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.

Checking in to wish all the Teaset a Happy New Year, and to say that I am thinking of you all and praying for you each day. Thank you so much for all the lovely photos too, Bea is so beautiful and yummy (but I am sure you know that already ).

Hi

Thanks for the supportive messages. Sorry for taking so long to post again, life seems to be on top of me a little at the moment.

Right, I left the thread last Tuesday and was feeling quite down. Wednesday, the nurse phoned and I made it clear how cross I was with the consultant. I said Bea was sick and needed help. The nurse said the consultant hadn't seen the results of the barium swallow yet so couldn't help, and I went slightly mad!! I said I'd already seen the results, so she needed to pull her finger out! Later that day the nurse came to our house with a prescription for domperidone, zantac and carobel. It only took 15 weeks to get the reflux meds, but finally, we got there. And she's only been sick once since!

The hospice also rang on Wednesday and said they'd contacted the consultant's secretary, who faxed through the referral letter. So we have an appointment with the hospice doctor tomorrow.

Thursday, Bea was not herself at all and by chance, her feeding tube came out so I took her to the children's ward where they passed a new tube and a different consultant came and checked her over. She said in her opinion, Bea had aspirated vomit again, so she put her on a course of augmentin antibiotics. That consultant seemed lovely.

Friday, I took Bea to the orthopaedic team who changed her cast for the last time . I was sad when I weighed her as she had lost 7oz in a week with all the sickness, but at least she has the meds now. They measured her for her leg splint and we got to choose a design for it- we went for stereotypical white with pink and purple butterflies . I told them I wanted to take Bea out of her harness for a while to allow me to manoeuver her into different positions to sleep, in order to clear her chest and keep her comfortable. They agreed, and so she now has a fortnight free of her harness which is bliss.

We had a lovely family weekend and my sister came to babysit for a few hours on Saturday night which was bliss!

Yesterday, I took Bea to the GP for eyedrops as she has conjunctivitus. He listened to her chest and said it was still wheezy.

Today, the physio who we see every Friday came to our house to do some movements with Bea's arms and upper body.

So that brings us up to date! Mostly good news, lots of developments (and I'm quite proud of myself for the role I played in getting things done... even if I do say so myself!!)

So tomorrow is a big day with the hospice, I'm not sure what to expect really, but how bad can it be?! Wish us luck!

Lots of good news there. Thank goodness Bea now has the medicine and has stopped being sick. What a shame about weight loss, though hopefully now she'ss put it back on. good on your sister giving you a much needed break. Very best of luck for tomorrow x

Cup, sounds like you've done really well in the face of a lot of lackadaisical attitude! Any chance of changing her care over to the nice consultant? I think it would make your life so much easier if you could manage that.

Good luck at the hospice tomorrow - they are a mixed bag of feelings, IME - lovely places but still... However, the doc will hopefully be very nice and sympathetic and fingers crossed you have no need of it anyway! So glad you have the right meds for Bea now - praying that she starts to put weight back on now and gets stronger again.

You really are an amazing mum you know - be very proud of yourself xx

So nice to see you sounding much more upbeat and go you for insisting they sort it. It worked! Hopefully with the new meds Bea will really gain some weight :)

Glad you had a few hours out on Saturday and wishing you the very, very best for tomorrow. Will be thinking of you all.

Im pleased to see your last update.
Sadly for many SN parents yor story isnt new. You do have to fight and push for everything thats needed. I have sent any a snotty email in the past few years.
Bea is doing wonderful and its because your fighting for her every need. Keep strong

Well done you for kicking to system up the bum. Glad the meds are working and hope she starts to put the weight back on now. Will be thinking of you tomorrow.

You are one amazing mum. X

Glad things seem to be going a bit better cup and that you are becoming assertive!!
Good luck with the appointment with the hospice doctor tomorrow - I'm sure it will be fine and they will be lovely.
In al the years I've dealt with our hospice, I have always found their attitude to be a breath of fresh air compared to the NHS. They really understand what families go through and are there to help. Hope it goes well.

Lioness with her cub . What a protected little cub she is too.

Go Cup, go Cup! You are absolutely right to feel proud of yourself, it's a bout time Dr Doom got her arse kicked. It sounds like you have a positive week, am sure the reflux meds will help Bea gain weight now

I will be thinking of you tomorrow, I hope they treat you all with the respect and dignity you deserve (and am sure they will x)

Cup of Tea? Cup of Trinitrotuluol more like! You go girl!

