Cup and the Teaset face 2012- and this year, Beatrice means business!

[cupofteaplease]

Hi. Chances are if you've opened this thread, you may have followed us from here I thought the new year needed a new thread (also the old one was nearly full!)

The basics: Beatrice has central arthrogryposis and extensive cortical dysplasia. She is 16 weeks old and weighs 8lb 1oz. She is on continuous oxygen at 0.2 litres. She is fed Infatrini with Duocal mixed in via NG tube. She is undergoing ponsetti treatment for her talipes, she also has splints for her hands and is now in a pavlik harness full time for her shallow hip sockets. She is coping very well with all of her treatments. Her community children's nurse describes her as 'defying all the odds'.

The positives: If you have a 4 month old NT baby, the following will probably seem pretty poor progress, but for Beatrice who was stiff and non responsive at bith, she has made great gains. Bea seems very alert in this last week and is becoming more vocal too! She happily shouts at me when something isn't going her way- a vast improvement as she couldn't even cry when born. She moves her arms in all directions now and manages to lift her legs, even with the cast and harness. When she is under her play gym with lights, she moves her arms and legs in appreciation. She also mouths when she is hungry. Her breathing pattern seems much more regular since being on oxygen. She not only recognises my voice and turns to find me, but she can also distinguish other people talking and will move her head in different directions to find who is talking. We assume her eyesight is very poor, although we know she can see shadows and bright lights when it is dark. She adores the cinema and has been twice now!

The downers: Her weight gain is painfully slow- on average 2oz per week. She has fallen off the growth charts completely. She is still sick a couple of times a day. She is having a barium meal and swallow study on Monday to see if there is anything going on. Her sats are irregular and heartrate is very high, so weaning her off oxygen (which she started when she had pneumonia before Christmas) hasn't started yet.

Support: Beatrice was finally awarded DLA at the highest rate today, and we have been told to apply for a blue badge as parking in tight spaces with her oxygen is somewhat problematic . Next week, our lovely physiotherapist who has been administering the weekly plaster casts is going to start coming to our house to do some massage and play and encourage her arm movements even more. The referral to Helen House Hospice is still being processed. After Bea's casts have come off permanently (just 2 more to go!!) I plan on taking her swimming at the hydrotherapy pool in the special school where my SIL works as a SLT.

At the end of January we have a review with our 'lovely' paediatric consultant, Dr Scrooge. We havent managed to shake her off yet!

Thanks for following us here- I'll add some more pictures in a minute.

Oh & they used the hospice for 10 years, they are in it for the long term with you, it is about helping you all to live with Bea's life limiting condition & if Bea's strength so far is anything to go by she ahs a lot of living to do. :)

Another one here praying for the gorgeous Bea.

Do you think perhaps the kindness of the hospice staff has touched you emotionally in a good way, but that has triggered more difficult emotions too? You've fought for Beatrice for so long with a troublesome hospital and now you have an interested consultant and nurse, that must be such a relief. Perhaps a good cry is healthy for you - to release some of those emotions you've been being so brave about as you've worked so hard caring for Bea?

The future isn't clearly seen by anyone, not you, not the docs, not for definite. I hope there are many positive surprises for the Cup family wrt to Beatrice!

Can you try to live in the moment and savour every minute of being with her and let the future take care of itself? I've recently been through cancer treatment and I found that only dealing mentally and emotionally with the upcoming week was a good way to handle things and not run ahead in my mind to contend with things that weren't yet in front of me. Sometimes it's just too much to deal with. Just take as much pleasure as you can from what is happening right now.

I'm so glad you have all got some wonderful support at the hospice. Obviously they have some very special staff there to care for a very special little girl.

Agree with DeeCrepritude. Maybe the hospice visit has been a cathartic experience for you.

I would love to say 'live for today' but I know how hard that can be.

Sending you much love and big hugs and wishing you strength for the road ahead.

I don't think anyone could have done more for a child Bea than you are doing for Bea.

So glad you have got the meds for Bea's reflux, as an adult sufferer it is hellish, do be aware that they can fail and be prepared to fight for a fundoplication.

The photo's are adorable and you can see such strength and mischievousness in her eyes.

