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Subject Topic: Big day, tomorrow....
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06/4/2016 at 3:29pm
 Location: Derby.
 Outfit: Karsten 350+Awnings
View Mucker1884's Profile View Profile   Reply to Mucker1884 Reply   Quote Mucker1884 Quote  
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Back in November, Muckerette and myself were presented with the wonderful news that our daughter was to gift us with our fifth grandchild. Due in the Spring. Just as the flowers begin to blossom. Just as the grey clouds turn to a nice fluffy, brilliant white. Just as the sun doffs it’s very own cap, as if to welcome our new addition personally. How beautifully poetic!

...“A few complications, but nothing major” was the initial, tentative message. As daughter is in her 30’s, there were more tests/scans to come, but all par for the course, it seemed, so the beginnings of celebration quietly got under way.

Fast forward two more weeks, to the 1st December, and the next scan (around 19 weeks gone) revealed something a tad more serious. A further 48 hours on, following a more intrusive and concise test, and tellingly the unequivocal results, confirming something that wouldn't even come under the heading of “A parent’s worst nightmare”! Something that none of us had even heard of before, if truth be told. Something so unfair... nay, so evil, so wanton... that it tore right through the heart and soul of this otherwise blessed and fortuitous family of ours. Something nobody on Earth would surely wish upon their most vehement enemy, but was now being thrust upon the most fragile, innocent, and undeserving victim imaginable... an unborn baby!

The list of negatives were not only countless in their number, but, even if listed individually, would bring the world’s most heartless and sadistic monster to its knees... but this list was combined, as one humongous, grotesque, and truly sickening savage beast ... Physical and mental... inside and out... visible and invisible... Flesh, bone, and organs! A combination so powerful, that it cannot be countered. Cannot be mastered. Cannot be beaten. Cannot even be alleviated.
A combination of problems each as stomach churning as the next.   So much so, I wouldn't even begin to list them here. None of you deserve to read such an abominable and abhorrent list... not that I could bring myself to type them anyway!
There is no cure. No hope. But maybe a little time... if we get a miracle!

My initial web-searching of this condition, back at the onset of winter, kept bringing up the same nauseating phrase, time after time, page after page... “Incompatible with life”.
You read that right... Our granddaughter was being labelled “INCOMPATIBLE WITH LIFE”!!   
...Until I first read that, a few long months ago now, I honestly thought it was only sticks and stones that could cause pain!

It appears that “Edwards’ Syndrome” is just about as cruel and hopeless as it gets. It may hide behind the less threatening title of “Trisomy 18”, or the almost cute sounding “T18”, but call it what you will, truthfully, this bastard of a condition leaves you cold to the core.
Offering maybe the most minute speck of hope in its “mosaic” (partial) form, the number of surviving “Edwards’ Adults” can seemingly be counted on one hand!
Full Edwards Syndrome however, as we were being informed was what was facing our dear unborn granddaughter, offered nothing, it seemed. Absolutely sweet FA!


Initially, the plan was to have all proceedings at QMC (Nottingham), as they apparently are better equipped, with better facilities, but as it became apparent that we were looking at Full Edwards’ Syndrome, and that there is unlikely to be any attempt at any true treatment, operation(s), or even resuscitation, (The harsh facts of being “Incompatible with life”, it seems!!), all has remained here at our local Derby Royal Hospital. And I have to say, at this stage, from related stories, and indeed from the little I have witnessed at first hand myself, the medical staff have been truly magnificent, as ever.
...I say “magnificent”, but of course, in reality, there is little to nothing they can actually do. Of course, should she ultimately honour us with her presence, they've promised to at least try to keep her comfortable. Try to keep the pain at bay. And even try to “feed” her, of sorts, if she’ll allow them, that is!
But ultimately, even the experts can do little more than cross their fingers, as they stand beside us.
I guess this sort of thing can’t be easy for them either, when their whole life is geared to helping, caring, and treating, yet realising there is undoubted failure around the corner.
My heart is with them, as well as my family.


From those very early days, we were made fully aware of the stats... and they were grim to say the least!
First off, “the majority” (I've no idea whether that means 51%, 99%, or whatever point 'twixt the two?) don’t even get a sniff at reaching full term. Not a hint of life, or a single breath of air!
Even from this advanced point we now find ourselves at, just 3 weeks short of full term, “the majority” still fail to reach the finish line. Still fail to be born alive.
Fact is, right here, right now, she has already won round one, as she’s still kicking, still fighting... and that in itself, is against the odds!
Some would see even reaching this stage as a victory, but truth is, should she become our very own miracle baby, the stats continue to batter her down...
Of the minority... those that do battle successfully to a live birth... the figures get no more generous... And no less daunting... “1% reach their 10th birthday”. “Only 8% celebrate their first birthday”. The rest are scattered somewhere between “a few months” and “an hour or so”! “Average life expectancy for those “Edwards’ babies” that are born alive... 4 to 14 days”!!!
A major miracle is needed just to even get a sniff at actually holding her alive, it seems.


