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!!

Pochemuchka Fri 28-Dec-12 00:56:38

Don't have any experience but wanted to send you a big hug.

Someone more helpful will be along soon x

Hi, I didn't want to read and run.

I have no experience of premature babies but am absolutely horrified at the comments made by some people!!

As to the thoughts you're having, I don't think true friends would think you've lost your mind - I certainly don't - you sound like a very worried, exhausted mum who desperately wants her son better.

Hopefully there will be other wise MNetters along soon with much better advice. In the meantime, I am thinking of you and your DS and hoping things improve every day x

Jajas Fri 28-Dec-12 01:08:30

oh you poor thing.

I had twins in SCBU 6 years ago, they were 10 weeks premature and one of them was very poorly. I know exactly how you feel - overwhelmed and sometimes not welcome, scared and depressed all at the same time.

Other people just don't understand, it is awful looking at your baby hooked up to monitors all the time and being tube-fed. I learned to accept quite quickly that they knew best generally and that helped me not feel so guilty at not being able to feed them etc.

I felt very guilty that I didn't want to be there all of the time, some mothers were by their babies bed all day every day, I just couldn't deal with that.

Are you on your own? Mine were in for 2 months, it does feel like forever and you can't imagine how life just chugs on outside those walls.

Thinking of you xx

((Handholding))

My dd was in scbu for 11 weeks, it is so so hard, but you will find the strength to get up each morning and carry on, I know you will.
As for idiots making stupid comments, I've been there, and the urge to scream and shout at them was overwhelming, but unless they are in your situation they will never grasp how emotionally and physically draining it is.

I really hope your son improves enough to come home soon.

And please, please talk to your GP if you still feel like this in a few weeks, I waited almost 3 years to tackle the feelings I had/have about dd's birth, and I wish I had done it sooner. You will not be judged.

NettletonMummy Fri 28-Dec-12 01:53:32

Hi - my dd1 was in SCBU after birth at 34 weeks. She wouldn't feed and was tube fed, and not allowed home until she could feed every 4 hours. She was only there 2 weeks and it felt like forever at the time, but looking back it really wasn't that long! She's now a healthy 3 year old and you would never know she had a difficult start. She had a lovely routine in place when she came home and was a very easy baby - in contrast to dd2 who arrived on 7th Dec (3 weeks early this time) and just wants milk all day and all night! Hang in there - you'll be home before you know it.

shinyblackgrape Fri 28-Dec-12 02:05:34

Poor you. My DS was full term but in SCBU for 3 days post birth as he was very shocked after a long labour and had low glucose levels. He was birn 4 weeks ago n

I very much identify with what you say re feeling I couldn't parent him. We were trying to establish breast feeding (despite him being tube fed) and were totally undermined by some if the nurses who kept tube feeding him early, even though it was agreed I would get to breast feed pre any tube feeds.

I was totally shell shocked and felt that we were never going to get to leave as I was told that wasn't possible until I had established feeding but I coukdnt due to the tube feeding!

Eventually, DH took control and insisted on speaking to the consultant who over ruled the registrar and let me have DS back on the ward. if not, I think we would still have been in there now! DH was also very good at just going in to the ward and picking DS up etc which made me feel more empowered to do so. As I said, I was totally shell shocked. I'm normally quite confident etc and I feel like I regressed back to being a little girl.

I know that your situation is slightly different but is there anyway you could speak to the consultant and raise the issue of how the nurses are feeding him if you have had no joy with the registrar?

In terms of the comments - words fail me. I woukd actually say to people: " I don't feel like I'm very lucky at all. I find being separated from my baby extremely distressing so do you mind if we don't talk about it as I feel like I might cry".

Big hugs - you're being tremendously brave and I hope you and your little DS are soon back together where he belongs

Tallgiraffe Fri 28-Dec-12 02:06:46

I don't have first hand experience of being in your position but have had friends who have. Is there an NCT group in your area? Can you give someone from there a ring to chat through your feelings with someone in RL who'll understand how hard it is and not make such awful comments.

