Making hay while the sun shines and always adoring Beatrice.

[cupofteaplease]

I have chosen the thread title this time, because current circumstances means the sun isn't always shining for Beatrice at the moment. Indeed, she is currently in hospital in a fair amount of discomfort. However, when the sun does shine, and we have bright and clear days, we pack in as much as we can.

When we brought Beatrice home from SCBU, we had the consultant's words ringing in our ears, 'Take her home and make some memories.' I feel confident and proud that we have made a treasure trove of memories, however long Beatrice's life may be. She continues to be surrounded by so much love and adoration from her family and I feel this love has helped her to thrive.

During the difficult days, such as these, we pray hard for peace and calm, and for a quick resolution so we can take our darling girl home and make even more precious memories with our beautiful Beatrice.

As with all other threads, same rules apply , read if you want to, post if you can, but above all, please spare some positive thoughts or prayers for Beatrice.

Cup - you are amazing. You have come so far and learnt so much and you have kept Bea going against the odds and in spite of the doctors' doom pronouncements.
You have even managed to go back to work - amazing! Many people in your situation might not have been able to cope with the divided requirements on your time, but you have.

However, there will be times when you have to devote more time to Bea than to work and this is one of them. This makes you a good mum who knows where her priorities lie.

I fully understand you not wanting to turn your home into a hospital environment - but rest assured, if the hospital thought you were there unnecessarily they would have sent you home again. They treated Bea in hospital when she needed it - as they should have done.

Hospice staff have to deal with end-of-life stuff all the time and so they do probably talk about it more easily - if they were as affected by it as the families, they wouldn't be able to do their jobs. However, they are usually very kind and empathic people and would probably have meant to reassure you, not criticise.

I agree that you should apply for more respite care - you should have some kind of case worker who could help you do the forms.

Stay strong - you have come so far, further than you probably ever imagined you would be able to - and you're still standing. That's an achievement! Be proud of yourself. (((hugs))) x

totally agree with what thumbwitch has said - bea's progress is a moveable feast and the difficult thing is you will have to constantly re prioritise - really really hard with everything else you are coping with i know but this is how it is.you are doing great as everyone else says.don't be too hard on yourself but i agree that although work is a kind of respite bea will always come first.keep on going x

I meant to say that I can really understand your threshold about when to go to hospital. Bea's situation is so complex and her condition can change so fast that of course you would want to be where there are professionals and machines and people to advise you. I reckon I would be knocking on the hospital every day in your shoes.

Cup, that must have been very distressing for you. It brings everything into focus, doesn't it?

I used to work with patients post-stroke, and lots of them had taken the decision not to have ventilation or iv antibiotics in the full knowledge that the implication was that it would probably be a chest infection which took their life.

I may be off-base here, but I'm sensing from your post that perhaps you're not actually ready for that reality yet? As if anyone could be. But what I mean is, that if Bea was to develop severe respiratory distress, are you able to accept that aggressive intervention (ventilation, iv antibiotics) will not be given?

If you're not, then you need to have that conversation with the medical team, even if it is to go through their reasons again, and get clarity.

In that sense, hospital will do nothing for Bea, because what will they do? Nothing that you can't. I suspect though, that the reassurance you are looking for is more towards the 'they'll be able to do something to make her better', which, if they actually won't, is something you need to know very clearly.

You are amazing. Really you are. But I don't think anyone was being 'kind', more that they were being sensible. Hospitals are places full of sick people. Vulnerable people are best out of them if possible, and if they aren't actually going to do anything you wouldn't be able to do at home, then it's not wise or safe for Bea to be there.

Lougle I've read, and re-read your post and I am confident that you did not mean to offend me, but you have pretty much summed up how I feel the professionals see me- too naive, in denial or stupid to realise that Beatrice is going to die of respitory failure. Trust me, I do understand this, I just don't feel that it is her time to go.

