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

So glad things are looking brighter for you. I wish you and your family well x

So glad to hear your news Twinmam, you sound like you are coping with this so well. I can't imagine the pain of those poor parents's whose children are in hospital long term. Your posts have made me realise how lucky we are.

I know what you mean about going through it for her. Its a bit different I know but DD and I fell down the stairs on Boxing Day. She was fine but in saving her, I dislocated and broke my ankle. Even though I was in absolute agony I kept saying "thank god she is OK". That was all I cared about and every stage I was so thankful that she was OK and was aware that it could have been so much worse. At the time I even took the time to really calmly tell her I had to go to hospital in an ambulance because I'd hurt my leg but she could come and see me later and it would be exciting. It was only when she was safely in front of the telly I went back to howling! Anyway, I digress, the point I am making is that we find amazing strength when it comes to protecting our children and there is nothing worse than seeing your child in pain.

I hope the withdrawl eases soon and you get her home where she belongs.

so glad to hear your news twinmam.

you have really been through it, I remember dd2 in hospital for three days at three weeks old.....I was a total wreck! And she wasn't even in icu.

You have been very brave (as have all the twinfamily!)

Twinmam I can hear your dd, and you, recovering by the day. Lol at you and Saggars and your dhs - dh is not a pacer, and he did shifts in HDU, but whereas he would pop out for a coffee or to eat, or to read the paper (read the paper?!?) I had to be dragged out for a pee. Must be a Mum thing!

The twin reunion sounds wonderful, and must have been a huge relief for you and dh to see them together again.

The withdrawals, OTOH, sound pretty awful - we were lucky enough not to go through that as dd wasn't actually intubated, 'only' CPAP. I hope she recovers as well from those as she has from the infection, and that tomorrow is easier. Its good they're doing it gently, in so far as they can.

I stayed in touch with another Mum from those HDU days for well over a year, till she moved away....her dd was an 'oldie' of 8 weeks at the time, with DS and a hole in her heart. Both of us felt lucky not to be in the same situation as the woman whose 9 month old was in the isolation bed, with an undiagnosed problem that kept her there month after month unable to maintain her breathing unaided when asleep. In January, two years later, we were back in HDU for a night after dd had an ENT op, and that little one was still there

You're bringing back a lot of memories! Tis a good thing.

Hope you get some good sleep tonight as well, still thinking of you.

Sag - LOL at you and your DD sending DH away to read the paper. Bless him!

Ggirl - you are so completely right about the healthcare in this country. Had we lived elsewhere it is very likely that DD would not be here alive today. In fact, both DDs and I would probably not be alive what with the complications I had during pg. Something to be incredibly grateful for.

One of the things I have vowed to think of often once this is all behind us (which I am now really believing is going to happen) is the world of PICU. I will try to remember the dedicated staff. God, I know how corny that sounds but really these people are amazing. They saved my daughter. Quite quite literally they saved her life and they gave her back to me, albeit in a drug-addicted state And whilst they were doing that most important of all jobs they took time to reassure me, to inform me, to support me and even to hug me. I can't really begin to explain how grateful I am and if I ever hear anyone slate the NHS then heaven help them. This from me who has slagged it off many a time but bloody hell, they've come through for me.

I will also take time to think about the other children I've met in there, the little girl in the cot next to DD who has been in intensive care since her birth 11 months ago and whose poor mum still can't take her home, much as she longs to have her little girl with her. I feel so incredibly lucky and I don't want to lose that in the grind of daily life because sometimes it's easy to lose sight of how precious your DCs are in the midst of the general chaos. I actually faced losing DD. On Saturday night I sat and howled for hours and I just kept thinking "I want my baby, give me my baby back". I have got her back, she will come home and she is going to be OK and that just makes me feel like the luckiest person alive. Am also trying to remember that as we watch her fight this withdrawal and wish we could go through it for her.

You sound just like me lol. I had to be prised from PICU to eat and sleep. dh paces, bless him It drives both dd and I nuts. When we go to appointments now he takes us because he feels the need to be close by but generally sits in the car with his paper or in the canteen. We're all less nervous that way

twinmam-I have been away for a few days bit was hoping your dd had improved.So glad to log on and find she is breathing on her own!

How fab.Reading all your posts and others makes me realise how wonderful our health care is in this country.

Thinking of you all and hoping for even more improvement!

Saggar - exactly the same here re. the different ways DH and I deal with this. To me, it's our job as parents to be there by her side, fighting alongside her IYSWIM. I have certainly felt that's defined my role as her mother in the last few weeks, which has left me very torn over DD1 and how she fits in, poor little love I'm certainly looking forward to making it up to her in the next few weeks

I've been beside DD2 for everything and even insisted that I was there for extubation. Luckily we had a very understanding consultant; the nurses told me that usually they ask parents to leave in case anything goes wrong which is a distinct possibility. Re-intubation is not a nice thing and distressed parents can get in the way apparently! If they had let me go in to theatre with her for the endoscopy I would have done and that moment of her being taken away, despite the enormous trust I felt in the medical team, remains one of the most traumatic moments of this awful time we've had.

DH would rather not be there the whole time and initially I too took this as a sign of him somehow lacking in loyalty. I saw his more practical concerns as excuses to be away from hospital. In some respects they probably were but I'm seeing now that it's OK to not be here the whole time.

That said, if DH has been in hospital when they were taking bloods etc he has been right there with DD too. I have proved a much more effective pinner-downer though and have a pretty impressive head lock manouevre for babies who don't want to be nebulized!

It is just different ways of dealing with things but being with DD has helped me to cope as I have had to be strong for her and felt that I was doing something, fulfilling my role as her mother by being there. That said, I've had a few hours away today whilst DH has sat with her and it's been a relief to be on my own and having some quiet time. DH is with her now although I suspect this is because they have brought an enormous comfortable reclining chair in for us so we can sit holding DD - suddenly he is displaying much more of an interest in being there for long periods of time!

She is doing really well. She removed her NG tube but has managed to eat something plus take an array of brightly coloured liquids orally (morphine, valium, etc etc, poor little baby). This is another step closer to home and reminds me of our battle to get our girls out of SCBU and home with us where they belonged.

Actually, I'm in no rush to get home this time. I'm very happy to take things gradually and allow DD to get better in her own time although obviously I'm desperate for these withdrawal symptoms to be less hideous for her. I can't imagine the uncontrollable shaking nor the hallucinations but she is coping incredibly well. I have always been proud of my daughters but now they have just blown me away with how well they've coped with this experience.

As ever, thanks. How lovely to hear from people who've been through something similar and gone on to happier times and also from people who can imagine how terrible it's been and have been kind enough to post and wish us well.

