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Original poster

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:
RatherBeOnThePiste · 04/10/2011 06:03

Thinking of your family, and sending love. Your thread title says it all x

KnottyLocks · 04/10/2011 07:20

I love the new thread title Smile

I'm so pleased that we're here and no longer in bereavement.
Beatrice obviously intends to defy doctors and medical science: good girl!

Sending love to you all.

HooberGoober · 04/10/2011 07:31

Congratulations on the birth of your beautiful daughter Beatrice! She is gorgeous, and very blessed by being born into such a loving family.

I don't know whether this will be relevant for you but there is a support group for families with children with rare chromosome disorders, called Unique You might not want to think about it now but at some point in the future they may be able to help.

pantaloons · 04/10/2011 08:00

Cup, we are currently living in a caravan and this is the first time in a few days I've been near a computer. The first thing I did was check your thread and I'm so glad it's moved to a more positve place.

Beatrice is certainly a lucky little girl to have such a wonderful family and I'm sure you will have many many happy times with her.

Keep us updated, I feel as if I know her already!

IceCreamCastles · 04/10/2011 08:24

Really pleased you have started a new thread. Wishing you and Beatrice all the very best for the future.
She is very lucky to have such a wonderful family to care and fight for her.

Concordia · 04/10/2011 10:55

i've been wondering how you all are and pleased to find your thread. i guess beatrice has proved them wrong so often so far, i am hoping she can continue to exceed expectations. but whatever happens your positive attitude to her needs is fantastic. i don't know if many of us could manage it. be prepared for a dip when it all sinks in though and come and find us on mumsnet any time you needs us! hope your DP and other DDs are ok too.

ben5 · 04/10/2011 12:08

Good luck to you all. You sound like some sort normal life is beginingSmile. I have followed this thread and every day you've been so brave. A hug, love and a pray said for you all

heronsfly · 04/10/2011 16:10

I have followed your thread from the start and prayed for you ,and your lovely family,so pleased to see your new thread, Beatrice is beautiful and I hope she continues to thrive, there is great strength in those lovely big eyes.

bubby64 · 04/10/2011 19:59

Another follower here, DH and I have been looking for your updates each day, and are both so glad you have you have found a little peace and can relax and enjoy your wonderful daughters again.
I hope you don't mind, but I have added your family into our prayer circle, because I have always felt a few more prayers can never do any harm.

t0lk13n · 04/10/2011 20:30

XXXXXBeautiful Beatrice and her lovely familyxxxxxxxxxxxxxxxxxxxx X

elliejjtiny · 04/10/2011 22:04

Your post is just lovely and Beatrice is beautiful. A life filled with love is definately worth living.

bumpybecky · 04/10/2011 22:59

I'm so pleased to see this new thread, here in SN not in bereavement. Wishing you all much love and strength over the coming weeks and months x

NiecieTheTerminator · 04/10/2011 23:26

I just wanted to echo the thoughts of previous posters and say that it is lovely you feel you can move on to the SN boards. It does seem odd to say that but given where you were a couple of weeks ago it really is wonderful news.

Many best wishes to you and the lovely Beatrice and all your family.

YankNCock · 04/10/2011 23:30

Another one very happy to see you not in bereavement. Wishing you and Beatrice the best.

MartyrStewart · 04/10/2011 23:39

Cupoftea, another lurker here. I know it has been said time and time again, but i really do wish your lovely family the best. You are in my thoughts and prayers xx

argghh · 05/10/2011 13:53

Glad I found you here .... best wishes to you and your beautiful family.

Thumbwitch · 05/10/2011 14:48

Cupoftea - how is your lovely girl doing? And what happened with the BM - did you manage to express any for her? I hope she is continuing to improve in strength etc. and that you and your family are enjoying her being there. X

DirtyBit · 05/10/2011 20:38

Cupoftea all three of your girls are beautiful. Sending all my love and best wished to you and your family. Xx

Iamjustthemilkmachine · 05/10/2011 21:34

Very true thred title. Wish you all the best.

Iamjustthemilkmachine · 05/10/2011 21:51

Sorry had to run there. Wish you all the best to you and your beautiful family, your strength is inspirational. Xxx

coff33pot · 05/10/2011 22:36

What a lovely thread cupoftea Smile

Beatrice has a wonderful loving family to support her. She is a determined little fighter what a girl!

I wish Beatrice and yourselves all the best for the future xx

LittlePebble · 06/10/2011 07:47

Morning cupofteaplease just checking in to see how things are going? Hope you and Beatrice are ok? Xx

Original poster
cupofteaplease · 06/10/2011 10:55

Well yesterday was a pretty hard day. We had a meeting with the opthalmologist who said that her eyes all look ok, but we don't know what messages her brain will be sending to them, so come back in 6 months and we'll look again. Fine, but it reminded me of something the paediatrician said on Monday that I had forgotten. When I told her Beatrice had passed her newborn hearing test, she sort of scoffed and said, 'well that just shows us the apparatus is working, whether her brain is processing the sounds is quite a different matter.' I understand that, but she startles at loud sounds, and moves her head to hear voices or her bedtime music toy. So I want to be positive and think that she CAN hear. And she fixes on light, so I want to believe that maybe she CAN see a little. But then I think about a life without sound or sight, and can't imagine what a lonely place that would be, and that makes me sad.

Then I had an argument with dh, because he is back at work this week midday-midnight, and I just feel incredibly lonely. It's always been like this and I was fine with it before, but now I feel like I have too much thinking time, and I feel like I'm in a dark place and it's all a bit too much. But then I remind myself that Beatrice needs me to be strong and positive and fight for her and I feel guilty for being negative.

And then this morning the community nurse came and seemed delighted with Beatrice, that she is now taking 45ml by bottle and is more active and alert and content so I felt really pleased. But once she left, I opened up the letter from the consultant to our GP which she had cc'ed to me, and I read one line which set me back again: 'Although Beatrice has stayed very stable over the last two weeks and I hope that this will continue, given her size, and the paucity of movement and her somewhat shallow and at times erratic breathing pattern I think there is still a possibility of sudden demise.' How can I stay positve in the face of things like that? Seeing it written down is hell, like it's more real than words floating through the air that I can filter out and ignore at will.

I love her so much, and this pain in my chest is here, and tears are threatening behind my eyes and I know if I have to talk to anyone they will spill out, but I can't be negative, I have to keep smiling for Beatrice. And it's so hard.

OP posts:
Pinot · 06/10/2011 10:59

Oh my gosh cup, my heart just aches for you. Can you see the GP for a little mood-lifter whilst you're going through all this?

Bucharest · 06/10/2011 11:00

Oh, bless you CoT.
Stay strong. xx