baby went to special care - physical contact only when breast feeding

I promised to contibute so here goes.. pardon in advance if this is long.

I suppose I was forwarned that my baby would be in special care, simply because I was sent to hospital at 27 weeks with pre-eclampsia. We hung on for 4 days, until both of us were being 'compromised' and then I had a section. However I had been able to visit the day before, so at least I knew what the room would look like. I know that sounds strange, but in intensive care there are just so many machines and your little one is wired to all sorts.

Like emwi I kind of blanked out things and was very casual/hard. It was my defense mechanisim I think. I couldn't sit for hours watching the cot, I used to go in, read all the charts, and ask copius questions. I guess I was detatched from it all in the beginning, I just felt so guilty. My body had let me and my baby down, and I blamed myself. In those early days someone found some information for me about the process that you go through - not the practical stuff, more about the emotional side, and I still remember it now.

Having a prem baby is like a sudden death.
To start with there is shock.
Then denial.
Thirdly anger,
Fourthly greiving (for the perfect pregnancy, or what should have been)
Fifth accecptance.

Each one of these phases can last just hours, days or even months, I guess 4 yrs later I am at the 5th stage.

Looking back the shock lasted a lot longer than I realized. Certianly the first few weeks, denial was mixed in here. I kept saying 'but I never get ill' and 'these things just don't happen to me'! Anger definately reared its head when she didn't seem to be progressing as quickly as I thought she should, or when my dh wasn't allowed to hold her one night. I was so angry at teh staff, when we left the first hospital at 7 weeks, to go to one nearer home I was in that stage. Nothing anyone did was right for my baby!

Grief took a long time coming and a long time to go. I don't think I really let go of it until my 2nd baby was born 2 yrs later. I felt such guilt mixed in, it was my fault in some way. Acceptance is finally here, I think that came 3 years after she was born, and I realised she was fine, I hadn't hurt her - or rather her prematurity hadn't.

Long term however I do notice a difference, I am not proud to admit I am closer to my 2nd baby. I love the first dearly, but dd2 is my heart. I know it was those early weeks that have made all the difference, she was my baby from the start. DD1 didn't become my baby til she was 14 weeks old, and even then the routine she was in wasn't mine, it was the hospitals. I never had to muddle my way through those early days.

Just thinking about it now, one of THE most upsetingthings was coming in one day, she was about 10 or 11 days old, and she was dressed. Up until then she had been naked save a nappy, but I didn't choose her first clothes, or dress her first. Even now that brings tears to my eyes, as it was a special moment that was denied me. I certainly wouldn't have chosen a stupid outfit which was pink with black and white dogs on it!! I did buy her a couple of outfits form a special prem baby clothes comapny, so at least she had her things, not just borrowed stuff!!

Sorry to go on here, this is not really practical help as in get someone to cook loads of stuff etc, but in some ways reading that information about the grieving process helped me more than anything else could. It recognised my feelings, and boy did I grieve for the 'perfect baby/pregnancy'. It made me realise that I was normal, and that there are many ways that we cope.

A year ago I saw my SIL go threw a similar thing, she got to 31 weeks (in hospital for 3) She went the opposite way and couldn't leave the bedside, but I still saw her go through the same process, just it affected her differently and her coping mechanisim was so different to mine. Outwardly she is far more emotional than me, I can seem very cool (I am commenly known a the most chilled out person!), so I guess we ran true to type, with her sobbing over the cot and me off at the cinema, watching c**P movies and eating out because I just couldn't cope with being nearby.

I hope this is useful, I shan't preview as it is just my feelings spilled and as they came.

re your baby going to special care - it varies in lots of cases... so this is just from my perspective. Although I knew she would have to go to special care when she was born we were not really prepared - dd was born just over two weeks early after a routine ultrasound showed my placenta had not been functioning effectively. So from having an ultrasound to being a mummy wass less than two hours. I did not get to hold dd when she was born - my dh did but then she was taken straight to special care to be. I too worried that as my dd was soooo quiet and rarely cried that she would be missing out on attention. In fact, the one time she really did cry the nursing staff went to see another baby thinking it was her not my dd.

First thing is - to look after yourself. After I was finally discharged ( and dd was still there for two more weeks) I would go up in the morning and spend time with her - come home sround lunchtime and sleep and do what needed to be done. Then when my husband got home from work we would go up to the hospital together. I think taking that time out in the afternoon helped me recover from the caesarean as well as I did. I feel it also put me in a better position to care for her when she came home three weeks later.

Second thing - was be aware of all your child's care - if you don't understand ask ask and ask again until you do. Ask if there is anything you can do in terms of your child's care. We started with nappy changes whilst she was in the incubator, moved to top and tailing, tube feeding, medication until we did it all if we were there.

