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

(36 Posts)
AlisonDB Fri 28-Dec-12 00:49:17

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!!

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 daysgrin

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.

Wickerbox Sat 09-Mar-13 19:39:12

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

minipie Sat 05-Jan-13 21:12:29

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.

bytheseaside Fri 04-Jan-13 01:36:17

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 smile

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

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

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.

Mandy21 Mon 31-Dec-12 16:04:11

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!

minipie Sun 30-Dec-12 15:45:41

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?

applecrumple Sun 30-Dec-12 13:26:08

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

ballstoit Sun 30-Dec-12 13:03:32

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.

Hi op, really good news!

If you need any advice about NG feeding then please pm me anytime, my dd has been NG fed at 3 different times in her life and it is hard to deal with sometimes. (more so with a toddler than newborn though!)

TheGirlOnTheLanding Sun 30-Dec-12 08:27:49

Alison, that's brilliant news! Tube feeding isn't hard, you will get the hang of it so fast, and you'll feel so much calmer and more yourself once at home. Good luck with it all!

MrsBugsy, it's hard for a newborn to know what they want I think so it's pretty much guesswork at the beginning. Once they're a little older though they start to develop a hungry cry that sounds different from their tired/grumpy cry. One of our SCBU nurses also showed me how to gently stroke our DD's cheek - if she then roots (ie turns to the finger and tries to suck) it usually means hunger.

Sounds like you are doing great and will have your wee one home soon too. Good luck!

GreatCongas Sun 30-Dec-12 00:15:52

Mrsbugsy
We had problems with weight loss and they wanted to put dd on a bottle or keep her in. Apart from the feeding by that point she was doing well so we got our hv to back is up in saying we weren't useless and would get help if needed and that she would visit and brought her home. Once home she settles down and put weight on fine. I think sometimes they just need mum and calm (no beeps or alarms) and they start to thrive

howiwonder Sun 30-Dec-12 00:12:55

So delighted to hear you're getting your baby home!! That's fab news.

I just wanted to say I know how you'be been feeling in many ways. I've had my 7 week old home for almost 3 weeks now after our hospital stay. He had heart surgery at 2 weeks.

Getting home makes a massive difference and you will definitely feel better when you properly start your life as a family together. It takes time to build up confidence though and you'll probably be pretty anxious- I know I still am, but it gets easier day by day. It's shitty that you werent encouraged to do nappies and eye care in hospital, the nurses in our hospital were keen that I did lots of that. I hope you get good support on discharge, hopefully there will be some sort of family liaison team who will help you.

Good luck and well done on making it through this awful awful time. X

MonaLotte Sun 30-Dec-12 00:12:34

Hi ds 1 was in scbu for 10 days on cpap for breathing difficulties so I understand how hard it is. That's great news OP so glad you will be getting your LO home soon. Ignore the thoughtless comments we all know what it's like so come on here to rant if you need to.

Mrsbugsywugsy you are doing brilliantly by the sounds of it. You will soon learn to recognise the different cries and to trust your instincts. One of the best pieces of advice that DSIL gave me was "if in doubt, feed!" It will help your supply and give you more confidence with latching. Sometimes as well new babies get so tired that they don't know what they want so. I promise you you will get the hang of it. It's very overwhelming for the first few months. Keep posting if you have any questions. We are all here for both of you.
Try and get some rest untill the next feed if you can xx

GreatCongas Sun 30-Dec-12 00:12:26

That's wonderful news
I came on to offer my hand and any useful gubbins that may be stored in my brains (dd is a 27+ Weeker) but it sounds like you don't need it grin

I am in scbu with my dd who was born at 35 weeks last week. I am having it easy compared to many on this thread as dd is basically well and we may be discharged soon (I am still a patient on post natal ward so can spend all of my time here ).

However I have found the last week so hard, I have been crying every day. The hospital is a long way from where we live and dp has a long and unreliable bus ride here every day. I feel so isolated when he leaves each evening and am starting to think I am cracking up. I had planned to read up on looking after a newborn, breastfeeding etc once I went on maternity leave so I don't have a clue and have to trust the nurses - who then confuse me by all saying slightly different things.