You ask, 'if Bea was to develop severe respiratory distress, are you able to accept that aggressive intervention (ventilation, iv antibiotics) will not be given?' Aggressive intervention will not be given because dh and I have agreed and decided it should be so. On 31st January, I held Beatrice as she took just 4 breathes per minute. I said goodbye to my baby and told her she could fly away if her body was too tired to carry on. I instructed the consultants not to rescusitate her should her heart stop. I prepared to kiss my darling girl for the last time. Miraculously, she chose to hang on, and has come on leaps and bounds. But of course I understand it will be a chest infection that kills her.

'In that sense, hospital will do nothing for Bea, because what will they do? Nothing that you can't. I suspect though, that the reassurance you are looking for is more towards the 'they'll be able to do something to make her better', which, if they actually won't, is something you need to know very clearly.' Each time I have taken Beatrice to hospital with a chest infection, they have given her appropriate antibiotics and pain relief. Things I could not have done at home. Just because Beatrice is life-limited, should I just make her suffer next time she gets ill? The doctors can't fix her or give us back our future, but they can treat an infection that stares them in the face. And why shouldn't I want that for my child? I've had people spout 'quality of life over longevity' at me several times. How heartless do they think I am? That I would keep my child alive for my own benefit, to save my own heart from crumbling, and allow Beatrice to suffer? It's so insulting!

My first thread here was entitled, 'A life filled with love is a life worth living', and nothing has changed. Her life is still filled with love, new experiences, progress, peace and tranquility and above all, is pain-free.

I feel like I've spent the last few days defending myself and my decisions. Beatrice is still here, still improving. Can't we raise up our hands and be thankful rather than doubting and fearing for the future? I've been living off my nerves today, really feeling sick.

She was given her Sunbeam chair for home and I took her to Conductive Education class, and you know what? Both things were spoiled by the negativity of others that I am carrying around, and I've no idea how to shake it off.

Lougle Once again, I know you were not meaning to upset me, and I hope I have not offended you in return, but the points you raised in your post have given me lots to think about and reply to.

Cup You never cease to astound me with your strength and your common sense.

Ignore the naysayers and you keep on fighting for Bea. With you in her corner she can achieve the impossible.

Cup, I'm not offended in the least, and I'm sorry that your reading of my post was that I think you know nothing. I'm also sorry that my post made you feel criticised, not supported, as that certainly was not my intent, and not the message I wanted you to hear.

My thoughts were actually that it is easy to have a decision pushed onto you when you aren't ready for it.

Perhaps you have had a conversation with your team as we have just had, I don't know. But to feel that you don't want to be at home with a very poorly Bea is perfectly legitimate, so I wonder if the team is also mistakenly getting the impression that you were thinking of more aggressive intervention when actually you would be seeking more support.

Finally, of course we should be celebrating today, I never suggested otherwise. I was responding in particular about the conversation you had about the most appropriate setting for Bea when she is ill.

Cup - I don't know what to say but what I do know is that you will always put Beatrice first and you would never ever let her suffer for any reason at all.

Sorry, one more thing. You said that the doctor said you could have home antibiotics and even morphine, so I didn't for one second think Bea should suffer just because she has complex needs.

Hi Lougle- No I didn't think you were suggesting she should suffer. I know they have said we can have antibiotics and morhine at home, my fear is having to decide how much to give and when, without the advice of a professional. I don't feel comfortable doing that, and for that reason, I would rather Beatrice was in hospital (unless of course a consultant wants to come to the house to advise me ) I'm just going on what has happened in the past, so far they have been able to clear her infections. Perhaps that won't always be the case, but I will always try to get her help, if I feel it is in her best interests.
I wouldn't allow myself to be pushed into making a decision about her end of life plan, I feel quite sure of that.

Perhaps I shouldn't have posted today, I am feeling very delicate, my stomach is in knots. I have probably over reacted and misinterpreted- it wouldn't have been the first time! Sorry.

(((((Cup)))))

Bea has as much right to be in hospital as the next child, you shoud not have to justify why you want her there.

