri 09-Aug-13 08:56:21

How's things OP, have they moved baby yet?

Dildals Fri 09-Aug-13 18:24:47

valium yes, she was moved today. I went up to NICU to see her and there was a different baby there! They had warned me that this would happen. So a search party ensued. No baby at HDU. Yes baby at SCBU.

Over the last couple of days I had your views and I had a chat with some of the parents who have a baby on SCBU and we've gotten comfortable with the idea. To be fair. It looks like there are babies on SCBU that re sicker than ours, that for example are still on oxygen. My baby is not sick as such, just premature. (Hopefully it stays that way!).

The nurse did say that she's looking after 4 babies, 2 of which should be on HDU, but HDU is full. This is not particularly what we wanted to hear, but hey ho. They are looking at opening the third nursery to space out the workload.

In the mean time my little one is taking her milk well, she's almost back to birth weight and she's pooing for Britain. So so far so good!

Good news - I hope your DD continues to improve.

The limitations on NICU/SCBU staffing and capacity are dire but at least the nurse was honest with you.
DS pipped a low birthweight baby to the last NICU bed and later on was moved to the ward with me rather earlier than would have been optimum, so I know how you feel.

Keep asking questions and stating when you're not happy with a situation. Most staff are professional enough not to be obstructive and awkward when faced with parents' queries. Ignore the ones that aren't!

I think "See you in a couple of years" is meant to be reassuring, in some half-assed way, but I had it too and wish they'd write it out the manual.

Mandy21 Thu 15-Aug-13 00:01:30

I couldnt read and not reply, I'm so sorry for your loss, I hope your DD gets to come home soon.

Our situation was slightly different in that there were no places for my DTs at our local hospital when I went into labour at 27 weeks, so we ended up at another hospital 30 miles away - which just happened to be the Regional Specialist hospital for premature and sick babies. I was thrilled. But then at 19 days old (so still very little) they said places had come up at our local hospital and we could all be transferred. I just crumbled - I just didnt want to think of them having to make a 30 mile journey, to somewhere no-one knew them, or me, obviously thought the staff wouldnt be as knowledgable etc.

It did all work out but it was definitely fear of the unknown. I agree with everyone else who has said you just have to be upfront with your concerns even if it is about a specific member of staff. Just spend as much time as you can there so you can see whats going on. I do agree too that babied are usually only moved on when they're well enough, so its a good sign.

Good luck.

AWhistlingWoman Fri 16-Aug-13 17:52:57

Hi didals

Glad that you are feeling more comfortable with the idea of SCBU. I also had a premature surviving twin and I was soooo nervous when she moved from NICU (we had been there three months and I trusted the unit a lot) fifty miles down the road to our local SCBU! But it was fine once I had got to know the staff and how things worked.

I am so sorry for the loss of your daughter's twin. I'm also sorry that you had an encounter with one of the 'housebrick' types. I was also got the 'you should be grateful . . . ' comment on a number of occasions. It stung me horribly sad

valium I'm sure they said the same about me!

countrymummy13 Fri 16-Aug-13 22:25:08

Hi OP

Congratulations. And very heart felt commiseration.

My DS was born at 27+5. He's 18 months now.

I can't imagine any parent feeling comfortable when it's time for their baby to move out of NICU. Our DS moved over to HDU after a few days, still with a central line and not 100% milk. Then SCBU a week later.

It's such a raw, exhausting, traumatic time. My stomach churns just thinking about it all.

It is a worry when they move. But of course they have to. And it's good he's doing so well.

Looking back now, I think one of the biggest hurdles we prem-parents face is realising that they are our babies and that we don't need to seek permission to look after them. It's such an alien situation and environment for us that it's easy to feel like the hospital is in charge. That's how I felt anyway, until quite late on.

We did have a couple of issues in SCBU. On one occassion, over the course of 2 shifts, DS missed a feed!! One feed was late, knocking them all forwards. Then the next shift another feed was late. Which meant over 24hrs he'd missed a feed. Even though only 7 of 8 feeds were listed on the daily feed sheet no one noticed during hand over. I came in, noticed, and made sure he caught up.

I don't want to scare monger. This was an isolated incident during 7 weeks of excellet care. I'm just saying don't be afraid to be a parent. Check everything, question everything and make sure you understand everything.

Good luck. x

Coconutty Fri 16-Aug-13 22:28:32

Glad things are going okay for your DD in SCBU, hope she continues to improve. X

Dildals Fri 07-Mar-14 21:43:57

She came home after 7 weeks in hospital. She's doing fine now (I think!). She's now 7 months actual, 20 weeks corrected.

I thought the hospital would implode when we left, Wizard of Oz style, with all the pent up emotional energy I had stored up there, but it didn't. Am still surprised it's still there every time I see it!

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now