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A thread for Beatrice: Because a life filled with love is a life worth living.

958 replies

cupofteaplease · 03/10/2011 15:18

We are back from the hospital, Beatrice has been fed and dh has gone to work. So I have time to sit down and start the first post about the journey ahead, which I hope will be a long and happy one.

Beatrice was born at 36 weeks weighing 3lb 14oz. After an initial diagnosis of Edward's Syndrome was proved to be incorrect, an MRI and genetics tests were carried out and today we have some initial answers.

Beatrice's brain is very small and underdeveloped. The consultant described it as 'simple', because it does not have all of the detail expected in a typical brain. She explained that we should expect Beatrice to be severly disabled. She is also very small and delicate, and at risk of catching infections. They anticipate that she may suffer from fits. They have told us to watch out for her breathing during feeding, as her muscles are weak. They also commented on her shallow breathing pattern. They believe the problem was caused by a gene that both dh and I must carry, but they haven't got the answers yet and admit that they may never know. They have ultimately described her condition as life-limiting.

However, we have left the consultation feeling at peace. We don't know what the future holds, but realistically, neither do the doctors. We have great faith in Beatrice, she amazes us every day, and she is surrounded by so much love from us and her wider family.

I would like to use this thread as a space to jot down how she is doing, and how we as a family are coping with life. If anyone wants to check in and follow her progress, please do. We couldn't have got through the past 2 weeks without MN. Smile

OP posts:
jugglingwiththreeshoes · 03/10/2011 18:02

Hooray for Beatrice Primrose's new thread !
Hooray for being home !
And hooray for her Mum !

Scheherezade · 03/10/2011 18:03

Hi cupoftea, I have been following you from the October baby bus, and only just managed to catch up with your story.

Beatrice is a very lucky little girl to have such loving parents, I'm so sorry, but pleased for you now that you have "answers" of a sort that you can create your own family life.

You are doing exceptionally well, your story is so inspiring. Lots of unmumsnetty love xxx

Northernlurker · 03/10/2011 18:04

Great to read your update. Smile

ExitPursuedByaBear · 03/10/2011 18:08

Thank you so much for taking the time to update us. I have been checking all day for a new thread as only those with iphones could post on your other thread Envy.

I am sure that Beatrice will continue to suprise everyone, and flourish in the love and care of her family.

HalfTermHero · 03/10/2011 18:18

I am so pleased to read that you left the hospital feeling full of hope. Whilst no one knows with any true clarity what the future holds for your little girl it is absolutely certain that she will be loved, adored and that she will bring you much happiness. Today's news is fabulous compared to the diagnosis and outlook you were given in the hours following her birth. I am so glad that Bea is going to remain with you. She really is the most beautiful little thing. If good wishes, prayers and hope count for anything then tiny Bea has such positivity and support behind her. I'll continue reading of her progress. Congratulations once again on your gorgeous little girl xx

mycatsaysach · 03/10/2011 18:21

thanks for the update - glad to hear the positive stories on here

giver her a gentle cuddle from all of us x

lisad123 · 03/10/2011 18:22

Welcome to the SN board, we are a good bunch, I promise. Im glad to hear Bea is doing ok right now and that maybe the doctors are wrong and you will have plenty of time with her.
What have they put in place?

bishboschone · 03/10/2011 18:23

I'm another who can't seem to say what I want to say except I am in awe of how you are coping. I recently had a prem baby who was suspected to have some problems and I didn't take it anywhere near as well as you have and for that I am ashamed and have so much respect for you and your husband . Lovely title and lucky Beatrice that the stork brought her your way .. Look forward to more photos and updates .

tinkgirl · 03/10/2011 18:25

just wanted to say that it was good to read your post. I wish you all the best of luck for the future whatever it holds for you and your family. Beatrice is truly beautiful.

5inthebed · 03/10/2011 18:34

COTP, I am pleased your appointment today was not all doom and gloom and that you have come away from it feeling more positive. Beautiful thread title for a beautiful girl.

Welcome to the SN boards. Lots of knowledgeable ladies on here, lots of friendly people and lots of shoulders to cry on when you are feeling it is all getting on top of you.

Conundrumish · 03/10/2011 18:39

Grin So happy for you. I have your last thread in 'watched threads', so can only see the first line of a post, but when I saw those few words 'Last post here in Bereavement, time to move on' I breathed a sigh of relief (and I don't even know you, so goodness knows how you must feel!).

BerryLellow · 03/10/2011 18:42

So lovely to find you've moved out of Bereavement to here... I'm finding you inspirational (even though you may not feel it) and so thrilled that Beatrice has such a wonderful family to take such delight in her. Will look forward to your updates and I wish you all the best. Love.

bigbluebus · 03/10/2011 18:49

cupoftea This is the 1st time I have seen one of your threads and it brings back so many memories for me.You sound incredibly strong and together.

