to expect our SCBU baby to not be neglected?

[MicrochipsAndMemories]

Bear with me, I am very tired and haven't had much sleep since our son was born at 1:40am Tuesday morning.

The back story - IVF baby. Measuring small at 36 weeks (actually measuring as 34). Monitored for a week. My wife had all the signs of pre-eclampsia so they stared induction at exactly 37 weeks. Induction worked but after 16.5 hours of contractions they rushed my wife in for a emergency c-section as baby was distressed.

Baby was born weighing just short of 5lb. Took a while to breath but other than that doing ok. They took him straight to SCBU because of his weight and his blood glucose kept dropping.
My wife was recovering on a different ward from her c-section but managing to spend quite a bit of time with him. She was discharged on day 2 and since then we have spent all day sat with him.

He was moved out of a incubator into a cot this morning because he's fine other than needing to be able to drink from a bottle or breast. He has a feeding tube which they said was for if he wont feed.

When he is crying they just give him a dummy while my wife is using a machine to express milk sat next to him because the staff don't want us to disturb him between his scheduled tube feeds? Not sure how he's supposed to learn to take a bottle/breast if they don't let him try. He hasn't managed to suckle properly on the breast but they really haven't allowed him to try more than I think 3 times since he was born. My wife is using the pump to get milk for him to have from a bottle but they don't want to give him it in a bottle because it will wake him up so they give him it down his nasal tube instead. They say he can go home once his blood glucose has settled and he's feeding from either bottle or breast properly, how's that going to happen if they wont let him try? It's frustrating and it is starting to upset my wife.

My wife had a 15 min cuddle earlier and that's all she got today. I would say she has had a cuddle with him for no more than 3 hours since he was born. This just seems wrong. How are they to bond and how is he to learn how to breast feed if they wont let him try?

They also wanted to leave him 9 hours without checking his nappy which seems like an awfully long time for a new born baby, or any baby really.
We changed it at 2pm and then they wouldn't let us change it again because, again, it would wake him. It got to 8pm and we asked if we could change it before we left and they said no, "a nappy can last all night if you want it to" and they said they'll change it at 11. 9 hours after his last change??? So I just changed it anyway and it's a good job I did because it was soaked and soiled. They then wanted us to lay him straight in the cot to settle himself but I passed him to my wife to have a good cuddle before we had to go home.

Tomorrow should we just do the things we want to do or should we trust that they know best? My wifes instincts seem to be right? He did need his nappy changed. He does want to suckle, they just wont let him :(

Any advice would be great.

Thank you. Sorry if it doesn't make sense, we're both really tired :lol:

Seriously they said that?! That's crazy breast fed babies usually do not wait 4 hours. My two but the time they were in a cot fed fed every two hours, cluster fed in the evenings....basically did all the things a baby who hadn't had such a rough start did.
Have they mentioned rooming in yet? I'm not sure if it's standard practice (my boys were in for month and months) but before we got home I stayed over for 48 hours 'rooming in' doing all care and feeds to ensure there were no issues.
Congratulations all round on making such great progress.

Where is this SCBU? Is it actually in the 1950's!

Yes, where is this SCBU? Are you in the UK?
The more I think about it the odder the advice re feeding seems tbh...

Oh ignore them, he's yours you can 'spoil' him as much as you want!

Aw, sounds like your little fella is doing great

Hope things continue to improve, ds was prem and severely bruised so contact in nicu for first week was very limited.

As already said, different nurses advised different things but after a week of nicu ds started to latch and take in milk.

I spoke to the nurse manager and said I'd like him to feed on demand and not have to be tube fed when I went home that night. She told me to pack a bag and come back, they let me room in for a week with him.

It was lovely, we were left in peace with ds feeding on demand every couple of hours. Ds had prolonged jaundice and double phototherapy for ten days so I did limit cuddle time just to lengthen the time spent under phototherapy.

Fingers crossed your little one will be home with you soon

I'd have thought that the better he is at feeding the sooner he should be able to come home and then they won't need to worry about his overnight care at all.
Unless it's going against medical advice do what you need to as parents. Request to see a Dr and see about getting home. They will give you a rooming in plan.

Hi Microchips, and congratulations to you and your wife on the birth of your son.

