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.

hey don't worry about crying, it was going to happen sometime or you wouldn't be human. fill in the form and claim whatever you can. anything that can make your life easier is a good thing.
i agree there are loads of kids around doing well whom docs said weren't going to survive or would be a vegetable (let's hope they've stopped saying that one now) or something else truly horrible about. I'm sure beatrice will continue to prove them wrong. i agree read the letters and put them away. you need to know what could happen but hope is what keeps you going. beatrice is lucky to have a lovely mum.

I'm not surprised it's been so very difficult, cupofteaplease. I expect things will continue to be up and down. But as others have said, you are doing amazingly well by your baby and your girls. Lots of love to you. xxxx

Just checking in cup to let you know you and your family are still in my thoughts and prayers.

Good Morning Cuppa, Just to say i am thinking of you and your lovely family. Look after yourselves and have lots of cuddles.

I don't normally come to this area, but wanted to say how brave you are.
You and Bea (and the rest of your family of course) are in my thoughts.
Do take the DLA and buy something nice for your other DDs if you don't want to spend it on your or DH or Bea.

Just to say I have been thinking about you today and really wish I could help in some way.

Just having a catch up. You have a lovely support network around you CoT, take comfort in that.

I don't think you are betraying Bea by claiming DLA, the extra money can help pay for something like a cleaner so you can focus on spening more time with her and your other two DDs.

the thing about dla is it seems daft when they are tiny babies - i mean, you are expected to wait in them hand foot and finger whether they are nt or not... but very very quickly you take on more of the sn role - daily/ twice daily/ four times daily physio or whatever, working on feeding and communication, and any sensory issues that complicate settling/ sleeping/ just being. then you start looking at sn products. seating trikes, cutlery, bowls.

as an example - dd2's fine motor was compromised, and she was much stronger on the left - so we had to buy junior caring cutlery at 5.99 per fork/ spoon knife (yep, nearly twenty quid for a set of one knife fork and spoon) and bowl with one steep side and a shallow edge for cutlery entry, and a non slip base because she couldn't hold it still etc. so nearly forty pounds just so that we could work on independence at meal times. never mind the spare set for nursery/ grandma's etc. and then you start looking at adaptive trikes.

dla isn't a sop to cushion the blow, and it isn't you giving up on bea. dla is an absolutely necessary benefit that enables your child to progress by providing financial help. dla lets you pay for private therapy if the nhs waiting list is too long - it allows you find a sitter for the other kids because you need to take her to a paed appt and dh can't get the time off. dla lets you consider putting a sensory room together for christmas. dla is how you continue to do the best for her. x

Just a quick post to say I'm thinking of you and of Bea.

Just checking in to see how you're doing. You are all still in my thoughts and prayers.

Hello, I only just caught up with your thread, I hope you are feeling ok. I spent the first at least month after dd was born in tears most of the time, I still have days now when I burst into tears a lot! Is the conmsultant suggesting any monitoring/equipment to monitor Bea when her breathing is irratic? It may help, even just to give you piece of mind an you will get to know what Bea's normal SATs etc are.

I just wanted to add to the amazing stories of children who have defied all the odds, my dd had a horrendous prognosis but the Drs were right in saying that dd would never walk, talk, sit, ride a bike etc she won't ever do those things but I feel 100% at peace with that, she is an amazing joyous little girl and she is perfect just as she is.

Cup - DLA forms are the works of the Devil himself but, if you are rewarded DLA (and I believe that you will be) it's because you deserve it.

I found it incredibly hard to fill the first one in, but Nemo's (DS) Community Nurse helped me to fill out each section and to understand the questions a bit more.

They are very daunting forms but be as honest as you can about just how much care Beatrice needs etc........

madwoman - say's it perfectly in her post, DLA is an essential tool to help you give Beatrice the best possible care in terms of equipment.

If you are awarded it, use it.

Sending you love and best wishes, I have been following your story and felt every drop of emotion with you.

Take care xx

So sorry to read the consultant wrote something like that knowing you would read it. How harming. I would put it out of your mind as much as possible, they have no idea and haven't spent as much time with Bea as you have. If she is responding to light and sound, these are promising signs. You are doing marvelously and I believe your love for Bea is the most powerful and healing thing for her. Try and ignore this negativity and have faith in the moment which is your loving family. x

Thanks for the advice and kind words again. I feel less alone when I read the replies, and the more people who know about Beatrice, the more it feels like her life 'matters'. Does that make any sense?

