SCBU, guilt at going home - how to handle it?

[stillfrazzled]

DS2 born last Tues by emCS, 35+3 and only 3lbs 5ozs due to IUGR.

He's tiny, but lovely and doing well - only getting nutrition and monitoring now, no medical treatment as such.

He responds to us, we adore him utterly and would spend every minute in SCBU if we could, but DH has to go back to work next week, I can't drive due to CS, and most importantly we have DS1, who's 3.6 and needs some semblance of normal life.

Today we were at the hosp from 10am-5pm but now feeling sh*tty because it's so long till 10am tomorrow. DH went to hosp and spent the evening there last night, and will try to go every other night, but he's knackered from looking after us all.

We've got to keep this up for prob a month at least. How do you find a balance?

Congratulations!

I feel for you, it's so hard. DD2 was in NICU for 6 weeks and we had DD1 at home aged 5.2 so needed to be at school etc. I couldn't drive post crash section, DH didn't drive at that time and we relied on wonderful friends and work colleagues doing a rota system for lifts.

We could only go from 0930-1430 each day and occasionally in the evenings if someone could take us. I felt so guilty that I wasn't there all the time.

For me I got through that 6 weeks by:

Expressing so she could have my milk when able.
Phoning the staff each evening for an update since I had left.
Taking a million photos each day!
Telling myself that she wouldn't know I wasn't there but she would know when I was.
I know it sounds potty but I often cuddled one of DD1s dollies and pretended it was DD2 (I've never told anyone that)
I tried to tell myself that it was OK I couldn't be there as DD1 needed us too and DD2 had all those lovely nurses caring for her in between our visits.

It didn't make it great but it helped a little. And that day you finally bring your baby home is the best in the world!

Congratulations on the arrival of your DS , stillfrazzled, and I hope you are recovering well from your CS.

You are simply suffering from yet another version of Mother's Guilt and I am sorry you feel like this.
It is so very hard to leave a LO behind in SCBU, but inevitable and in many ways your older DS needs you more at the moment - I think that is true even when a new sibling comes along in a non-dramatic manner.

My DS2 was born by emCS at 31+4 weeks and was in SCBU for 5 weeks before coming home. DS1 was 12 months old and DH was working full-time and preparing for exams at the time. We managed by having my mum stay with us for 6 weeks or so after his delivery (she had already been staying with DH and DS1 for 6 weeks as long as I had been in hospital with Placenta Praevia from 25 weeks onwards).

Here is what helped me to get through that scary time:

• remind myself that DS2 was better out than in
• remind myself that in the short-term he needed trained professionals more than me
• have as much skin-to-skin contact with him as was technically possible. The unit he was on encouraged Kangaroo care which we (and DH!) both enjoyed.
• I expressed BM for him which allowed me to feel I was doing something for him
• I did feel bad for him having been ripped out of his cosy womb so early, but not exactly guilty as I knew there was nothing I could have done differently that would have made a difference.

Be kind to yourself. Eat chocolate . Cuddle with DS1 - he'll need it. Sleep whenever you can; even when DS2 comes home he will still be tiny and young and likely behave like a newborn.

Some of what you are feeling is probably due to what you have been through, but some of it is also the adjustment of going from 1 DC to 2 DCs.

FWIW, after our difficult time, we still went on to have another 2... . And my tiny DS2 is now almost 7 and built like a tank!

Hi there. I completely understand how you feel.
We had DD at 31 weeks. As it was she was only on NNU for a month but when she was born we expected it to be two months (as they said to aim to get her home on her due date).

I didn't have another DC at home but even so, I only spent days in the hospital. Not evenings.

I don't think it's possible to get a good balance. You just do the best you can. I totally understand how you feel though. I used to lie in bed crying because I wasn't with DD. I also had a CS and I think that if I'd been driving I would have gone to her in the middle of the night.

I think it's important to remember that hospital is the best place for your DS. He is getting the best of care. And rest and sleep are most important for him. There will be plenty of time for stimulation once he's piled on a bit of beef.

Try to go easy on yourself. Not easy I know. But it's impossible to be supermum.

Also, whilst you shouldn't get your hopes up, fingers crossed he might be out sooner than you think.