...Around the middle of January, I saw her, for the first time, with my own eye’s... albeit only on the scanner screen, of course. (The scans have been regular and often, and a number of relatives have been invited along at separate occasions, due to the less than positive circumstances.)
She was far from pretty, as one would expect, and yet she appeared to be the most beautiful thing I have ever clapped eyes on!

More recently, we have received more up to date pics and vids from daughter, from the latest scans. Much less tadpole-like now, of course, being that much further down the line. Dare I say, she’s been looking more like “one of us” of late, with clear, recognisable features... albeit some being far from perfectly formed.

The plan, of course, right from the beginning, was to “not build our hopes up”... But as we now creep tentatively into the final straight, I cannot deny, perhaps foolishly, our hopes grow... along with our fears, of course. It is fair to say, things are now getting somewhat nervy and emotional chez Mucker!    As Muckerette and myself hold hands and hug, we slowly but surely pass on our own strength to each other... but in doing so, we rapidly weaken our own minds and bodies in the process, of course! That alone, seems to be fast becoming a losing battle of our own!

As recent days have passed, our hopes told us we were one day nearer to holding our new granddaughter, but our fears told us we are one day nearer to personal heartache. And whilst the heartache is of course guaranteed, the timing isn't.

...Which brings us to now, and the latest update...

Yesterday, just those 3 short weeks to full term, the latest scan was undertaken, and after many downs, and a few ups, since November, the medical team are now advising action. There seems little to no improvement in her development over the past week, and they fear that she may not survive another 3 weeks in the womb. There was talk of “If you want to stand any chance of meeting her, we’d better be quick!”
So the battle plans are being put in place, and inducement is to begin tomorrow at noon.

Evidently, the true and precise outcome, as we stand right here, right now, still remains a complete and utter unknown. Unfathomable even.
But it appears she now faces her last... and only... chance of life!


Personally, my own hopes are for just enough time... Enough time to touch her. Enough time to stroke her. Perhaps even enough time to gently caress and massage her weary, fragile frame, soothing her pain, easing her breathlessness, calming her very own fears within, of what is to come.

Enough time to instil within her the true meaning of love, adoration, and endearment. Enough time to form at least an inkling of a bond. Enough time to convince her just what a delightful and cherished addition to the family she truly is. Enough time to see a hint of a smile. Enough time for her to make eye contact, and see the pride in these rapidly greying eyes of mine.

Most of all, and somewhat selfishly, I pray for enough time to drop to my knees, and beseech her forgiveness. To admit to her my own failings, on this particular occasion at least. My failings, as her granddad, to protect her from the unimaginable and immeasurable pain and torment she is probably suffering right now, within the womb, but almost certainly will be, sometime soon... should she emerge alive, of course!

If indeed there is a God, then I beseech thee Oh Lord... give us that time.
If it must be merely one hour, then one hour I will accept... with grace and gratitude!
With the cruel cards already dealt and laid before us, I simply dare not wish for more!

It’s been a long, slow winter, that’s for sure, but if ever a reminder was needed, to convince me just how precious time is, this particular thunderbolt through the heart is most certainly it!
But for now, it appears, time is what we won’t have. Time, it seems, is the enemy. Time, it is feared, will be the victor, one way or another.
“Time is precious” they say... Oh, how painfully true that seems, right now!

Desperate times call for desperate measures, so with that, I promise to attempt to keep you good people updated, just as long as you promise to keep your fingers crossed for us... It seems we need all the help we can get, if we are to get any chance of even a few hours in the company of our beloved new beautiful, brave, battle-weary granddaughter.



Keep fighting, Sweetheart... you’re almost there!
XXX


-------------
2024: Late start... bear with us!
2023: 47 nights
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From July 2012: 23 nights


06/4/2016 at 3:58pm
 Location: Bolton Lancs
 Outfit: Tent & Toyota Granvia
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Your post is truly heartbreaking Mucker, I really don't know what to say; I can hardly see to type through my tears for you and your family. Keeping everything crossed that you get to meet and hold your darling little granddaughter, if only for a short time. Sending hugs and prayers for you all to have the strength to get through this

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Tigermouse


I have a very temperamental personality - 50% temper and 50% mental


06/4/2016 at 4:10pm
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I have just read up on Edward's syndrome. It is so mind bendingly awful that it is difficult to know what to say.

At least you have the comfort of your faith. Hang on in there.


06/4/2016 at 4:39pm
 Location: West Yorkshire
 Outfit: 2002 Compass Omega 482
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Although I don't know you, I feel as if I do through reading your posts. Having had a disabled child with a life limiting condition myself, I understand a little of what you are going through. All I can say is make the most of the time you have with your grand-daughter and save your tears for when she is no longer around, whenever that may be. You need to have happy memories of her time with you to help you through the hard times. Hugs to you all.

