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Original poster

Not borrowing trouble ahead of time, just enjoying each day with Beatrice.

1004 replies

cupofteaplease · 21/02/2012 22:31

Thanks to Thumbwitch for inspiring the title of this new thread. Smile

I will do my very best to minimise my worrying about the future as none of us know what it holds. For now, it's all about celebrating Beatrice's life today, every day.

As always, please feel free to follow us on our journey, and thank you in advance for the wonderful advice I am bound to receive from fellow parents, of SN children or otherwise.

Here's to a positive, uneventful thread!

OP posts:
drivinmecrazy · 16/05/2012 19:47

What lovely support you have got from the Hospice. So hard to ask the questions sometimes, but great to know you have a safe place to ask and hear the answers. Bea really was put amongst us to teach us all so much x

MNP · 16/05/2012 21:19

So glad it is sorted and the Hospice were able to help with tea and a listening informed ear.

Gah to uselessness of some folk and institutions.

5inthebed · 17/05/2012 16:25

Glad everything is sorted. The Hospice sound absolutely lovely.

Northernlurker · 17/05/2012 21:33

Thank God for the hospice indeed. Smile

Northernlurker · 17/05/2012 21:37

Also will be praying for your meeting tomorrow of course. For clear answers and new plans for our lovely Bea.

weblette · 18/05/2012 13:20

Hope the meeting with the anaesthetist has been positive Bea :)

Northernlurker · 20/05/2012 14:30

Hope you folk are doing ok this weekend

Original poster
cupofteaplease · 20/05/2012 20:23

Well, we had disappointing news on Friday. The aneasthetist was a lovely man so I totally trusted him when he said that Beatrice's mouth is too small, and her jaw is set too far back to easily insert a breathing tube. He also said he would have trouble putting up a drip as she has no accessible veins, and to put a central line in her groin, she would need more flexibility which she doesn't have due to her arthrogryposis. The biggest risk though is due to her oxygen requirement and damage to her lungs from the pneumonia and bronchilitus she overcame in the winter- he's not sure how easily she would come off the ventilator. Also, the pain relief medicines would also slow her breathing, which is a risk. We spoke with the consultant from PICU and she confirmed the same. The surgeon clarified that it would be open surgery and it is too invasive to be done under a spinal. So, all things considered, it was a unanimous decision that Beatrice cannot have her jejunostomy.

I feel pretty low about it, as it's a step backwards in our plans. Also, it reminds me that, however far we believe she has come, to the medics, Beatrice is still an incredibly vulnerable little girl. I manage to push that thought to the back of my mind most of the time, but things like this bring me back to Earth with a bump.

OP posts:
TCOB · 20/05/2012 20:43

So sorry the conversation was disappointing (though pleased at least he was a professional you felt you could have faith in). Bea is vulnerable BUT that makes her all the more amazing. She's a spirit strong above and beyond her physical challenges and whilst that cannot be picked up through any tests or measured through any examinations, it's the thing that means she is still here when so often the prognosis has been bleak.

bigbluebus · 20/05/2012 20:53

Cup, that is disappointing news, but at least the decision making has been taken out of your hands. Do you know where you go from here? Just perservering with the tube as it is I guess. But clearly that is not ideal as it keeps coming out. Could someone be trained up to re-insert it at your local hospital, to save you having to go to Oxford each time?
DD was very difficult to anaesthetise the 1st time due to her small lower jaw bone,(but has improved with growth) and has always been difficult to find suitable veins, but clearly Bea isn't giving anything away.
I don't really know what else to say, except I feel your pain. Hugs to you.

fhdl34 · 20/05/2012 21:39

I'd just like to echo what TCOB said, could not have put it better myself.

JustFab · 20/05/2012 21:42

I am sorry you feel low Sad.

Beatrice has amazed us many times before and I am sure she will continue to do so.

JessCartandahorse · 20/05/2012 21:49

((hugs)) for cup and Bea

youarekidding · 20/05/2012 22:01

What TBOC and BigBus said.

I'm sorry it was disappointing news.

(((hugs)))

Sidge · 21/05/2012 10:13

Oh bugger Sad

I am sorry cup - do they have any alternative options available for Bea's feeding?

MamaMaiasaura · 21/05/2012 10:25

cup sorry that it wasn't good news on Friday. Bea has done so amazing and come so far inspite of medical opinion and I reckon she'll keep amazing everyone. X

Original poster
cupofteaplease · 21/05/2012 13:36

Had to call 999, respiratory distress. In HDU. Bea is sleeping, I feel pretty low. I want to take us all away from this for a short while and enjoy being with Beatrice in a sunny meadow, far away from the machines and tubes. Playing with her and her sisters like the family we should have been. I dreamed about her being NT last night, but then I woke up and remembered all over again that I lost that baby in September. Why am I feeling like this? Why so delayed, when I love her so much just as she is? What the hell is wrong with me? I can't lose her, I just can't.

OP posts:
JustFab · 21/05/2012 13:46

Nothing is wrong with you! You are a very very loving mother who has been handed a really difficult time but please remember we are all behind you even if we can' do anything we are thinking of you and praying and wishing you all you need. I wish there was something I could do to help. I just don't know what to say.

CMOTDibbler · 21/05/2012 13:49

Love and thoughts with you all Cup.

You feel like this as you love her. Both as she is, and as she might have been. Theres nothing wrong with you at all.

Four4me · 21/05/2012 13:52

Oh lovely, massive hugs. There is nothing wrong with you. These thoughts and dreams are all part of you brain and subconscious making sense of everything you are going through. I wish there was something I could say that would make you feel better instantly. She is a lucky little tea cup to have you as a mummy, but for her gain you have to go through this rollercoaster journey. We all think you are amazing and will continue to be so.

Xxxxxx

latedeveloper · 21/05/2012 13:57

Dear Cup

Please be kind and gentle with yourself. I hope so much in a week or two you will get your wish to sit in the sunshine with all your girls.

It is impossible not to think about what should have been - it happens to all us parents of kids with extra needs even when those needs are fewer than Bea's.

I think it is actually a necessary part of the grieving process - a series of smaller but still painful reality checks designed to puncture for a while our denial of how sad we feel and prevent that denial growing too big and overwelming us.

hugs

OhDoAdmitMrsDeVere · 21/05/2012 13:59

There is nothing wrong with you my darling.
I am so sorry you are having to put up with yet more hosptials, more intervention, more bleeps and alarms and needles.

ITS NOT FAIR. It is not how it should be.

Hold on tight dear cup and love to your beautiful, precious Bea x

NightLark · 21/05/2012 14:04

Your sunny meadow sounds beautiful. I'm sorry you can't be there with all your beautiful girls. Hold on.

out2lunch · 21/05/2012 14:27

sending a big hug x

DottyDot · 21/05/2012 14:57

Well I think we're now all picturing you all in your beautiful sunny meadow, which I know isn't the same but you are brilliant - giving us all this image that means we can all see you there in the sunshine with your girls. Hold on Cup and we're all holding on with you xxx

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