Due to her nasal gastric tube having to remain in until her heart surgery I was unable to breastfeed. I expressed as much as I could and when that stopped she had formula milk. As much as I wanted to breast feed her I know I did the best for her at the time.

I look at her now - recovered from heart surgery and just making fabulous strides in terms of health and development and I believe she has not suffered any ill effects from her hospitalisation. Had she not had the special care and then the surgery who knows if she would still be with us now.

I also found it helpful to talk with other mums who had babies in scbu - it really helped me put my view into perspective. A little boy was in scbu whilst dd was there - he was born at 20 odd weeks and had struggled for weeks to live. He had been there for almost a month and a half when dd was born and was still there three weeks later when we went home. In fact when I visited the hospital to let them see how my dd was getting on - he was still there. his mum was one of the most positive uplifting women I know. She always made a point of asking about dd and I and I did hte same with her little one. That support from someone who was sort of in your shoes is helpful.

HTH

eidsvold - good comment. There wasn't enough on this when we wrote the Mums on Babies book, but if/when we ever get commissioned to update it, it's certianly something we would consider including. I agree I've never seen any helpful advice on it anywhere, and yet it can't be that uncommon. If you'd like to add your comments here, at least we (and others who might need the advice) have got some guidance for future reference

If you could bear to add your thoughts on this to this thread, that would be great. The book is (like the last one) a distillation of the best bits of mumsnet Talk, but sometimes we just need a bit of extra help!

All helpful advice welcome

I have been thinking about this Carriel and I think it would also help to have a seciton on coping with your baby undergoing major surgery - like cq my dd had to have open heart surgery however she was a little older at 7 weeks. That is really something that you can't prepare for and I wish I had been able to speak to other parents.. And of course - this is never mentioned in the baby books.....

So just a thought

Carriel, I will happily contribute something for the piece on coping with baby in SCBU. My dd was in Great Ormond Street at 5 days old having open heart surgery, after a CSection, moving to another hospital for diagnosis and then on to GOS. The whole experience was a nightmare but you have to get through it. She is now a gorgeous 2YO with a scar that will make her a playground hero!

Many times since then I have thought I should write it all down, but have never got round to it. Let me know what you want and when.

CQ

I'm happy to contribute - I had a full term baby who was admitted to special care which was a total shock, let me know what sort of info you would like. (he's fine now!)

I too will contribute, we had no prior warning and all of a sudden we were mummy and daddy-just let us know what info/advice and when you need it

Hi

I would be happy to contribute something about coping with this issue - I had a 34 week DD (now a happy, bouncy, chunky 8 mth old) following severe pre-eclampsia and got 48 hrs notice of a c-section birth. We just "coped" whilst we were in hospital and SCBU and seemed to just get on with things, expressing milk every 3 hrs quickly became the norm, not that I'm saying I looked forward to being milked like a moo-moo, but at the time I just did it, to try and give my DD something of mine that no-one else could provide.

Its only afterwards that you realise what information and support you could have done with - in this respect BLISS and now the NCT are offering a route to ongoing support and care.

My immediate advice to anyone who'se baby has just been whisked off is to risk being annoying to staff and ASK, ASK, ASK about EVERYTHING, even if you think you won;t understand their responses, write it all down (keep a diary) and then go over it when you can, it will help keep things in order in your mind (which will be all over the place) and later on when you feel you need answers, this will help to form the "story" of your DD/DS's birth.

Good luck to all other parents of premmies, I think we forget just how much we are doing a good job despite our lack of confidence in early arrivals.

Cheers
Moomicat

I too will contribute, having had 2 prems - 28 wks and 31 wks. My best friend will add something too i'm sure , her ds was 24 wks gestation ! Let me know what you want.

I would be happy to help... I knew my dd would have to go to special care prior to her birth as she was born with a serious heart defect - however that did not make it any easier. She then spent three weeks in there and we coped but there are things I wish I knew beforehand. So would love to help if you want to let me know what sort of thoughts info you would like.

Carriel, I'll happily do something, however for some great information and perhaps other stories etc go to BLISS the charity. These people helped me through so much and offer a parent support phoneline which I feel should e more widely known about.

I do think there are various stories to tell, my baby was born at 27 weeks and I had some warning of it, so I was semi-prepared however some babies end up in special care at term and that can be equally as scary in the short term.

I'd like to put something in the next mumsnet book about coping - both physically and emotionally etc when your baby is in special care post birth. I don't think I've ever seen this covered in a book and yet you can see from this thread that it's not an uncommon occurrence. So, anyone got any words of advice on coping when your precious baby's whisked off to special care?

Don't worry my daughter was born 2 months early and within 4wks she was sent to sheffield childrens hospital were she had three operations and was often in so much pain it would have been cruel to hold her. because she was so far away from me and i had another child at home i wasn't with her all the time and worried that we wouldn't bond with each other. She's home now and is also very happy and smiley.You sound as though you are great parents which is probably why your baby is so happy.

