A thread for Beatrice: Because a life filled with love is a life worth living.

[cupofteaplease]

We are back from the hospital, Beatrice has been fed and dh has gone to work. So I have time to sit down and start the first post about the journey ahead, which I hope will be a long and happy one.

Beatrice was born at 36 weeks weighing 3lb 14oz. After an initial diagnosis of Edward's Syndrome was proved to be incorrect, an MRI and genetics tests were carried out and today we have some initial answers.

Beatrice's brain is very small and underdeveloped. The consultant described it as 'simple', because it does not have all of the detail expected in a typical brain. She explained that we should expect Beatrice to be severly disabled. She is also very small and delicate, and at risk of catching infections. They anticipate that she may suffer from fits. They have told us to watch out for her breathing during feeding, as her muscles are weak. They also commented on her shallow breathing pattern. They believe the problem was caused by a gene that both dh and I must carry, but they haven't got the answers yet and admit that they may never know. They have ultimately described her condition as life-limiting.

However, we have left the consultation feeling at peace. We don't know what the future holds, but realistically, neither do the doctors. We have great faith in Beatrice, she amazes us every day, and she is surrounded by so much love from us and her wider family.

I would like to use this thread as a space to jot down how she is doing, and how we as a family are coping with life. If anyone wants to check in and follow her progress, please do. We couldn't have got through the past 2 weeks without MN.

Well done for standing up for Beatrice's right to be in a safe germ free place while you waited.

Maybe it is time for a cards on the table meeting with Dr Doom and a request for a new consultant to take charge of Beatrice's care? I could be cynical but I wonder if the Doctor is saying it can't be until January as she doesn't think Beatrice will still be here. Ask her why she has to wait until then if it is something she needs.

Yes, PALS are there to mediate and get things moving for patients - worth a try?

I don't think I have the energy to deal with PALS.

Had a big bust up with dh and now I'm feeling rubbish. I have organised for the older girls to be collected from school, looked after over night and taken to school in the morning. All I asked dh to do was go home and fetch me and Bea an overnight bag. You'd think I'd asked him to move heaven and earth

He brought the bag back in and Bea was sick again. They told me I'll have to continue with this fluid every 15 minutes until...? Nobody has said, there is no plan in place because apparently the doctor didn't pass on any info when he went off duty. Wtf?! And with that dh went home because he needs to sleep before going to work at 2am. So that's Bea and I against the world...again.

Dh text me after leaving saying that nobody cares about him. I do,but I feel I bear the brunt of worrying about the children, which doesn't leave much energy for dh. At least I have MN, he doesn't

Aw, cup, that's miserable. My dh has been a bit "what about me" even through my recent cancer diagnosis (I'm doing really well btw). Dh relies so much on me holding the home together and making him feel the world is okay - meal on the table, ironed shirts in the wardrobe etc - that he goes to pieces over the smallest interruption in his nice, comfortable routine. Bless him.

Can one of your sisters come and support you there this evening? A friend? Do you want to see if there's a Mner around? Keep posting anyway. and

I am sure it is really hard for your DH, cup, but he has to come after the baby and I am sure he would agree if you asked him..

Hi cup, hope you're doing ok and someone has given you more of an idea what they expect to happen tonight. Are you realy supposed to feed her the dioralyte yourself, every 15 mins all night How are you supposed to maintain that level of awake/functioning all night??
I'm sure DH knows that what is happening is simply everyone doing their best to cope physically and emotionally with what you are all going thro - but he doesn't have MN to vent at, so big hugs all round really.
Thinking of you all
x

Men eh? The other child. Sorry you are struggling with everything, just when you need the most support. But you have already felt the power of Mumsnet Cup, and we are all behind you, and with you, and holding you both.

Much love and I hope Bea feels better soon.

Cupoftea, which hospital are you in? Feel free to pm me. Just wondering of your close by, might be able to pop in and keep you company for a little while, only if you want

Thanks all, and thanks for the offer Lisa, but Bea is being discharged now. They said I can continue the dyrolite at home until the morning, then try milk. If she is sick on milk, bring her back in.

So I've had to call my sister and ask her to collect us from the hospital. Thank God she agreed.

cupoftea how much sleep are you and your DH getting? When you are both worried and tired it will be difficult to communicate with each other. What you are all going through is one of the most stressful things that can happen to a family. The future is uncertain and it must be very stressful when Beatrice is in hospital. I hope you can get some time with your DH just the two of you to talk things through.

Is it possible for DH to get paid/unpaid leave to cover for when the school is shut over Xmas and to help you and spend more time with Beatrice and your other girls? There are some employment leave provisions for parents and carers. I will look them up for you.

I hope Bea gets hydrated quickly and cup that you can get some sleep tonight even though it will no doubt be on one of those chair beds next to Bea.

Oh Cup! So sorry that DH is feeling all "poor me" - he needs to pull himself together and realise that he really isn't the person most in need of care at the moment, silly man! So :( though - it's the last thing you need at the moment.

PALS, btw, shouldn't need much energy to deal with - they are meant to be on the patients' "side", as it were; certainly the ones we dealt with over various family members hospital issues were never hard to talk to. They usually have an office in the hospital, you should be able to just drop by and have a chat. Dr. Doom needs hoiking down several pegs - she's being unnecessarily unpleasant about poor Bea's needs, IMO. :(

I hope the dioralyte works for Bea and she feels better, and that you get some sleep. xxx

I am just dropping in to send hugs - for you and Bea, and for your DH.

Hope Bea is better again soon and that you and her settle at home.

Wishing you all strength to get through the night.

It must be a good(ish) sign that the hospital has let Bea come home, yes?

