D'y ever wonder if Shabs will put Lewis down?!!!!

[TiggerLicious]

Yes!!!! Touch down!!!!

Victory dance!!! I've made it!!!!

not selfish just worried and obviously got mountains of love for your children xx

Going to collect tom back in a little while xx

Hi Lydle (sorry ,I don't think I said hello before ).

Sorry to hear what you're going through with your dd. We had to make a similar decision with dd4. She was born with a congenital heart defect (I hate that word ). During her first year she spent most of the time in hospital and kept going in and out of PICU. She kept having "episodes"-even now the doctors aren't 100% sure what caused them. After the last one they told us that things were serious,she wouldn't recover and if she did these episodes would keep recurring. After long discussions we agreed on a DNR. Thankfully she has proved the medics wrong and we have now reversed the decision .
All I can say is have you had a formal meeting with the doctors about this or has it been mentioned "in passing". When we had our talk,as well as the PICU doctors,we had a cardiac liaison nurse and the nurse looking after dd4 that day. It helped because they could take it in better and explain if we didn't quite understand anything,also when you're in that situation it's difficult to think straight too.

I hope that makes sense & is some help.

Ruby!!!!

Soooooooooo my style!!! Ye haa baby!!!

Lydle,gosh thats a very hard question and probably only one that you can answer seperately in relation to each individual.

I have know parents that fight right to the bitter end and parents that decide when the time is right to let go,each decision is heartbreaking in itself and I really don't believe that there is a right or wrong,its just how you have to cope at the time.

Selfishly I would of course like my children to be with me for as long as possible, but then I also know to look into thier little eyes and see such pain would be unbearable and I would never truly know the answer until I was in that position.

Do you feel like you are being pushed Lydle?

Hi snorris, thanks for your reply.

Its quite strange really, the docs, clic nurses from my local hospital all went to a big meeting last Thursday and saw Neuro surgeon and her original consultant, they both said hers is a plumbing problem, not the tumour at this point, but that if they were to operate the would cause more problems than the loss of hand/arm function, they were doing a talk on such cases and my doc, said were using my dd2's case (only she knew that as she recognised the scans) and others saying these cysts are common with these tumours, so i said well what hapens when they cant control them with draining and she said they die.
Anyway i think, they must have said to her have you asked mum if she would want her to be resusitated, which is why she asked me today. So it wasnt formal, but she also asked me to sign a consent form today for the drain, which i have never done before, to cover her back i think ???

Hi Tigger,
no not pushed, she asked a valid question, what would you like me to do if this should happen as there wont be time to discuss in an emergency, i just wasnt expecting it at all and had never given it any thought.

When i do give it thought i just get upset and cant think rationally about it

The hardest question to answer Lydle, as you know my darling healthy son collapsed and died 14 years ago, we have no medical explanation. It turns you inside out, makes you raw with pain, you never ever go back to being the same person again, that is the death of your child. But..........he didn`t suffer, I know that, so how a parent urvives watching their child suffer I truly do not know. I only pray that you never are in that postion, its scary, I can only think that you would instinctivley make the right decision at the right time. Does that make any sense? I admire you courage and strength xx

Welcome home Harrogatemum............good to have you back, its been abit lively on here since you`ve been gone! Did you know that somewhere up north a babe was born?

Lydle, thats hard. Every child/parent/situation is different........

Personally, I would fight to the death to hold my children and keep them safe and well. I would rather cut my legs off with no anaesthetic rather than have them in pain or in danger. And, I imagine I would not want them to be resusitated if it meant that their quality of life was extremely poor.

I say that because a friend of my mum has a child in her mid twenties, with a severe condition. She has never even been aware who her parents are. She has spent her life staring into the unknown and having dribbles wiped off her chin. Her mum devoted years and years caring for her (and two brothers). Eventually, and after much,much, heartache, her little girl (who became a woman and so much harder to physically care for) went into a very good care home quite far out of Edinburgh. The mum still feels hideously guilty but no-one can blame her. She has a broken marriage, two sons, a job to hold down and it became impossible. She is still horribly tormented by what will happen to her little girl when she dies. Will her sons feel a horrid guilt to take care of her? Will anyone visit?

I personally would rather know that, if my child would have zero life quality, I could hold her and stroke her and be with her for as peaceful and loving a goodbye as I could.

But, everyone is different and no-one is wrong.

Welcome back HM!

Hullo everyone else

Back later with wine and fish fingers I think. DP will be on a late train home. That equals jamas, fish fingers, glass of wine and MN in bed I think.........