Cup, don't apologise, least of all to me. Do tell them, though, in words of one syllable, that this is not about whether you can 'cope', this is about making sure that Bea has the right treatment and the right amount of treatment at the right time. As amazing as they are, they sometimes forget that they are dealing with people.

I've never read this thread before so you won't know who I am and I hope I am not out of turn by posting here.

I read your posts from today about feeling like a burden, and not coping.

For the first couple of years my youngest son had many trips to A&E and overnight stays in Childrens Ward due to an immune deficiency.

I regularly bumped into the same parents who had seriously ill children with life-limiting illnesses, who spent a lot of time on the wards.

I never, ever once looked at them and thought a negative thought. I didn't look and think 'why don't they care for their child at home', I thought, and still do now 'wow, if they can cope with that, then I can cope with this'. I never felt they were wasting NHS resources - I felt proud to be part of a nation that had the facilties and the heart to help those children.

And I am not the only person who thinks like that. Lots of people do. For every negative thought you are having about yourself there is someone looking at your situation and thinking the exact opposite.

I hope that makes sense and isn't too rude of me to butt in - my heart just ached for you reading your posts today.

Hugs Cup

I feel you hit the nail on the head in the statement that they are used to caring for very ill children whereas as a parent you are not and they need reminding of this very important fact.

I hope the rest of the week is better.

We would love to see Beatrice in her new chair, she brightens up many a grey day.

Cup, I am thinking of you. No advice to offer, just support x

Hope you have a better day today cup. Hugs.

dont ever doubt yourself & dont apoligise for sharing your feelings on here.

Take a peek in your bedrooms, your beautiful family is there, happy & content because of the wonderful parents that you are.
You are human, you are allowed to have days where you feel the pressure of the additional caring & heartache that Bea's condition has bought. Especially when you are not getting the support & respite you so need.

Give youself some TLC & dont let anyone shake your belief in yourself x

Massive hugs cup have just caught up. Quick post as must get the gang ready for school run.

It is not about coping or not coping, it is about getting the right care and support for both Bea and you (and the family) at each individual turn of events. It is sometimes easy to misinterpret what people ie the hospice team are thinking behind your back when you are extremely vulnerable. I'm sure they think that you are doing amazingly as we do.

Keep roaring girl. I think you are doing a fab job and that is all that counts . Off to chivvy four reluctant children down the road to school....

It's about wanting the best for Beatrice isn't it? The best care when ill, the best pain relief possible, the best advice and knowledge from trained medics.

You know you are the absolute best thing in Beatrice's world, but you want to bring in experts to support when she is unwell. Not because you doubt your care or are unrealistic, but simply because you know there are experts down the road who can make confident medical choices and why ever not use them?

You adore Beatrice, it shines from every word, and she is utterly loved. Love is to want the best for someone. Don't let this get you down if humanly possible, it's another angle on the constant theme of loving Beatrice whatever comes.

You will know when it's right to take her in, and when it suits her better to stay at home with you. You will know when you want to take on any more treatments at home, or none at all. She has you with her - which building she is in doesn't matter when she knows you are near.

Stick with your instincts; they are protecting all your family. It's an honour to follow Beatrice's journey on here. x

I too have been away for a bit and reading through have been beaming with joy and radiating anger on your behalf as I caught up.

Firstly and I hope you don't mind me being blunt but who gives a damn what anyone else thinks? I don't for a second think they are - but if they are talking about you then bloody well let them! Please don't let it change a single thing you are doing. Take her to hospital to get the support you both need. You've got Beatrice through some incredibly tough and dark times, you've saved Beatrice from I'll-advised doctors with your love and knowledge and you know when you and beatrice need more - no one else has any right to suggest that decision be taken out of your hand.

I think it is important to know your own comfort limits. My ds has some learning difficulties (nothing compared to what you are going through) and I met an amazing therapist yesterday who said to me "remember that you are his mummy not his therapist" and it's true, some times you can't do it all and you are right to ask for help when you reach the end of your mummy abilities (whatever point that is).