Well done on driving things forward and best of luck with the hospice.

How are your other two DDs?

best wishes for 2morro xx

Thinking of you today. You are doing so, so well.

Good luck at the hospice, Cup

Best wishes x

Good luck for today cup. My dd goes to a hospice, and I remember being nervous about our first visit. I needn't have worried, it really is the most warm, kind, positive and friendly environment. I know that when she/we are there we will be really well looked after :).

You're doing brilliantly :).

hope you have a good day.

We got respite from a hospice too; the staff are so warm and friendly. They really know their stuff and have helped me source equipment etc as they know everyone at the CDC etc.

Well we visited the hospice today, and I'm so glad we went. It was a lovely place filled with positive staff. The consultant was amazing, she spent time finding out about Bea and really looked at her and 'interacted' as much as you can with her. She even brought lunch to dh and I! The main nurse was fantastic and listened when I told her about Beatrice's arrival. We go for our first stay as a family in a couple of weeks.

But tonight I've been crying for the first time in a long time. I don't know why, or who I'm crying for. I'm tormenting myself by imagining the older girl's faces when the time comes. When Beatrice was born, I remember dd2 suddenly looked so big, I'm dreading the day when she looks small again.

If you've lost a child or sibling, how do you answer the question of how many children or siblings you have? Dd2 loves calling herself a big sister, what can I tell her to say?

Hi again. Just flagging up the national charity Sense. We mainly support children who are deafblind but we have another group of children we love to play with as long as they have a single sensory loss and additional needs!
If you feel it would be a useful contact for you you can email [email protected] and they will put you intouch with your nearest support worker. There may be lots of questions around Beatrice's visual needs that need unpacking and that is what Sense does best! :-((( wish I lived near you Beatrice is such a darling!!

Cup my love - she's still with you right now and you know we're praying for a miracle. I don't know what that will look like but I believe with everything I've got that we will see it. Your family and your other dds most especially will be part of that and they will be ok. You will be ok and you will always have Bea in your heart, always. Come what may. You are her mother and your dds are her big sisters and they are right to be so proud.
It's good today was so helpful but yes it's about care for a baby with many difficulties in her path and with a condition which is life limiting. Hospices are often thought of. I guess, as being about end of life care - and of course that's important but what the hospice movement is most especially about is LIVING. You've done a lot of living with Bea since she was born and there's more to do. Don't torment yourself with fears because the future is unknown. The only thing I know for certain is that Bea will never ever be lost to you.

Bugger - some tears here too now.

Cup - you can always go to Winston's Wish for advice and materials on how to handle bereavement for young children if you want/need to.
But even if the worst were to happen to Bea, your DD2 would always be a big sister - she just wouldn't be able to see her baby sister any more - but she'll never forget her in her heart, none of you would.

If/when the time comes, the Bereavement board has a whole long-running thread of parents who have lost children who will answer those questions for you as well - but don't borrow trouble ahead of time, lovely. Unless you know that time is short of course. :(

Sorry, I feel like I'm being a little clumsy in what I'm trying to say - hope I haven't upset you any more. xx

Hi Cup, glad you found the hospice a pleasant experience. You are allowed to cry & maybe its not for a secific reason & thats fine.
My aunt (who lost her younger son) says she cannot answer the "how many children do you have" questions with a one word answer, even 9 years later it still requires a sentence or an explanation that she had two but sadly her son died.
For her & the family the childrens hospice was always a postive experience & often had answers & support that they couldnt get elsewhere. they were particularly good at supporting her other son & answering lots of his questions.
I guess your dd2 will always be a big sister but she will just answer what feels right to her, there are no rules.
take care x

Oh cup that made me proper want to reach out and give you a huge bloody hug. A relative had a stillborn girl and she always talks about herself as a mum of three, and her two boys talk about their little sister/big sister, she (the baby born asleep) is as much a part of their family as the surviving children. No matter what your girls are big sisters, that love for a sister smaller than yourself isn't something which will fade.

As for the sitting crying, are you looking after yourself? It is hard hard work looking after a baby with additional needs, not just the what might have beens but the emotional and physical energy that you invest in ensuring that your child gets what she needs. And my god you have had to fight to get anyone to listen so you are bound to have down times, are you having plenty of support for you too? What counselling are you being offered as a family?