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:

our main concern is the nappy changes really.

Another one saying this sounds odd. My dd2 was in scbu for 2 nights - so I have little experience to others here. But the nurses encouraged contact, regular changes etc. They even arranged for DD1 (who was 4 at the time) to give her a cuddle - tubes and everything (the joy on DD1 ' s face was something to behold). Go with your instincts. And CONGRATULATIONS!

The care you've described sounds similar to the 1st week of my baby's stay in the NICU. What they told us was that they try and keep handling to a minimum as the best thing for them to grow is sleep.

However my baby was half the weight and 5 weeks more premature. By 37 weeks (still weighing less than 5lbs) she was home, so based on weight and gestational age alone it seems odd they are being so cautious.

I found very little information was volunteered but nurses and doctors were happy to answer questions. So my single piece of advice would be to keep asking.

Best of luck - it's a tough time .

Congratulations on the birth of your son.

As a SCBU nurse I am very saddened to hear of your experience so far. Your baby is term and if in a normal cot must be maintaining his temperature. Your wife should be being actively encouraged and supported to put the baby to the breast regularly, especially if he is awake and rooting around. We are sticklers for routine in a neonatal unit but that tends to go out the window when trying to establish feeding. A baby can not learn to feed if it is not given the opportunity to try. If his blood sugars are still unstable he will be carefully monitored and he will need to be receiving a set volume of feed, which he can have via his tube after/whilst being put to the breast or during a cuddle.

I would recommend lots of skin to skin to encourage breastfeeding and bonding. Yes he needs lots of rest for growth and development but what is more peaceful and comforting to a baby then a beautiful skin to skin cuddle with Mum or Dad.

Nappy changes I would insist on at least 6 hourly- more often if needed.

Please speak to your sons consultant and the nurse looking after him to put a plan in place for what you want to achieve.

Yes I remember being chastised by a midwife fir picking up and cuddling DD1.

It doesn't sound great, but don't despair re the bonding & breast feeding. My twins were born at 32 weeks and were fed by nasal tube for a good couple of weeks - they were healthy but small - and I didn't have a massive amount of cuddles/skin to skin time with them. They were in for 3 weeks which seemed like an eternity, but I managed to breast feed both of them for over 3 months and 19 years later we still have a pretty strong bond.

It all sounds very similar to our experience. Similarly to Miaw, I'm afraid I had to get my DH to have a bit of a nag at them in the end. Both times they were quite defensive and argued she just needed to sleep etc, that was the priority, but funnily enough after both times they changed her schedule to allow more feeds from me. One day her tube actually fell out so they decided not to 'bother' putting it back in. From that day onwards we fed on demand and she went home shortly after! Did make me think could she have come home much sooner then. Don't give up. I know it is so hard. We have now been ebf since she came out despite her starting out on bottles of formula. I also recommend talking to the doctors. They always say the nurses are the experts but at the end of the day they are higher up and the one we spoke to seemed to pull a few strings.

Ds was in SCBU/NICU for 7 weeks. By the time we left he was beyond term so much like a "normal" baby. A lot of this sounds horribly familiar. We had to ask permission for everything, were not allowed to demand feed even when establishing bfing, insisted on top up tube feeds even when he was feeding well and gaining weight because they couldn't measure how much bm he was getting, they didn't want us cuddling him too much even when he was term and kangaroo care was never encouraged despite plenty of posters up around the unit. I was at the hospital 12 hours a day and was often told to go home or to put ds down as I would spoil him.

I think a lot of this was based on not many nurses looking after lots of babies at night - I couldn't be there 24/7 and it's much easier for the staff if the babies are all on a strict routine and not used to being picked up or settled to sleep.

When ds was in SCBU he was my first baby, I was lost and terrified and just did what I was told (although I did start to get stroppy about holding him towards the end). If I did it again I would be a lot more assertive and argue more for what I thought was right for my baby, not the nursing staff. I have also been in hospital with ds when he was a toddler and there is no way I would have left him for a minute, the children's hospital had beds for parents next to every cot / bed. It seemed very unfair to me that if ds had come home even for a couple of hours and then had to go back in, he would have been in the children's hospital where I would have been able to sleep next to him and be n charge of his care.

Oh, and despite insisting on a strict feeding schedule and top up feeds, I successfully fed ds for two years so it is possible! There was a great bfing consultant on SCBU who helped me a lot, you could ask if there is one on yours?

Having spent time with DC in four different SCBUs I think who you speak to will give you a completely different picture to be honest. One nurse will say it's best to leave in the cot, the other will say pick them up, the registrar will suggest a dummy, the next nurse will frown and purse her lips. One hospital will be totally pro breastfeeding, another will pay lip service to the idea but have no idea about support.
It can be very frustrating. :(

My advice is:

Ask a senior member of staff what their policy is on family centred care and developmental care.

