Cup and the Teaset face 2012- and this year, Beatrice means business!

[cupofteaplease]

Hi. Chances are if you've opened this thread, you may have followed us from here I thought the new year needed a new thread (also the old one was nearly full!)

The basics: Beatrice has central arthrogryposis and extensive cortical dysplasia. She is 16 weeks old and weighs 8lb 1oz. She is on continuous oxygen at 0.2 litres. She is fed Infatrini with Duocal mixed in via NG tube. She is undergoing ponsetti treatment for her talipes, she also has splints for her hands and is now in a pavlik harness full time for her shallow hip sockets. She is coping very well with all of her treatments. Her community children's nurse describes her as 'defying all the odds'.

The positives: If you have a 4 month old NT baby, the following will probably seem pretty poor progress, but for Beatrice who was stiff and non responsive at bith, she has made great gains. Bea seems very alert in this last week and is becoming more vocal too! She happily shouts at me when something isn't going her way- a vast improvement as she couldn't even cry when born. She moves her arms in all directions now and manages to lift her legs, even with the cast and harness. When she is under her play gym with lights, she moves her arms and legs in appreciation. She also mouths when she is hungry. Her breathing pattern seems much more regular since being on oxygen. She not only recognises my voice and turns to find me, but she can also distinguish other people talking and will move her head in different directions to find who is talking. We assume her eyesight is very poor, although we know she can see shadows and bright lights when it is dark. She adores the cinema and has been twice now!

The downers: Her weight gain is painfully slow- on average 2oz per week. She has fallen off the growth charts completely. She is still sick a couple of times a day. She is having a barium meal and swallow study on Monday to see if there is anything going on. Her sats are irregular and heartrate is very high, so weaning her off oxygen (which she started when she had pneumonia before Christmas) hasn't started yet.

Support: Beatrice was finally awarded DLA at the highest rate today, and we have been told to apply for a blue badge as parking in tight spaces with her oxygen is somewhat problematic . Next week, our lovely physiotherapist who has been administering the weekly plaster casts is going to start coming to our house to do some massage and play and encourage her arm movements even more. The referral to Helen House Hospice is still being processed. After Bea's casts have come off permanently (just 2 more to go!!) I plan on taking her swimming at the hydrotherapy pool in the special school where my SIL works as a SLT.

At the end of January we have a review with our 'lovely' paediatric consultant, Dr Scrooge. We havent managed to shake her off yet!

Thanks for following us here- I'll add some more pictures in a minute.

Cup - I guess the HV was damned if she did and damned if she didn't and probably thought there was slightly less chance of upsetting you not telling you about the classes :(

If you would like to do something with Bea then I'd highly recommend Music with Mummy. I've been to a few different classes in different areas and they have all been nice. It's good because it has a focus (the music) so there isn't all of that sitting around and chatting - yet there's time for the odd word between songs or whatever, but no pressure for small talk.

Your big girls do love you and need you like Bea - really they do, they're just being ever such good little girls and making do with DH & others x

I think it would be amazing if you could use your experience with Bea to help other families in the future - if you felt able to. Think about what would have made your life easier (or who did) and how you could do that role or make that role. If I had to go through what you are going through, having you beside me would make it all so much more tolerable.

It's understandable how you feel re your friends baby.

The family photo is lovely :) Chunky?? I wish I was that 'chunky'!! You still look like you should be in a gymslip, tiny, pretty little thing that you are!!

Maybe they didn't tell you about the classes in case you were offended as it would be obvious it wouldn't work for Bea.

cup All your girls need you. I understand what your're saying though as my DS is 7 now and sometimes I feel like he doesn't need me anymore - he does - just in a different way. The same as Bea needs you in a different way to your DD's did and do now. I know it's easy to say enjoy Bea and don't worry about the future but that fear is real to you and I understand why it will never leave you.

In the meantime try not to consider the work thing. I guess when the time comes that you may consider returning to work your heart and head with have their own ideas. No-one knows what the future holds and exactly what they'll be doing in it. We create our paths as we go along.

I like to think of life as a journey.

So the journey takes you along a path -ATM your path is with Bea and your family. One day you'll reach a signpost which gives you a choice of direction. Then and only then, do you actually have to decide which way to go. And whilst deciding there is the option of stopping for a picnic and enjoying the view.

(((hugs)))

Aw Cup - I understand your feelings on being needed. I have a friend whose DS was never expected to leave the hospital after birth (VERY prem and severe Cerebal palsy) but he lived to aged 18! After he died, she was still Mum to his younger brother, but felt that terrible gap of not having to get up every few hours to turn him, change his tube feeds, change him, fight all his battles with the professional etc.

She did adjust, but she is still his Mum, as well as Mum to her other son. and no-one expects her to just "get on with it". Her role has completely changed, but the whole process has made the family the close knit unit they are today.

Much love to you all.

I think that's a lovely post for us all youarekidding

Love takes many forms Cup. Your older girls love and need you just as much as Bea, but in different ways.

You are so young, you could always retrain in something to help others in your situation.

In a lighthearted way, I always thought what a waste it was having only one child, as you learn so much with your first. I was 40 and bloody useless, but learnt quickly, but I never got to put all that knowledge into practice a second time.