Anyway, we had a low key family weekend and everything almost felt normal. Beatrice has been fine this week, she is currently jigging around (as much as is possible for her) on my lap, all wide-eyed and looking around her. Yesterday, she had wind, and it made her smile. I know it wasn't a real smile, but she looked so beautiful and peaceful. I hope I get to see a real smile one day. Today I had a worrying time, she gulped her milk so quickly that she choked on it. She was fine once I sat her up, but it was the first time she'd done it and it was quite scary. Luckily we were at a friend's house and she said her son, who was born prem at 31 weeks used to forget how to suck/swallow/breathe and choked all the time... scary.

This cheered me up though, in an ironic way. I am in the Daily Fail today here, well my picture is (I'm the graduate on the right, holding onto my hat). It shows me on the day I graduated- and the article talks about how graduates are ill equipped to get jobs. Bloody cheek, I've worked all my life! Any way, it made me chuckle.

More pics on my profile. The pink hat Beatrice is wearing was knitted by a lovely MNer. Thank you

Lovely photos - did LOL at the Peppa Pig hat your older DD is wearing.
I also love the one of Beatrice looking at the light. They are so cute at this age when they fixate on something - I always want to know what babies are thinking!

Love the photo in the Daily Fail!

Sorry to hear you had a scary moment when she choked on her milk - but the positive side of it is her sucking action is getting stronger. (bless her she can't win!)

Sending positive thoughts to you and your family.

Hi, cupoftea. I've been following your thread, never having the right words and without useful advice, but I just wanted to say that Beatrice is absolutely beautiful. I'm sure that there are many others quietly rooting for your lovely Beatrice, you and your family as well as all the wonderfully eloquent words and moving experiences of other posters and your thread.

Just clicked your DM link; appears that you've just emerged from The Great Hall and are they history/humanities colours ; am I right?!

Very good, Spoutlet! Italian Studies. Is that your party piece, guess the uni and graduation colours?!

dd2 was always choking/ aspirating on milk - eventually you get to know which incident is a 'needs antibiotics' one and which to ignore - it's a bit rough. well done on the sucking though - great! the suck/ swallow/ breathe thing is very complicated! if it does continue to be an issue you can look at thickeners (it slows the flow down so they have longer to organise their swallow and breathing action) but it does get much easier with weaning!

i like this site which was recommended by our speech and language therapist when dd2 was a few months old. (if you don't have a specialist feeding slt on board and you are worried about the risk of aspiration then do ask for a referral - ours literally kept me sane(ish) for the first two years)

glad you had a lovely weekend though!

Ah, I used to work in the Main Library and then spent a three years on the "other side" of the lending counter

I don't get the 'posed by models' bit. There you are graduating you are not a model just dressed up for the occasion. B....y cheek.

Hi cupoftea! Thinking of you and sending best wishes to you all!

ask them for your modelling fee.

and then put 'model' on your cv as well.

Oh no madwoman, needs antibiotics? I didn't realise that could be the case? I didn't tell anyone about the incident as she seemed fine afterwards, should I have done? She is very snuffly this evening, but has been for the past few nights, the nurse said that is due to the feeding tube up her small nose. Panic, panic. It's times like this that I wish she was back in SCBU for an hour just so I wasn't in charge and someone could tell me what to do!

Good grief, she is gorgeous.:) Sounds like you are doing brilliantly to me, cup.

no no - don't panic. the choking thing is pretty normal - just that sometimes it can lead to a bit of aspiration(ie a bit of the milk 'goes the wrong way' and ends up in the lungs, and can lead to a chest infection). it'll take a couple of days anyway (and usually there is no chest infection, as it was just a regular choke, rather than any aspiration ). if she does end up getting a chest infection every now and again, it's worth making a mental note of any choking type stuff, as it could be linked. (it could equally be that big sisters bring school germns home )

we just got to the point further down the line that we could tell which was a 'aspirating choke' and which wasn't. and so we could go to the go the next day and get some anti-b's for when she started to develop chest infection. (it saved the waiting until it happened and then trying to get an urgent appt etc). so we had them in case.

don't panic, lovely! it was never life or death, it was just something for you to think about that might make your life easier down the road.

so sorry! (lol at 'back in scbu' though. dd2 got re-admitted with a chest infection after being at home for a week . they wouldn't let us back into scbu despite her blooming living there for 5 weeks - she was put onto the children's ward. very different!)

she's so lovely. don't let her scare you. (and don't let me scare you, either! )