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.

Hi all, thanks for the company- we're back home now. And quel surprise, the little minx has been sick again. I have no clue what to do now.

tooloudhere I'm loving the feeding pump, it makes life so much easier! And it has seen the end of night feeds so I get around 7 hours sleep per night which is an added bonus.

When I went to get a cup of tea in the hospital a play specialist who we've met many times came to sit with Bea and guess what she did whilst I was gone? Only went and gave the play specialist a big smile when she turned on the fibre optic lights! I had stern words with her when I got back, fancy sharing her smiles with other people, they're all mine!!!

Thanks for the lovely comments re: the photo. It's a shame I look so bloody chunky in the picture, but I guess the camera never lies That said, I'm currently baking a coffee and walnut cake for a friend's birthday and I had a sneaky lick of the bowl, so with unrestrained behaviour like that it's no wonder I'm carrying some extra pounds!!

Must be nearly time for a new thread...

Ooh, please bring the coffee and walnut cake with you to our new thread cup
(even if it is for your RL friend really !)

My Mum made one just the other day and we ate most of it that afternoon while it was still a bit warm - all crunchy on the outside and soft in the middle

Hope you're all happy to be home x

Ooh, a slice for me too, please, cup

So Bea is getting a bit free'n'easy with her smiles, is she? Well, there'll be plenty more for Mummy, then. She does seem to love her light-shows, doesn't she...?!

Gorgeous family,thanks for posting on here,you`re all amazing x

Lovely photo cup and you definitely don't look chunky you wally!!! Naughty Bea smiling for the therapist, traitor!! X

I don't know about the camera never lying - I reckon some people have "fat lenses" on their cameras, certainly some of the women at my playgroup do! I barely recognise photos of myself they have taken in unguarded moments... Yours is a beautiful photo, of all of you.

Glad you're home again, shame she's been sick again but I hope that resolves very soon. And fancy smiling at the play therapist! tutty tut tut! but it's lovely that she's smiling more - more for everyone :)

Glad you're getting more sleep as well, that's got to help. xx

Bea is clearly just making sure her medical team know what a clever girl she is :o

Chunky my ARSE! well actually, my arse is, you aren't!
I am so looking forward to seeing a picture of Bea smiling. Please post it if you get one. X

Lovely photo of you all - chunky! Are you kidding?! I smile when I hear about Bea smiling.

Ah cup what a lovely photo (and you don't look chunky you look far too young to have 3 DD's) happy 5months Bea so happy you're smiling x

Another lovely pic :) Cup, you are beautiful. Your whole family is. In fact, I've thought this a few times so I may as well say it, you look like Catalogue People -all shiney and gorgeous :o

Happy five months Bea x

at 'free and easy' with her smiles! Glad you're home, hope smiler is keeping her feed down now.

Have you got any fibre optic lights at home? I'm pretty sure I have one or two bits at work from an old event we did years ago if you'd like them (light lamps etc) - not sure they are full on sensory room standard but if they make bea smile... .

Love the family photo, Cup, hope Bea is ok back home

DS2, DS3 and DH have had the CGH array test done. They tried to test me but apparantly I am an alien who doesn't have any blood . In my experience the results take a lot longer than they say they will (test done in October, was meant to get results in 3-4 weeks but still waiting).

The pictures are lovely. I don't know about chunky, you look so young. I thought you were a big sister at first. You remind me of Lily Allen.

Best wishes to you all.

A lovely picture Cup, others seeing Bea smile pushes them to do more and to champion more on her behalf :)

How was the rest of half term? Wonderful family photo, one to treasure

Hi, the rest of the half term went without a hitch. I enjoyed spending lots of time with the bigger girls and yesterday we didn't leave the house- the first time in months I've done that!

Girls back at school today, so I took Bea to be weighed and she's back up to 8lb 4oz so she's regained the weight she lost last weight, presumably because dh and I have put her back on Infatrini. We felt that Neocate was doing nothing for her.

Our CNN and an outreach worker from the hospice came to visit this morning just so we could all touch base.

