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.

No useful advice, I'm so sorry. I wish I did have some. But as you said that knowing that people are thinking about Beatrice helps this lurker just wanted to say that I've been following your threads and you and your family are very much in my thoughts. Beatrice really is beautiful and I hope that you will have many happy times with her.

Cupoftea, she's gorgeous, and I love the title of this thread.

No useful advice here either, but just to say the ladies on this board are wonderful, if you don't know/understand something, there's always someone who does, so keep talking to us :)

Cup - all of your girls are just so gorgeous. I love the Peppa Pig hat!! I still love the original Bea photo - to me it always looks like she's sipping on a milkshake in a very cheeky way :) as for you - you look like the marginally older sister, not the Mum - I am

Cupoftea - just wanted to add that of course Beatrice's life matters :) For some reason her story has touched me in a way that I've never really felt before on MN - I keep popping back just to find out how you are all getting on. I think your pictures are just adorable - all 3 of your girls are so gorgeous. I love how proudly Beatrice's big sister is holding her. :o

Another lurker here, just following your story and thinking of you all. Beatrice is very beautiful and I pray you find a way to utterly enjoy loving her and being loved by her whatever hurdles come your way.

Lovely photos, Cupof.

Another person who logs on each day to see how you and the divine Miss Bea are doing. Love the graduation photo - you must have had your first DD when you were about 16?

CoT I just wanted to send you all my love and just let you know we are still thinking of you.
Your girls are all adorable . I can only second that Drs try their best but they aren't infallible and although the consultants letter was a shock, it is best filed and forgotten for now. All you can do is take each day as it comes, celebrate Beas achievements each day and enjoy all you share together. Keep making memories for the future. With the fighting spirit she has shown so far and all the love she has from her strong family, friends both real and virtual, I have faith that she will surprise everyone

I hope you start to feel better soon and am glad you have supportive friends in RL. What you feel while you are home alone is completely normal but has just been emphasised because of Bea's condition, with your first baby you worry, the second is easier because you have done it before, this has sent you back to the realms of first time parent again and the fear of the unknown when you didn't expect it. Go easy on yourself and try to get a little time for you, even if its a manicure at home in a different room xxxxx

I love the idea of Beatrice jigging about on your knee. I bet she has everyone wrapped around her little finger .

If you are at all worried could you ring the SCBU or take Beatrice there to be checked over?

For what it's worth, Beatrice matters hugely. My whole family ask after her. My kids ask to see the pictures of her. She is an incredibly special little girl who has touched the lives of many many people. I just wish I lived in the UK so I could do something more than just type words on a screen.

Your beautiful little Bea definitely matters. I wonder about her every day. She has the most amazing eyes.

Lovely photos CoT, your girls are gorgeous.

That peppa pig hat made me snort a bit of tea out of my nose

Another one who is very moved by your story, and by your beautiful girls. You are all doing so, so well and your photos show such a lovely happy family. It must be exhausting for you and your DH, but you seem to be doing an amazing job with your three little ones. Thinking of you all, especially little Bea x

You have 3 precious bundles of joy all surrounded with love . You are all in my prayers xxxxx

Cup, your strength and love amazes me.

I am so glad that you, Bea and the rest of your family are surrounded by wonderful friends and family who falling over themselves to support you. I wish I could reach out and help you too.
How far you have all come over the past few weeks. I hope you are taking the ADs, and that you do all you can to keep yourself healthy. Bea needs you, and you need Bea.

Your older two girls seem to be adapting to their new roles as big sisters extraordinarily well and showing you how well they've been brought up. It must be so hard for you, every moment of every day spent with an aching heart for your Bea. Your DH must be in pain too, I hope you are getting through this together in whatever way works for you.
I think of you often, and admire you hugely.

Beatrice is utterly scrumptious! She seems to have a real, knowing twinkle in her eyes. I bet she's soaking up your love and enjoying all the cuddles.

Thinking of you x

I think of Beatrice every day, and have been really touched by her tale and by your photos and your posts.

She has already made more of a difference, at such a tiny age, than many of us will in long, mundane lifetimes.

My bastard PC won't let me open your profile page and I really, really need to see more photos of beautiful Beatrice, grrrr!

My DS2 was born at 31 weeks and he was terrible for gagging/choking/coughing/spluttering/vomiting with every blessed feed - a lot of my precious expressed BM went on the sofa/wall/me/carpet - you get the picture. Weaning (at 7 months - a compromise to slightly adjust for his prematurity) magically solved the problem.

madwoman speaks sense. Also in some ways it is reassuring that she can cough and splutter, which suggests that her gag reflux is intact which in turn means that she has a way to protect her airway IYSWIM?
And yes, swallowing/breathing at the same time IS a rather complicated process which takes time to develop so is often more of a problem with early babies - even those without any additional problems.

Do you still have some kind of 'open access' to SCBU/day ward or something? We had that for a while which was very reassuring. I don't think I ever actually went outwith DS's normal appointments which were weekly initially, but I certainly phoned them. Rather often .

You are doing so well. Look after yourself so you can look after your gorgeous girls. We are all hoping looking after Bea is going to turn out to be a marathon, not a sprint, so pace yourself .

Right, over protective mother alert here After I posted on Tuesday, the snuffly noises were getting worse and when I laid her in her moses basket she couldn't sleep as she was making these loud noises. In the end, at 11.30pm I rang the children's ward where we have open access and they told me to bring her in to check her chest/lungs. We live a 20 minute drive from hospital, so it is a bit of a trip, but at that time of night the roads were clear. Anyway, all was absolutely fine and her obs were good. They were happy to keep her in and observe or send her home if I was confident all was ok. So we got home at 2.30am. I was very tired yesterday!

Anyway, yesterday afternoon, she did the same thing with her bottle, choked and spat a load of milk all over me. When the community nurse came today I explained what had happened, so she asked to see me give her a bottle and within a second of the teat going in her mouth she gulped liked crazy and went beetroot red. So the nurse has said no more bottles. It's all got to go down the NG tube until she is seen by a speech therapist and had a procedure to check if her swallow is safe. It does seem like a step backwards, but I want her to be safe.

She looked at her breathing agian, and explained that they believe the part of her brain that controls breathing didn't form properly and that is why her patterni s erratic and shallow. Again, only time will tell what that will mean for the future, but the nurse smiled and agreed what a trooper Beatrice is to have been born and breathed independently in the first place! Love her.

((((( you and Beatrice))))))

You are keeping her safe and loved and cherished . It doesn't matter to her how her food arrives by tube or by bottle, she is full and warm and loved. Hats off to Beatrice

It is sad about the bottles but you both tried and Beatrice is doing reall well. So is her mum .

Lovely new pictures. Hope you are all having a good day.

hi, sounds like you did exactly the right think about the breathing and although it's a shame about the bottles, i guess over the next few weeks and months you will start to find out what is best for beatrice in so many ways.
but i'm sure she will always be perfect - whatever she can and can't manage to do. she looks lovely in your pics.

Over protective mother - my foot. You are doing everything just right.
Every blessing.