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:

Badgers I hope the staff will start changing his nappy at appropriate intervals and communicate the rationale behind their approach to the OP because at the moment it seems like they may be letting this baby down.

But most of all I hope you get him home soon Microchips

Micro, that is where my DD was in SCBU last year. Please PM me if there's anything at all I can do. I'd be really happy to tell you more about how we handled it.

Micro, I also have contacts from the local LLL group who would be vv happy to help with breastfeeding advice. They might even be able to speak to the staff for you or at least come out and see you and your wife.

Sorry if I've missed this bit OP, but if your wife isn't rooming in, has she been advised on the importance of expressing through the night at home (though I agree with those suggesting she rethink that bit).

My DS was in scbu when he was born in November. I also had a CS.
We did kangaroo care. I basically spent all my time topless in scbu with him on my chest and both of us wrapped in a blanket.
The more skin to skin the more success with feeding and it also helps regulate temp and blood glucose too.
Hope all is well and you are home together soon.

badgers: the difference is that this little boy is full term and feeding well. Yet they are treating him as if he is very prem or unwell.

op, I did find the nurses pretty clueless about breastfeeding when my ds was readmitted (jaundice, at 3 days due to milk not coming in). They wanted to bottle feed; I said I would express and syringe feed; they said no. The reason? Bottle feeding was quicker. I had to stand my ground and did it all myself but they made it clear they thought I was wrong - but there is a difference between what is convenient for them and what is best for baby.

I was vindicated next day when my milk came in, ds was recovered and the feeding counsellor praised my efforts in front of the very stroppy nurse.

Micro, I have PMd you

I think your wife might find it easier to stay overnight to get breastfeeding properly established. It will be much tougher if she's apart from the baby half the time. Is there a midwife led unit you could ask to be transferred to while breastfeeding is established? I did that after DS was well enough to be away from SCBU and the midwives were much more supportive of being flexible and feeding on demand.

My wife IS expressing milk regularly through the day and night. She's not worried about losing sleep, of course we both know we're going to be short on that for a long time but she feels she won't sleep at all on a ward. When she was on the recovery ward she got no sleep at all and can't sleep during the day as the only place to rest in his room is in a chair. She's not getting to sleep when he's sleeping like she will when he is home so yes, she does need to sleep at night time if she gets a chance. I'm not going to make her feel bad about that.

We've discussed it this evening and we're going to have a early night so she can re-energise and get to the hospital as early as possible to speak to the doctor. We're gong to tell them we want to exclusively breast feed all day with no top ups and my wife is going to try to stay there over night too to feed all night. Hopefully I will be able to stay too, to support her. Probably on the floor

Rooming-in can be quite lovely because your DW and DS would have a room to themselves (or at least this is how it works here) and you and her would be doing all his care yourselves with help at hand if there were any issues.
Do consider it.
Anything to prove that you can manage and you can get him home .

No one is suggesting you should make her feel bad . We were just suggesting that it might be a quicker route to getting home.

I roomed in with DD1 for about 10 days. It was really nice. My own room and shared loo. And meals delivered to my four. And sometimes they'd give DP a meal too.

It really gives you the chance to feed on demand and bond. The student midwives used to come in and chat to me at night.

Four? I mean door.

badgers: the difference is that this little boy is full term and feeding well. Yet they are treating him as if he is very prem or unwell

My son was full term (40 + 11) it's not unheard of for full term babies to need SCBU.

I'm no medical expert but I doubt the hospital would be keeping Micro's child in SCBU if he weren't unwell.

My DS was full term and needed scbu.

I refused formula, I even wrote it in my handheld notes so they put him on a glucose drip instead. I expressed for 30 min every two hours before he was well enough to be out the incubator and latch, and thereafter I sat with him on my front and latched him on any time he was awake and rooting.

I do second the idea of rooming in though as it really helps establish milk supply, there is nothing like a baby to get the hormones flowing, a pump doesn't do the same job and in the early days, milk supply is mainly hormone driven and needs the correct stimulation which a pump doesn't give I'm afraid.

Nothing constructive to add, just sending you my well wishes.

Sorry, wasn't suggesting making your wife feel bad. I know the not-being-able-to-sleep-on-a-ward thing only too well myself, unfortunately .

Good luck with your plan for tomorrow. Just focus on doing whatever you can to get him home as soon as possible.

It all probably feels awful and never-ending just now but it hopefully won't be too long now till you get him home, and things will be so much easier then.

I didn't mean it in a way for your wife to feel bad.

Women who have just had a baby hormones are all over the place, a new mother needs support or PND can happen.

