Getting my head around having a prem baby

[Sticki]

Hi
Im new on here and had our DS at 31+1 last sunday after bleeding from a placenta previa that wouldnt stop and caused contractions. I had been on strict bed rest and monitored in hospital for a week following previous bleeds before the (terrifying) emergency section.

Anyway, I was discharged yesterday and arrived home. DS is in NICU (having been transferred to a different hospital on Friday) and doing ok 'satisfactory' in Dr speak. So I have arrived home and no longer pregnant but with no baby and Im feeling all kinds of emotions (have been through 'baby blues' -2 days of constant crying) and wondered how others have dealt with this situation. Clearly Im anxious that he will be ok, and feel very cautious about celebrating but that doesnt feel right either.

We also have a 4 yr old DD who we need to help understand and care for. To complicate things further we moved here to Austria 3 months ago, and dont speak german or have any friends and family around. My mum came over for emergency childcare but Im not sure how long she can stay.

Any advice appreciated!

don't really have much advice as totally different situation although ds1 was 32+2 but just hang in there and take whatever support you are offered.

and ask as many questions as you want / can - don't think anything is a silly question to ask at all.

will be thinking of you

Congratulations on your DS's birth.
Sorry to hear he was premature and is in NICU.
I have no experience I'm afraid, but I think most posters here are in the UK, so you have posted early for them - keep bumping and eventually you will get advice from people who have been in the same situation.

I remember coming home from hospital last december after having the twins at 34 weeks. They were in Neonatal for 2 weeks.

I cried for 3 days and didn't speak to anyone on the phone or have anyone to the house.

It was the most surreal experience I have ever had and 1 I would not wish on anyone.

You have to keep it together for the sake of your eldest. You are in a difficult situation because of being abroad but you need to be as normal as possible to help dd.
I visited twins every day (which was hard on eldest dd) but was something I had to do as I would panic when I would wake up in the night and couldn't remember what they looked like.

You will be fine, but it will be hard.
Post on here anytime you feel yourself wobbling. Its surprising what a good outpouring (or rant) can do for the soul.

Congratulations on the birth, and keep us updated!

Hi Sticki - I'm pretty new on here too, and have found it incredibly helpful. Congratulations on the birth of ds!

I had DS on 6th April at 32 weeks and he was in hospital for 6 weeks, first in intensive care for ten days and then in Special Care for the remaining time, learning how to feed and generally putting on weight. I can't begin to imagine how much extra pressure being in Austria is adding, but I found it helpful to keep looking to the next milestone - a certain weight gain, coming out of the incubator, first try at feeding, that sort of thing, as that gave us a series of achievements to celebrate which helped me feel more positive.

It's a really difficult time - I've never cried so much in my life - but it will pass and before you know it he'll be at home with you. I'm thinking of you.

Hi Sticki, congratulations on the birth of DS.

I had DS 7 weeks early due to pre-eclampsia. Had an emergency C-section and he was in hospital for 4 weeks and 2 days. I can only echo what the others have said - hang in there. I can remember sitting next to his cot wishing that I could fast forward and that part would all be over and we would be home, as a family, and everything would be "normal" - I must have blinked because DS is nearly 6 months old now!!

One thing that I hope may help you is that you'll not realise it but your baby will progress so quickly. A vivid memory I have of DS being in SCBU is the Saturday before he came home (we had no idea that he was ready for home as nurses don't like to make promises which is understandable). Anyway, DS had had a bad night, he'd been sick, had reverted back to a feeding tube for some of his feeds having been on a bottle and I just felt like the walls were closing in on me and that this was going to go on forever, I genuinely thought I was losing my mind, Sunday wasn't much better....... on the Monday morning I walked in with a feeling of dread at what to expect - his tube was gone, he'd had ALL bottle feeds, his monitor was gone and we were told that DS was pretty much ready to come home - we took him home on the Wednesday after one last hearing test. So within 4 days we'd gone from horrendous feeding and me feeling like he would never come home to stepping through our front door!!

Another thing I also found comforting, after letting myself do it, was to grieve for my "lost" pregnancy. I suppose it depends on how you feel, I loved being pregnant and felt robbed for quite a while. I had this awful nagging feeling and it wasn't until one of the SCBU nurses told me that it was quite normal to "grieve" for losing my bump early when I wasn't ready was perfectly normal. I cried an ocean that day and that nagging feeling disappeared.

You are totally normal and you are not losing your mind!!

Hi, congrats on your baby. I had twins at 29 weeks & they were in the neonatal unit for 9 weeks. I sent my days with them, but in the evenings it was surreal being at home & watching the TV as usual, but with these two strangers over in the hospital.

I hated the 'not being in control' & felt like snatching them at times. i would arrive at 9am and find they'd been bathed so I had nothing to do, or they had been moved to a different cubicle, or dressed in yellow which I hate! The smallest was pretty sick but the brisk nurse said to me "We don't lose babies at 29 weeks these days" which I found a comfort.

Strange as it may sound, I also found it hard to accept the pregnancy had ended. I still felt pregnant. Maybe I'm just weird!

It is no doubt a pretty strange time, but I hope all will be back to normal for you soon.

Are you expressing milk? It kept me going, wasn't exactly fun but gave me a purpose, on the 'machine' - every four hours day & night until they could suckle.

Make sure you eat and sleep properly. It's the one thing you can do and not only will it help you produce milk but being on top form health wise means that mentally you'll cope better.

and read this thread. It'll help

Jack, have just read your thread properly, about grieving for the lost pregnancy - maybe more common than I'd realised.

Mumsnet is wonderful, I wish you lot had been around to give me advice when I had my dtws. But now you're there for my teenagers -yes, my little sickly babies are wonderful, big strapping 15yr olds!

