What did you wish you had known before you had your baby early?

[Finessa]

I think my baby is going to need to be delivered very early due to complications. I'm trying to find out as much as I can and am reading the bliss website.

What advice can you give me? What did you wish you had known before your baby was born early?

Thanks very much :)

I didn't mind being woken by other babies and mothers, but I found it impossible to rest during visiting hours, with so many excited people celebrating the other babies. With hindsight, I wish I'd spent more time at home, recovering.

Another one - don't underestimate what a big deal it is (will be). For the first two weeks I kidded myself that because I had had an easy labour, and DD was being well-cared for, I had it easy and was somehow not entitled to ask for help compared to people suffering "real problems". Premature birth is a really big deal, and a huge rollercoaster of emotions, and it's okay to say "I'm finding this really hard", particularly when (for example) you have to go home and leave your baby in hospital.

Things I wish i'd known....

• that most of the nurses are really lovely but they are NOT your baby's mummy, only you can do that. So although they are much better at changing nappies and reading your baby's signals to start with, soon enough you will understand your baby the best. You get to take them home and the nurses don't want to steal them from you!

• that some nurses and some doctors can be incredibly tactless and actually bad at their jobs. it's the minority, but if something seems wrong or has been done wrong its ok to point it out / complain / change it. I wish i'd complained more, looking back. at the time i was worried that somehow my son would get worse care if i was perceived as a "difficult parent" but it just doesn't work like that.

• that the Bliss message board is a life saver full of other parents going through the same thing - from the possibility of an early labour to the delivery to the first few weeks of orientation in the NICU to going home to longer term development issues to adulthood.

• that when doctors say a "chance of severe disability" this is not certain, and even they don't know what the outcome will be for each baby

• that there is so much you can do as a parent to help your baby - for example that babies breathe better in the presence of their parents even if the parents are not touching or holding the baby. That just sitting by the incubator isn't a waste of time, especially if it puts your mind to rest.

• that you do have to take time out to rest, eat, sleep, physically recover and especially for any older children you have

• that having an early baby will probably make you feel weird about pregnant friends and those with a "normal" birth experience - this is normal and you have not become a jealous emotional blob but instead are going through a normal grieving process.

• that most babies over about 26 weeks survive despite how fragile they look. Even 24 weekers have a 35% survival rate.

• that the brain can rewire and learn to compensate for any damage that has occurred, if you have the right developmental input.

• that you will become part of a very special support network of lovely families, and that despite the circumstances you will make new lifelong friends through this difficult experience, and that most people are incredibly kind hearted and that we already had some great friends who supported us in many ways both practically and emotionally.

:-) there is probably a lot more, its still very fresh in my memory nearly 2 years after my son came at 24+1.

Best of luck with your pregnancy, I hope you get as far as you possibly can.

Good post MichaelaS

Firstly, just keep in mind that "premature" or "early" covers a whole range of gestations - a 24wker is completely different to a 32wk baby. Don't be frightened by the possibility that a 32wk old baby would be as poorly (and need as much intervention) as a really early baby.

I would also recommend the diary - even if its just basic information, comments that the Dr made. As the others have said, there will be days when you have a bit of a set back (which feels like going back to Square 1 even though in reality its just a temporary blip) and being able to look back at the very early days to realise just how far they've come can really help.

Be there as much as you can - I can see you have other children so its difficult, but you'll find that there is a doctors round at a set time each day and then a weekly consultants round. If you're there when those are happening, you can hear the nurses feedback a progress report and get a better idea of what is going on. I also got to understand the language, the medical terms and on one occasion spoke up about something that I thought they'd missed.

As others have said, don't think you're unusual if you feel cheated / hard done to / jealous of pregnant women / new mums and also be prepared for mums / babies that you've got to know in SCBU going homw before you. Its a real emotional rollercoaster which you can feel like you're on by yourself. I was also pretty horrible to my dearest and dearest - I think at the time I was just so desperate for time with them / to hold them that I didn't like other people coming to the hospital or asking to hold them because if they only had 20 minutes out of the incubators each day or whatever, I wanted all 20 minutes - not grandma or great aunt whoever. I think people understood.

Also, remember that you will get to take your baby home. They told me when my twins were born more than 12 weeks early that it would probably be around their due date when I'd get to take them home - I couldn't comprehend that we'd be in limbo so to speak for 3 months - it just seemed like a lifetime. It seems strange but you quickly get into a routine - the time will go quite quickly with the whole expressing / nappy changing / feeding / trying to eat / sleep etc. In fact, we came home after 8.5wks in SCBU. Would also agree that in general, the SCBU staff are amazing, you will get to know them very well and they will usually bend over backwards to let you be the parent, you've just got to make sure you make it known that you want to do as much as you can.

My twins are almost 6 now and it seems a distant / hazy memory. It seems like the fact that they were premature will shape their lives (and yours) but it doesn't.

Good luck
Mandy

I got given a private room while DS was in SCBU. Not by the midwives, oh no - by the healthcare assistants, bless them.

They just came along, saw that I was lying in bed by the bins where the other three were chucking their dirty nappies and took it upon themselves to move me. There were about five single rooms not being used. I accepted that if five people who needed the rooms more than me came along I'd give it up straight away. Thank God they moved me because I was in for 13 days with deranged liver function tests.

So ask if there's a single room, because you might not be given one even if there is.

Hi,
I had a baby girl (Alice) three weeks ago at 35+4. (Due date was 28th March.) After a night in SCBU and a bit of jaundice she is doing very well. However, she has not got the idea of how to breast-feeding, despite all the efforts of midwives and bf helpers in the hospital who tell me that position and attachment is fine.

I REALLY REALLY want to bf, and am worried that she has got too used to bottle teats (which were necessary in the first few days to keep her weight up). I have been expressing and feeding her formula top-up (about 50/50).

Can anyone tell me whether she is likely to learn how to do it after this amount of time? Or am I doomed to fail? Does anyone have experience of a baby (premature or not) learning to bf after a few weeks of bottles?

Thanks,
Helen

PlantGirl

Please copy and paste your post, and start a new thread in bottle/breastfeeding, you should get more responses - this forum is still very quiet, and there are experienced supporters there.

I am no expert, but my tiny prem baby did eventually get the hang of breastfeeding, and she was tube fed for four days before being weaned onto bottles, and eventually onto breast. But switching was tough, and I'm not convinced the battle was worth it. Your situation is different, but you are certainly not doomed to fail.

Best of luck

That when they say it may be "a roller coaster ride" they are not joking.
I have had 5 prem babies (all for different reasons) and with my first the way they can go up and down quite suddenly was emotionally very hard.
I have had a 32 weeker and she wasn't as scary as a couple of my others (24 and 30 weeks) I know it probably sounds a bit trite but they really are all different.
Like others have said though take care of yourself, try not to worry and every single day really does count.
Good luck and I hope it all goes well.

You might blame yourself for the baby being early.

We still don't exactly know why DD was prem and yet I blamed myself quite a lot in the early days.