Also struggling to establish breastfeeding, at one point I was about to give in and bottle feed just to get out of here. Today I thought we had turned a corner as her tube finally came out and we have started to feed on demand, but I constantly doubt myself. This evening after dp left I fed for half an hour and thought dd was full so I put her down and changed her nappy. She then started screaming but I thought she was just upset by the nappy change so I left her a few minutes to cry herself out. A new nurse on shift came in and told me she was still hungry and needed to feed more. I then spent an hour getting stressed and trying to get her to latch again while she just wanted to sleep on my breast, before giving up and putting her down. She is now sleeping and I think I was right after all, but now I am too worked up to sleep myself. I am worried she was still hungry and will have lost weight next time. How do you tell if a baby is hungry but too tired to eat, or just wanted a cuddle? Is it the same for prem babies as a regular newborn?

This just isn't how I expected my first week as a mum to be.

Apologies for the long post but it has been quite therapeutic to write this all down.

ipswichwitch Sat 29-Dec-12 23:51:19

That's wonderful news! I'm so glad you have some sort of light at the end of the tunnel. It amazed me whenever we'd come onto Scbu on a morning and DS had some kind of improvement - tube taken out, removed from incubator, etc, as it seemed like he'd be that way forever.

He was born at 34 weeks by cs (after losing his twin brother), and our Scbu staff were fabulous. They encouraged us to do all his "cares" including tube feeds, while we were there. As I wanted to bf, we set up a schedule for expressing every 4hr day and night, and I'd bring the milk in next day for his feeds. We started on 1 bf a day as he didn't have the energy for more, then built up until he was ebf. I had to stay on the ward with him over the weekend before he was allowed home (at 3 weeks old), to basically demonstrate weight gain with me bf.

I did find the hardest part was people's thoughtlessness - assumptions that we'd get a good nights sleep with DS on Scbu (no, we spent most if the night awake and fretting about him), and one friend actually told me I had it easy recovering from a section with DS on Scbu, as she had a "nightmare" trying to recover from hers with a newborn and toddler at home - oh really? confused

I used to arrange with the staff the day before, which feeds I'd be doing and they put it into his care plan so I'd never get beaten to it by the staff. We would wait til he was sleeping and pop down for a coffee/food - it's easy to forget to look after yourself too - and staff promised to call us if we were needed in any way.

Good luck for getting him home. DS is a healthy, happy 14 months now and it all seems like a distant memory now

AlisonDB Sat 29-Dec-12 23:25:05

Thank you so much for all your advice, I can't tell you how good it feels to know my feelings where not the feelings of thoughts of a crazy woman! I'm usually very rational & logical do to have spent the past 25 days sobbing continuously has been very unlike me!

I went in to the hospital on Saturday after a rotten nights sleep to find that they had taken him off the monitor! I was amazed as I really hadn't expected it,
Then in the afternoon the Dr came to see me and asked if we could talk, immediately my heart sank and thought she was going to tell me something awful,
But it was in fact good news, the pediatric team have basically decided that there is no reason except for the tube feeding why he should remain in hospital, so now both myself and DH are being trained to tube feed him once we have mastered that he can come home,

They say the need for tube feeding is down to his heart defect and the fact that he uses a great deal of energy trying to finish the entire bottle.

So it looks at the moment like he will be coming home on either Wednesday or Thursday at the latest,
They want DH and I to stay overnight with him in the hospital, before bringing him home, just to have some experience of the night feeds,

I just can't explain how I'm feeling now, this is definatly the best/worst/most confusing rollercoaster ride I've ever been on.
Today walking in in to the scbu, I was so excited I could have burst!
God knows what I'll be like when we finally bring him home!

Thanks again!!
X

TheGirlOnTheLanding Sat 29-Dec-12 18:37:19

Alison, everyone above has said pretty much what I was going to say but I just wanted to add my in mumsnetty virtual hugs. The 6 weeks my DD1 was in SCBU were the most difficult of my life and I felt cheated of the 'baby moon' period my NCT friends had while I trailed up and down to hospital and sat by a cot or expressed or waited out the next four hours till my little sleepy head woke for another feed.