I am so appalled that a nurse(?) told you that feeding your baby would lead to a 'difficult child who expects attention'. But it doesn't surprise me - I was told to stop holding & cuddling my son or he would become 'spoiled' - though that was 25 years ago. I thought perhaps we'd progressed but maybe not.

Anyway, ignore them and enjoy this lovely time with your new baby.

They seem to know very little: your baby was born at term, so all the stuff about needing to sleep is suspect. Your baby is breastfed and thus needs feeding on demand: when my DS was born at 37 wks and got jaundice, I was told to set the alarm and feed. him every 2 hrs. Get some support from a specialist breastfeeding expert, feed him whenever he's hungry - and well done for being such good parents and fighting his corner.

My D's was born at 37.5 but was small dates at 4lb 11oz (I had hyperremesis when pregnant).

I was experienced at bfing (he was dc3) so was confident, I understand you might be less so.

I refused any formula and bf on demand waking him to feed after 4 hours if necessary. He gained weight and did well.

Good luck and once you are home I suggest doing very little but sitting and feeding him plenty. I watched lots of downloaded boxsets! Also I found a Moby wrap sling helpful for keeping baby close.

Congratulations on the birth of your baby :o
Yes, feeding him will lead to him demanding attention, and tbh given he can't even hold his own head up, isn't getting attention good thing?
More specifically he'll learn that you and his mum love him and that when he needs something that he can't even articulate yet (wet bum, hungry, thirsty, scared, tired, or even yes, just needing a cuddle, you respond. Which is a very very very good thing. Don't let anyone tell you otherwise.

didnt read all the replies but in case anyone hasnt told you already they dont want to wake the baby up because activity reduces sugar levels that said they should be facilitating breastfeeding there is no reason why your wife can't cuddle and allow the baby to sleep on her

my son had low blood sugars too it settles down as soon as feeding is established usually x

congratulations on the birth of your son.

BF babies feed more frequently than formula fed, so 4 hours is too long. Insist on demand feeding him.

I think the nurses are somewhat confused, when a baby is formula fed by tube the exact daily amount is worked out and divided by 6 , so thats why they are used to 4 hourly feeding. this isnt the case with a bf baby, they will often feed frequently during the day.

Sounds to me like the nurses were treating him as you would treat an extreme prem ie minimal handling but he's virtually term so its inappropriate.

If they are concerned about how much he is getting they can weigh him before and after a feed to estimate how much he has taken.

Stick to your guns, you are the parents, its your baby, they can only make suggestions, you dont have to follow them

Yes it was a nurse who told us we would spoil him (I keep calling them midwifes but I'm sure they are nurses)

They still don't seem to get that we want to breast feed him and don't mind if its every 2 hours. Even after he had a good 25 min feed earlier they still topped him up with formula down his tube to make him sleep longer. It's nothing to do with his energy, they have said a few times now that it's purely to establish a routine and not have him calling the shots. He's not even a week old yet, don't think there's much risk of him taking over the world just yet simply because we fed him more often

They do have a couple of empty rooming rooms but my wife has loads of trouble sleeping in strange places and so doesn't really want to stay here because she won't sleep and will have no energy the following day. Surely she should be able to breast feed on demand all day though and then they can tube feed him overnight if they can't be bothered with a bottle?

The hospital is Airedale hospital in Keighley West Yorkshire. The labour ward and staff were amazing, it's kind of gone down hill since then

Hopefully he'll be home soon.

DD2 was a SCBU baby as she had a chest infection, hole in the heart and heart murmer at birth.

It was one of the hardest times of my life and i hated every nurse in there because i wanted to hold and cuddle my baby but i couldnt because of the machines she was on. Like yours, she was in a cot but the monitoring equipment is to sensitive that any movement she made set alarms off.

They have the rules for a reason but you just need to ask.

Well, depending on how strongly you and your DW feel about it you can certainly insist on holding/feeding him as much as you want and arrange to meet the consultant in charge of his care to find out what justification there is for this.

Topping up is not uncommon to get more calories in new babies and to help with regulating fluctuating blood sugars, but the same can be achieved with BFing on demand. You don't have to consent to FF top-ups until you have understood the resonaing for it.

Or you can just roll with it and do your own thing when you get home. Which will be soon, I'm sure .

