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

[cupofteaplease]

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.

Oh no :( I'm really sorry. You can self refer to the hospice, or the community nurse could do a referral (it's not as quick as it used to be because it now goes through the LA, which it never used to) but it's still quicker than most support services.

You really shouldn't have to wait until the new year, could you see if the GP could refer to a neuro? Or one of the team you see re Bea's casting? You can definitely self-refer to the children with disabilities team at social services who if you request a fair access to carers breaks assessment have a legal obligation to carry one out (they can refer to hospice too) re respite and services local to you.

Do ring the hospice cupoftea. Use the 'life-limited' diagnosis to get what you need in terms of support and DLA whilst working positively to give Bea the best possible life and pushing for the referral to the neuro. You don't have to wait for Dr Doom to do that you are entitled to request a 2nd opinion for her and your GP can help you access that.

You shouldn't have to fight for all this but sadly it's the way it is.

You are doing so well. x

Thank you for the lovely support and practical suggestions.

Having a better day today. Dh rang up about DLA- he explained that we've been informed we should have applied under Special Circumstances, so they have started the appeal process (which can take 11-15 weeks ), but at least that's done.

Thanks for the suggestion of Helen House Hospice DutchOma, I rang them this morning and self-referred. They are sending out a permission form to access her medical records from Dr Doom, then if appropriate, they will call Bea in for an assessment. She said the process doesn't take as long as it sounds.

BobLoblaw I don't really want to contact SS, sounds a bit ominous?

But I went to see my sisters today and they were amazed at Bea's progress and how alert she seems- she responds to my voice by looking at me and mouthing, like she is wanting to communicate . She is also incredibly strong and sits on my lap supporting her own head whilst she looks all around her, very cute! They reminded me that Bea is showing no signs of slipping away, and the consultants never see her anyway, so I'm her expert.

A secretary called me from the hospital- she said Dr Doom is away all week, so we won't hear anymore about the barium swallow.

My sister has offered to sit with Bea one day so I can go to GP and try to up my anti depressants as I am needing a bit more help I think.

In our area you need a social worker to access any respite services as they have to do a needs based assessment, the hospice may contact them as the Local Authority now has to approve hospice referral as it's now under their remit as well as being covered under the PCT.

The community nurse should be able to chase the barium study too.

That's lovely news about Bea, she is a super star :)

Not posted before but have followed this thread since the day Bea was born, and have been continually amazed by Bea's amazing progress and determination, by the support and kind words of MNers but most of all by you Cup, and the strength and dignity you have shown throughout your darkest days.

As others have said, the expert on Bea is you and every day, you see a thriving and alert baby who brings delight to your lives.

I hope the GP can give you something to take the edge of real life and make it easier to just keep putting one foot in front of the other.

I think of you and your courageous and beautiful girls regularly, and hope and pray that things will work out for the best. Much love xxx

So pleased you phoned Helen House, well done. And well done MrCup for ringing the DLA, hopefully they will now get their act together and quick.

YOU WILL TELL US, WON'T YOU, IF WE CAN DO ANYTHING? CASH, TOYS, TIME (WISH I LIVED CLOSER)

PLEASE DO

Cup - you and your family are under immense strain, but you are doing an amazing job.

Be kind to yourself, try to take one day at a time.

Don't know what Mr Cup's job is but is there any chance he could have some compassionate leave just to be there a bit more for you and Bea?

Bea is gorgeous - very cheeky look and such expressive eyes x

Carole, thank you, but you wouldn't believe the support Mumsnetters have given my family and I, both practical and emotional

Only yesterday a parcel arrived for my older girls to let them know they are still important! People have knitted for Bea, sent clothes, brownies for the girls, a mobile, a breast pump. Not to mention the fund that was collected, which enabled us to order a memory box and pantomime tickets for a family trip near Christmas, and I hope to be able to make a healthy donation to the SCBU in Bea's name.

I have also been in email/Inbox contact with a couple of MNers who have patienly answered my questions and offered their own experiences and advice. Mumsnet has been my main source of practical advice through all of this

The only other thing I would like, would be to meet up with other local mums with children with SN who have been there, done that! If any of you live near Northants, please do let me know!

Bea looks so content in your photos - so very loved and at peace. Lovely to imagine her responding to her mama's voice and mouthing! Take every little sign as encouragment and focus on it. Enjoy the moment and forget the stress for a while, if you can. She really is a cutie-pie.