It's horrible, exhausting, overwhelming, you're not prepared for it and noone understands (unless you happen to know someone who's been there, or can befriend another parent in SCBU - I didn't, I found everyone was focused on their own baby and only exchanged pleasantries). But - and I know it doesn't seem like it - it does have an end, and it can be endured, you have the strength to get through it and one day it will be a distant memory.

I second getting the nurses on side - explain to the more approachable ones you are feeling sidelined, and want to care for your baby. There were always a few that my heart sank on seeing when I got into the ward, but the majority I found supportive. I also found sharing my routine with them helped - if they knew what bus I usually came on, they'd hold off a feed for a few minutes so I could do it. And I also second trying to get as much time just sitting and holding your DS as possible, if his stats are stable enough. Skin on skin time really helps establish the bond but it also calms and strengthens your baby.

Good luck, stay strong, and take good care of yourself - eat well and rest if you can - but above all, talk, to a trusted friend or on the boards here when you need to let off steam, and to the staff that seem amenable - they have the same goal as you, of getting your wee boy well and home even if that goal seems a long way off just now.

amillionyears Sat 29-Dec-12 18:08:39

That was part of my post, didnt want to lose it.
Forget about the March/June bit for now.
You have enough on your plate right now. Mar/June can wait for another day.

Also remember being at a bit of a loss of how often to be in there for.
We live quite a way from the hospital. Also had other very young children at home at the time.
ok, after a bit, I had one child in there, and 1 child home breastfeeding, so felt very torn in 2 pieces.
In some ways it must be worse coming home without him. Do you have other children at home?

How often are you in there.
Have the nurses said which times would suit them you or you partner being there. How often does your partner go in there.

amillionyears Sat 29-Dec-12 18:00:24

First thing, it does end.
Second thing, hang on in there.
Third, yes it is difficult when you have to go home and leave him in there. I have done it too. I actually remember it being one of the worst times of my life, and I couldnt really explain why back then, or now for that matter.

You are in a very emotional and vulnerable state.
So having nurses making you feel awful, is terrible. fwiw, I do remember getting in a state a couple of times by what they said, but really it was partly me. Because anything and everything had the power to make me feel lousy. And I didnt have enough emotional energy to see it all very logically at the time.

AlisonDB my heart goes out to you it really does. My DD arrived at 32 weeks back in May and we lived the SCBU experience for 5 weeks. I'd never felt so low in my entire life and all the feelings you describe are perfectly understandable given the situation.

People in RL, even other parents (of full term DC's), have absolutely no idea what you're going through. Some will try to be helpful and empathise, others have this ridiculous idea that whilst your baby is being cared for by nursing staff you're somehow having an easy time of it. Please don't listen to any of the rubbish, the longer DD was in hospital the better I got at letting these sorts of comments wash over me.

The longer your DS is in SCBU the more you will get to know the nursing staff and you'll find they'll be encouraging you to do most or all of his 'cares'. You'll also be able to pick him up and cuddle him when you want to (within reason) and this will make you feel much more normal I promise. Have the nurses been encouraging 'Kangeroo care'? I cannot stress enough the importance of holding him close as often as you can - many doctors consider it to be as important as medicine.

It's perfectly fine to take some time for yourself. For 4 weeks I barely left DD's bedside (after 14 hour days at the hospital I used to phone the nurses when I was up expressing at night) but it eventually led to a mini break down where I suddenly felt overwhelmed with emotion and couldn't stop crying for a day. Get a haircut/go for a walk/have coffee with a friend even if its in the hospital canteen. DH and I also went for dinner at a restaurant near the hospital a few times. Do not feel guilty for time out, it's essential for your mental health.

