So pleased you have your girl home with her sister

Aside from the drug withdrawal issue, many adults (let alone children) find difficulty in adjusting after an ICU stay. It is such a traumatic and abnormal experience, full of noise and disturbance that it takes time to recover 'normality' so the difficulties she has at night may be part of that as well as reflecting her condition. But she WILL get better and this is going to be ok and you have done so well to keep it together as you have. Your daughters are very fortunate in their parents.

god was wondering about you and your dd

thanks for the update

so glad to hear she's home and well

btw-you write beautifully

twinmam, thank you so much for coming back and updating us. I have been hoping that we would hear from you.

Its so lovely that you have her home and that you feel you have got your family back. Also great to hear that there is no serious unlying condition.

I am so pleased for you

<PS just re-read my previous post and didn't mean to say my broken leg experience was a "bit different" I meant to say it was "a lot different"!>

Your post made me cry for a different reason this time! You write with so much feeling. I am so so happy for you that your dd is on the mend. It must be so amazing to see her playing with her sister again.

So happy that things are looking so good from here on in twinmam. Every best wish to you and your family.

twinmam - so happy to hear from you

Thanks for updating us. That's a lovely post and I'm so glad she's fine.

'children'

how lovely to read your post and hear how well she's doing. I'm so glad its nothing ongoing! I know exactly what you mean about not taking her for granted (though there is something lovely about being able to as well, of course, with hindsight!) and hope that the hard side of it all fades leaving you with that extra appreciation you describe so eloquently...

I for one appreciate you taking the time to update us, and of course we shared your journey - as many have shared mine. They are 'all our chlidren' as someone wise once said.

Hope the residual withdrawals go away fast, and that both your dds continue to enjoy good health!

Just an update from me and a VERY happy one! We brought DD home on Wed after 3.5 weeks in hospital, 2 of them in intensive care. She is doing brilliantly. Today I was watching her play with her twin sister, shrieking with laughter, and wondered if the last few weeks had just been a nightmare!

The basic conclusions reached by the medical team are this: the long-term cough is attributable to reflux (discovered on a barium swallow) and this recent episode was an isolated incident. She caught a dreadful infection which led to acute tracheitis - her windpipe became so swollen she was unable to breathe hence her having to be intubated. They are not ruling out an underlying problem so she will be monitored and has follow-up appointments plus we have open access to the ward should we ever have any concerns about her breathing but generally the feeling is that there is no reason that she should become so ill again.

Even when they did eventually wake her, her windpipe was still terribly swollen but since then she has thrived. The worst thing was the withdrawal from the morphine and other drugs they used to keep her sedated - she kept waking up so needed lots of top ups.

She was hallucinating, screaming, shaking etc and it was horrendous to see plus, for us, completely unexpected. It seemed so cruel that a baby should have to suffer such symptoms.

They stopped the morphine on Tuesday and once they had monitored her they let us bring her home on Wed. By then I was climbing the walls! Tuesday was the first day when I realised taking her home was not only a possibility but that I really wanted to, to the extent that I found myself threatening to discharge her as I was convinced she'd be better at home She was almost back to herself although quite anxious at times and also quite nervous about being anywhere near strangers, understandably, especially those brandishing anything that looked remotely medical!

Since she has been home she has thrived. DH and I bathed our DDs tonight and he said "we have our family back". He was so right. She still is suffering some withdrawal symptoms plus side effects of the drugs she has for withdrawal (chlonidine) which we are weaning her off gradually in 48 hour increments. She is fab during the day, completely normal, but night time seems harder for her. The last couple of nights she has gone to bed with only minor protests but then has woken later and become very distressed so she has ended up in our bed. It's hardly surprising given that since she came out of intensive care, the time she spent in hospital she slept in bed with me. She also has awful sweating in the night and can get quite worked up and anxious, bless her. We are having to give her her meds during the night at the mo so that doesn't help with the whole getting a good night's sleep thing.

Of course, having her in our bed is no hardship. There were points over the last few weeks when I wondered if we were going to lose her so the fact that she is here and, not only that, she is OK and so completely herself is so wonderful I can hardly believe it. Each night I dream we're back in hospital so it's an enormous relief to wake up and find that she's here and OK, quite the opposite of when I wanted to wake up from the nightmare that we found ourselves in but was forced to face as reality.

It does feel as if we have our happily ever after. I don't think I'll ever be the same after having faced losing my DD and I hope that as the shock wears off I will never take her or her twin or our precious family for granted ever again.

Thank you for all of you who sent such supportive messages; your kind words really did help. Those of you who experienced similar situations gave me such hope and those of you who hadn't but simply, as fellow mothers, felt sympathy for me all gave me the strength I needed to keep on going when really all I wanted to do was curl up and howl. That strangers would shed tears for us, pray for us and think of us was stunning. You were companions to me in a short but often unbearable journey and for that I am eternally grateful.

I agree - it is a bit of an eye opener. You go along in your daily life and it barely registers but one day you are there in the middle of ICU and you realise that this is happening to families everyday. It certainly makes you grateful for the NHS staff and grateful for surviving it.

There's an odd guilt though too I think - for me there is anyway. There was a child in ICU in similar circumstances to the one you spoke of twinmam; a child protection issue and she died. My friend's little boy Andrew - I met his mum during those long weeks (we were there for 8 weeks); he died shortly after we left. The little boy in the next bed to dd in our local hospital one time;arrested in the night and I stood and held his his mum whilst they tried and failed to resus him. There were others too. It breaks my heart to think of them and I know just how lucky we've been.

Sorry twinmam - I don't mean to bring your thread down. Tis a happy thread with a happy ending but there are alot of memories that resurface even now.

Hope today is a good day and I know there'll be many more