When you see the GP on Weds can you say you need some knowledgable person to help you get the right treatment for Bea, some sort of advocate from PALS or a charity someone who knows how to kick ass

Lots of people thinking of you and praying for a good outcome. xxx

xposted , glad that you are going home.

If you google CAB adviceguide there is a fact sheet for working fathers which gives details of the right of working fathers to request flexible working (does not mean it will be agreed) and the statutory right to take unpaid parental leave. There may also be something in your DH's contract regarding paid parental leave?? My DH threw himself into his work but he could not escape the stress of the situation.

I'm sorry it's been a rubbish day, FWIW I often felt in the early days that I just didn't have the energy to maintain a relationship with DP, Bella was just so all consuming and DS needed me too. I was emotionally exhausted for the first year, completely drained and DP wanted attention/affection when I really didn't have it in me. It was very hard but we're in a much better place now.

If Bea is tolerating dioralyte fine then I personally wouldn't switch straight back to formula, we do 75/25 dioralyte to formula for a couple of feeds, then 50/50 and then 25/75. I hope Bea is ok and you can both get some rest tonight :)

Well done you for standing up for yourself re the waiting room!! I am very proud of you x

As for Dr Doom - surely there's another consultant you can get trf over to - that woman is such a bitch. If Bea would benefit from the B now she should have it and if she wouldn't Dr D should bloody well explain why.

As for DH - you need to talk to him and ask him why when he was the one going home to his own bed and once again you were the one (potentially) spending the night awake, alone in the hospital with Bea after having organised care for the Big Girls - that he is the one no-one thinks about?? Selfish. I know it's hard on all of you, but it's certainly not harder on him that you, not by a long shot and he bloody needs to appreciate that.

Love Bea's cinema experience!! I hope you are keeping her baby book updated!!

I, like many, have watched your thread since Bea came into OUR lives. What has struck me is that you have evolved from a 'regular' Mum into a 'SUPER' Mum in such a short time. What you have had to learn and feel is what many (if not most) of us will never have to encounter. The way you fight for your daughter and family is incredibly courageous and gives us all a brief insight into what it is to truely love a child. Any one of us could be you in the future, and what you teach us now is invaluable.
All of your children are blessed to have a mother like you. You have learnt so much in such a short time, but have taught so much more. If this is your legacy I cannot think of a better one.
Beatrice (and MN) are so fortunate to have you.
You have learnt so much but continue to teach us so much more.
I so look forward to your updates, and wish you so much peace in the future X

Beautiful post drivin
Completely agree. Cup I have older children than you and I am learning so much about motherhood from your experiences. Bea was sent to the right family. I am sorry you and DH are both worn out and it is hard to pace youselves as you don't know when each next crisis will come. Men do sometimes have this radar for wanting more attention and making everything worse.
Sending love and strength and so proud of you for taking on the waiting room issue.

Cup, I am sorry to hear that there has been another hospital visit for Bea.

Can I suggest that if she needs to stay in again that you think about taking some "time off" and go home overnight? I KNOW it is hard as I have been there myself (and I don't have other DC's) but you need to get some sleep.

Thanks so much for being there for me last night whilst I was posting in hospital. I always feel less alone with MN!

drivrin Thank you for your kind words, you made me ! I'm not entirely sure what I have taught you, as I am just making it up as I go along but thank you for the vote of confidence

Bob Thanks for the advice on using dioralyte, I did what you said and introduced the milk back in in those ratios. Fingers crossed, she has kept down the first 100% milk feed for 2 hours now. She seems uncomforable, but it's stayed down.

starfishmummy I don't think you get the choice to go home? There are housekeeping notices up about belongings and visitors etc and one of the points is about parents staying with their children as much as possible. I think that's why they sent Bea home last night, as one nurse had said the night nurse would have to administer the dioralyte through the night (every 15 mins) so I could sleep outwith feeding times. Then I was told there was only one nurse covering that part of the ward and the next thing I knew the doctor popped in and said to take Bea home and do it myself. Of course I didn't mind doing the administering of dioralyte, but I did object to having to wait around to be discharged and my sister finally dropped me home at middnight. I'm so tired today [yawn]

I cancelled an ultrasound for Bea's hips at the hospital this morning as I didn't want to take her out in the cold when she was still not quite right.

I have an appointment with the GP tomorrow to discuss my antidepressants, so I mught ask then about how to go about changing consultant. I have lost any shreds of respect I may have had for her after yesterday when she wandered straight past Beatrice's room and didn't even pop her head in. Now I know she has loads of children on her caseload, but she was the consultant on call yesterday, and Beatrice is well-known to her due to communication with the CNN. I find it unbelievable that she wouldn't even want to ask after her. Miserable witch.

Glad you have had a better day cup .

It might be helpful to skim back through all both of the 'Bea' threads and note down the 'events' involving the delectable Dr. So that when you have a chat with the GP or PALS (when you are ready) you have all the facts straight. I know I always go blank in important (and emotional) conversations and then get very cross with myself afterwards if I have missed something.

Hope the GP is helpful. Take care x

Cup I hope your appointment goes well tomorrow and you get help for both you and Bea.

Let's hope Dr Doom is doomed!!

Another hoping your appointment goes well, want to echo so many others here to say your three gorgeous girls are so lucky to have such an amazing Mum. Thinking of you all.

I agree with Four4me, Cup - write down what you need to say to PALS and the GP so that even if you get upset or flustered, you still know what you need to say and why. I'm sure they will be sympathetic but even that can be your undoing sometimes!! So have it all down in writing and then you'll know you've got it all covered.

She is a miserable witch, you're quite right - perhaps she doesn't like being proven wrong - either way, she's not the right consultant for Bea.

Sneaky (((hugs))) for you all. xxx

So pleased you were able to be a tiger mummy when asked to go to the playroom. Small victories will add up.

Hope you get on well tomorrow.