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.

Cup - how you are feeling is completely how any of us would feel. Remember though that you are doing an amazing job looking after Beatrice and she has been doing so well because of you.

I have a baby gym with lights and music you can have if it is any good to you. (At least I think I still have it. DH tends to get rid of things...)

Skinny your friend does sound very special, thanks for sharing .

Thank you for the response, they have helped me to snap out of my pity party and crack on with life as it is.

We received a copy of the letter from the consultant today, sent to the SALT. It read a lot more sympathetically than other letters and this phrase sounded human, 'The prognosis is uncertain, but it it likely that Beatrice will sadly have significant neurodisability.' I thought 'uncertain' sounded bettter than 'poor', and she even used the word 'sadly', like beatrice was an actual person. Then I looked at the bottom and realised it was written by the nice consultant, not Dr Death. There was me thinking she'd had a change of heart, no such luck!!

4madboys thanks for the offer of clothes. In fact, we hadn't kept any of the girls' clothes, so we are starting again from scratch (albeit mostly from car boot sales and Ebay ), so if you anything you think Beatrice would like(!), I would be delighted to recieve it, thank you for the kind offer.

FAB I wish my dh was a bit more likely to throw things out, he tends to hoard everything in our double garage, which is now bursting to the rafters!! I think we are ok for play gyms etc. but thanks so much for the offer.

So glad you have a nice consultant - perhaps you can deal with her exclusively and not have to see/speak to Dr Death ever again?

CoT, Glad you are felling a little better today. I keep trying to find the right words but failing but just trying to say that is fine to feel angry, jealous etc sometimes - have a good cry/mope/seethe, then pick yourself up and carry on.

I also have a wry smile when you call the mean consultant Dr Death - perhaps you can arrange just to see the nice one ?

That's ok cup. I just didn't like the idea of you worrying what people are saying/thinking behind your back. It's a horrible feeling and ime it is very rarely the case that people will pity someone who is brave, positive and fiercely in love with their child.

If anything, the only people we pity are those who go through their life pitying themselves. That is truly sad.

Wishing you and Bea a lovely day today :)

I imagine its all so new still Cupoftea, for you and your family, you have had 6 months or so of preparing for your baby to be born, and although happily your baby is with you, sooner than expected, life with her is not how you had planned and dreamed.

It's perfectly to have down days and doubts, anger and tears, if you can't share in MN then MN is not being real.

Bea has and will bring much joy to your life and other people's, I have not been through this, but one of my friends has a beautiful daughter who is now 15 who was given a life expectancy of just a few months when she was born.

Her daughter has the developmental age and abilities of about a 6 month old, but is able to recognise people. She has taken to my DS who is 12 and it's a joy to watch as they meet up and she responds to him entertaining her.

If I am completely wide of the Mark with my assumptions, do say, or just ignore me

Oh big hug cup glad today is better.

I know completely how you feel with the jealous feelings. Eight years ago yesterday our dc1 was born and he was whisked to scbu and we were later told he had downs syndrome. I was crushed and still feel so so sad about not having that happy new baby time. I still have what I call 'moments' when friends have a new baby. I am so happy for them but at the same time jealous and sad for us. We have since had three more lovely healthy babies and I still get these moments esp when it is a couples dc1. I'd like to think I'm not a wicked witch feeling like this, just being human.

My wonderful Thomas was 8 yesterday and in amongst all of the excitement I had a few 'moments' thinking "this time 8 years ago I was going into labour, getting told the news etc etc......"

I am not equating Thomas and Bea's problems just the feelings of a Mother who has had the dreams and images of the new member of their family shattered.
Yesterday I had a moment with a couple of friends, one of those bone shaking whaling ones. Mainly now because I'm so sad about what I felt like at the time, I like you wouldn't change my lovely baby but it is so hard.

Sending a massive hug for you, your dh and your 3 beautiful girls......off to get another tissue. X

Oh cup I have caught up with this and so sorry that you are up and down.

It's not a 'pity party' or 'selfishness' to have these feelings at all. You love Beatrice and are doing all you can for her, however you are human and anyone thrown into the darkness will take a time searching for the light.

I'm glad the other consultant has written a nicer letter.

Yeah to advanced hearing test positivity.

Beatrice is still so young and the lights and music will be in her future soon I'm sure.

Cup I haven't been posted but I check for updates every day on you and your little Bea. You are being so strong in holding everything together and as the other lovely messages say, keep holding onto all the encouraging signs and keep searching for more.
Every time I read the title of your thread I get a lump in my throat, as it just says it all.
Thinking of you and your girls every day x

Just checking for an update. Glad Bea is doing well and yey for the hearing test. :)

Just checking in, cupoftea. Have asked our Sylvie-Rose to watch over Bea.

Five weeks today? Want any more knitting?

Cupoftea, even after 15 years I have never felt that people have pitied me, they were shocked initially as we were but I have found the overwhelming response of other people was that they wanted to help somehow but did not know how to help. You are doing brilliantly and Beatrice is thriving and at home.

Cupoftea hope you don't mind me posting on here, just read your thread on the bereavement section. So glad you have been able to take your beautiful daughter home!!
I lost my 2 year old son almost 6 months ago now, Oliver was born with Williams syndrome. I had 2 years of appointments with paediatricians, cardiologists, SALT, dieticians, physiotherapists etc... And I would never change a thing!!
When you first realise you have a child with a disability it's so hard to come to terms with, but with time you get used to it and it becomes so rewarding!!
You realise that every little thing they are able to do is so much more special than a child without special needs!! We take it for granted that our children will meet all their milestones on time, with a sn child these milestones go out of the window, but in time they will learn to do things in their own special way!!
Enjoy every amazing moment with her and hopefully she will be with you for many years to come!! She was sent to you for a very special reason!! And embrace it!! Xxx

Another follower here, just to send love and prayers. Beatrice is incredibly beautiful as are your other dds. I think you are amazing.