Lydle - NOSEY PIG ALERT. NOSEY PIG ALERT Can I ask you some questions?

How many children have you got? Where do you live (not the full address Im not quite that nosey!)

I've chickened out of asking you anything else

If you dont want to answer me tell me to sod off go away!!

xxxxxxxx

Hiya Frumpster - Hiya Trips.

Hullo hen How's your arse for lovebites?

Hiya

Thanks everyone for your messages

Shabster ask away, ask away i will tell all (well almost)

I have three children, Sophie 11, Renee 8 almost 9 (poorly one) and Madeline rose 18 months,

Sophie and Renee are from my EXP, who is a complete and utter ahole, (thats the nicest word i can think off to describe him) Maddie is from my DP, who is lovely, and we are getting married on 4th Oct this year.

I was also pregnant before Maddie but at 16 weeks had a scan and the baby had a form of spina bifida but not the spine, the type where the skull had not formed at all so would not survive birth so had to be terminated.

I also have a large hairy, yetty style dog a giant schnauzer ( black one, won crufts this year if you werent sure) mine is pepper and salt (grey) called Millie, who is very naughty, but loveable !!

I live in North Wiltshire, do we say exactly where ?? not sure of protocol on these things, just off J17 of M4

I think that covers it any more questions ask away . . . .

I was interested to know your opinion on my other post as you have lost children, if you dont mind my asking ?

lydle - its one of those questions that you can't answer unless you are faced with it (I think) but I hope that we would find the strength to let go and let them be at peace.

I am not staying that it what I would do it just seems the right thing to do, I would probably fight the battle all the way, make it worse on myself and the other children and my dh while knowing I wasn't helping the situation.

Sorry I have just rambled and I hope I haven't offended anyone

why are some people on other threads, and in life in general, so competitive? It never fails to amaze me how competitive people can be with each other and I do not understand it.

I have been periodically chatting with someone on another thread, very, very unimportant stuff. I continuously offer warmth and laughs and empathy and, in return, I get competitive. I don't compete. I wouldn't know why I should. Sorry for rambling its just, frankly, rude.

Oooogs, you wouldn't offend! Not a bit. Now, how the hell are you? I can't believe I missed about your pg How exciting!!

You havent offended me, that is what i said at first today, yes you must save her no matter what, because i panicked, now i'm just thinking about it, i think i have decided to ring the secretary of neurosurgeon and old consultant an go and see them and ask them what they said at the meeting and their opinions of the situation.

Absolutely, there is no right and no wrong. I guess the more info you have the better. Its amazing really, that you are having to think of this sort of thing whilst most of us are deciding which sort of bread to buy xxxxxx.

I know what you are saying fg, but then i also have to think about which bread to buy !! i really doing normal things it keeps me (slightly) sane !!

Plus their a lot of peeps on this thread that have to do some quite amazing things, actually scrap that we all are by raising children and you lot two at one time !!! that amazes me !!!! xx

Welcome Lydle

It has taken me an age to catch up!!!

Lydle i ams o sorry to hear about your dd. I had to sign DNR when i had the twins, they were 3 months early and very poorly. It was incredibly hard and i remember being wracked with guilt. I was quite specific though, i wanted assurances that if there was even a glimmer they were to carry on and do everything possible. Luckily for me it never came to it. I cant imagine being where you are now.

You sound so together and calm, the children have a fantastic mummy

Ooogs how are you feeling?

Snorris pmsl at you finally telling your parents Moors Valley is calling us ya know. The weather is lovely. DH is home for 10 days on Friday but then gone again for 6 weeks, we must do something one weekend. It is the weekends that are the worst when he is away.

FG how are you know? What was up before? My house is a mess and i feel so rubbish i cant do anything. I need a cleaner, the bathrooms are killing me. I woder if dh will let me get one. I ampretty sure i will be cleaning before they arrive nutter that i am.

thanks for the welcome home everyone! Trips, d'ya know I knew a babe had been born up north when I arrived home and the street was covered in banners and streamers and balloons all bearing the legend "welcome Lewis"......we dont do things by halves up here y'know

Lydle - I dont have words to answer your question. I do not know what I would do in your situation, I can only send you lots of love and strength to make your decision. You are amongst many people here who have been through some real heartbreak - I am like FG, so far in my life it has pretty much been about what bread (or wine in my case) to buy and I cannot imagine what some have been through. (PS I have an 18 month old Maddy too!)

Well DH has gone out for a curry despite me getting food in - he has missed his fix! Despite my intentions after a booze and red meat fuelled 3 weeks, I am drinking a large G&T - some things never change!!