Its good to hear she is getting better. I'm still thinking of you and your family and sending you all my best wishes

not posted before twinmam but have been following your story. Thank you for updating us and i'm really, really pleased and relieved your dd is getting better. I look forward to hearing that she has come home

Yes you will get there

I asked about twindad because I know that dh and I dealt and still deal with dd's problems very differently. He basically hands her over willingly and has pretty much total trust. I on the other hand have to know everything and probably drove the PICU staff mad with endless questions. Even now I still visit her consultant with notepad lol. At first I took dh's reluctance to spend time in PICU for example as a bit of a slight; like he loved her less somehow but I did come to realise that we just cope differently and that there are no rights or wrongs in the way we handle it. I'm glad you are supporting each other.

And yes withdrawal from the meds sucks. I remember having a complete panic on because initially dd was very floppy and didn't focus and it seemed to go on for days interspersed with almost manic episodes when she was the complete opposite. It must be an awful feeling. Hope the next few days pass quickly.

Well, we're still in PICU but may transfer to HDU later today or possibly tomorrow. It largely depends on whether they need DD's bed in PICU which in a very selfish way is a great position to be in ie she's not considered to be in as much danger.

Ironically the main reason she is still in PICU is not what she came in with; her breathing is great and the consultant is amazed at how well she is doing considering the extent of inflammation in her windpipe. Even when they extubated on Mon it was terribly swollen with no give whatsoever. The reason they now want to keep an eye on her is that her withdrawal symptoms are so severe. She has been hallucinating and suffering whole body tremors which has veen very distressing to see. They are doing all that they can and weaning her off much more slowly than originally planned. They tell us we could be in for a rough few days...

Thankfully this will not last, however distressing it is for DD (and us) at the moment. They are even talking about discharging us next week and bringing her back for all the necessary investigations as an outpatient which is fantastic news.

We did manage to sleep in the end last night. We were all set for shifts and I had DD asleep on me at about midnight then I got kicked out of PICU again as there were problems with the little boy I mentioned earlier. (Sadly, though I hate to jump to conclusions, I fear it is a child protection issue as there have been endless social workers, police, police photographers etc plus the parents referring to when social services would let them visit. Too awful to think of, poor little boy...) They had given her something to help her sleep & I managed to get her into her cot easily. The nurses rang me at 6 to say she was awake. They will give her something to help her sleep again tonight which means we get to rest then to spend all day with her.

DD1 came to visit her twin today It was utterly adorable and DD2 responded so well, seeming instantly much calmer and happier. They kissed and cuddled and stroked one another's faces. DD1 kept saying 'Awww'. The nurse let us go onto the ward and in the playroom so they had a bit of a play but DD2 got tired very quickly and I don't think the farm animals mural was helping her hallucinations! We'll let them spend more time together tomorrow.

We're getting there, I think. I just wasn't really prepared for this bit so focused was I on having her awake. I wasn't so naive that I thought she'd wake up and be back to normal but I had no idea the withdrawal could be so severe and so awful for her.

Twindad is doing OK thanks, Saggar. He's been great all the way through although we've had to accept that we deal with stuff in different ways and support one another in that. He is with DD at the mo and I'm having a break as have been in PICU pretty much all day except for loo breaks! He suggested I come and have a rest which was sweet of him. He is finding this particular part of things really upsetting. I think to both of us it just seems to unfair that in trying to make her well she has ended up with something else she has to go through. We know that it is temporary though - we just wish she knew it too!

We WILL get there though and things will be even better than we'd hoped for once we get this phase out of the way

Hope you get to the ward today twinmam. Like Elibean I remember it as feeling a little scary after having so much support in ICU - like someone suddenly took away my safety net.

How is twindad coping?

yeah great news

onward and upwards from here

hope you all get some sleep

Fabulous news, twinmam! I'm just so happy for you and your family.

Excellent news.

Wishing you all a peaceful (! relative) night and an end to PICU. I do remember leaving HDU and going on to the main ward being very odd, less monitors, no nurse in the room all the time - took a bit of getting used to, but lovely at the same time.

I'm glad you were able to process a bit on MN, seems to me thats a huge part of what its here for

what fabulous improvement. So pleased you can get cuddles and sob at her saying the word 'mummy'!

Things are continuing to go very well. DH is with DD whilst I get something to eat and some MN time!

DD hasn't had to go back on the CPAP and they are talking about transferring her out of PICU tomorrow. She is having pretty bad withdrawal & they want to keep her under observation tonight. She is OK when being held by me but gets distressed if me or DH arent there which then makes the shaking etc much worse. Hopefully that will wear off soon as it's pretty rotten for her.

Largely because of the withdrawal symptoms we're holding off on bringing DD1 to see her twin. We're planning on having a brief visit tomorrow so they can catch up and then obviously more and more time together as DD2 improves.

The plan is to keep her in hospital for a while longer to make sure she is OK and to do the barium swallow before discharging. We'll then come back to see the consultant in 6 weeks. At that stage she may have to have another exploratory op but the consultant said he wanted to give her a chance to recover from this awful infection first.

We're over the moon. It just feels like a part of me that was missing has been returned which of course is exactly what's happened.

I think we're in for a long night as she will need us around but I'm so grateful that we're back to that situation even if it is exhausting. I know I will probably collapse in a big heap once we get her home and get the all clear (or as near to it as we can)! Luckily we have seen just how amazing our family and friends are and we will have them to support us. Likewise I've discovered how brilliant MN is to get all those hidden too difficult to discuss feelings out so no doubt I will be coming on here when it all hits me and I begin to process what I've been through.

I have had some food and a bit of time so will go back to her now. DH and I will do shifts tonight so we'll both get some sleep. I might try and persuade the nurses to find a comfy chair for me to snuggle up in with DD and close my eyes for a while!

Thanks everyone

twinmam - great news and I am sure that a visit from her sister will perk her up too.

Hi twin,
How have things been today then?
Hope you're doing ok x

Great to read your update

Really pleased twinman, its all sounds really positive. And so lovely that you can take her twin in to see her.

I know you still have a way to go but these moments when you feel positive and happy give you the strength to get through the more difficult times, although hopefully you are through the worst of it now.

Fab news, is so lovely to read and I don't even know you. You must be feeling so relieved. Agree with Elibean, you have to take care of yourself now too.

Just delighted to read your news, Twinmam, and very relieved for you!

She certainly is bouncing back, bless her - hurrah for her, and well done you...do agree with the others, really important to keep taking care of yourself because now dd is recovering, your own recovery process (from the trauma of it all) will start too...eat, sleep, keep posting!

Look forward to hearing how she's doing

Fantastic news!

Bet the twin reunion will be wonderful too.

So glad everything seems to be coming right.

What a wonderful moment for you and your DD, twinmam.

I expect the waves of shock about what has happened will keep hitting too, so make sure you are taking all the help you can get from those around you.

brilliant news! I'm so relieved to hear it. Do look after yourself, and well done for keeping it together over such a difficult time. Hope is all onward and upward from here.