Ask why you are not being allowed to be part of the care the baby is receiving.

Request kangaroo care time with your son - if his nurse is 'too busy' ask for someone else to help facilitate this.

Ask if the nnu has a breast feeding specialist who can talk to you and your wife, and explain that you are keen to commence breast feeding, unless there are medical reasons for your son that make this not possible at the moment -and if so, ask what the reasons are.

Current thought is that family centred care is hugely beneficial to babies in neonatal units. Bliss have lots of info on this.

Congratulations on the birth of your son.

What's 'Kangaroo care'?

BTW OP - congratulations!

Hello,

Another one who has worked in SCBU here. It does seem odd that your baby of 37 weeks (if I read correctly) isn't being encouraged to take feeds by mouth whether that be breast or bottle. My understanding is that kangaroo care is a term used for premature babies who would otherwise be in an incubator so I think using the phrase in this situation will confuse the staff. What you are asking for is more about just the normal holding of a newborn by his parents.

What I would ask about is "rooming in" where the parents stay with their baby on the unit but in a separate room, then you could do what you liked with nappy changes etc. I'm afraid that like in all walks of life the staff will be a mixed bag, some traditional (eg leaving babes in cots, infrequent nappy changes) whereas others will be more progressive. If you don't want your son to have a dummy you need to tell them and your wishes should be respected.

After reading all your advice we came to the hospital ready to have it at it with them, in a nice way. over night his bloods stabilised and they are no longer even having to check it anymore since it's so good so now the only thing they are waiting for is that he will feed. He'd also had his nappy changed 4 times over night so maybe it was just the midwife yesterday who was tight with nappy changes. He's bing fed every 4 hours and we've asked to cuddle him while he's fed and that we want more cuddle time, the Saturday staff seem better. He was due a feed at 1 so at 12:30 we changed his nappy and my wife tried him on the breast. He latched straight on and has now been suckling none stop for 20 mins!!! We are so happy and the midwifes seem happy too.

Hi It looks as if I am late to the party! 2 iugr prems here and yes - 4 hourly nappies and all the kangaroo care you guys can handle and breast feeding too! Don't put up with anything less. But really glad it sounds like it's going better today. Congrats on the wee baby!

Congratulations. He sounds like he's doing great. My daughter had a similar start. Its tough, but it sounds like you'll be home in no time.

Oh that's great

What a great update, am really pleased for you all . Not long now and you'll be taking him home!

Great news. :) the Saturday staff seem better IME Saturdays and Sundays and especially the nights are "the mummy shifts" taken by the staff with their own dcs (when the dps are at home) whereas the younger staff like their weekends off.

Sorry failure to bold quote

he's just having another breast feed against their wishes He was crying and rooting 2.5 hours after his last feed but they said we couldn't fed him till 4 hours had passed because otherwise we'll end up with a difficult child who expects attention. The thing is, we don't mind hahaha and also, don't they always say on here that you can't spoil a newborn?
I think that they just don't want to have to feed him so often over night. It's not a problem during the day because we're here all day.

Was this a nurse that said that to you? You'll end up with a difficult child that expects a ttention by feeding him 1.5 hours early!!

I'm amazed.

Hopefully you'll all be home soon as they sound as odd as 2 left feet in that hospital.

Ah, great, it's all going well - I am so please for you all.

Congratulations on your DS's arrival .

I read your OP last night but couldn't post and clearly things have moved in the right direction since you first posted.

Yy to all the questions Pheasants has suggested upthread if you have further concerns.

My experience of SCBU staff was that they were very keen to explain anything and everything and that they encouraged holding and, in particular, skin-to-skin contact ('Kangaroo' care) when DS2 was born at 31 weeks some 10 years ago.

Re feeding: if your DW wants to continue BFing the best way to establish this in the early days is to feed on demand, NOT by the clock. Please get some BFing support on side - all hospital will have a dedicated specialist BFing support nurse or midwife.
Yes, tube-fed babies often get fed every 4 hours (whether that's FF or BM) and no, feeding on demand does not 'spoil' a newborn - I cannot believe that kind of rubbish is peddled in a specialist unit .
Allow him to feed whenever he want when your DW is there and then let the hospital do whatever they do overnight.

It sounds like he is likely to come home sooner rather than later and then you can please yourselves anyway .

Breastfed babies normally want feeding much sooner than 4 hours, it's nuts that they don't know that! Keep on keeping on and lots of luck to you all.