You are an expert on Bea; you pick up all the nuances of her behaviour and your instincts will increasing count for a lot. Are you properly looking after yourself - getting a break when you can, a little bit of pampering?

Let us know if there's anything we can do. Rooting for you. x

Ah, cross-posts - glad Mners are giving you good support. x

Hi cup. Sorry to hear you had a day of people being negative about Bea. I'm so glad you have now self-referred to your local children's hospice. My DD is also "life-limited" since birth - she is 17 now and has been going to our local hospice since she was 2 ( after DS was born). I'm sure you will find them to be fantastically supportive and they will have a completely different attitude than the one you have experienced from the statutory services.

In my experiences Social Services are there to provide help - they have a separate Disabled Childrens team with their own social workers here (not sure if thats the same everywhere). But they will not offer help unless you ask for it - as another poster said, you are entitled to ask for a carers assessment.
They may also be able to point you in the direction of sibling groups for your other DDs (varies who run these- Red Cross run one around here but also some set up under Short Breaks Initiative as well as the one run by our local hospice)

You are doing a fantastic job and you are right - you know Bea best - don't let them forget that.

Keep going Cup, you can do this. We're all behind you. xxx

CupofTea ... I have followed your thread every day since the beginning but have only posted once - I have kept meaning to post again since I think you need to know that the "lurkers" are still there supporting you and thinking of you as if we just follow Bea's progress but say nothing to you then you miss out on some support, however small!
I have been so, so thrilled to read of Bea's progress, and oh she is such a beautiful little girl too - I said she reminds me of my own little girl with her big, dark eyes - and she still does. She has a happy, contented little look on her face too, and you know what ? I do believe she IS going to continue to prove everyone wrong and go from strength to strength and stick around so you can enjoy her growing up. I am so pleased to hear about how she is lifting her tiny head - what a toughie - and yes, I remember how cute that looks too!! Also, she's watching you when you speak, which alone flies in the face of the initial diagnosis you were given, and proves this baby listens to noone but herself - go Bea!!
I have no experience of SN I admit, so will steer clear of giving (possibly misleading!) advice re your medical team but I will offer my sympathies for the awful time you are being made to have, and my admiration for how you are coping with it.
I would also like to tell you that your aspiration to breastfeed Bea right at the beginning made me pick up the phone to my local milkbank to offer my breastmilk to help premature and ill babies in my local SCBU - If it wasn't for little Bea and you that is something I would never have got round to doing - you see, Bea is small but she has had a big effect on lots of people in positive ways already!

Lovely to catch up with your family CupOfTea

I have been following your thread and my heart goes out to you. I can understand the emotional rollercoaster you are on. We were told some awful worst case scenario's by doctors, for my DS2 and my DH who has been ill. The doctors don't always know what the future may hold.

I have a Early Support Keyworker, who is our HV. She has been great and will make phone calls, write letters etc when I need a hand. Do you have this where you live?

Also maybe contact Homestart, they provide a volunteer who will come and offer you practical support. Might be worth investigating?

Hope things improve x

Darling Bea supporting her head and looking at you. Cup you are doing a briliant job.
xx

brilliant, even.

Orange another lurker here but just wanted to give you for being inspired by cup and Bea to donate your breastmilk to your local SCBU.

All best to you cup - love and support from a lowly lurker xxx

Lovely to hear that your sisters have noticed how Bea is developing. She sounds as if she is doing fabulously.

helen house is lovely. we used to raise a lot of money for them before we moved away. not sure how long referrals take now, hopefully they will get right to it and start advocating on your behalf as well as providing some much needed support.

bea sounds as though she's doing fabulously, and is rightly ignoring the doom twins .

tooloud is quite correct. they would not be bothering to cast etc if they did not see a good glimmer of hope. so focus on the positive, but accept willingly the help and support offered via the worst case scenario. and remember that most of science is guesswork, or trial and error, whatever the 5 years of medical school would have you believe.

what are you getting bea for christmas?

11 weeks today. Go Bea!!

Thank you Orange, that is great

Bea is 11 weeks today but she has a cold, so of course I am panicking. Also when I weighed her this morning she hasn't put on any weight this week.

And her hand splints are too big for her so they aren't going to be effective yet either.

Ar cup massive hug you sound a bit down in your post, we are all here ready to listen if you need to off load.
Wow is it really 11 weeks since posted your first heart breaking thread. Well done Bea. Sending lots of get well soon vibes to banish the cold.

Can you get the splints changed?