Well done to you and your dd. Things are defo going in the right direction! And I do hope the little boy isnt an abuse victim, maybe an RTA or similar. The other alternative is too awful to bear x

Lovely to hear the relief in your post twinmam.

In a way I think this period is more physically draining because once they're awake you just have to be by their side don't you? Do look after yourself. Hope she continues to make forward steps now and they can ofer some explanation as to why she was so ill.

She is off Cpap and has been for almost 2 hours! No breathing assistance whatsoever. She woke up, looked at me and said 'Mummy'. I thought my heart would shatter with happiness. We are still not out of the woods, we still have a long way to go but we are moving in the right direction now. Her breathing is still quite noisy but she is not having to make a huge effort to breathe like she was before. Of course, she may have to go back on Cpap but I am so grateful that she CAN breathe on her own.

She is suffering pretty awful withdrawal from all the meds, shaking and looking quite grim but they are going to give her something to ease her off it.

We've been booted out for rounds again - there is a little boy opposite DD who, I think, is part of a child protection issue (head injury, police have been etc) so clearly they can't have me around eavesdropping. I'll be straight back in there with her as soon as I can though and we are going to take her twin in to see her this afternoon.

I've had a cuddle this morning and, god, the feeling of having her cuddle me right back was amazing. It sounds weird but it is almost like she has been born all over again especially as I didn't get to hold her when she was born as she was whisked off to SCBU.... I just feel so very happy. I know, I'm on a huge and bizarre high at the moment! I know we have tough weeks ahead of us yet, further explorations and so on but I really feel as if we are one step closer to our lovely ordinary little life.

Thank you, all of you, so very much. I'm off to see her again as they've just rung through but will update when possible.

Morning,
How did the night on CPAP go then? Hope alls still on the up x

Great news! Keep hanging in there.

Fantastic

I am just so glad. Sounds as though that little dd of you is on the mend, and its true, they do bounce back as fast as they go down!

Will be looking out for your further updates, xxx

glad to hear your good news
fingers crossed for you all

I am so pleased today went well. Its so good to read your DD is on the mend.

Hope it continues in the coming days.

Am keeping everything crossed for your DD. Good news today, hope it keeps on coming.

twinmam, so so sorry to see all this, I only just caught the thread. Very glad to hear dd is on the mend, can only imagine how torn I would feel with one twin at home and one in the hospital. I bet you can't wait to see her wake up. Wonderful that you've got so much support there to help you all get through it.

Oh good news twinmam What a relief.

Just read this, what a stressful time for you all, your poor LOs (both of them). Hope you are ok, glad to hear things are a bit better.

Wishing your DD a speedy recovery

Good news so far then. Still sending you my best wishes. I've been thinking about you and your daughter all day and hoping you would have some good news. Fingers crossed for the days ahead.

good news - long may it continue

It's so good to hear about your DD's progress twinmam.

Lots of thoughts of you and your family here today, and every best wish for the days ahead.

oh twinmam

I am so so pleased for you and your family

fingers crossed that her progress carries on and the doctors can get to the bottom of why it was so severe! Well done you for being so strong.

I came straight on here tonight to see if there was an update and I'm so pleased you've had good news. It's brilliant to hear you sounding so much more positive. I'm so excited for you that you soon may have her awake. I hope the investigations go well and they can soon find out what has caused this terrible for her.

I have to post, I too had a baby in SCBU while having a toddler at home. I cried all night and every car journey, I felt like I was ripping in two, and even though I was surrounded by support, I wanted to scream at everyone because they didnt really understand. Im putting all my positive thoughts to you and your family tonight, I really am. Remember children get so poorly so quickly, but they also recover amazingly quickly too. Also, if your little one is unconsious, at least she cant be in pain/miss you. Be comforted by the fact that while she is sleeping she is happily dreaming and building up strength to fight.Please keep us updated, and offload everything here to help stay strong. Its theraputic to write things down.
Best luck and hugs to you and your family x

YIPPPPPEEEEEEEE!
am so pleased for you and will be sending lots of positive vibes. Clever, brave DD and you x

Brilliant news . I am so happy for you and will continue to cross my fingers for further progress.

Yep made me cry too. My nephew was in the PICU for 2 and half months at birth and that was hard enough. He was the first out of all the cousins (now there are 5 between me and my sis) and I frequently think about how things would be so much harder if we had other children at home to think about. Hope it all goes well for you x

I'm walking on air at the moment: they stepped down DD's meds today and then the anaethetist decided to remove her breathing tube 'to see what happens' (with plenty of back up in place, of course!) They removed it and they now have her on C-Pap which means she is breathing for herself but is getting extra oxygen etc. She is doing really really well. All of her Sats are great and she can breathe!

She hasn't come round yet although they have been gradually stopping all the sedation throughout the day. She seems like she is in a much more natural sleep though and looks very relaxed. They can give her medication if she starts to get withdrawal symptoms, bless her. She did half open her eyes earlier this afternoon and I think she focused on me for a little bit.

We're just in our little room at the mo waiting to go back in after the shift changeover. Have now got my laptop so can actually see what I'm doing rather than using my I phone (DH sorted out internet for me as I said I needed to be able to MN - everyone here has really helped me get the strength from somewhere and to carry on)!

Obviously this is not the end of our struggle. There is still a chance she could have to be reintubated and the next 24-48 hours will be crucial in assessing her breathing etc (apparently when she's fully awake and coughing there could still be problems) BUT she is doing so well so far. We're trying not to get too excited but we're just so thrilled, especially that at some point soon we will have our DD awake.

If all goes to plan the next step will probably be the barium swallow and possibly more investigations as they still think there is something underlying that has made the infection so acute. The things they are thinking of are all curable though so we don't at this stage feel terrified about finding out what is wrong.

It really does feel as if things are moving forwards for us.

Thank you, all of you, for your lovely, caring supportive and wise words. You have carried me through the hell of the last few days with your sympathy and solidarity. I will, of course, keep you updated with the latest which, I hope, will continue to be positive.

How are things twinmam? Have been thinking of you today.

wishing you all the best for tomorrow, hope they get some answers. Hard to put into words, but definitely will be thinking of you tomorrow.

Thinking of you and your dd herre too and will be praying you get a good outcome tomorrow

Twinmam - Just wanted to add some more good luck, for and your family.

Ds2 was in HDU at 11mths with pneumonia and fluid on the lung. He had to have a general anaesthetic to put the drain in, and it was the hardest thing we've ever had to do. Ds1 kept asking where his brother was, where I was etc. Nowhere near what you are going through, but I can relate to being split in 2, iyswim.

twinmam, I have only just seen this thread and wish you the very best for tomorrow. So sorry your little dd is going through this.

I know what you are going through. My DS3 spent 10 nights in hospital when he was 4 weeks old with suspected meningitis and he just wasn't getting better. He was transferred to the children's hospital.