So chin up Sticki, you're not alone, we're thinking of you & this horrible time will be over soon.

oh and congratulations

Have a look at this download.

I read a copy of this when my ds was in SCBU. It helped me understand what was going on.

Hopefully your ds is well and just needs to put on weight before he can go home.

Ds was very poorly but is now a strapping 5 yr old.

Congratulations! It is hard when you have a prem baby, no one is quite sure whether to say congrats or not.

Take it one day at a time. Or one hour at a time.

Try not to feel guilty about getting the rest you need or spending time with your dd. Your baby is being well cared for, and the (slightly wierd) bonus of having a baby in NICU is that you get to have some proper nights sleep and rest - which, lets face it, you need.

Take photos, keep mementos. NICU can be so busy! One day you will cuddle your hulking great boy and marvel that he was ever this tiny.

Ask questions. Ask for help whenever you get the chance - people like to help, you're doing them a favour!

It's ok to grieve for what didn't happen. Or shout and scream.

This is the most intense, surreal time. You will get through it though!

Thank you everyone for your support and positive messages - they have really helped me.

DS is doing well, day by day. We did our 1st breast feed yesterday which was amazing, and hopefully he will build his strength up each day. He hasnt needed any extra air or oxygen for a few days now so we can see his lovely little face free from tubes. All this has really made me appreciate the little things - just him holding my finger is brilliant.

I was feeling very excited today about our little family but still so scared that it could go wrong. We have tried for children for so long and had so many difficulties conceiving that I guess I fear the worst. I so want him to be ok - I guess I just have to try to keep positive day by day. I loved the 'positives about having a prem baby' thread.

I agree that I feel expressing milk is my 'job' at the moment and one way I know I can make a difference for him. As you suggest Im going to try to build my strength up for when he comes home, as well as get all the things ready (we havent even finished unpacking in our new home yet!).

I think the 'grief' for the rest of the pregnancy is also what Ive been feeling. The care here is fantastic but there isnt anything about the emotional side of prematurity or life in the NICU - perhaps because of the language barrier. So I will download the Bliss info.

Congratulations on your DS and well done to him for moving off the oxygen.

I had DD1 in 2006 at 32 weeks. She came very quickly and was in NICU - they had told us to expect to be able to take her home near her due date.

She had a grade 3 'brain bleed' and didn't come out of her incubator for 9 days.

She did fabulously and came home after just 23 days. By which time we were unsure about how we would cope without all the machines and nurses!

And they gave us very little warning about bringing her home - just told us on Day 22 that the mother's room was free that night so I could stay over and then take her home the following day!

She is now 2.10yo and perfect! Has been signed off from paed consultant since 18mo.

It is helpful if you can do as many of the 'cares' as possible whilst DS is in NICU. They focus very much on routine and measuring and sometimes need to be reminded that it is YOUR baby! My midwife had a chat with them about this for me...

DD2 also came early but only 5 weeks - which was nothing compared to DD1! (No reason found for either prematurity!)

Again, I was at NICU every day 3 or 4 times for every daytime feed and care. I would phone before leaving to ensure that they would not do it without me.

DD2 is now 29 weeks old and perfect!

It does get better and before long you forget to adjust their age. They catch up eventually!

Take care and I hope things continue to go well with DS.

And just an idea, but if you have trouble communicating, perhaps try the german chat thread and have someone translate a request for information or times of cares or whatever you need.

Copy this down and then hand it to a nurse at NICU.

Could even be something as simple as pointing out, in writing, how fragile you are feeling and asking for some kangaroo care time.

Hi sticki.

I had my twins at 30 weeks in germany in october last year, and felt exactly as you are describing. Its bad enough that you had your baby prem, but to have it in a different country where you cannot speak the lingo is another thing.
Luckily for me (and I don't know if they have one at the hospital where your baby is?) they had a ronald mcdonald house. i ended up staying in there for 7 weeks, whilst my twins were in scbu. they had plenty of people in there who spoke english. they also had internet access, so i could pop onto mumsnet at any time!!! I know a lot of people will say this to you, but things do and will get better!! do the docs speak english? i had a huge 'lost in transaction' episode, to which i burst out of the scbu in tears!.it turned out that the 'nurses' wanted the twins asleep at certain times - something they had not told me or my husband!!! james and edward (my twins) are doing really well now, and we are back in the uk.hang in there,take loads of photos. you have to remain strong for your baby.
x

aother tip - whilst i was reading other people's posts is to go on babelfish, and download words or sentences, so you can go to the hospital and tell the docs what you want to do. gets loads of kangaroo care. it is the best feeling ever!could you try and find out if there is a translator in the hospital?
x

I kept telling myself that this was just a short period of our lives, when my DTs were born at 28 weeks, 9 months ago. They were in NICU/SCBU for 3 and 4 months. We went back to visit SCBU today, and it seems like a lifetime ago. It really was just a short phase, and now we're well into real life.

Congratulations x

congratulations on the birth of your son.

Just over a year ago a friend had a very premature baby - born at less than 26 weeks. She found it incredibly difficult but a year on he is crawling and pulling himself up on the furniture. This will pass, hang in there.

I think she found the BLISS website useful - and they have a translation service. Check it out here www.bliss.org.uk/page.asp?section=141&sectionTitle=Helpline

HI Sticki,

Congratulations on the birth of your ds.

My twins were born at 30+1 10 days ago after placenta praevia too. The whole experience around delivery was pretty scarey and probably only adds to your mixed feelings now.

It must be tough being in a foreign country-especially with your DD too. (I also have a 3yrd old DS1).

I'll be thinking of you,

Isobel
XXXX