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.

Cupoftea, hope you feel better by the time you read this - lots of positive stories above .

I v much agree with what madwomanintheattic and lougle have said re the fact that usually worst case scenarios are presented as a possiblity. And it is very difficult when horrible things are mentioned by a specialist to really truly takke in the 'this may happen'.
I have had the very scary chat from neonatologists when DS2's delivery threatened at 26 weeks (he held on to 31 and was ok), and I have delivered bad news as a GP. Believe me, every dr I know cries inside when a poor outcome can be expected and a child/baby is involved. Being negative in the prognosis is IMO as much to prepare the family for what might happen as to protect oneself from too much heartache if it does happen.

Having said all that, a sympathetic dr/nurse/physio/OP/whatever makes all the difference and you have had a very rough time of it.
I also totally agree that you ARE some kind of a specialist in regards to Beatrice, you spend the most time with her, you have a special bond with her, and you WILL have a fair idea of how she is doing. Trust your instincts and love her; she will respond in whichever way she can.

And yy to how incredibly 'plastic' the human brain is in the first few years. There is a good chance that little Bea will surprise the doomsayers.

Lots of love x.

Massive hugs to you cup read your post earlier and have been thinking about it ever since (had a hectic afternoon)!

I feel so for you about the lack of emotional awareness the consultant has shown. Loads of us parents have 'been there' it is awful. A really good friend of ours had a dd with Krabbes (who lived for a precious 11 months) and she felt uncomfortable for various reasons with their consultant so they requested to have their dd's care moved to another consultant. Things were much improved. If you feel that it may help make some enquiries with your community nurse/gp etc or if you feel comfortable someone on here who lives in your area may be able to help with some suggestions. Bea's care has to be a team effort and the 'team' needs to be on the same page and you need to feel comfortable with the team members iykwim. What she said about the hearing test is so stupid, the same applies surely to every baby that has the hearing test, what is the bloody point of carrying it out then?????
As a parent of a child with sn (ds1 (8 years) has downs syndrome) and a health professional myself (a physio) I have over the years attended his different appointments and have learnt to take from them the important bits and filter out the "unhelpful" bits. As someone else has said you know her the best and ten minutes in a hospital appointment doesn't always give the health professional the accurate picture of a diagnosis. Eventually I found that I began to 'lead' the appointment and use the health professionals skills as required. Mantra- You know her better than anyone else. You are in charge of her care.

Be kind to yourself and when you are having a good day that's is great and when it is a bad day allow yourself to let it out. Remember too that you are only three/four weeks post birth and this is such a vulnerable time for EVERYONE post birth. I don't know whether anyone else has told you about the poem "Welcome to Holland" by Emily Perl Kingsley it is usually mentioned to parents of a child with sn. My friend gave me a copy when I had ds1 and I still have a copy on my notice board.

XXXXXXX

Another lurker from the previous thread.

You are an amazing mum, love and hugs to you and beautiful Bea.

X

Cupoftea, I've read through most of your threads and not felt able to post... I've just not known what to say. But I feel I must write to say that you are amazing and you seem to be coping brilliantly. My thoughts are with you and your family and beautiful Beatrice.

I agree that the doctor is fulfilling her responsibility to make sure that you and dh are aware of possible outcomes. That doesn't make it any easier to read though does it?

I was lurking on the other thread. I don't have any advice for you I'm afraid, but I wanted to say that your posts fill me with awe, you are absolutely incredible and so strong.

You, Beatrice and your family are often in my thoughts. Beatrice is so beautiful, as are your elder daughters, and you obviously have so much love for her, I'm sure she feels it.

I hope you don't mind but you're in my prayers xx

hiya cupoftea, how are you all getting on today?

Hicupoftea, just wanted to let you know that people are still thinking about you and wondering how little Bea is xxx

Hi again. Thanks for the posts and thoughts. I don't think Beatrice's consultant is a bad person or anything, I hope it hasn't come across that way. I think she has a hard job and is only being honest. It's just that we met another consultant on SCBU who gave us the same bad news, but allowed us to be hopeful. If we said, 'Yes, but maybe she will do this, that or the other,' she would reply enthusiatically, 'Yes, maybe she will. We really don't know.' So she allowed us to have hope, when that is all we have. I liked that lady.

I think I have hit a big low. Last night I broke down in front of the older girls, and actually cried all evening. I ignored calls from my mum and a sister as I couldn't physically talk through the tears. This morning my eyelids were so puffy! The GP came out today to meet Beatrice and see her breathing pattern as it is when she is well. Guess what? I cried again . He has written me a prescription for ADs as I had PND after both girls, and was still on ADs when I fell pregnant with Beatrice. I only stopped them as a precaution in case they could harm the baby. Ha bloody ha. That plan worked then, didn't it?

A couple of people have mentioned claiming DLA. We have the forms and gave them to our community nurse to fill in as much as she can. I realised that we are expected to apply under Special Circumstances- ie. it is reasonable to expect the child will not live longer than 6 months. So that makes me feel like I'm betraying Beatrice by applying, like I'm agreeing with Dr Death and her crappy prognosis.

On the up side, a lovely friend came round yesterday with a chilli, a crumble, custard and muffins, another friend took my girls for 3 hours after school, fed them and brought them home. She also brought me a plate of dinner. My sister popped round and gave me a hug and just let me cry, but told me to put the consultant letter away, as that is what has brought me down so badly. Another friend is popping round in a moment and bringing wine- I'm not sure having a drink is a good idea with my current state of mind, but maybe holding a glass instead of a baby will be a nice change

Thanks again for the lovely support.