The feeding issue is very difficult and one that all SCBU parents struggle to cope with. Nurses are duty bound to ensure that the babies get their full quota of food and if they're in any doubt about bottles/boob not going down quickly/well enough they will tube feed because they consider it to be in the babies best interest. I found the unit's breast feeding counsellor very supportive in helping me to get bf established and also for standing up to the doctor's about the tube when we felt that DD was doing well enough to have it removed. If you're not bf is their a friendly nurse that you've found particularly supportive? Most of the staff caring for my DD were more than happy to listen to my opinions. You are the parent and don't you forget it. The opinions of the experts are obviously very important but you're the one spending the most time with your DS so you already know him better than anyone.

Finally - if possible try to get asking to some of he other parents if you can. It's really hard at first but they are the only people who truly understand what you're going through. I got brave and started conversations with 3 of the other mum's and they are now some of my closest friends. It feels like an eternity but when your DS is home you will be able to put a lot of his pain behind you. You'll never ever forget it but I promise it gets easier and will eventually become a bittersweet memory (the first few weeks of our DC's lives are precious no matter how horrible it was to see them in hospital).

Hopefully your unit will have given you some pamphlets from Bliss and Tommy's. There's a wonderful book published by Tommy's called 'your premature baby' which has some fantastic tips for surviving the hospital experience.

If ever you'd like a chat please feel free to PM me. xxx

minipie Fri 28-Dec-12 13:10:43

Big hugs to you. DD was born at 34 weeks, spent 24 days in SCBU mainly due to crap feeding, and at the time it felt like it would never end.

A few ideas for you:

- you shouldn't need permission to change your DS's nappy. Just tell them you are about to do it, in case there is a temp check/blood test etc they have to do beforehand. You are his mum and he is your baby, no matter what.

- re feeds, see if you can find a more senior nurse or doctor to talk to about giving him longer before the tube top up. IME the junior nurses are v nervous about any possible weight loss on their watch, whereas the more senior ones are more willing to push things a bit and give the baby a chance to do it by themselves.

- have you tried different teats? The nurses said softer teats are easier for prem babies. I think they said NUK were quite good and tommee tippee not so good.

- do try to look after yourself while he is in hospital. I did the opposite and spent 14+ hours a day by DDs side, as well as expressing and phoning in in the night. When DD got home I was shattered and had no energy left for the difficult extended newborn phase we then went through. With hindsight I should have slept more while she was in SCBU and not tried to be "super mum".

- I too had dark thoughts. It wasn't the experience I had expected or wanted and I spent a lot of the time feeling angry and upset and wishing for a 'normal' baby instead. It is a hard hard road and nobody will blame you for having mixed feelings about it and by implication about your DS.

- BUT, it will end. DD has been home for nearly 6 weeks now and the SCBU days seem long ago.

Best of luck, I hope you get him home soon.

applecrumple Fri 28-Dec-12 05:02:11

Hi Op, my dd was born 4 weeks early too weighing 4lb3 & was admitted to SCBU for hypothermia. She too was placed on a glucose drip & her little heels were black & blue from all the glucose testing prior to her feeds.

I too was tired of asking for permission to hold or touch her - being a first time mum & holding her once a day & expressing my milk every 3 hours was not my idea of motherhood.

I know what you're going through.

A few things though in answer to your OP:

1. The babies on SCBU are on a v strict feeding regime - they have to be because there are so many of then there & because it is essential that they are fed regularly so that is why the nurses will resort to tube feeding - I had the same issue when trying to breastfeed. Can you try to be there at a couple of feeding times & ask to try feeding him yourself?

2. You are not a bad mum for not being at his side 24 hrs a day & ringing for an update is perfectly acceptable - you should not & must not feel judged for doing so.

3. I too had horrible thoughts when dd was in SCBU - I wanted to put her in a room, shut the door & forget and forget about her - I just didn't know how to cope or manage my emotions. It is the hardest thing I have ever experienced. You are not a bad mum for thinking these thoughts.

4. No one who has not had a child on SCBU will have any idea what it is like for you & will pass heartless comments - the best one I had was "did you feel sad when you came home from hospital without dd?" - er wtf do you think?

OP you WILL get through this but at the moment it is so so hard for you - feel free to PM me if you want.

Oh btw congratulations on your new DS!

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