I was in bits and felt so torn as I only got to see my other 2 at home for 20 minutes a day. Would drive home, read them a story before bedtime and then rush back as I was feeding DS3 frequently. It felt like a living nightmare and I spent a lot of time crying on nurses' shoulders.

It breaks your heart when they keep taking the blood and putting fresh cannulas in but try and be strong for your baby because your love will help her so much.

As for your DD1, you have just got to tell yourself that DD2 needs you more at this moment in time and she is being well looked after by people who love her.

I really feel for you, I hope your DD2 is back home soon.

I'm so glad that there is a plan in place. I will be thinking of you and your family tomorrow. Hope all goes well. In the meantime, try to get some rest tonight.

Sending positive thoughts and good wishes your way.

Have just seen this thread for the first time and want to wish you the very very best for tomorrow and the coming days.

I have 2 daughters and have had the misfortune to have both of them quite seriously ill in hosiptal at different times. I know that gut wrenching worry and anguish and the feeling of having no control of the whole situation. Its truely horrid and I wouldnt wish it on anyone.

Thinking of you all.

I'm so glad there's a plan! And even gladder the dr was positive and reassuring - I can imagine (actually, feel) your relief. Will be thinking of you tomorrow, and sending all the stamina and clear thinking vibes possible to you, alongside enormous good luck and get well ones to your dd.

Wishing you a good night's sleep meantime, xxx

I'm so sorry this is happening toy our dd, you and your family. I have no advice as, thank god, i have never experienced anything like it. However, your posts have made me cry, they are so full of emotion. I hope you get some answers tomorrow and you start to see some improvement in your little girl.

twinmam, what you are going through must be a torture, and you are doing a fantastic job keeping it together.

Thinking of you.

Thinking of you twinmam. Hope you have some answers tomorrow.

twinmam - you are doing so well holding it all together. 16mth old healthy twins are hard work (and don't I know it) but dividing yourself and your family up must be terrible - thinking of you all and hoping you have some good news soon

Hope everything goes well for you all tomorrow. I will be thinking of you.

I couldn't read this and not post. I am sending you every positive vibe I can for tomorrow. Your posts have had me in tears, my DD2 has been in hospital twice over night at 7 months old and I will never forget how bad it was leaving DD1 at home and looking at tiny DD2 in her hospital cot with a canula in her tiny arm. Your DDs are very luck to have you and your family around them. I hope everythig goes well for her tomorrow.

Will be thinking of you and your family tomorrow twinmam.

Feeling for you at what must be a heartbreaking time but glad to see there seems to be a bit of a plan in place.

Hope everything goes well tomorrow and in the days and weeks ahead.

oh good to hear there is going to be some progress

will be thinking and praying for you and your dd

twinmam, I am so pleased you have a way forward. I will be thinking of you tomorrow and wishing you all the best. Your posts have been so elequont and so moving and I am glad you feel more positive now there is a "plan".

Well, just when I thought I couldnt take any more of this endless not knowing they have decided to take her back into theatre tomorrow....

They will remove the tube and do some exploratory work. If there is anything they can repair there and then they will. If they dont find anything they will, if possible, bring her round and do a barium swallow which should give more info. If she can manage without the breathing tube they will leave it out for now but obviously they may need to put another one in. If they find something that needs prolonged treatment they may have to do a trachy to remain whilst that treatment (e.g. ops) is carried out, prob in another hospital.

Even if they have to intubate again there is a time limit to how long she can remain under and intubated so they are keen to get it all figured out. The dr said they wouldnt want to keep her intubated for any longer than 3 weeks, giving us another week and a half.

Whilst we have no answers yet I feel much happier now I feel that we will have a much clearer picture tomorrow. DH has taken the day off work as we feel it will be a day requiring much stamina, questions etc. I have come home for the evening as I want to be ready for it all tomorrow.

Please think of us and wish us luck.... I feel more positive than I have for days, especially as the dr reassured me today that they are not concerned and they have seen children react in the same way and get completely better which was music to my ears. I know this is not the answer to everything but it feels at least as if we are moving forwards.

Twinmam, I do so understand the fear. I hope you got a good night, and that both dds did too...no, it doens't sound as though lying on her tummy helps your dd. Nothing conclusive in that, but afaik the outward signs of a floppy larynx tend to be very noisy in-breath especially when asleep, worse on the back/easier on the front or side. I'm not sure if thats the same if the 'floppy' part is lower down, but in dd's case it certainly held true.

I also really understand the need to know, to have information and feel prepared - I had that too, to the point where after a week new staff coming on duty after their Xmas break mistook me for a doctor No, just a worried parent feeling out of control, but I think its very normal and sometimes pays off, too.

Hoping hard that the swelling goes down as the infection recedes, and that if she does need a trachy - and I hope she doesn't, obviously - that its only for a short while.

xxx

Twinmam, I don't have any advice either I'm afraid but just wanted to say that I am thinking of you. You have soooooo much love and support out here and whatever happens you will be strong enough to get through it. Keep us in touch with what the consultant says on Mon.

hi just read your post ,just want to say im thinking of you all ,

So sorry you are still going through this...

sending massive positive vibes and praying for a quick recovery for your dd .

Hi Twimmam, sorry I don't have any specific advice but I just wanted to say I am thinking of you. I have been in hospital with my DS and it does tear you apart to be away from your other child. My DD doesn't even seem to remember though, if that's any consolation. I hope you get some positive news on your DD soon.

Just come to check in on you twinmam. Hope you got some sleep. And get better news on Monday. x

Eli - just re- read your post and realised you said children are more likely to breathe better on their front which isn't the case for DD. Oh well! I'm just trying to second guess everything at the mo which prob isn't sensible eg getting myself in a state at the thought of a trachy when it might not even happen but I just want as much info as possible. I do have a lot of faith in the medical team but I guess I feel more in control when I'm aware of everything that might happen, especially as it seems there are no straightforward answers.

Elibean - forgot to say thanks for your continuing kindness & advice. She is on her back or either side - she is re-positioned every 3 hours to prevent bedsores etc. It's interesting what you say about lying on their front. Dd is a tummy sleeper & her cough has always been worse at night. When she had the crisis that night she went into intensive care she had been sleeping on her back then turned onto her front which seemed to set off the awful coughing fit that meant she couldn't breathe. It does seem to fit with the floppy larynx situation. The big thing at the mo is getting the swelling down though which I am hoping and praying will happen soon.