I am so proud of you CoT. I think you are brilliant.

Cup it's not betraying her, it's getting extra help as you have extra needs. If the DLA can make things easier for your family then it's a good thing to apply.

Hope you have a good evening :)

Cupofteaplease, don't worry about the Special Circumstances. There is no rule to say it has to be expected, only that it would be reasonable to expect it. There is a big difference, honestly there is. Right now, the Drs don't know. They can only give you the best help they can.

Take heart that there are many SN parents who post here, who were told that their now 6, 7, 8, 10, 12 year old child would not make their 1st birthday.

Keep Beatrice snuggly, and try to enjoy her. Don't let the circumstances of the last few weeks rob you of your time with her. Because whether she lives for 6 months, 6 years or 60 years, you will never get this time with her back.

You are doing so well and it is great to hear that your friends are rallying round you. Don't be scared to lean on people. I will bet that all of your friend and mates are desperate to do everything that they can to support you.
You enjoy your wine tonight, you fully deserve a nice evening xx

So glad you are getting such good support. Massive hugs xxx

cupoftea, i am sorry you're having a hard time right now, but it is good to cry and get it all out and it's ok for your children to see that you get upset sometimes...
it sounds like you have some excellent support, which is good

i am hoping that beatrice hangs on in there and keeps getting stronger and stronger.
don't feel bad about applying for DLA. recognising a risk is not the same as saying that something will defintiely happen, and as starlight says that money can be used for Beatrice, or for your other girls and it's a GOOD thing

I think you are amazing. You are strong, and brave and you are a great Mum. You deserve your .

Cup of what a tough time you are having. It must be so wearing to ride out those ups and downs. Crying is good for you. So glad to hear that your RL friends are so lovely and practical. I bet Bea is just surfing along on a cloud of feeling loved and snuggled.

cup, our sn hv filled in our first dla form for us. i had signed it and handed it over to her blank, and to this day don't know what she wrote (which i realise isn't actually how it's supposed to be, but you do what you can through the tears, right?) when it came back i thought there had been this awful mistake because why would they be giving me and my baby all this money, etc etc. she very carefully sat me down and said there had been no mistake etc etc etc.

honestly, everything you are going through now is so so normal in the circumstances. life is a rollercoaster for now. and you have to cry and grieve for your immediately lost hopes and dreams. but you will build new ones.

it's brutal. but it will be ok. bea is a fighter, and so are you x

take the ads. they will just take the edge off. and never feel guilty for crying.

have a quiet, safe weekend. thinking of you all x

Sounds like your sister is being wonderful, hope you do as she suggested and put the letter away and remember instead the wonderful dr on SCBU

You are doing amazingly well, it's OK to cry in front of the older girls, it Amy well help them to express how they really feel too.

Love and prayers and virtual hugs

cupoftea your thread title here is so beautiful. Your love for Beatrice and your family shines through. I agree with all the previous posters who said you are now the expert for Beatrice, you know her better than all the professionals, she is already confounding them. You will know much better how she reacts to stimuli throughout the whole day not just on a snapshot. Even if a child has a difficulty processing visual images in the brain -cortical vision impairment- it does not mean they cannot see anything. Its a good suggestion from a previous poster to decide that you limit the days you are available for home visits so you can have normal family days. Have you be given "open access" for the childrens ward so that you can phone up and bring Beatrice straight in if you are worried about a change in her?

Hi, CoF, so sorry to hear you are so down.

Just another vote for not letting 'special rules' get to you: they simply mean you will be able to access whatever you are entitled to quicker which hopefully will help your whole family a little.

And I don't think that ADs are a terrible idea - if they have helped you in the past, then why not do everything available to prop you up during a hard time.

And yes, enjoy Baby B. Babies are only little for such a short period of time, whether they live to 100 or not. She is, who she is. Which is a much loved daughter/sister/granddaughter etc. I cannot tell you how much the photos of her you posted touched me - she is beautiful.

(FWIW I will try v hard to remember what you said about the importance to allow for hope. And there is always hope )

CofT, Just wanted to let you know that I think you are doing an amazing job in very difficult circumstances. As someone else mentioned its not bad for the older girls to see you cry, children are so intuitive they will know you are scared and worried about Beatrice. You have been on an absolute emotional rollercoaster, take the ADs if you think they will help. Take the wine, take the cakes, take any help that is offered emotionally, physically and financially.

Beatrice is a fighter, you dont know what the future holds but then again no-one can be sure can they ?

much love my darling, you are doing so very well

cupoftea - another lurker here. I'm glad you've had a bit of a cry. It's not good to bottle it up so much, that pain in your chest, the tennis ball stuck in your gut, they will ease a little if you let yourself grieve a bit. And there is grief even though Bea is still battling on; it's a grief for the child you thought you were going to have. I expect you're afraid to start because it feels like you won't ever stop?

Apply for the DLA because it will help in ways you can't imagine, spend it on your other children and just on making life easier and more enjoyable for all of you.

You are doing so well. Be kind to yourself. x

CofT, I can't pretend to imagine what you are going thro. You are an amazing mum but only human. You are bound to have good days and bad, so please don't beat yourself up. You mentioned in a previous post that losing your dad was horrendous but you did get thro that - (and here I do know how you feel, I lost my dad very suddenly three years ago and I hate it when people say that to me - so apologies!!) Be kind to yourself, take all the offers of help and try to take one day at a time. Your dad would be immensely proud of you x