Stuck in scbu, feeling very empty and lost, anyone else having/had a scbu experience?

[AlisonDB]

My baby boy was born on December 3rd (3-4 weeks early,) 36-37 weeks weighing 5.1lb,
He had a very very traumatic start and we very nearly lost him, we had a very emergency c section due to him having a very weak heart rate,
After birth he started breathing by himself after about 4 minutes and from the theatre he was transferred to the scbu.
Where he was placed on oxygen and had an IV for his glucose.
In the 1st 2 weeks he was there they ran test after test after test, and seemed to be using his poor feet as pin cushions!!
The 1st 8 days although horrid, I was there with him, I could cope with that, (although not able to sleep next to him)
But when I was discharged this is when I began to really struggle!!!
He has now been there for 24 days, and although he has made progress he's off the oxygen now for over 1 week,
He's still struggling with his bottles and the nurses seem to give up on him to fast and resort to quickly to tube feeding him.

His conditions for him to leave the hospital are incident free on his monitor for 3 full days,
Finishing his feeds within 30 minutes...
Putting on weight...

I just don't see an end to i feel very very low,
and have been thinking the most awful things that i am ashamed to admit too and tonight when I phoned to see how he was I was made to feel like I was a bad mum cos I wasn't there to see for myself,
The nurse made me feel I was wasting her time giving me an update,
I'm sick of being a visitor to my own son,
I want to bring him home do I can be his mum
I'm fed up of having to ask a nurse for permission to change his nappy or wipe his eyes clean.

I just don't know how much longer I can emotionally go through this for,
He has to have heart surgery sometime between March & June, and I will be back stuck in an intensive care ward
I just feel like I'm drowning,
but if I admit how I really feel to people in RL I they'll think I've lost my mind!

And I'm sick to death of thoughtless comments by idiots:

" oooh enjoy the rest, while you can"

" jealous of you getting full night sleep, can't remember the last time I had one of those"

"Ooh I'd be made up if I could hand my baby over to someone through the night"

"must be great all the lie ins your having!"


Aaaaaaarrrrrrrrrrrrrggggggghhhhhhh sorry for the rant!!

[ballstoit]

That's great news op. DTNephews were born at 30 weeks earlier this year and, although I cannot wholly understand, having supported DB and SIL I do have some understanding of how you must be feeling.

Littlest twin nephew is still partially fed by NG as he can't suck for long enOugh to get the volumes he needs, and is also still on oxygen. It all seemed very complicated when he first came home, but we have all got used to it and SIL copes very well.

Ask for help with meals, washing and meals from friends and family...we wanted to help and that was the best thing we could do so that they could concentrate on the babies.

What part of the country are you in? SIL has had some helpful support from other parents, organised by a local charity.

[applecrumple]

So pleased DS is coming home! Good luck & if you need to chat to us again just post!

[minipie]

Congratulations Alison! Great news that you can take your DS home. Hope all goes well with his operation.

Mrsbugsywugsy, as others say, it's pretty much guesswork what they want in the early weeks. my DD is now 9 weeks/3 weeks corrected and I am still guessing! I doubt the nurse knows any better than you in this case. Is your DD a sleepy baby/reluctant feeder (mine was)? If not then she'll soon let you know if she is still hungry. By the way, I found it worked best to do nappy change before feed rather than after (various reasons: 1 it meant I wasn't lifting Dd's legs when she had a full tummy, 2 the change woke her up so she fed better and 3 she often pooed while feeding anyway!) - that might work better for you?

[Mandy21]

Hi there, that is great news. You must be thrilled. Its exciting, nervewracking, overwhelming all at once.

I just wanted to say your feelings are not wrong or bad and you're not a bad mummy. As everyone else has said, only people who have been through the experience of having a child in SCBU will know that you're going through. Its hard, but just ignore the flippant comments, they know nothing of the hardship of the situation.

I had twins at 27+6 and I remember being told that if everything went well, without any complications, I could expect to take them home around their due date. I just could not comprehend how I would get through the next 12 weeks with them in hospital. I just couldn't see the light at the end of the tunnel. Don't feel guilty for feeling like you do, its normal.

Good luck with getting him home!

[mrsbugsywugsy]

Great news op, let us know how you are getting on.

We have also been discharged. Thanks to those who gave me advice. Things are so much better at home although now we have to deal with the responsibility of looking after the baby on our own.

Still struggling to get bfing right, dd is still sleepy and sometimes has to be woken for food.

[mrsbugsywugsy]

PS We have gone down the route of feeding dd if she shows the slightest sign of hunger for now., to get her weight up

[bytheseaside]

congrats op!

Mrs bugsy you have done brilliantly. its so scary to be home at first but you will get more confident every day seeing your baby thrive. i was in your position a couple of months ago and drew a lot of support from a nice hv and surestart bf peer supporters - i think it really helps to have people encouraging you. i am now in bed bfing a strong guzzly little 9 lb poppet - things get better every day :)

op, i had a lot of similar unhelpful comments from nurses and friends, my scbu experience is why im one of the few new mums i know who doesn't really mind being up all night with my baby - it feels like a luxury after the first few awful weeks.obviously it would be lovely to get some sleep, but id never willingly hand her over to anyone else

[minipie]

Mrsbugsy, great that you are now home, well done. If your DD is a sleepy baby and doesn't always feed well I think it's right to offer a feed whenever she looks hungry (or every three hours if she doesn't demand sooner than that). Waking a sleepy baby to feed is easier said than done - I found taking DDs clothes off was the only way to get her to wake for feeds sometimes, this lasted until 41 weeks when DD finally started to demand feeding regularly. Hang in there and good luck.

[Wickerbox]

Hi Alison. My twin boys were born at 29 weeks on 19/12/12 & spent 8 weeks in SCBU, they've been home just over 3 weeks now. It's really tough, you get involved in their cares during the day but come home at night & its almost like you're not parents as you have no babies with you. My advice would be to chat to the staff & other parents & use them for support; as one nurse said to us "no-one stays in SCBU forever" We have found that we felt much more confident when they did come home due to the support we had when they were in SCBU, compared to other mums in our antenatal group who had one home after one night. I have made some good friends who's babies were in with ours & chatting to them helps as they've been there. It's a very up & down journey as things would all be going well and then and of them would have a bad day & I would get really upset but you just have to take each day as it comes. My logic was that they were doing in their incubators what they would have been doing in my tummy but it was monitored 24/7 & they were safer there. Take care & stay positive; he'll be home before you know it xx

[mrsbugsywugsy]

just seen this thread has been bumped again.

dd is now 11 weeks old, I am ebf and she is putting on weight marvellously, she was over 9lb at the last weigh in. we certainly don't have to wake her to feed these days

thanks to all of you who gave me advice at such a stressful time.

Alison I hope your ds is also doing well.

sometimes I feel sad that our first week wasn't how I'd hoped, that someone else gave her her first feed, changed her first nappy, etc. but there are also some positives about having been in scbu - dd will happily sleep in her Moses basket (because she got used to sleeping alone?) and will take a bottle of expressed milk.