Thanks maltesers. Excuse typing - am attempting first go at MN on my i phone as am in my little hospital bedsit. I'm so sorry for what you went through and so glad it's behind you. Your situation sounds so incredibly similar to ours that it's quite frightening. The hosp are denying any link with the jab & I agree with your theory about it exacerbating a problem that's already there. Her twin had the jab at the same time and is fine. I am starting to get scared about the possibility of a trachy but it helps to know as much as I can about all the possibilities in order to prepare myself. I guess I just have to think that if she has to have it then it's to save her life and anything is better than losing her. It still feels so dreadful though, like mutilation - I so felt for you when you described your ds & his silent tears. I guess this is the hardest bit of being a mother, doing what's best for your child even when it hurts them and they don't understand. Thank goodness my dd will forget & your ds has forgotten these early years tho clearly it still haunts you and I know I'll never forget! I am hoping so much that we won't have to have a trachy - the drs are still talking about waiting for the swelling to come down - but I have to accept it's a possibility as she's had her tube in now for 9 days. They will be reviewing on Mon so we should be able to have a chat with the consultant then. I keep sobbing tonight because I miss her so badly. I'm aching for her. I'm also sobbing at the thought of not hearing her voice. She loves to sing and babble and talk and really it's just unbearable to imagine losing that. I know I'm jumping the gun and hopefully it won't come to that and of course if it does we'll find a way to cope just as you did.
Sorry this is turning into a mammoth spill! Thanks again and still for the messages of support which are a real boost to me. I got a cuddle again today and it feels so good to hold her. As time goes on though I am just feeling more and more lost and grief stricken. I would never have imagined being away from my baby for 9 days ( and counting). Of course she's there but not there. I wonder where she is, the essence of her & if she's dreaming and if she's missing me. When the sedation is light there's signs of her - she stamps her feet and waves her arms - but other times she's completely under. I keep hoping to wake up and find this is all some horrible nightmare. I know I need to count my blessings: she is still alive, she is safe but I just miss her more and more each day and I'm so frightened of what's to come.

Yes, we took him home with the Trachy in , but not for another 5 weeks, by which time we were fully Trachy trained and Child-CPR trained. They had to be sure we were safe to care for him at home and know what to do in any emergency. It was hard work maintaining a clear,, unblocked artificial airway in our son.
My sons' speech was obviously non existent when the trachy was in , and he attended the Speech Therapy Dept, as a matter of course. However, after the trachy was out, 10 months later after it was put in, his voice came back immediately and herealised how he could try to make sounds and talk. It was marvellous ! 8 Weeks after decannulation (tube out) , his speech at 24 months was at the rite stage for his age. He was a normal little boy.
I feel very emotional talking bout all this , cos i know what you are going through. Tears are in my eyes !

TWINMAM My son at 14 months had very noisy breathing and ironically enough it was the day after the MMR jab. I think because he already had a narrow airway the MMR just tipped him over the edge maybe.Maqybe the Mumps part of the vaccine swelled his throat a bit. N>B> If your child, everyone,,, is normal and well, i think the MMR is fine.

His breathing after the jab, bout 24 hours later just got really noisy and he went into hospital that nite and by sunday morning they put him on a drip and on monday a.m. he went into theatre to be intubaited. They tried steroids, adrenaline everything to reduce the swelling in his airway in ITC, but by the following Fri nothing made any difference. They couldnt take the intubation tube out safely and let him breath by himself, so they had to perform a Tracheotomy. Went he came round the following day the tears poured down his cheeks, as i held him in my arms. He looked at me as if to say, "What have they done to me Mummy? Why ?". It broke my heart. Sorry, dont want to upset you Twinmam ,, cos i know its so hard for you. It will be ok i think for you. They may have to perform a Trachy, but at least you DDs' airway will then safe. The Trachy surgeon said that no child gets to 18 yrs with a Trachy still in situ. things are normally put rite during childhood. As you know their airway is so small when still a toddler. Hugs, Hugs, and keep me posted. Lots of love M x x x x

you will get through it but it may take a while

we have nearly lost our little girl (a twin) a couple of times

was a nightmare trying to make life as normal as poss for her twin sister

It is a horrible thing to go through

Hope she is home soon xxxxx

Ah Twinmum , I'm sorry its taking longer than you - and we - hoped. Poor little poppet, I am sure she knows you are there and am so glad you got the cuddle. I do remember how very important it was to have that, when I got low like you, and I'm sure it was good for dd too. Now you know its possible, perhaps you could ask for another when the time feels right.

I agree with Saggars, it does sound good that the chest x-ray is improving, and hopefully this is the dark before the dawn...I did wonder, is she being nursed on her side/back/front? It may be impossible with intubation (dd had CPAP, which isn't the same) but if she does, by any chance, have a floppy larynx its very usual for children to breathe better on their fronts or sides. dd started on her back, but after a few days was turned and her sats were better as a result.

I'm sure the doctors know far more about this than me, though, so just a thought!

Thinking of you lots, and hoping you are eating and getting some sleep when you can - its v important too. xxx

Maltesers sorry more questions: did he go home with the trachi? How did you cope? Did if affect his speech development? I'm so glad it's all over for you AND that he has forgotten although of course you never will. Thank you so much for sharing this with me. It is so nice to think of a time when this will all be over, difficult to remember when we're in the midst of it and also difficult to chase away those dark fears in the middle of the night that she won't make it which is just unthinkable.

Thanks again, all of you. I DO feel much better for a night in my own bed and especially for being there when DD1 woke up. MIL and FIL are at the hospital with DD2 at the moment and I'll go through this afternoon. I guess I'm just so frustrated with it all at the moment as we seem no further forward.

Maltesers - it does sound like your DS was in a very similar situation, poor love. It's so reassuring to hear that you all got through it and that he's now well, bless him. They did tell us a trachi was a possibility and I guess it still is - esp if the swelling won't go down. The very idea of it breaks my heart, just as it did yours - the idea of us 'losing' her voice. She was a real chatterbox before she was ill and the thought of not hearing her is just awful. Of course it might not come to that but it just makes me feel so helpless. I would give anything for it to be me and not her who is ill, it just seems so wrong. What symptoms did your DS have for subglottic stenosis to be diagnosed? I know I'm second guessing everything at the moment but it does help me to have things in mind that I can discuss with the doctors. It seems better to be informed than be wondering and it does seem odd that there is no reduction in swelling at all after 8 days. That said, there are still secretions so I guess the infection could still be going strong. Also her temp keeps going up although they are controlling it with paracetamol.

Saggar - it IS a physical pain isn't it? I felt that the most when I handed her over for the op - as if they were ripping her out of me. I had stayed so strong before then but I just collapsed at that point, it was just agony. Thank god they brought her back to us safely. I do ache for her, to be able to look into her eyes, to be able to hear her voice, to have her put her arms round my neck. I'd even gladly have one of her mega tantrums at the moment!

I just have to believe that we will have all of that again and that it won't be too long as this waiting is starting to feel unbearable.

Another person thinking very positive thoughts for you and your dd. I'm sure that holding her helped her. Hope she feels much, much better very soon.

Aww twinmam I do feel for you. My dd was in PICU for 4 weeks fully ventilated and I know how precious that cuddle is. When people say that their arms ached to hold their child it really is almost a physical pain isn't it?