FWIW, DS2 was in NICU initially, totally tube-fed, then SCBU and tube-fed until he sussed suckling himself and stopped being sick quite so much (turned out he had reflux, but that's a whole other story), he was being fed 4hrly a mixture of BF and FF and when he went home at -4 weeks corrected we v quickly reverted to feeding on demand.

He's now 10 and built like the proverbial outhouse…

NICU/SCBU is the scariest place on earth and yes, there are rules for a reason, but this is a term baby without additional health problems, JerseySpud.
I do struggle to understand why they seem so rigid and not really in keeping with 'BabyFriendly' initiatives and similar?

they have said a few times now that it's purely to establish a routine and not have him calling the shots.

Tiny babies are supposed to call the shots

They communicate their needs and their parents respond by meeting them. That's how it works.

I'm betting you'll be discharged within the next day or so ;-)

Baby is term, and establishing feeding like a pro. Ask to speak with the consultant about the rationale for top-up rather than feeding on demand at this point, now that baby is latching and successfully feeding.

Once the consultant was involved, dd2's feeding plan was formalized around our wishes, with the consultant's agreement.

Congratulations!

(I have to say though - I didn't entirely mind the 4 hour feeding schedule - and I absolutely understand that an entire scbu full of babies feeding on demand would be an impossible ask for staffing levels)

I set my alarm to express 4 hourly overnight, and we had to set the alarm to feed her overnight when she came home (at 5 weeks) - she couldn't cry for a long time, so that way we could make sure she was getting some sustenance! In the end we were completely nocturnal, as she couldn't feed during the day (long and irrelevant story) but once you get home, it will be easy enough. Apart from the lack of sleep and whatnot, when the 4 hourly schedule will be a distant but pleasant memory!!

Your wife will have to stay a night or 2, they will not discharge the baby until she does.

Encourage her to stay overnight and get the feeding established.

Congratulations on your baby. My DD was born at 32 weeks and spent 7 weeks in SCBU. We had horrendous problems with b/f and a lot of this was down to the attitude/lack of knowledge of the nursing staff. It sounds like your baby is doing well and, if that's the case, the sooner he gets home, the better for all of you.

Your wife can't be forced to room-in with him - but, to be honest, if he is has stabilised and is feeding normally and you want to get b/f established so that you can get him home as soon as possible, I think your wife needs to bite the bullet and be there overnight with him feeding him rather than him being fed by the NG tube. Rooming-in is probably the easiest way to do this. Your wife is very likely going to be sleep-deprived for the foreseeable future once you get him home so perhaps she should look on a sleepless night or two rooming-in as good practice !

If rooming-in isn't an option, however, my advice would be for her to try to be with him till late at night (I mean really late at night) and then back as early as she can manage in the morning so that he is being fed on demand as much as possible. And totally ignore the comments about the baby calling the shots and being spoiled - that's just someone's personal views coming through IMO. Your baby, your choice (unless there are strong clinical indications otherwise).

It does sound like you will all be home soon, however, and then it will probably feel so much easier (that certainly was the case when we got DD home).

First you sound like fabulous parents and your little one is lucky to have you.

Second, I have no experience of scbu but do have two children the second of which is currently camped on my right boob while holding the left one protectively in case it wanders off or I try and move it...,..apparently she's not finished dinner. I know my place and who's calling the shots.

You two cuddle that baby as much as you can. You've waited long enough. My first was conceived through IVF, just try and enjoy it when you can.

Congratulations on your little boy! Having had a 28 weeker who I breastfed, I would definitely recommend rooming in asap. The sooner you can show that your son is feeding on demand and gaining weight without the need for tube top ups, the sooner he will be home. You might be able to stay overnight with your wife, if not you could stay til late at night and be back at breakfast. The time I roomed in dragged but just pack plenty of magazines, snacks and enjoy the cuddles.

DS2 was in NNICU then SCBU and I felt like Jerseyspud. It is awful being told when you can and can't touch your baby, it is soul destroying when you drag yourself to SCBU at 2am to feed your baby but you can't because he's asleep. I have never felt more desolate.

Be reassured that they are looking after your baby when you're not there and everything they are doing is to get your baby better. One of the SCBU nurses (the scariest one) came to my room at six o'clock one morning and said "He is yours, he will always be yours" but I had to let them take control for that brief period to give him the best chance to survive.

I promise that they are not trying to piss you off or undermine you or take your baby or treat him badly. I hope one day you'll be able to appreciate everything they're doing right now.