When my DD was born she weighed 4 11 1/2 - so slightly bigger than Beatrice, but a little dot nevertheless. My DD was my 1st child and although we didn't know there were any problems before she was born, it was quite clear as soon as she was born that she had many problems. I still remember the looks on their faces now as they took her away and DH & I cried as we tried to find out what was wrong. DD was diagnosed with a rare chromosone disorder at 3 days old, but as it was rare, the doctors were not able to tell us what the future held for her. She had difficulty feeding due to poor sucking reflex, but managed slowly but surely. I was able to express breast milk and feed small amounts to DD from a bottle just for 10 days whilst we were in hospital. I remember being terrified of taking her home - I had never looked after a baby before - let alone one with DDs problems.

But we had fantastic support from community paediatric nurses, the GP, the hospital consultants and of course family (although they didn't live nearby).

Fast forward 17 years. DD has come through so much and survived, she has experienced things that we never thought she would, in spite of her severe disabilities and complex health needs. We have met so many fantastic people (both families and professionals) that we would not have had the privelege to meet if it was not for DD. Our life has changed immeasurably for the better and we have coped with things we would never have thought possible. It hasn't all been plain sailing by any means but we've managed and from the sound of your positive attitude - you and your family will do a fantastic job of loving and caring for Beatrice.

I wish you all every luck in the world.

I look forward to following your thread and hearing all about her progress.

DottyDot · 03/10/2011 18:51

Cup - thank you for starting this lovely thread - and for taking the time to update us - I've been thinking of you today and am so glad you're feeling peaceful and hopefully positive. Good luck and keep us posted if you can xx Smile

atmywitssend · 03/10/2011 18:55

Tgank you so much for posting this update - I have been thinking bout you all today and hoping that your appointment went well. Beatrice is a lucky girl to have such a wonderful mummy, you seem to be coping so well.

PeachyWhoCannotType · 03/10/2011 19:10

Welcome to SN. It is so utterly fabulous to see you here! An unsual thing to say but under the circs appropriate.

IwishIwasmoreorganised · 03/10/2011 19:20

And so your journey with the gorgeous Bea continues.

Glad today went pretty well, I've been thinking of you all.

xx

oooggs · 03/10/2011 19:30

thank you for the update cuppa - we will all be here to support you and your family along this journey with Beatrice

skinnymuffin · 03/10/2011 19:32

It sounds like today went well and you are getting more positive news with each small step. Wishing you all the best and congratulations on such a beautiful, brave and determined little baby girl x

ChippingIn · 03/10/2011 19:33

CoT - thank you so much for the update. I've been thinking about you all today, wondering how it went. I am really pleased that you are feeling 'at peace' - if exhausted!! It is lovely that you are able to move out of bereavement. Where there's life, there's hope. Bea is a little fighter, like her Mum!! I look forward to years & years of updates on all 3 of your girls - with photos of course. I hope the photo session went well! Sleep well tonight x

firsttimer78 · 03/10/2011 19:41

Lovely to read your update Cup and glad you feel at peace. May Beatrice be surrounded by the love of her family for a long time to come x

EllenJaneisnotmyname · 03/10/2011 19:44

Just found your story, cupoftea. I'm so pleased you have found us here in SN and I hope we can be really supportive. Your darling daughter will continue to surprise you, I'm sure. She sounds like a real fighter. x

magicOC · 03/10/2011 19:56

Oh cup i'm so so pleased to see you leave the bereavement thread Smile
So happy for you all that todays diagnosis is a bit more promising than what they told you after the birth. Little Beatrice has proven already that she is a fighter and no doubt she will continue that great fight.

I'll keep praying for you to have the strength to face head on whatever the future may throw at you both, for baby Beatrice to have the most fulfilling life possible with the love of her family and the MN family as well. Smile

I will continue to follow your up-dates as we head towards Christmas and look forward to seeing many more pics of your beautiful family.

Have a very happy furure together, all of you.

magicOC XX

PacificDogwood · 03/10/2011 19:59

Cupofteaplease, I have not posted on your previous thread as I was entirely lost for words.

So belatedly, congratulations on the arrival of your darling Beatrice, much as it was not like you would have hoped for.

I am glad today's appointment was a constructive one and a particular thing you said really resonated with me:
"We don't know what the future holds..."
None of us do.
That is the stark truth, which most of us have the luxury to be able to live in denial of most of the time. You and your family have been forced to contront head-on how fragile and unpredictable life is and for that I am so, so sorry for you all.

Beatrice is beautiful, much loved and has already proven that she is more relisient that some would have thought. And children can surprise us in so many ways. Long may she go on to amaze you.

Much love and strength xx.

AnnaKissed · 03/10/2011 20:15

Although I haven't posted, I have followed your other thread, and the response on it and the other threads about you have changed my opinion of Mumsnet completely.

You are amazingly strong and I wish you lots of happiness in the future.

Life is defined by love not length. Beatrice is clearly very loved.