Secondly, you are not a failure. You are the complete opposite. I remember your first thread in the bereavement section and you didn't know if Beatrice would make it through the night. Today, almost 10 months on you have a baby girl that is growing, smiling, kissing, eating petit filous (sp?) and costa hot chocolates and raising two other daughters who are loving, grounded and a credit to you and dh. And dealing with all the emotions that come with your brothers illness (how is he btw?). This is not me trying to be nice and make you feel better, it's a fact. We often tell you how amazing you are and I know it's not always comfortable for you to read but on a site like mn where so often people are jumping to fight and criticise others, you must be doing something right for everyone to praise you so.

So you missed a day of work-doesn't make you a failure in my book. Especially when a colleague of mine had two weeks off with her little boy because of an ear infection and he's perfectly healthy normally. So you missed a day, so what. Doesn't make you a rubbish teacher / mother etc.

Thirdly - then I really will shut up and take myself off to bed. Please give that gorgeous little girl a hug and kiss from us then go and make yourself a massive cup of tea and get some chocolate and give yourself a well deserved break. I hope you are able to access more night support and that the attitudes of others don't set you back on what I feel has been a really great few months of progress for you all.

If you need anything we are always here to listen and help in any way we can.

I guess I'm not able to see her condition as serious because I see her growing and making progress. The end seems so far away, I get scared when others feel differently. The hospice talk about end of life so easily, it breaks my heart.

none of the above reveals a failure to me. Human yes, loving yes, caring for your child and wanting the best for her .......yes.

Yes staff in hospice do talk freely about end of life. They do it every day and sometimes its easy for them to forget that its not easy for the families as they are human too.

As you say, its going to hurt or break your heart when you hear these things, because you know your baby better than anyone else. You want what is best for her and you are doing exactly that. You know in your heart what makes Bea happy and contented and your instinct tells you when she is poorly. She has grown into a beautiful baby and that is down to you x There is no hard fast rule on how to parent, treat or care for a child. Wether to take your child to hospital or not is a free choice as the guardian and mother. Personally I think you are an outstanding Mum.

I havent lost a child but I lost an Uncle who was my best friend and I cared for him for years. Tbh I knew and he knew that he was seriously ill and I didnt need reminding with the puppy kind eyes that it was nearly the end. It felt that they were rushing ahead, predicting even which didnt make me feel like a failure it just made me angry. It wasnt the end, he lived and I mean LIVED for another 18 months and it was a happy time for him regardless of the doomsayers. He knew when he was tired and the time to sleep was right as did I.

I guess I am trying to say is even though they have very best intentions at heart try to put to one side what people say, keep going as you are, you are not a failure, you are doing it all right, she is your baby and you and she will know together. Whatever will be will be. :) xx

Cup - remember when Bea was in A & E and the staff didn't really know what to do, then you cuddled her and talked into her tiny ears and she calmed? The doctor who said something like let mummy do her magic?

That is you, that is. YOU did that magic. YOU did what you knew your DD needed. YOU.

Cup I am so sorry that you are having a tough time at the moment.
I have recently come into contact with a parent who lost a young child to Cancer 12 months ago. She is still very bitter about the way she and her family were treated by some of the 'support' services and how they let her down in their hour of need. She is using her experiences to feed back to the professionals how things can improve for others in their situation in the future - but whatever she does, she can't turn the clock back.

So my advice to you is to continue to fight your corner and do whatever you feel is best for your family. If they want you to administer more drugs and O2 at home then they need to provide you with the professional back-up at home to do so - whether that is by way of an 'out reach' team from the hospice or the CCN team in your area. They cannot insist that you do it without support, if you do not feel comfortable. Otherwise Bea needs to either be in the hospice or hospital. It is you who is living this - not them. The only way they will know how you feel, is if you tell them. It is great that modern technology and care in the community means that our children can spend less time in hospital but they need to remember that we are just parents with no medical training or qualifications - and even nurses have to do a 3 years degree to qualify now - not to mention the length of training that doctors do. Perhaps they need that spelled out to them!!!

I hope things improve soon.