He is fine. He's being well cared for and while he will obviously love having mummy around, it won't do him any harm if you don't spend 24/7 at the hospital. You have yourself to take care of, and your older DS.
I always remind myself that the time in NNU leaves mental scars on the parents, but the babies don't remember a thing.

Big hugs. Hope my ramblings make some sense. xx

thank you SO much for such lovely posts in such a short time, I'm overwhelmed.

I am trying to look on this as a weird end to my pregnancy, so I've got a sneak preview rather than an early start.

I'm expressing - which the staff tell me is making a huge difference to his ability to digest. We're both doing kangaroo care, and containment holding, and talking to him. We take pictures and ring at 6.45am each morning to find out how his night was. I'm cuddling DS1 a LOT and trying to remind myself that this is the most oblivious period of DS2's life and he will not remember.

But every now and again I see one of the other babies crying and then stopping alone because the nurse (all lovely, BTW) is busy and couldn't come to them, and it just tears me to pieces to think that my baby's doing that when I'm not there.

And the 3am expressing session is horribly lonely without a baby to cuddle.

SOunds like I just need to put my head down, get through this and accept that it's going to be sh*te in the interests of being better long term. Sigh.

It is really crap at the moment and I do so feel for you.

But if it's any consolation, I had forgotten about the horrible middle of the night expressing until I read your post. My pump was set up in the kitchen and I used to just sit there with my feet on the cold floor being all upset, which probably didn't help the milk!!

I also tried to view it as another stage of pregnancy. DD was in an incubator and I tried to view that as a kind of womb...

Sorry I don't think anything I say can make you feel better but just wanted to let you know that everything you feel is totally normal.

How is it going today, stillfrazzled? I hope you and your DSs had a Good Day.

I recognise so many of the things you are describing . Really all I can say, in the greater scheme of things, his few weeks on SCBU will be a minor blip compared to the rest of his life . In the words of Dori from Finding Nemo: 'Just keep swimming, just keep swimming...' It will pass, it will.

Re expressing: I really found it helped to have my pump set up with everything I could possibly need/want to make myself more comfortable. Remote control, drink, chocolate snack, magazine, used babygro of my DS's, picture of him etc. Also, I made sure I was warm as I have a rather reluctant let-down and being cold just scared all the milk away... I invested into a really huge, fluffy dressing gown at the time for nighttime expressing sessions which I still have and love and probably won't ever get rid of.

FWIW, DS2 is now v proud of his status as 'the Smallest Baby in the World' (well, in our family anyway ) and also feels quite special as he is the only one of my 4 who arrived by CS (he thinks babies coming out from between mummies' legs is 'gross' ).

Just to let you know, I've been thinking of you today.

I've been thinking of you too

Those middle of the night expressing sessions are awful, aren't they? I used to sit there, next to snoring DH, pumping away with a blurry little polaroid of DD2 next to me

The bonus was I read zillions of books, at night and also when I was in the Unit visiting her - we couldn't do much containment holding or cuddles so in between doing her 'cares' I read loads of trashy novels, magazines and newspapers!

You're so right - ride it out, one day at a time. NICU is such a rollercoaster but trust me, in a few years you'll look back on these days and think they went in a flash and you and he will have come so far

DD1 and DD2 were both early (32 weeks and 35 weeks) so both spent time in NICU. With DD1, DP had compassionate leave for 4 days and went back to work whilst I almost lived at the hospital, even though I discharged myself after 2 days. He then took paternity leave when she came home - which was great as she was 'wired up' until 30 minutes before we left and the angst at coping without the machines and monitors was huge!

We were also told to expect to bring her home around her due date - so it was terrifying on day 23 when they said she could come home the following day.

Leaving DD2 in NICU two years later was much easier! The staff were mainly the same and it was Christmas so DP was on holiday anyway so balancing DD1 at home and DD2 in hospital was a bit easier. She also didn't have the medical problems that DD1 had.

We took DD1 to visit DD2 each day and I do feel it gave her time to get used to the baby! So far, two years down the line, we have never had any sibling rivalry.

DD1 does talk about when she 'lived in my special house in hospital' although she doesn't remember being there herself, just knows she was from seeing DD2 in an incubator and seeing pictures off herself in one.

Regarding the expressing, I found it easier to stay warm and put all the pictures on an electronic photo frame thing so almost like watching personal TV.