I had two boys at home during this period and they did fine honestly. It was tough on them at the time but like yours their grandparents did a sterling job.

I hope your dd starts to improve soon. Take one day at a time and look after yourself too; make sure you're eating properly.

twinman, I couldn't read and not post. What an awful thing to go through - I hope you got some sleep last night and they get to the bottom of it soon. I am sure she knows you are there for her. xxxx

omg you poor thing

so glad you got to hold her

I really hope things start to improve soon - the chest x ray clearing up sounds positive doesn't it, poor poor poppet

will be thinking of you

Just wanted to add my good wishes to you and your family. I hope you get some news about your DD soon. Take care. Will be thinking of you all.

I am sorry that you are still all going through this. I hope things improve really quickly.

Stilling pulling for you here twinmam......lots of hugs and fingers crossed. I hope she pulls through very soon.

Just an update from me. We are no further forward unfortunately She has now been in intensive care and unconsious for 8 days and at times it feels as if it's tearing me apart. I'm home tonight because DH practically dragged me away this evening. I've been living in hospital for 2 weeks now and it actually does feel nice to be at home although obviously I keep worrying that the phone will ring and there will be a problem. The reason DD2 is still unconscious is because they have to leave the breathing tube in (still a tiny newborn size tube) as her windpipe is still swollen, no sign of it going down at all. They were talking about the possibility of another infection on top of the one she already has but bloods suggest otherwise. It could be something viral - we're still waiting on those results and wont have them for a few days. So, we're where we were a week ago with her still sedated, still on antibiotics and waiting for the swelling to go down. They obviously can't give us any idea of when this will happen and I must admit it is starting to frighten me that we're no further forward. I keep worrying that the potential underlying problem (floppy larynx/ blood vessels constricting things/ whatever it is) is worse than we thought and that she could be in danger. The drs haven't given us any reason to think this and have reassured me but it all just seems so wrong that she's still going to be lying there on Monday a whole week after they said they'd bring her round. She has lots of secretions when they do physio so that ties in with the infection being there and her chest x ray today showed fewer problems than before so maybe it's clearing up. All this waiting is so frustrating and I miss her so much. It's been over a week since I heard her voice or saw her smile and it sometimes feels unbearable especially when we don't know when we'll be able to have her back. I said to DH today that I feel as if she's slipping away from me. I know I'm just tired and low today and that a night in my own bed will help me be strong again tomorrow.
DD1 is doing brilliantly. She is being spoilt rotten by her grandparents and is loving it. She is my one ray of sunshine at the moment and I'm managing to get a few hours with her every day. It will be lovely to be there when she wakes up tomorrow.
I did get to cuddle DD2 today for almost 2 hours. I got very upset and broke down and the wonderful nurses got her out of her cot (no small task given that she is attached to a million tubes and wires) so that I could sit holding her. It was a very precious moment and did make me feel a lot better. I hope that she could feel and hear me and know that I'm there rooting for her. I felt so close to DD when we were in hospital in the days leading up to the op, like it was just me and her against the world IYSWIM as we were sharing every minute of each day and she ended up sleeping with me most nights so I could settle her. I just have to believe that she can hear me and knows that I'm nearby most of the time.
Thanks everyone for sharing your experiences and offering your support. I know that some of you have been exactly where I am now.
Riven - I know you've been there more times than anyone should ever have to. Of course no one should ever have to at all. Thank you for your kindness and solidarity.

hi there !... im a twin mum 2. just to let u no that ive bn there nt so lng ago. my ds had same symptoms and more,had to stay in hosp wth him while he had his op for floppy larnyx and breathing probs. its the hardest thing i had 2 do but had no choice! i hope u and ure little family r ok. can i jst say that most flop larn, mend on thr own without intervention so not 2 wori.... my younger twin stayd at home but visited everyday with his dad which worked out better in the end although i missed him dreadfully!! im stil dealing with on going problems and attending hospitals ev mth. you just have to stay focused and relax which is easy to say but things wil get easier. hugs & thoughts xx.

Thinking of you and the dds, Twinmum.

Hope today has been a better day for you

Another well wisher here; hope you have your DD home soon and both of them running around keeping you busy.

What a terrible experience for you all It sounds like you are doing all the right things though. Your dd2 needs you with her and your dd1 will be ok surrounded as she is by love.

Wishing you all the luck in the world. I remember that too missing my little son cos he was unconcious .The same with your DD. You cant hold her or hug her... and you miss her smiles and interaction with you and her family. It will soon be over this horrible ICU bit... fingers corssed for you. Keep us posted here. x

And yes, hugely unfair, on all of you.

Of course you are

I remember a nice doctor looking at me and saying 'its a bit like watching paint dry, waiting for them to get better, isn't it? She will, though' and that helped hugely. As soon as she turns a corner, it'll go in leaps and bounds - this is a hard, hard bit.

dd1 sounds in very good hands, and in good shape too - I wouldn't worry too much about the impact, because life is full of impactful events (iyswim!) and the most important part is not so much them happening, as the support and love that helps us/them deal with it all. And your dd1 clearly has that in bucketfulls.

She will be missing her twin, and you, but she'll be reaping in loads of attention and time from Daddy and other relatives - so a mixed bag, for her!

Hang in there, the infection/swollen windpipe thing makes sense to me - non-medic though I am. xxx

Thanks so much everyone. We are no further forward at the mo which is very frustrating so have come home to spend more time with DD1 (who is very contentedly watching Cbeebies sitting on Dh's lap at the mo!) They were going to take DD2's tube out today but her windpipe is still too swollen so they will look again tomorrow and then if no change by Thur the ENT consultant will have to come and have a look. I'm trying not to think that far ahead and worry too much, just taking it day by day. I think it's just that the infection hasn't gone yet so it's all still inflamed. The thing that is hardest at the mo is that I just miss her so much. It has been nearly a week since she was 'with' us rather than unconscious and I just want to hold her and hear her voice or see her smile. I'm worried too about how DD1 is coping not just without me but without her twin. They have never been separated for more than a few hours before in their life and before this never overnight. The best thing is that neither of them will remember this (tho we will never forget!)

Thanks for all the advice. Am def doing the crying in the car thing but I am managing to not cry whenever I'm with either of the girls. Coming home is helping as it is that little bit more normal but then there is this huge gap where DD2 should be and I just feel hollow. I have been speaking more to DH about how I feel and we've discussed how much we're yearning for a return to normal life. I do feel quite grief-stricken and surprisingly angry at the moment, Elibean - that definitely made me think. It just seems so unfair which of course it is. It is very reassuring to hear of others who have been through this and returned to normality afterwards.

I will update as and when I can. Once she is awake I imagine I will be at the hospital constantly again which is why we are so fortunate to have family who are staying with DD1 and spoiling her rotten, people she is used to and loves so she still feels secure.