Don't worry my daughter was born 2 months early and within 4wks she was sent to sheffield childrens hospital were she had three operations and was often in so much pain it would have been cruel to hold her. because she was so far away from me and i had another child at home i wasn't with her all the time and worried that we wouldn't bond with each other. She's home now and is happy and also very happy and smiley.You sound as though you are great parents which is probably why your baby is so happy.

Emwi, I seem to remember from the "Child of our Time" TV series that they looked at whether toddlers have any negative "memories" of starting life in SCBU, by showing all the little ones a SCBU unit. The toddlers who had been there as babies seemed much more at ease and confident with the banks of equipment and ambiance than those who hadn't. Not at all upset or traumatised by going back.
It sounds to me like Grace has had wonderful care from all of you since she was born and her contentment reflects her intrinsic personality and happiness with the world around her.
I hope all the posts from mums who have also experienced this have put your mind at rest.

emwi - I also had a baby in special care - born at 35 weeks and 4 days ( weighing 6lb 1oz) who was ventilated for a full week who got no handling at all. After that he started tube feeds of breastmilk but wasn't allowed to be handled because his breathing would go off. He was 10 days old before I got to put him to the breast. He was a really good baby but he was my third baby and I subsequently had another one. All my babies were 'good' babies and slept well and were contented without the start that ds had. Do not worry about those early days - they are in the dim and distant past.

emwi, I can totally relate to this one. 4 yrs after my dd was born I wonder the impact of her prematurity. Not on her development, which is fine, but more on my bond and attitude toward her. It only struck home when I had a 2nd baby 2 years later that was 'normal'. I hadn't realised the difference.

All I can say in reassurance is that prem babies don't cry very often, only when they are being handled, or having drips etc. At 29 weeks (as I said she was very prem) I remember her almost laughing as a nurse tried to insert a tiny pessary. I think the nurse found it more distressing as she was being weed all over, rather than my dd. To me it summed up her personality!!

emwi - my dd spent three weeks in SCBU and we were finally able to cuddle her after a few days. SHe was however tube fed for almost three months. At 2 months she went into hospital for open heart surgery and we were unable to cuddle her for about two weeks of that time. I don't think she missed out and my dd did not cry really until after her surgery ( no energy). Dd is a good baby - generally very happy contented little soul. She gets lots of cuddles now. However there are times - when she is very hungry or overtired when she cries etc.

I think that you just have a contented little soul who is a 'good' baby. IT sounds like she is doing great.

Mine was born at 31 weeks, in SCBU for 6 weeks. My recollection of her whilst in hospital (and I was able to visit her from birth as I had a "natural" delivery" was that she never cried anyway. I believe this is often the case with small and early babies.

Really don't worry about it ... DD was born at 32 wks and was in scbu for 5wks and ds was born at 28 wks and was in for 6 wks. I wasn't able to hold either of them til they were a week old. It was horrendous, my memories of it are terrible, without ventilation I would have lost them both.

But - do I think it affected my 'bonding' with them and their 'contentedness' in the long run? Absolutely NOT. Take care of yourself and try not to worry.

My dd now aged 2 yr 7 months was born at 33 weeks and spent the first 2 weeks in special care after an emergency c-section, i know exactly how you feel as you just want to hold them, but my dd had a dislocated hip and sounded like a cat screeching whenever touched on the first day so it was advised to leave her to settle for 24 hours...-that nearly broke my heart but i kept thinking never mind she'll soon be sorted, to cut a long story short she spent her first year of life in some sort of cast or harness(the first fitted at only 3 weeks of age) and so physical contact and cuddles were very difficult but we both managed to find other ways to explore each other and the best thing of all is because she was so young she can't remember it.On a recent assessment an educational psychologist couldn't get over her vocabulary and grammar skills and this i think is due to the fact of her limited movement during early life but we concentrated on what she could do ie: singing/reading/blowing raspberries/touching her face etc.My dd was also a good baby and still has a sleep routine that most mums are envious off.Don't worry about those first few days focus on the future!! love chatee

emwi and sobernow - you could have been writing about my birth experience with ds! Born at 35 weeks, only 4lbs and tube fed in SCBU for first 4 days! Breast feeding was rather difficult but we got there in the end. For the first day I imagined him lying in his incubator crying and no-one giving him a cuddle, but in reality he spent those first few days (weeks actually) pretty much asleep.

He is now a very cheeky 2.4 year old who loves to 'tuddle' and 'tiss' mummy daddy and big sister, plays jokes, sleeps through and is generally one of the happiest, funniest, (and foolhardy!) children I know.

Don't worry - those first few days are nothing in comparison to the days, weeks, months and years that follow.