I am worried sick. My sister has been taken to hospital as she is losing fluid. She is only just 24 weeks

[Pinkchampagne]

She has had a stressful pregnancy. She has had bleeding problems from the start but every scan has showed that baby & placenta is ok. She is now just 24 weeks and has been losing fluid since 1pm today. She says she can still feel it moving around.

I am out of my mind with worry. The baby will be too little to stand a good chance of survival.

Hi again! Glad your sister is reading this, I found it very reassuring that other people had 'been there'.

Yes, I went through pprom and wish I'd held on as long as your sister. She did amazingly well. I was on bed rest for two and a half weeks before Gen decided she'd had enough.

And Gen is doing really well, thank you for asking. Nearly three months corrected (six months actual - eek), smiling, trying roll... never thought I'd get here.

So pleased things are going well x

Trying to roll.... (extremely tired emoticon)

I am really pleased to hear Gen is doing so well now, BadNails - that is great news. My sister has contacted me & said she would love to talk to you, being that you went through the same. She would also love to contact you, CelticPromise, to talk through the whole home on oxygen thing, as she is a little anxious at the thought. She is not a mn'er atm though. Is there any chance you could pass on your contact details to me somehow to forward to her?

I'm also a home oxygen ex-prem mummy - suggest your sister goes to the Bliss website messgae board - loads of info & support for this type of situation.

I used the name jamie's mum on that site, if she wishes to contact me through that I'd be more than happy to give support

Thank you, LOC - I think she was thinking of joining Bliss. I know she has taken a look on there. How long was your DS on home oxygen?

I have pm'd you Pink .

Thank you. I will pass your email on to my sister. Will be good for her to talk to someone who has been through it.

Hi Pink, I've also send you a pm.

sent [fgs, what is wrong with me!!]

How is he doing pink? :)

Pink: he came home on 0.2 level of oxygen, for a total of 6 months - 3 months being 24 hours. Then we gradually weaned him off it during the day, and he was on it at night-time only for a further 3 months.

I did find it pretty hard going, felt like a carer more than a parent. We were advised not to take him to indoor public places eg cafe, supermarket etc - so was effectively housebound unless I fancied wandering the streets with an oxygen cylinder strapped to my back!

The oxygen is very easy in itself, even I could do it! It was more the restrictions I found difficult, plus isolation as we had no family support nearby. I understand some areas allocate blue badges, and provide a respite service (so you can pop out & get some fresh air/sanity time) but ours didn't.

Bliss really is excellent, they also have a family support phoneline (I phoned asking about prams for oxygen etc) and a buddy system too. I found their message board was my lifeline while I was stuck at home & would definitely recommend joining them

Thank you both - my sister will find it really helpful to talk to you. I will pass both of your details to her.

Haven't had todays update, but he is 4lb5oz now! My sister has been a little worried as his oxygen requirements seem to have gone up a little (from 20s to low 30s) but this may be something to do with the switch to low flow recently. The nurses told her not to get herself too concerned about it but she said it is hard when you are constantly looking for little improvements.

That sounds really tough, lotsofcheese. Did your DS have chronic lung disease like my nephew? How premature was he? Sorry for so many questions!

Pink I hope it's going well. He seems to be gaining weight quite well.

Thinking of you all still x

Hi again Pink, my DS was a 29 weeker but weighed 720g (average size of 24/25wks) as he'd stopped growing because I had pre-eclampsia.

yes, he had CLD - but outgrew it fairly on & had never had any chest problems at all, despite this! We had been led to expect RSV/pneumonia/admissions/chest infections once he got home but he's never had anything like that.

however he does have quite nasty reflux (big link between CLD & reflux - often presents around term date or once discharged home) but again is outgrowing that. He also required a high-calorie milk to grow properly as standard formula/breast milk didn't provide enough for him - babies with CLD have increased calorie requirements & can have problems with growth.

I suspect your sister may "hit the wall" emotionally once she gets home - events can catch up with you when you have time to mull them over at home - I was quite traumatised by the whole thing.

If she hasn't already, your sister should have screening for PND

Just popped on to see how you are doing. Lovely to hear things are going ok x

I worry about that, LOC, as she doesn't have much time to process everything atm. I will try to offer as much support to her as I can when she brings him home but realise it is going to be tough for her. She is aware of this too.

Thanks for all the info you have given on taking babies home on oxygen. It has been very helpful. As I say, my sister often takes a look on this thread & has looked on the Bliss site too. She just hasn't had the time to join yet.

My nephew had another lung scan the other day & it showed things had not worsened, and if anything got slightly better. he also had his first eye test, which shows all is ok there for now.

That's great pink!!! :)

Hi Pink, been lurking and sending good vibes - just had a thought, wondered if you/your sister had already got a copy of the Tommy's 'Having a premature baby' book - it's free here and covers going home too.

Hi again Pink. Just wanted to say I did not find it too isolating having the home oxygen. I invited people round (although I made them wash hands a lot!) and went to friends' houses. I was advised that he was vulnerable but never told not to take him to indoor groups at all. In fact we went to a couple of baby groups, baby massage and buggy fit, oxygen tanks and all. Buggy fit is a really good one to get out and meet mums without having to have your baby at close quarters with others.

We got a blue badge on the grounds of bulky medical equipment to be transported at all times. We also got disability living allowance. It is worth making those applications as soon as your sister can as they take a while.

Great news about lungs and eyes. He will be home before you know it.

Thank you for that link, Chateauneuf - the book looks useful.

That is reassuring, CP. It is all very daunting, so will be good for my sister to read how well you coped with the oxygen. How long was your DS on it?

My nephew has reached 4lb 9oz now!

Hi, Pink, I just wanted to say that I was admitted at 24 weeks too, for the same reason - we were convinced he would be born that night....he ended up being 11lbs, 2 weeks late and apgar score of 9. something.

(in my case it was a polyp nudged by vigorous sex) - but we had a very happy and stressfree pregnancy once we recovered from the shock. good luck, i know its terrifying. x

oops sorry, just read the first page! xç

Hey Pink, brilliant news on the weight gain! We had home oxygen for almost five months. The community NNU nurse visited every week or so. She would bring a monitor to attach him to overnight and then tell us whether to turn it down based on the results. It just gradually went down until one day she told us to take it off, and luckily DS managed fine without. And he did come home in a relatively high amount I think, we had a concentrator so we didn't have to worry about running out and a back up cylinder in case of power cuts.

Must have been very scary at the start, Celtic. My sister says she hasn't got round to contacting you yet but will do. She has joined Bliss now though & started a thread titled "is there light at the end of this tunnel?" She is under the name of MN'smummy.