On a separate note, DH and I both started life in scbu (bizarrely). He's a doctor, I have a PhD, and I'm currently up feeding our DS. I know it's hard to imagine a future without tubes and beeps but your child does have one and will get there with your love.

madwomanintheattic Fri 28-Dec-12 02:07:06

Hello lovely. Dd2 spent 5 weeks in SCBU after complications. She had no suck/ swallow or gag reflex due to the asphyxia, so was tube fed. I had the same feelings of frustration that you are feeling - but I insisted on a proper meeting with the consultant (not just who her doc happened to be doing the rounds or the paed dd2 was registered to) and expressed my concerns that the staff were taking the easy route and just putting feeds down the ng tube without really attempting and giving dd2 a real chance to learn to suck feed. He agreed, and the nursing staff were briefed that as far as possible, all staff were to work towards suck feeds. Have you provided neonatal dummies for suck training?

After 5 weeks, dd2 was taking most of her feeds by bottle (she was n the four hourly schedule as well). She needed oxygen intermittently throughout her stay but was removed from the prongs after two weeks and just used a head box. She came home for a week, but then had a short relapse where she couldn't feed, so she was re admitted and the ng tube put down again. I won't say she was ever an easy baby to feed, but we got through it. I even managed to latch her on once for one single thirty second breast feed (I expressed for six weeks, but with two other toddlers I was insanio, so quickly switched to formula).

I went home after two weeks (what with having two other toddlers to take care of) and left her there. I set my alarm and expressed on the same schedule as she was feeding (just psychologically it was better for me). I didn't stay with her when she was re admitted - I was emotionally drained.

Huge empathy - I know how you are feeling. It gets better, but it ain't quick.

How was his brain MRI? Dd2 had to wait for hers as they needed her off the oxygen. Has he had his yet? She was transferred to the specialist children's hospital for her MRI and EEG etc. any seizure activity?

Try not to feel too deeply about the comments. People will be terrified they are saying the wrong thing, and are just trying to find a way to reassure you. It isn't personal, and they do want to help. But you need to tell them what to do/ what you need. X

So sorry you are going through this sad DS was born at 31+5 and the feelings you describe about life with a baby in SCBU are very familiar. He was in for 16 days, but a friend I made on the antenatal ward had a 25-weeker who was in for 14 weeks, so I've seen the journey of someone in for the long haul.

Your friends' comments are extremely ignorant, but I suspect they just don't know what to say, and want to say something that seems positive. I would respond honestly - tell them how fucking awful it is to not be able to bring your baby home, it may shock them into being more supportive.

The emotions you are feeling are very normal - you have had a very traumatic experience, but have had no opportunity to process and deal with it as every day you must battle on with the day-to-day of DS in SCBU.

My suggestion is to ask to speak to the neonatal unit psychologist, who will be able to point you in the right direction for some help and support for you. Speaking to mine was the first step in ultimately having counselling and CBT for what was depression/PTSD linked to my experience. In hindsight, it took me too long to seek help - only with the aid of a persistent HV, and a GP who escalated my case when I had flashbacks at my 8 week check, did I get the help I needed.

You can also call the Bliss helpline for support, and they also offer counselling.

It is a very tough journey, but you can make it, and soon you will have your DS home, and you will watch him grow like you would never believe smile

We're here to hold your hand all the way through thanks

runawaysimba Fri 28-Dec-12 04:45:55

Just wanted to hold your hand from New Zealand. Don't know what kind of practical support is offered in the UK, but it seems the tendency to say stupid things is universal. I had my share of people commenting that getting a full night's sleep would be nice. I finally started telling them that actually I was up expressing milk several times in the night, without even the benefit of baby snuggles. That shut them up. I also used to remind myself that the nurses, who were mostly wonderful, were at work and couldn't possibly understand what it would be like to be a parent in that situation. No one can who hasn't been through it, some are just better at empathising than others. Don't be afraid to cry! I'd often take myself off for a little weep in the toilet and come back feeling more able to face things. You'll get there! (DD was born at 31 weeks, now nearly two and absolutely wonderful. SCBU seems like a long long time ago.)

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!

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.

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

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.

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.

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.

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

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

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.

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

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

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

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

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!

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