Encourage her to spend the night, this will only be a short term thing.

You sound like a very supportive husband and will take your responsibility to your baby and wife with pleasure. Tell her once the baby is home then catching up on her sleep will be the priority.

It is so shocking to hear nurses say what they said about making a rod for your backs, essentially. Your baby needs to be fed every two hours and this is the maximum interval, not the minimum. On demand is preferable to any schedule of course.

Your whole experience sounds horrible. I hope the baby keeps on improving (despite what is being done to him in the name of medical care by staff there) and can be discharged soon so you and your wife can do what he needs. He really needs milk.

my 37 week DD was 4lb 6oz and had issues with keeping her blood sugar up and was in NICU/SCBU for 3 weeks. For the most part the nurses were great but one said I shouldn't cuddle my DD so much during the day as she was then unsettled at night for the staff...
I was furious and completely ignored her. I also got DD out of incubator when I wanted to and changed her as I felt she needed it.
She was maintaining temp etc, just in a incubator due to her long line that was in.
Im also a paed nurse so maybe that made me a bit bolder?

Hope you're little man is home soon OP.

Hi, congratulations on the birth of your son! Sorry to hear about the care you experienced. I am so pleased you are challenging this and doing what you feel is right for your son. Telling you you can spoil a baby is such outr
Outdated rubbish, nurses are legally obligated to give evidence based advice and it sounds like this is not happening. Also blood sugar and temperature control are closely related lying in a wet nappy is not conducive to good temperature control. I would expect an apology for the spoiling comment and the 9 hour nappy and an assurance that these nurses will receive training on these issues. Wherever possible parents should be encouraged to take care of their baby and to lead their care plan, he is your son first their patient second. Please refer them to the Bliss Family Friendly Audit/Accreditation scheme, it may help them make some big improvements. Also the Bliss helpline are great for support and advice.

Where is this hospital have I missed it? Rooming in is the only way to go I'm afraid. Most scubus have rooms that are not on the ward. No need not to get any sleep but you will be expected to do all cares and if that means getting up every hour that will happen. Also , don't be surprised if they show you how to top him up with a tube. Some places even send them home with one.

Haven't read the thread but this is our experience....

Our baby was born at 36+5 weeks Almost two weeks ago via c section and he was taken to nicu with grunting and low sats, he was put straight on cpap a Machine to open his lungs, he was on this for around 10 hours! He also had a chest X-ray and they found him to have mucous on chest but they weren't sure if it was a chest infection so treated him anyway!5/7 antibiotics! we were advised not to try and feed him for the first 48 hours to let
Him sleep to fight off any potential infection! I expressed but our nicu didn't offer me skin to skin or support with bf, so I decided to express and give via a bottle! Baby was also on a dextrose drip to maintain his blood sugars as I'm diabetic! I also never seen a baby doctor all the info I received came from a nurse or a senior nurse which I thought was poor! When mini me was weighed in day 5 he was only just within the limit they allow! He's gaining weight now and is smashing! No not smitten no not me !!

In the end we just ended up "helping
Ourselves" so to speak regarding to lifting him and changing him. If I wasn't with him the nurse would ring to say he needed a feed!

Nicu are very over stretched and I wish our experience was more positive so I feel your frustration! My mini me is home and is fabulous!!

Ask questions! He is your baby!! Natural gut reactions take over!!

Congratulstions

I've just read all the thread now. Can't believe how backwoods that ward seems. You should be on the round today with a list of questions. Demand to room in and to be woken every time he's looking for a feed.

Many congratulations. Sorry you have had a tough time. You have done the right thing by standing up for what you want. I have been there and it is very hard. I am now a bf peer supporter in my local SCBU.

You don't need permission to cuddle your baby. Hold her as much as you want. Feed her as much as you want. You will all be home in a day or two so demand feeding while you are with her is the best way. Yes there will be a routine for the nurses to follow and they can do this overnight. I bf my son (long term SCBU baby) on demand in the daytime and he had tube/bottle overnight. In fact it can be helpful for babies who are to be bf to have the tube in for longer as the bottles can confuse them.

My local SCBU no longer puts babies on four hourly feeds as it's not baby friendly. Three hours is the max. A bf baby will almost certainly be hungry after this time. You do not have to agree to top ups if you feel baby has fed well.

You can try local bf groups for help and advice. There may be a peer supporter who can visit you in the hospital. When you are feeling strong enough your feedback will also be very useful to the hospital. I have seen real changes in my unit.

Stick to your guns. I wish you all the very best and hope you are all together at home soon.