Sweetheart - you are crying today because visiting a Hospice brings it all into sharp focus :( Day to day you have been focussing on getting Bea the help she needs and looking after a sick wee girl and her two big sisters & their Daddy &&&&&. Getting on with it - as you have to. Today, you saw a place that is wonderful, lovely, special - but not somewhere anyone wants to be in a position to need to use. They also made you feel understood and cared about and I dare say you haven't had a lot of that :( They sound like they will look after you all as a family, very well... but it's still hard to accept that you 'need' somewhere like that and that no matter how much effort you put in, no matter how brave you are and no matter how much you/we all wish it was different, you are going to need that help for you all.

Your girls will cope, children do. They are far more pragmatic & accepting than adults. DD2 will always be a Big Sister x

'How do you answer how many children do you have?'. Some people will only say how many 'living' children they have, others will say how many children they have including those no longer with us - most, I am sure, vary their answer depending on who is asking, how they are feeling and what the situation is. You don't always want someone's 'pity' or their 'questions' - no matter how well intended - it is up to you how much you tell strangers.

I know it's hard, especially when you have been visiting a hospice, not to think about the future and how it will all pan out, but try not to dwell on it too much - try to continue as you have been, one day at a time - making the most of each and every day.

We all care about you so much ... you & all three girls have touched so many hearts here - if anyone of us could click our fingers and make Bea well you know we would - but as we can't, we are here with you, as best we can be, while you navigate the way forward.

Hi cup. Glad the hospice visit went well and you found the staff to be lovely. I'm sure you will be apprehensive about your first stay there but I'm sure it will be fine.
It really is OK to cry - this is all still very new to you - although it probably feels like you've been living this for ever. But it has only been a few months.
Just because you are going to use a hospice doesn't mean the end is nigh - it is just as others have said - because the lovely Bea has a life limiting illness - and no-one knows what the future holds. As I've mentioned before, my DD has been using our hospice since she was 2 and we are currently thining about what we might do to celebrate her 18th birthday later this year - we would never have predicted we would be doing that all those years ago!
I have a friend whose daughter did sadly died at the age of 5. She was the middle one of 3 girls and they always remember her when writing Christmas cards etc by putting her initial inside a heart in her rightful position, between the other 2 girls names. So her daughters will always remember the pecking order.
Hope you are feeling better today

Thank you for the lovely messages. I'm feeling a lot calmer today after last night's emotion. You are all right, I need to view the hospice as support, rather than end of life care. They said they can also host phased discharges from hospital, so when Bea had pneumonia at Christmas for example, she could have gone to the hospice for the last few days.

Bigbluebus your dd sounds amazing Does she have a diagnosis? I love the idea of your friends, using a heart.

Bigbluebus That brought tears to my eyes (again) - what a lovely idea with the initial in the heart.

Cup -glad to hear you sounding more cheerful today.

Big hug for Bea from me.

So glad that you are feeling better today, didn't see yesterdays post at the time. But am pleased they were so lovely at the hospice.

Am loving thumbwitch's 'don't borrow trouble ahead of time' mantra......I think I could do with stealing that one

Big hugs for the Teaset x

I agree about thumbwitch's motto. I must remember that.

Hi Cup Glad to hear that you were feeling better yesterday.
My DD has a chromosone disorder (4p-) which was diagnosed at birth, but the Drs had very little info about it at the time, so we were very unclear about her future when we brought her home. We were fortunate that there was/is a support group for her syndrome so were able to get lots of info from the lovely parents of other children with the condition. We have been able to meet up with some of the families at their get together every 2 yrs, but as DD is 1 of only 2 children in our county with the condition (as far as we know) we get most of our support from local families of children with other disabilities whom we have met along the way - but mostly at a special play group which DD went to from a few months old to 2.5 at our Child Development Centre - when she started at the nursery at SN school.
Do you know if there is a group like that in your area that you could go to with Bea?
Of course you now have the invaluable support of your Mumsnet friends - which we didn't have when DD was little

As I've said before, our hospice has been fantastic over the years - not only for planned respite, but for advice, homecare, sending their outreach team into the hospital when DD has been in for a while - allowing me a break so that I could go home and do all the housework DH hasnt done spend time with DS. They also have councellors and social workers as well as running sibling groups and a parents social group. And I know they provide fantastic support to those who have lost a child - not only from a diagnosed condition but also to those who have experienced a sudden unexpected loss of a child.
Childrens Hospices are a fantastic asset for those who need them and although it is sad that they get very little Government funding - in a way that is what makes them so fantastic - they make their own rules and decisions and really are there to help make our lives easier.
I hope you find your hospice to be as invaluable as ours has been.

cup just wanted to say your photos are gorgeous - I remember seeing the first lot you put on when you started your first thread on the beautiful Beatrice - she's absolutely gorgeous - love the one of her in the Bumbo!