We will get there I am just so very desperate now for DD2 to be awake and in my arms

(((twinmam))) you poor love, its a nightmare situation to be in and I'm just glad you've spilt a bit somewhere. Holding it all together is too much to bear, even though you are having to bear it for most of the time.

I was in v similar situation for a week when dd2 was a month old, and dd1 was just 3 (it was her birthday, and Xmas, when dd2 went in to hospital). Reading your post brings it all back, and I can tell you honestly that you life WILL return to normal, and at the same time, that I have not forgotten what it felt like and it hurt for a long time - not least that feeling of being torn between my LOs. dd2 recovered fastest, and dd1 needed to talk about how she felt when dd2 and Mummy were 'in hospital' for some time - but is fine now.

dd2 has a floppy larynx, and ended up in HDU on CPAP for a week with bronchiolitis as a result - we've had ENT issues with her since, but never anything as scary, and she's very much a normal 2.5 yr old now.
Its utterly surreal, trying to go between the intensity of hospital life and attempting normality with your other LO for the brief periods you get home. Surreal and very, very exhausting.

Adrenalin does get you through, as does the kindness of strangers (our family were all away, it was just me and dh), until you can let go a bit...and IME, thats when the exhaustion and grief/anger kick in. Its the start of getting back to normal.

Meantime, the things that helped me: talking to others who'd been through similar and were through it; chocolate without guilt; the hospital's parents' room; shouting and crying in the car between hospital and home; reminding myself that there was NOTHING I could do to make it all better for my dds, except what I was doing, and that they would be ok and recover after the crisis had passed. And they are.

Will be thinking of you lots, let us know how she is, and how her sister is, and how you are especially, when you get a chance.

Most of all, wishing you little dd better and out of IC asap xxx

god you poor thing

and your poor dds

hopw she is improving now

take care of yourself

Oh twinmam How awful. Not been there thank god but you have all my sympathy. I'm glad you have a support network round you and the hospital is doing it's best. Fingers crossed for little DD.

dd2 was in hospital last year with beathing tubes up her nose and otherwires and things but no where near as bad as your dd.
Things that helped were DH coming with dd1 so I could see her, and spend some time as a family. Used to bring dinner too, so we could eat together.
Get others to do shopping, washing cleaning ect.
Dont worry too much about LO at home, you would be amazed how well they cope and she'll be fine. Look after yourself, eat well, and use the help you have.

Hope things are improving for you and your family.

Hugs

Been in a very similar situation with dd2 in and out of hospital over 18 months. The worst was when she was in PICU for 2 weeks at the Evalina childrens hosp I stayed there the entire time. She was 9 months old. DH would bring dd1 up to see us both when he could.

Everyone helps out and don't be afraid to ask for help. DH was a rock as were our friends and family who helped look after dd1.

Don't forget to look after yourself.

big hugs from me. We do the intenstive care thing waaaaaaaaaaay too often. Its hard when you have other kids cos you feel torn.
Just try and take care of yourself and if anyone offers help, take it!

wanted to add hope dd gets better soon

Just to echo it is completely normal to feel that you can't leave your dd or something will go wrong! (or at least it was for me and the lady in the next room when our dcs were in hospital) was an illogical belief that was very difficult to shake and very exhausting to live with since we were talking about hourly blood tests!

It was my PFB in hospital so I can't really advise about your oldest except to say my tendency would be to concentrate on the child in hospital but if possible can your oldest come up to the hospital sometimes so you can go to the local swings or Macdonalds/hospital canteen sometimes (nutritional value of food is not important in these circs and you can always bring her something from home)

How is you little DD in hospital today ??? Best wishes XX

How is your dd doing today? And how are you?

Wow - just jumped back on here and overwhelmed by the messages of support and such kindness. Very un-mumsnetty indeed It really is helping me. Thank you. Am now going to go and stop DD1 putting herself in hospital as she is showing off for mummy! Thanks everyone.

I have been in your position and it is hard. I was lucky when we got transfered they allowed DC1 (well one) to visit and let me play with him in the wards play room - if I was needed in with my dd the play specialist would look after him - never fazed him the condition his dd was in (think he felt reassured at seeing her) we have always been honest with him (even if have simplified it).

I also know how hard it is to hold your baby down while they do bloods etc. My dd has been having bloods done on a regluar baisis since she was 10months now 2.9. No mum wants to put there dc through unpleasent things just try to stay strong and cry when on own.

As others have said and i know you dont want to eat but do - your dc needs you to be mentally/phsyically strong.

Sending you a big hugx

GOS = Great Ormond Street -- for those in the know

Same here... my DS had a breathing tube in his throat, that was the size of a Neo-Natals.

I know exactly what you are going throu'.. My DS at the same age was in intensive care with a breathing tube in his airway. He was 14 months and diagnosed with severe subglottic stenosis. Basically a very narrow airway. His was sedated the same for 5 days but after all treatment they couldnt take out the tube without performing a Tracheotomy to create an artificial airway. He was in hospital for 6 weeks and i had 2 older kids back at home at school to care for. Daytime with little DS then back home at night for big kids. He then (7 months later) went to G.O.S. for tracheal reconstruction. He is 8 now and very well. Hy heart goes out to you and i am trying not to cry cos reading you post just brings it all back to me. The doctors are very good as you know and will take good care of her for you. Although its so hard for DD right now with all the hospitalisation she will forget it all in time. My DS cannt remember any of it. But my heart ached after they had put the Trachy in his throat as he had no voice . I wish you all the luck in the world... and hope you little DD is ok. Its very worrying and you cant eat, sleep or think straight. Keep us all posted and stay strong. You are going through HELL , just keep going till you come out the other side. The staff know what they are doing and have seen it all b4. Just give your DD (as you will) lots of love when she comes round. They hallucinate a bit when coming round but its soon over and she will be awake. Your other DD will be fine with family back up and so forth. HUgs Hugs XX

Hi Twinmam,

Yes I have had similar problems (although my DD1 is five years older than DD2). DD2 was in PICU for six weeks after birth and has since spent a lot of time in and out of hospital. One of her problems is a floppy windpipe like your DD and she also has malformed tubes in her lungs so finds it hard to shift infections. However, my DD's health has improved enormously with age and the right meds and I hope that your DD's will too.

I am so sorry that you are going through this. My DD2 stayed at home with my DH and that was very hard. Is there any family accomodation available at the hospital? My DD1 came to stay most weekends with me with DH and that really helped us to keep some normality going. Ask the staff to point you in the right direction as there may be a Ronald MCDonald or Sick Children's Trust home on site.

I hope that your DD recovers soon.

Lots of love.

Oh god, how awful for you. You must feel like you've been running uphill for days now. And your post made me sob - DS is the same age and I can't imagine having to go through all that.

UnMN-y hugs and I really hope she comes home soon. She won't remember any of this, and neither will DD1, thankfully.