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Loved my tent but love my caravan more :)


06/4/2016 at 5:50pm
 Location: east midlands
 Outfit: swift 530
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Wishing you the most beautiful time with your Grandchild. I'm so sorry things are so heart breaking, I wish it wasn't the case.

Get lots of pictures and if possible hand and foot prints to remind you of the time you share.

Thinking of you all xxx


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06/4/2016 at 5:54pm
 Location: Derbyshire
 Outfit: ElddisAvante462 Honda CRV SE2.2 i-Dtec
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My hope and prayers are with you and your family Mucker at this sad and very trying time. You are in the right place at the Derby Royal, the staff are marvelous, both with the physical care, but also the emotional care of all the family members and friends concerned.

My eldest daughter gave birth to a still born baby boy who she named Liam on the Royal Derby Maternity unit just over 10years ago. The care and kindness, proffesional support, and options offered by staff were amazing. She was given the option to treat him like any other newborn and bring him home for a few days if she wished. Friends and family were encouraged to visit mum and baby in a private room, where he lay in a moses basket, and could be picked up and cuddled by anyone who wanted to. These few days were precious and many lasting memories were made, photos taken, and final goodbyes said, the care we all received was amazing, as was the support we recieved in the long term from the national charity Sands, the stillbirth and neonatal death people.

I know what a horrible time this must be for you, but make every second with your new grandaughter count. Take plenty of pictures, cuddle her, sing to her, she will know your voice from being in the womb, and will feel comforted by knowing that she is truely loved, even if her life is very short indeed.

Big hugs to you and your family, if there is anything that l can do to help then please let me know, im just up the road from the Derby Royal and know the place well, all 12 of my grandchildren were born there, as was l and 3 of my 5 daughters when it was the old Derby City Hospital.

Julia

-------------
Just love to be out amoungst Nature and Wildlife

Celebrating 37 years of Caravanning in 2019, Recently Considered Retiring, but Totally Addicted for Life!


06/4/2016 at 6:36pm
 Location: Ross-on-Wye
 Outfit: Palamos 6
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We're sorry to hear about what you are all having to deal with. There is no good luck; but we sincerely wish you get what you hope for.


06/4/2016 at 6:38pm
 Location: East Sussex
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Oh Mucker, what a heartrending post! I take my hat off to you for finding something positive in this.

Thoughts and hugs to you and all the family.


06/4/2016 at 7:09pm
 Location: Lancashire
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Such a beautiful yet heart rending post Mucker.My thoughts and prayers are with your cherished granddaughter, her parents, you and all your family.


06/4/2016 at 7:36pm
 Location: stoke on trent
 Outfit: Bailey 75-2
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Mucker mate our hearts and prayers are with you and muckerette and the whole of mucker family especially the little one
Truly heartbreaking it really does bring home how precious life is and we should all grasp it with both hands and live it to the maximum
Again pal will be thinking of you all over the next few days
Stay strong for each other
Paul and Kate

-------------
April Peak District Beech Croft Farm
May Peak District Duke of York
May Holland Delfse Hout
June Cotton Arms Nantwich
july/aug Cornwall Pentewan Sands
And quite a few local weekenders


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06/4/2016 at 7:36pm
 Location: County Kildare Ireland EU.
 Outfit: Tents
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Your granddaughter, your family and yourself will be in my thoughts prayers tomorrow Mucker


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Hypercamp Alaska
Vango Force 10 mk3
Vango F10 Helium 1
Coleman Cobra Pro 3
Coleman Cobra 2
Naturehike Star River 2
Eureka! Solitaire
Dutch army goretex bivvy bag


06/4/2016 at 7:58pm
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Mate, can't begin to imagine what this must be like. It's a very special thing to be a strong Dad for Mum, too. I would hope I could do it, but truthfully, I don't know...

Fingers crossed for some precious time for you all tomorrow.

-------------
Mike

My advice is worth no more than the price paid for it

Prague May/Jun 2017
Lake Annecy Aug 2017


06/4/2016 at 8:08pm
 Location: None Entered
 Outfit: VW T5 Camper Van. 3 metre bell tent
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Wishing you and your family all the best in the time to come. I hope you all find strength and comfort in one another in the time to come.


06/4/2016 at 8:27pm
 Location: Sheffield or my happy place
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Your post is heartbreaking. You know one thing your Granddaughter is loved so very much. I will be thinking of you xxxx


06/4/2016 at 8:31pm
 Location: North Kent
 Outfit: Vango Da Vinci 500
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I will be spending tomorrow thinking about you, your family and that special little girl.


06/4/2016 at 8:37pm
 Location: Glasgow
 Outfit: Vango Mira 500. Higear Aura 300.
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I felt everything you wrote. Nothing can make your load any lighter. I wish you time, I've no other words X



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