Hello, cup, I've kept up with you and your lovely family over the weeks but never felt able to contribute before. I have a son who was born with complex heart problems and was not expected to live - he's about to take his GCSEs :) We still don't know what the future holds, but have stopped worrying about it (most of the time). More pertinently, our third son died after an accident aged 6 and we have always included him in everything since. We now have another little one who knows he has 3 brothers and that seems perfectly natural. I always say that I have 4 sons or say something that doesn't necessarily invite further explanation, such as 'he's number 4'. His name is included on cards etc - I've stopped worrying about what other people think.

I hope this isn't telling you too much, as the focus should be on now, not on a possible future, but I hope also that it shows you that there is a way through. (I'm a teacher as well btw, so think I recognise a bit of how you're thinking about all this :)) x

cup have been following your threads since the beginning. Was on the Oct 2011 thread with you. Gorgeous photos. Wishing you all the ebst with your beautiful girls. x

Helyantha I'm so sorry to hear about your son who died, you never know what life has in store, thankfully.

I've had a super weekend celebrating my 30th birthday- a new decade awaits!

To end the weekend perfectly, I am doing a 24 hour Sats monitoring on Bea to see how she is coping with the oxygen, and see if we could begin to wean her off. We did one a fortnight ago, perhaps, and when they downloaded the data her average was 94% but she desated frequently when asleep even into the low 80s. She's been on the monitor since 4pm and has sat at 100%, even when asleep! Dare I allow myself to be hopeful?

Happy Birthday, Cup for you!!!

That percentage sounds terrific, let's pray Bea is nice and stable and it's safe to take her off.

And I hope you don't get any more hassle re the parking issues - that really gets my goat on your behalf.

Enjoy your evening

Cup oh my love I've just seen your post from a few days ago. The question about 'how many children do you have' and 'will dd2 always be a big sister'. As you know my dd died in August; 5 months on I know in my heart now I always have to say 'I have 2 daughters, sadly one died shortly after she was born' a few times in the earlier days I have answered 'dd1 is my only child' and I felt so so wretched that I just can't say that. I feel like a mum of two still. I'm in the early days of pregnancy no 3 and I am waiting for the questions to come again - I will be answering this is my third child. I refuse to erase dd2.

As for the big sister question. It's a toughie, dd1 is nearly 5 and although she knows she is a big sister she sometimes says she doesn't feel like one as dd2 isn't here. But she certainly talks about her 'little sister' all the time.

But Bea is here and she is an amazing little fighter. I suspect she might be around for a long long while yet. I'm glad the hospice made you feel as comfortable and welcomed under the circumstances. Yay for potentially come off the oxygen. She is amazing. As are you and your whole family. Thumbwitch's motto is perfect xx

Ah importantly forgot to say happy birthday

Happy birthday. Good luck with the sats

Happy birthday Cup of Tea!

Happy Birthday Cup. Great news about Bea's oxygen sats - hope she continues to be(a) 100% in every way.

WhatevertheWeather - I did pm you but just wanted to say again congratulations on your pregnancy.

Happy BIrthday Cup! So pleased you had a good time and even better that Bea's O2 status is improving so much, that's great!

Whatever - very pleased to hear your good news as well, fingers crossed it all goes well for you. (((hugs))) for you - I still think about you and wonder how you're doing so it's nice to hear good things.

whatever Congratulations on your fantastic news! I hope you are being monitored well for peace of mind (actually, that's just what I would want, you may prefer to be left in peace to get on with it!!).

Bea is still doing well, sat between 98-100% but dipped to 81 momentarily when she was very sick, so I assume the consultant will not agree to lower the o2 now.

Hello cup and a hapy birthday to you

Great news on Bea's progress, and her sats. Remember that "normal" sats can be 96% and over and I think anyone would desaturate momentarily with vomiting - as long as they don't stay down then it might not be a big problem. What flowrate is she on at the moment?

The tears will flow some days, I think sometimes you just have to let them flow and look upon a good cry as a release of all that pent-up emotion.

Loving the pics

Thanks Sidge, she's on 0.2 litres.