How is Beatrice doing - she is gorgeous :) xxx

Hi, I haven't felt like posting the last few days, getting a few sentences written down seemed to be a bigger task than usual. I had a tooth extracted on Thursday, and whilst I was at the dentist, the nurse came to see Beatrice who was with dh. She needed to change her feeding tube, and apparently it went very badly. She said Beatrice sneezed, had a nose bleed and then became so distressed that she stopped breathing. She recovered, but the nurse said from now on she will need to go to hospital to have the tube changed so the nurse has more support and oxygen on hand. My poor baby, and I wasn't even there for her. Anyway, after that, I couldn't get an aspirate all evening and night, I was giving the feed based on the fact I could hear air in her tummy when I pushed it down the tube. Anyway, after her 7am feed she vomitted everywhere, which she'd never done before. So dh took her to the hospital where they moved the tube further into the tummy, and luckily we've had no more problems since. But that day, and even this morning, Beatrice has seemed quiet and tired. Finally this evening she has woken up and is looking all around.

Also, we went to the shops earlier, and there seemed to be pregnant women everywhere. And 3 of my FB friends have had babies this week. I'm still finding the jealousy/resentment quite hard to deal with because it is so uncharitable and bitchy of me.

Dd1 had her pre-op appointment on Friday as she is having a second set of grommets fitted in 9 days. It was 'nice' in a way to be at the hospital for something that didn't involve Beatrice!

eaglewings It is great to hear that your friend's dd has lived a longer life than anticipated.

Four4me I am glad I am not the only one to have these feelings, although I am sorry you have had them too. How soon after Thomas did you have your next son? How did you cope with the pregnancy, were you given extra monitoring?

Chipmonkey Thanks so much for posting, you are so brave. And thank you for your kind words, I hope Sylvie-Rose was listening to you I saw her photo on your profile, what a gorgeous little girl.

DutchOma Yes, she is 5 weeks now! I'm so proud of her, considering they thought she might not survive her first few hours. Knitting wise, we are finally ok for hats thanks to you and two other MNers! Thank you

gingegirl Thank you for sharing your story about Oliver, I'm so sorry he was taken too soon. Like you with Oliver, I wouldn't be without Beatrice, so I will deal with all of the professionals as necessary. How is your dd coping with her brother's death? (If you don't mind me asking.)

Thanks to everyone else for thinking of us.

I wanted to say how moving your posts are and what a beautiful baby beatrice is. MN SN boards are such a great source of advice and help. I think all of us SN moms feel jealous and envious sometimes. I have a DS with ASD and brain abnormalities currently being investigated, and I feel envious of others every day. Knowing his life will be different to his brother is hard, but I have had lots of support from MN, and I hope you can also gain some comfort from others here.

I love hearing how Beautiful Baby Beatrice is doing.

oh sorry you have had a hard time with her feeding tube :( but pleased she has been more awake and alert for you :)

i have sent you a pm and once you send me your addy i will pop some clothes in the post, they are all in a big bag in ds1's bedroom, he will happy some are gone!

thinking of you, keep snuggling your precious little girl and your others, they are all gorgeous :) xxx

Cup - jealousy/resentment is natural lovey - it's not uncharitable or bitchy, it's just normal. Of course you wanted a full term, uneventful pregnancy with a completely healthy baby at the end of it - as everyone does, we have that expectation really don't we. You have a lot to cope with and it's natural to resent that at times. I try not to post too often so that you don't have pages to wade through when you do come to post - but you, DH & all of your girls are regularly in my thoughts. Don't forget to look after yourself as well OK x

Cupoftea, she was good to start with, she seemed to be stronger than all of us, comforting us when we were crying, however in the last few weeks she has really been struggling, not wanting to go out to play or go to school, she's waking all through the night crying and very angry all the time!! How much have you explained to your children? Do they realise that Beatrice may not be with them forever? The problem for us is that Olivers condition is not usually life threatening so it came as a complete shock!
Maybe if Lucy was a little more prepared it might be a different story?? Who knows?? Thinking of you x

Awww - bless her - no wonder she was tired - hope she's OK now. I don't post much on this thread but love hearing how Beatrice and you all are doing, so thank for taking the time to update us and sending much love your way

Ah cup so sorry about all the problems with the feeding tube, I would imagine that she was so worn out with all the poking about and vomiting that is why she was quiet for a while. Sorry that you have felt unable to post, if you are struggling and want some support but can't face a long post why don't you just come on here and post something simple (like .....bad day or struggling) and we'll all be here for you.

In the early days after I brought Thomas home some days when I felt positive I wondered how I could possibly feel so low then the next day when I felt low I thought I'd never fell positive again. Simply and exhausting roller coaster.

When I had Thomas I instantly wanted to have another baby (I felt that I'd failed and wanted to prove that I could have a healthy baby- bonkers I know, but that's what I felt like). Ironically I felt like I wanted another baby immediately after the next three babies . My dh said that we would wait till Thomas was 6 months till we tried for dc2. And that was exactly what happened. Dc2 was nearly 4 weeks early so they are 14 months apart. I had a cvs with dc2,3and4 at 11 weeks. Downs syndrome is so 'common' it was easy to check out, then the rest of my pregnancies were straight forward and I had low risk care. I was more anxious in the subsequent pregnancies I think the whole "it'll never happen to us" confidence had been shattered.

I hope the cup family have had a nice family weekend and that Bea is being a good girl xxxxxxxxxxx