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.

Thank you BL.

Beatrice is doing brilliantly.

Yay Bea - keep it up!

Cup keeping you and the whole TeaSet in our thoughts and prayers.

Come on Bea the Beautiful you can do it, hugs to the Cup family.

Keep going Bea - you can be off the O2 and back home by Christmas!

Thanks for updating Bobloblaw, keep going Bea and family x

Thanks for the update Bob. Still praying and keeping everyone in my thoughts.x

Thinking of you all so much x

Keep fighting Bea, you can do it xxxx

Bob - Thank you for the update. Remind Cup that she could start a new thread if she wants, we don't have to fill this one up first!! She could start it then you could link to it. Just if she wants to chat x

Come on Bea - all your (internet) Aunties are fighting with you! x

Thinking of all the cups xx

yay go bea!!! hope you are soon home for xmas, thinking of you and your family xxx

Ok, I am going to attempt an update, even though I can't see what I an writing- stupid phone! I can read all threads and reply to short ones, but long ones like this send it into overdrive!!

Thank you for the continued support, you are all stars. I like the idea of Bea having lots of extra aunties, although she has 7 in real life too

She has gone to bed very settled on 0.05 oxygen so I am praying we can warn her off completely tomorrow. Dr Death is back on duty tomorrow, joy. She tried to make us write up Bea's end of life plan the other day-to-day dh was so upset, it just came out if nowhere You see, she'd said Beatrice wouldn't be able to survive an infection, so when she wad whisked to HDU on Tuesday, dh and I were distraught, as you can imagine. We had been led to believe that was probably the end of her life. When the consultant came to see her on Friday, she said, 'Just because she's survived this infection, doesn't mean she'll survive the next one.' It's so hard, like we're always having the boundaries pushed. It makes it hard to just enjoy her, instead we are on eggshells waiting for the next hurdle.

Anyway, Beatrice looks delightfully pink and calm now. I'm desperate for her to come home for Christms, but perhaps with the strength of MN behind her, she will manage it.

My older girls have been super stars, going to various friends and family. But I managed to collect them from school on Friday and take them out for tea, and yesterday I took them to a party whilst dh stayed with Bea. Today was our Christmas at the ILs, so dh took the girls and celebrated as planned. So whilst they ate turkey and Christmas pud, Bea had Infatrini and I had mini pretzels- not that we're bitter, hey Bea?! I also went to see the girls in their nativity on Tuesday. That wad one of the hardest things I've done, as Beatrice wad still unstable in HDU, but the girls needed me there to support them too. It was hard leaving Beatrice, but I wad so proud of my big girls. However, the first thing they asked when they came to find MW afterwards was, ',Where's Beatrice? She missed it.' They are so proud of their little sister and love an excuse to show her off.

Right, I shall press post, and please accept my apologies for any typos or dodgy spelling!!

Much love, you are so strong and amazing, congratulations to you and Bea for getting so far and ya boo sucks to Dr death. Wishing and praying for you both to be home for Christmas x

Would it help if you or someone else started a new thread?

cup - thank you for the update
Well done Bea for doing so well, i do hope she'll be home for Christmas.
And you've done brilliantly to balance the needs of all the girls, it's tough at the best of times, so i can't begin to imagine how hard you are finding it.
Dr Death sounds like a grim insensitive cow and just the incentive Bea needs to prove her wrong. Any news on a change of consultant??
Big hugs to you all. Take care of yourself.
x

To be honest Dutch, I sort of see finishing each thread as symbolic, like finishing a chapter of a book and then starting a new one. That probably sounds odd , but I'll persevere with this one.

Bless you. I can understand that. The only thing is that is is very slow to load for all of us and I wondered if starting a new thread would make it easier.
But I totally understand wanting to fill up one thread before you start another just to be able to say:"Yah boo chucks, she has survived another 1000 posts."

Cup you sound like you are doing such an excellent job of balancing the needs of all your girls. So firstly a big well done to you. I hope you're giving yourself the credit you deserve.

at Dr Death and her grim predictions. I so hope you get a new consultant soon in the new year. One that sees Bea for the uniquely brilliant child she is.

Finally I really really hope Bea is home for Christmas and that the whole teaset has the very best Christmas possible xx

lovely update, glad you got to see your dd's in their play and that bea is more settled and PINK!! fingers crossed she is home for xmas and hope you get a new dr, sod off dr doom

Cup you are such an incredibly wonderful Mum, it's no wonder your big girls are so lovely and accommodating and your little Bea is such a fighter.

What I wouldn't give for 5 minutes alone with Dr Doom

As for Bea's end of life plan - tell them it's simple. They will do everything that can be done to ensure her end of life is a long, long way away. Should the worst happen, you will deal with it at the time. If you want an EOL plan, you can write it when Bea is at home looking all pink cheeked and content - not when she's in HDU and you are stressed to the max.

The girls appear to be dealing quite well with the additional demands Bea is making on your time and you are doing really, really well to juggle all their needs - you really are a star.

Fingers crossed Bea is off the oxygen tomorrow and is well enough to go home soon so that you can all spend Christmas together.
x

Dr Death needs words having.

She clearly has no children and no empathy or people skills either .

Go Bea!!!!

End of life planning is something that the patients in the area I work in are being encouraged to think about more. It's never an easy thing but it is often helpful. HOWEVER it should not, cannot, be properly contemplated in high stress circumstances. The point of end of life care plans is to minimise the stress not add to it.

I'm going to pray Bea gets home for Christmas. We had this song at our Carol service tonight. You might like it if you don't already know it?

Oh Cup! So pleased that Bea is doing better now and really I think someone else needs to kick Dr. Death!! Perhaps one of you could pop down to the PALS office - I know you think it needs energy but it really doesn't, just go and log a complaint about the utter insensitivity that Dr Death has continuously shown you. She is adding unnecessarily to your stress loads - that is a Bad Thing!

I still have everything crossed that she will be home for Christmas - she's going to love the visual excitement of the lights and the wrapping paper and so on!

Your older girls still sound like absolute stars - but then they have your genes so not that surprising

Wishing you all lots of love and strength as always xxx

Our community nurse came in to see Beatrice on Friday and Iasked her to tell the consultant not to mention her end of life plan again. I said it had upset my dh and the timing was inappropriate. I said her end of life plan is that they do a full resuscitation including ventilation, unless we say otherwise, at the time. And I don't want her to bring it up again.

The nurse passed that on and said the consultant agreed not to raise the issue again.

Sending lots of strength to little Bea :) She is such a little superstar.

Will keep everything crossed for you that she can come of the oxygen soon.