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.

Hurrah for the excellent weight gain! Very pleased indeed that she's on the chart again - good for you, Beatrice!

The dummy while being fed sounds like an excellently cunning plan - definitely worth a go.

Re. stimulating reflexes, has anyone suggested doing any kind of movements with Bea's arms and legs? It may not achieve anything, to be fair but if her muscles are moved for her, it might just stimulate some neural recognition of the stretch and relaxation of the muscles, which might pass back to the brain - again, might be worth a go.

xx

Agh can't believe I missed this thread!!

Cupoftea I've just read it all with a big smile on my face - my god your girl is a total trooper!!! So pleased to hear that Beatrice is progesssing and gaining weight. Well I'll be checking in on this thread from now on and keeping fingers crossed that she keeps storming ahead. Go Beatrice :)

I echo what saffron posted, it's love and care, yours and the family that have helped the milk do it's best

Wow! Thats great news on Bea's weight gain CoT Really thrilled for you .

Brilliant news about the weight gain!

Thinking of you, DH and the three gorgeous little cups of tea. How is your weekend going? Have you been able to get out or has it been too cold (or even snowing!!!)?

thinking about you all, just caught up on the whole thread and feeling very moved, so so pleased your gorgeous little fighter has such a loving and supportive family (and network) around her

I too have only just caught this thread, and although I'm normally a lurker, I didn't want to leave without wishing you and your lovely family all the very best. She's a gorgeous little girl and you are very lucky.

CoT - :o at your comment on Bea's sisters - "loud as ever". As for Mr CoT, men are so very different to us and deal with things so differently, but he is a dad of 3 gorgeous little girls, a proud husband and I would guess it's probably important to his 'male pride' to hold it all together!
You are ALL amazing x

Hurrah for the weight gain.:)

Grand news re weight gain and the dummy/feeding thing is a very good idea and i know from some of the premmies i have looked after that scbu often give a dummy to stimulate sucking.

Beatrice has had another good day, she seems more alert at times. We saw the audiologist yesterday who confirmed that 'the apparatus' works, but she tested further back to the nerves etc and told us we can feel confident that she definitely has at least some hearing- that felt great.

We have been giving Beatrice a dummy when feeding but she kind of holds it in her mouth without sucking. I will persevere though...

Now, for the selfish part. A lady I know had her baby today and thankfully all is well with both of them. So why did I feel jealous? My pregnancy ended abruptly and those first hours after her birth were harrowing. I have never felt such emotional pain. Being told she might not make it through the night wad like having my heart wrenched from my chest. I just wish we could have had that snuggly newborn phase. Those precious cuddles after birth where you are totally in love, and you stare at your baby in awe and feel proud of yourself. I didn't get any of that, and I'm beginning to feel bitter. I wouldn't change Beatrice, I love her so much, but it's all so different to what I had dreamed of. And nobody thinks it can happen to them, but it happened to me, and I'm completely normal. Life is so strange.

Life is fucking unfair at times.

There will be people who'll say it better than me, but here it goes: you are grieving for the child and life you were expecting to have. It is a loss, made more difficult by the uncertainty around Bea's longterm health .
What you are feeling is normal and, in some way, healthy: if you had been through what you had to experience and just carried on without being upset, then there would be something not quite right with you.

You are at the start of a long and difficult journey. Really, do be very kind and gentle with yourself.
I think being aware how you feel is the first step to reconcile the reality with the phantasy iykwim.

I had 10 weeks of getting used to the idea that DS2 might die/be severely disabled before he was born at 31 weeks and it helped me to remember that whatever his problems were going to be, another woman's healthy baby would not somehow damage his chances of being ok.

Does this even make any sense at all?? In my head I know what I am trying to say... Sorry

About the missed newborn cuddles: that just sucks, I know it does.
See above: life can be so unfair

Wonderful news about Bea's hearing .

With the new baby (I CANNOT bring myself to even call it the 'selfish part' because it so definitely, categorically is not selfish) - how could you feel any other way? Please don't be cruel to yourself. Please. In my own pathetic way I remember being jealous of women who had 'good' labours (mine was crap but routine, mainstream, unremarkable crap - not even near the same realm as the issues you and Bea are facing). THAT was selfish and silly. What you are feeling is pain for Bea, for yourself, for the total randomness and unfairness and I cannot see how else a feeling, thinking human being could respond to wonderful news of a new baby than you in your circumstances. And please remember that you too have only just had a baby and are still all over the show because of that. You are a new mother, you have a precious new baby, but other people do have it much easier and it's impossible to know how much easier unless you have the experience you are living through. I don't often pipe up but I can't bear the thought of you beating yourself up for your feelings. You are amazing. People aren't just saying that to be nice. It is true.

it's great to hear that she is responding so well and hopefully the news will continue to be good for you.

and you are right - life is strange but you said it yourself, you wouldn't change Beatrice. It's only natural to feel jealous about missing out on the cuddles but it's like the old prayer (I think it's a prayer anyway) serenity to accept the things I can not change, courage to change the things I can and wisdom to know what I must accept. Sorry if that sounds religious (I'm not) but I always think of these words as just being wise.