Good luck, congratulations on your DS and remember... this too shall pass xx

Aw, thanks all.

DS2 is doing OK, tho scared the bejesus out of us yesterday when he had an episode of apnoea. Doctor and nurses reassured us it's to be expected from preemies and he will grow out of it, but urrrrrrgh. Nerves farking shredded again, and wondering how on earth I'm EVER going to sleep when he comes home...

Apart from that, though, he's gained some weight and is on only milk now, which is v good progress.

DS1 has had three 'accidents' in two days after a year dry, and has told me he doesn't like me several times. Am trying to be very calm and affectionate and reassuring with him, but yesterday he found two of my hairs in his shoe at nursery and dissolved into tears, insisting he had to give them back to me. I am clearly failing hugely with him and I don't know how to do better.

I know one day this will be a blip, but today is not a good one.

Oh, stillfrazzled, you are not failing your DS1! He is going through a huuuuge transition becoming a big brother and having to share mummy and daddy - that happens even when there are no complications. He will pick up on everybody's anxiety as well and will need lots of reassurance that he is loved and that as far as he goes, everythingn is fine. Has he seen his baby brother yet?

My DS2 had lots and lots of anpoeic episodes - they are so common to be virtually normal for preemie babies, so try not to worry too much. They literally grow out of them as their brain matures. Remember he was not ment to breathe for himself for another few weeks. The monitors pick this up really reliably and usually babies just need a bit of stimulation (rubbing of tummy or similar) to 'remember' to breathe again. Even if they need O2 or a puff with a bag, they are fine afterwards. Gawd, I remember how scary all of this was though.
My DS2 had to have a 'car seat challenge' before he was allowed home: sitting in his car seat (he looked soooo tiny) all wired up to see that his system (blood pressure, breathing etc) could cope with being (semi)uprigtht.

I hope your day will improve.

Hi stillfrazled, this is my first post, long time lurker but your post resonated with me on so many levels I felt I had to reassure you! My first ds was born by emergency c-section 3lb 4 oz in August last year, 6 weeks early. Like you, I spent the first part of his life in SCBU, and the guilt after being discharged myself was awful.

Hours spent trying to express, crying about missing him and generally feeling rubbish.....but it passed, and it will for you too.

I got through the month he was in hospital by trying to stick to a routine no matter how stupid, I got the bus at the same time everyday when DH was back at work, bought a cup of coffee at hospital after spending 2 hours with ds for a break etc...

I echo the thoughts of the other posters when trying to express, make sure you are comfy, have a good dvd or magazine to hand and I also found having a blanket from his incubator helped.

Thinking of you and please remember your baby will be home soon and you will look back on this time and realise what a great mum you are!

Big hugs stillfrazzled.

Apnea (sp?) episodes are so so common. I know it's so easy for me sitting here with my 8 mo at home with me, but honestly try not to worry about it.

And I think it is always going to be a bit of an upheaval for the first DC when a baby comes along. It sounds like you are doing so well.
If you were a rubbish mum you wouldn't be worried about him, so I think that the fact you're worrying proves how good a mum you are. (hope that makes sense).

The time will pass, your DS will get home, and you will get through this.

Thanks all. It's so helpful knowing that this is all normal even if awful, IYSWIM.

Today was actually much better - no more apnoea, DS1 seems much happier, and nurse encouraged me to put DS2 to the breast for the first time.

Very little happened (his poor little mouth is only just big enough for the nipple) but he seemed quite interested and it was a start.

That is how it starts though! My little one is now 11lbs and doing fab, after such a rocky start he is blossoming and your little one will too.

As Ieattoomuchcake said, if you were not worried then that would be the problem! I promise, having been through this, that this will seem like a blur (looking back I was a zombie) and things will be okay.

The most important thing is that he has a happy and strong mummy, it was a midwife that pointed this out to me after not eating/sleeping for two days and looking like an emotional wreck.... take time to have a bath, watch some tv, snuggle up to hubby, I promise things will become easier to deal with if you are looking after yourself.x

Oh, that's a really good sign, keep offering him the boob and he will soon get the hang of it. That's fab news!
Glad he and you had a good day.

That's so good that you had a little 'feed'.
When I first put DD to the breast she just looked at if, occasionally had a little lick...
The nurses said it was all about little baby steps and in the first instance it was just her knowing that it was a nice cuddly place to be.
She's still bf now despite a very slow start.