I must admit I felt a bit when I went to the health centre to weigh Bea. There was a drop in baby yoga class about to start and on the wall were details of weekly drop in sessions such as sing and sign, baby swimming etc. Now, I don't know why it annoyed me, but I felt cross that the HV hadn't told me about these sessions. I know they will mostly be irrelevant to Beatrice and I (weaning, baby sign etc), but I felt annoyed that I hadn't been given the chance to turn them down myself! I felt a bit like, 'well your baby is defective, so won't be welcome here.' I know that's my own insecurities, but I can't help my feelings. That said, when I was there, a mum was moaning about her baby having some trivial minor illness and I did think that perhaps it wasn't the place for me. I've dealt with a bit more than the trials of getting diddums to take calpol, or how many ice cubes of pureed apple poppet can eat... Sorry, I'm being facetious.

When I was at the hospice, I met a mum whose son was dying. She confided that she was scared as when he died, she'd still be his mum, but she wouldn't be a mum without a child to look after. She implied it would be different for me as I'd still have the older girls so I'd still be a mum. But, I know that the girls don't need me, not like Bea does. I think my life will feel pretty empty when she's not in it anymore. Yes I will go back to work, and maybe I could go full time now the girls are both in school. But what about all the new skills I've learnt? Tube feeding, switching between oxygen tanks, monitoring oxygen saturation, heartrate, breathing rate. All the people I've met and deal with- the CNN, nurses, doctors, consultants, ward assistants and domestics on the children's ward, the orthics and orthopaedic teams- it sounds weird, but I'll miss them. They've been a support network through all of this, in that they've become a part of my life. I don't know why I'd feel the need to get out of bed without Bea. The older girls just don't depend on me or love me like Bea does. I'm scared of the emptiness and lack of purpose my life will have. In fact, I can't bear to think about it.

Ahh Cup. ((((hugs))))
Again, don't borrow trouble ahead of time. But - as a thought - could you consider volunteering at the hospice later on? Or would it be too upsetting, too many reminders?
Or perhaps there is some training that you could do to become an advocate for people in a similar situation to yours - to help them fight for their child, because you've done it and "know the ropes".
Just ideas, both of which might help fill any emptiness you feel - if it comes to that.

I can understand why you're peed off at not being offered the classes you've seen - they could at least have mentioned them to you! but perhaps they were afraid you'd have a go at them for suggesting something so "normal", when Bea is obviously not a normal baby (she's unique and special). I'm not making myself clear here, but some people would take it that they would be trying to "rub their noses in it that their baby was different", iyswim. (I have family who are past masters at taking things the wrong way).

Hope Bea is still smiling for everyone and congratulations on getting her weight up again :). Keep it up, Bea!

((hugs))

oh cup...

Thanks for posting, Cup and for sharing, so pleased you feel you can. Love is never lost and love is stronger than death.

I was thinking much the same as Thumb re your new experience; a change in direction with work etc.

Hi Cup. I can understand your annoyance at not being told about the various sessions. It would have been tactful if they had let you make your own decision. I did take my DD to baby massage and music for tots sessions when she was little - but only because they were run by a friend of mine, so I felt safe there - I don't think I would have been strong enough to go if it had just been sessions run by a stranger.
Try not to think about the future now - just enjoy Bea in the present. I know it's hard. I sometimes think about what I will do with my life when DD is no longer here as the last 17 1/2 yrs have been dedicated to caring for her and I haven't worked for 12 yrs. My DS is now 15 so really doesn't need me much (except as a taxi service, running buffet provider and laundry fairy!!). Your DD's are still young and will need you loads for many years and maybe Bea will too - who knows!

Oh Cup, all your beautiful girls need you equally, in different ways, for different things but they all need their Mum.
I can totally understand the feeling of missing all the extra people you've come in to contact with, I get panic stricken every time there is talk of ds2 being signed off or moving on to an alternative service. Its like you are living in a parallell universe to the average family at the moment. Other families may go to the same shops, wear the same clothes etc but their babies needs & your experience bare no resemblance to theirs.
One day at a time Cup, I know its a cliche but you really only can deal with the here & now. You are coping with everything because you are Bea's Mum, because you dont have a choice & because at times like this the adrenaline kicks in & helps you through it.
Its good to be a listening ear at the hospice but make sure you find someone there to listen to you too.
As for the baby groups, give them a try, you never know who you will meet or what their experiences are until you try.
My biggest support when ds2 was much younger was the SN mother & baby group, all sorts of parents with children with varying disabilities.