PacificDogwood yes that did make sense. It's so ridiculous, but I look st the baby equipment we've borrowed from a friend and I think how lovely to see a baby looking at the lights and getting excited with the music or even being soothed by the swing. Beatrice is so affected by her condition that she spends most of the dating laying still. Occasionally she'll appear to see the lights and move her arms and legs and we get so excited like she's just spoken in Mandarin. Her life is going to be so very different to her sisters'.

Everyone is being so nice to me and it feels silly, behind my back they must be pitying me or thanking their lucky stars it isn't them. I'm not stupid.

But I feel awful because I do love Beatrice, so, so much.

Stupid predictive text on my phone- please excuse mistakes.

I meant,' she spends most of the day laying still.'

cupoftea i am sure your friends arent pitying you, yes they may feel grateful/lucky/thankful its not them having to deal with it, but i am guessing they actually feel pretty helpless and would do anything to make you feel better, to make Beatrice better as we all would, but pity you no.

you sound like you are doing really well, all that you describe sounds normal to me given the circumstances and yes Beatrice will be different from your other daughters, but like you say you love her and whilst its normal for you to grieve for the baby that you expected Beatrice to be, you are still getting on and showering her with love and attention and i am sure she will thrive and you will help her to do so, no one knows what the future holds and that must be unbearably hard :(

keep talking on here and i am sure others will be along with much wiser words than mine :)

btw did you see my offer of clothes? i am sure you have loads as you already have girls, i have gone slightly mad am in the process of selling/giving stuff away that my dd has outgrown and am happy to send you something, i have a lovely little john lewis cord dress, its 0-3mths so huge for Beatrice now, but if you want anything just pm me xxx

Cup I don't know if this will help or not but a friend of mine had a baby born with Down's Syndrome recently. They hadn't had any screening and it was a complete surprise to everyone. All any of her real friends have said since is how proud we feel to be her friend. Everything she has said or done since her baby was born has done nothing but inspire us all. I have not once heard anyone expressing anything approaching pity for her. She is an amazing mum who couldn't love her baby any more than she already does.

Much like yourself.

re the lights and music things, please be patient and remember that although she has been with you for a while now Beatrice was quite early - not sure when her due date was? i'm not trying to gloss over the difficulties she has but just didn't want you to be too gloomy as she may become more responsive at some point?, time will tell i guess.
i remember that my DD who was early suddenly started behaving like a newborn when she was 5 weeks old. prior to that she had slept a lot and laid still quite a bit, not too keen on sensory stuff.

skinny that was a lovely post

just seen the new pics....

she is so beautiful

xxx

Could you reclaim something of those lost newborn moments with lots of skin to skin time now? Maybe pop her in a sling under your shirt or try for some time in bed without clothing?

oh skinny, your post brought tears to my eyes!

CupofTea, I echo what the others have said - it is in no way selfish to be sad that you have missed out on what you had with your first two girls. You are sad for Beatrice as much as yourself - her start was rocky, things were very different. But she is having all the love and care you can give her and she is staying with you, growing, doing more - as Concordia said, she was early so she will have an "adjusted" age as well as her actual age (adjusted from when her due date was) - remember that she isn't as far along as her actual age would suggest and it may be helpful.

So glad the audiologist gave you positive and sensible news - hurrah! And that she is moving her arms and legs, that = progress, yes?

Most of all, remember that you ARE doing really well and if anyone has the temerity to pity you, then they don't know you too well, and are too narrowminded to see what joy Beatrice brings you all.
xx

So many people have said what I want to say, and said it much better ways then I could.

Jealousy of a newborn baby with no 'problems' is natural after what you're going through. Nothing about your situation is fair on you. However, Bea is an incredibly special little girl. She's already proved this by how strong she is and fighting against all the odds and doctors to be with you today. She is also an incredibly lucky girl because she has a mother who loves her more than anyone will ever understand, who will fight her corner for her, who will support her and help her through whatever life throws at her.

If I can see this through words on a screen I can guarantee you that people who actually see you with Bea, people who can see the love you have for her and see the strength you have to get her through this, will never pity you. They will admire you and respect you and support you. Because you are amazing.