Just a note to wish you well, like others your OP made me cry.

It sounds like you and your family are managing everything really well but it must be so hard for you all.

Will be thinking of you x

Just wishing you and your DD the very best twinmam I hope she is back home very soon.

OMG poor you as everyone else has said make sure you keep eating it easy to forget when sitting in the hospital, and you need your strength

Hope your dd gets well soon, and sounds harsh but try not to worry too much about your other dd as she will be getting loads of attention

Goodness, what an ordeal for all of you.

Really hope that your DD2 gets better soon and that you are all home together safe and well.

Look after yourself and trust that your Dh and relatives are looking after your DD1.
Your poor DD2, she has been through the mill, hasn't she?

Like ilovemydogandmrobama, your OP has made me cry, because I can feel from your words how helpless and torn you must be feeling, and I have never had to spend more than a day in casualty with my two boys.

Take care x

I can empathise with having to hand over your child to the hospital but I would usually be at home while DH was at hospital as invariably was breast feeding a baby so had to be at home with the baby.

Make sure you keep up your fluids and try and eat.

Don't try and do to much with your DD at home. She just wants mum there.

I hope you are all back together very soon.

Nothing sensible to add. Just wanted to send you lots of best wishes and hugs.

Big hugs! i've been through a similar situation several times before with both ds & dd - both dc have been in critical condition several times with various ailments and it's the absolute worst stress a mum can go through. Try to get as much rest as you can & recruit dh, all rels, all friends, neighbors, etc to allow you to do so. Sleep/rest/quiet at this time is more important than food whenever you can grab it. Do NOT give in to guilt - it drains you & helps no-one! Thinking of you xxx

Oh Twinmam, you must be exhausted! Your well child is surrounded by family and well cared for - do not torture yourself! I hope the news will be good soon and you all well and home.
Remember to look after yourself well both now and once home (hospital stays with sick dc always leave me exhausted and rundown). Will be thinking of you all. (hugs)

re read post - sorry - i think it is the replacement things - tapes, postcards, etc special book and just take every single bit of help you can get.
i was in hosp for 3 months as a young child and my parents had 3 other young ones. it tore her heart rushing between us all and she had no local help. i never realsied how hard it must have been until i had my kids - but she made each of us feel special as i am sure you are doing too.

oh poor you (all of you). yes similar and the adrenaline does keep you going. can the dh help out? can any relatives/good friends help out? Everbody will be desparate for something they can do, you know. what about granny or someone being with little one in hosp for a night and you getting home and doing bedtime as normal for the tiny one?

there may be a good neighbour scheme where you live who can help out with practical stuff like shopping cleaning

what about a webcam? what about a series of postcards from you to be read out to little one? what about recording a staory tape for bedtimes (for either one)?

i'll try to think of other things
but dont forget to eat and drink and try to get some down time for yourself - our hosp is opposite ahuge sainsburys and i would walk to the cafe for abreak...

no advice with regards to the ICU, but I have had to juggle very poorly children in hospital and the others at home, and the transfer of hospitals, and the being away from the 'well' ones (well in health, not quite so in emotion with missing me/their sibling).

tis so hard, but talking about it can help, even if just on here while you stay strong in RL.

I always found the adreniline kept me going until they got home and then I would semi-collapse as it all caught up with me..........talking and admitting it is hard might aleviate some of that for you.

I hope she starts responding soon....much sympathy.

Your post made me cry

Not as serious as your DD, but understand trying to keep it together.

Just concentrate on your ill DD. Let other people help. Let them take care of DD1 and with logistics, such as taking you back and forth to hospital, getting you meals, bringing you things, so you can be there for your DD2.

You return to normal life once your DD is better and discharged. In the meantime, you live on Planet Hospital.

Hope all goes well for your dd. It sounds so difficult, will say a small prayer for you all.

Oh sweetheart what a nightmare

Sending love and strength

Advice - well I've not been in your exact sitaution but:

Be careful to eat regularly, keep your strength up

Try to sleep, difficult I know

Accept that your 'well' DD will have to come second at the moment

Also ask for help at home, washing/ironing/filling the freezer

Good luck

huge hugs to you. Hang in there. I really feel for you x

I am grabbing 5 mins whilst my DD1 is asleep. Am home from hospital for the first time in days to spend some time with her. Basically what happened is this: DD2 has had a cough I've been concerned about since Jan, mostly at night. Have been to GP several times & virtually been accused of being a fussy mother, nothing to worry about etc. A week ago on Sat she developed a very croupy cough, barking etc and by the evening her breath sounded very heavy. I rang the out of hours dr and we ended up being taken into hosp where she was given steroids for what they thought was croup. She was given 6 doses of 3 diff types of steroids but her breathing didn't improve. They transferred us to another hospital on Tues where there are ENT paediatric specialists. On Wed night she was struggling so much with her breathing they transferred her to intensive care. On Thurs they took her into theatre to do an endoscopy. They were reluctant to as they knew her windpipe was very swollen but decided they would need to put a breathing tube in etc. They found a severe infection but nothing else as it was all too red and swollen. They are thinking she may have an underlying structural weakness, possibly a floppy larynx which has meant the chest infection was so dangerous. They were going to bring her round from sedation today (she has been under since Thurs) but windpipe is too swollen still so too risky so they will review tomorrow. They are using the size of breathing tube they would normally use on a newborn (she is 16 months old) and it is still really tight. Hopefully the antibiotics will really kick in and she can be woken up and have the tube removed tomorrow. They will then do a barium swallow and possibly another endoscopy or look further down at a later date. I feel a bit as if my head is spinning. Just over a week ago we were living a normal life and I was complaining about what hard work it is to look after two babies. In the last week I have held my daughter down whilst they have tormented her, taking blood, repeated cannulas, nebulisers that have terrified her.... Handing her over to the anaethetist on Thurs was the hardest thing I have ever done. I literally felt as if someone was ripping my insides out. And we have our other DD at home. DH is sleeping at home and I am at hosp so we can try and give her some sense of normality. My parents are looking after her and DH's parents have flown back from abroad to help. We are lucky that we have a big support network and that the paediatric staff are wonderful. The consultant even hugged me on Thurs when I was a mess and the surgical team were promising me they would look after her. The anaethetist told me had 3 Dcs of his own and he would take good care of her. They were true to their word because she is still here and I am eternally grateful. I feel so torn though. I feel as if by leaving the hospital something could happen but then I feel guilty for not spending time with DD1 who has been saying 'Mama mama' for the last few days and even kissing a picture of me It has all been so frightening and surreal and I am just longing for an ordinary life. Not really sure why I'm spilling my guts on here other than that in RL I am feeling the need to stay really really strong and positive as that's the only way I'm holding it together. Has anyone else had a similar exp and returned to normal life? How did you cope? What is the best way to get through this nightmare? Thanks