It's sounding really positive today.

hi im new to the site i had my little baby boy at 30 week weighing 2 pound hes now 13 month and such a fantastic baby, when in hospital and out did anybody think there was lack of information about prem babies? i felt so alone. and always felt guilty for leaving my liitle one alone aswell he was my first aswell and nobody told me what to expect or anything. x

Actually got him to latch on today! OK, I cheated a bit and popped the nip in while he was yawning, but he def got the message and sucked for a good while. Then fell asleep, most gorgeous cuddle ever and still wishing I was back there.

He's off the caffeine, gained 40g last night and is now a whole 3lbs 10ozs. V proud.

DS1 seems a bit unsettled still, but think we're stuck with that till DS2's home and we have some sort of routine going. Am giving lots of cuddles and stories and telling him how much I love him, think he knows that even if things are a bit weird ATM.

Yay stillfrazzled
I was always rubbish at catching DD with her mouth open and in fact she was about 7 weeks old before she took anything resembling a decent BF.
I think it sounds like you're doing well with DS1. Lots of cuddles are probably what he needs at the mo. It won't be forever.
How are you doing? I hope you're taking care of yourself so you can be strong for your two lovely boys.

Hello mumtooliver
I agree there isn't much information out there. I wasn't on mumsnet when I had DD. And other than in hospital (where everybody was too focussed on their own issues to be much support to each other) I don't think I've met another prem mum. Bliss seems to have good info but you have to dig a bit and when you're trying to spend as much time as you can in hospital, and struggling with everything, it's difficult to find.

Yeah, well done, LittleFrazzled!! You sound happy today

Coming late to this thread but just wanted to reiterate some of the things others have said. It is SOOO hard and the guilt is not easy to either deal with or stop feeling (there is always some reason to feel you are not getting it quite right it seems!) but if you can, the important thing to remember is that a year on from now, neither DS1 or DS2 will remember the times you weren't home or at the hospital respectively. My DD2 was 8 weeks early when DD1 was 2yr 3mths and now barely recalls her baby sister being in hospital apart from when she sees photos of them together in SCBU. I just tried to be home for what I saw to be critical times, when she went to bed, when she woke first thing etc and otherwise spent my time dashing to the hospital and splitting myself in two.

It is great to read that DS2 is starting to show a real interest in feeding and is doing so well. Be proud of yourself!

its horribe leaving baby but your baby is in the best possible place and you have to take time out for your self to get ready for baby coming home its so strange but amazing when they come home, catch up on some sleep i no its hard i went at midnight once to see my baby because i missed him so much but when there home its worth it, xxx

Hi all, have been spending all day every day in the hosp, trying to catch DS2 at every other feed.

I thought it was going OK, but he's lost 10g over last three days. Can see that he's having to work harder, deal with wind and possetting and all that, but still a bit shaken.

Also sad, because he can't come home until he's sorted this and put some weight on.

Two steps forward, one step back, I guess. Sigh.

Hey, stillfrazzled, this is a marathon, not a sprint - I know a setback like this is demoralising, but try and take the long view. He is yet sooooo young. I know many, many babies ( term babies at that) who had not regained their birthweight at 4 weeks of age and eventually gained just fine.
My preemie DS2 was the fattest of my lot between 6 and 12 months to the point that I now look at photos of him and think I maybe overdid the feeding a teensy bit .

Really, don't worry. 10g is nothing - if he just weed before he was weighed it would have made all the difference.

'2 steps forward, 1 back' is better than 1 forward, 2 back . He is doing just fine by the sounds of it.

How is your DS1 getting on? Has he commented on his little brother at all?

I know exactly how you feel, I used to pin all my hopes on his weight as he had to be 4lb before I could room in with him before taking him home...every gram counted and at one point he lost 7g after steadily putting on, I sobbed...... but it was normal and it will get better!

I agree with PD above, the slightest little thing an make a difference, in fact when I was rooming in and he had to be weighed, one nurse told me to feed him first so it was his maximum weight and when I took him to the room they refused to weigh him as he had been fed and would be a false weight

After that I realised that there was no point desperately pinning my hopes on the weight. Your little one will be fine, and you have all the support here when you need it.