Aw, cups, lots of hugs from me too. I know I am not your most faithful 'follower', but I do think of you and Bea lots. And now she smiles - that is just soooo lovely!

Re baby classes: my HV never told me about any baby classes and my DCs did not have SN, so maybe she did not mean anything particular about not telling you either? Just saying'.... A lot of the classes are overrated IMO - DS4 hated baby massage for instance .

I am 45 and I need my mother. Yes, not like a baby does. And yes, I cope fine without her which is just as well seeing that she lives in a different country .
You will always be important to your girls. Always. Your role will change and that is as it should be. And Bea might not be with you as long as you'd like , but that can be true of any child: the difference is that you kind of know what is likely to be around the corner. Do try not to overthink or to get too far ahead of where you are now. Who'd've thought that when Bea was born you'd be posting such heartfelt, lovely, busy posts about her now?? I do kind of see where that other mother was coming from, but grief does not compare. Every loss is unique in its pain and its potential to make us grow. I really hope it is not something any of us will experience any time soon.

You just keep putting one foot in front of the other and being the proud Mother Lioness to Bea that you are.

Oh Cup. No words of wisdom, just love and hugs to you all.

Another supposed grown up who still needs her mum here :) That said, I do understand your post Cup. Bea has changed your life in a way that your other girls perhaps have not. Whatever the future holds, you will face it, and we will be here to hold your hand :)

Hugs for you cup

You've bonded so deeply with Bea that you can't imagine anything else. But just as you had to adapt to caring for her special needs, you will also adapt to changes in the future, treasuring all the love you've shared as well as coping with grief and the pain of losing her.

But hopefully that is a l o n g, distant day away, and amid all the challenges I'm sure you are savouring all the lovely cuddly times together. You've had such a deep, intense, maternal experience with Bea - the pleasure and the pain - it will leave it's mark on you, I think, in a very positive way. xx

Cup...... Just checking in and wanted to offer my thoughts and prayers.

Massive hugs my love. Why don't you mention how you feel to the hv when you next go, she probably doesn't mention the activities/groups to anyone but if she does and didn't tell you for whatever reason you may help her to improve her practice. Some of the healthcare professionals I have come across are often not massively experienced and it can be difficult to know how to deal with 'exceptional' clients/patients. I have been on the other side when I was a newly qualified physiotherapist, I dread to think of some of the oversights I made. It can be quite daunting dealing with parents/families who essentially are more expert at the child/patients conditions/abilities/needs then you as the therapist.

Oh and I am another one in my thirties who still needs my Mum. Try not to worry about tomorrow. XXXXXXX

So glad to hear all is well Cup, cuddles to the Teaset.

The girls will need you, have you thought of offering SN respite fostering to use the skills you'll have to offer? Tho I believe Bea will be here for a long time in y heart.

Glad all is well with the Teaset. But also sending ((Hugs)) in your direction too xx

Hey cup

Firstly, well done bea on getting that weight back on!

I second what everyone is saying on here. I hope and pray Beatrice is with you all (and her internet aunties) for a long, long time and have no doubt in my mind that should the time come, the strength and love bea has brought in to your life you will pay forward to others in need, whatever form that may take.

Sending lots of love xxx

Oh cup. I think you are so deep in the intensity of looking after sweet Bea and doing such a bloody brilliant job of it that I can understand how you could wonder what you will focus on if the situation changes. Just one day at a time. Your big girls will always need you. Right now you are teaching them some very important lessons about unconditional love.

Thank you so much. What would I do without you all and your kind words and thoughts? You're all amazing. And, as always, I must remember Thumbwitch's motto- don't borrow trouble ahead of time. Tomorrow will come whether I worry about it or not. So today, I am enjoying today.

Or at least, I was enjoying today. The following should probably be in Reationships, so feel feel to skip the rest of the post.

Dh and I had a bit of a 'To Do', earlier. Basically, the upshot was, he is working too hard, never spends time at home and therefore doesn't feel rested and resents doing his share around the house (now, he isn't a cave man, he does more than many men, but resents doing so, it would seem). The upshot of today's argument was that he resents me being on maternity leave and wishes he could, 'Sit around on his arse all day doing nothing.' Now, I feel overly offended by this little accusation. I am out every bloody day on the school run, taking Bea to hospital appointments and yes, meeting friends occasionally for tea. Today was one of those days and Bea and I went to Costa and didn't get home until he was leaving for work. I moaned that the house was a pig sty (which he'd been sitting in watching the Gadget Show...) and he was now about to escape to work, leaving it all to me.

So basically the upshot is, he doesn't respect the work I do at home, and the care I take of Beatrice (and by our CNN's definition, I am her carer due to all of her additional needs) and he would rather I went back to work full time and he'd be a SAHD. Now, this wouldn't work as he earns more than me and I only worked 3 days a week previously (something else he resented) so my contract is only for 3 days a week. ALSO, I'm still receiving maternity pay, so what would be the point in going back now?! AND, I do everything for Beatrice, he doesn't even know how to do her physio or what meds she takes and when. The idea is bloody ridicuous. Maybe when my maternity leave is over we could discuss it, but not now.

Grr, really hacked off now!

Oh, and please don't tell me to 'Leave the bastard', I haven't got the time or energy!!

Arr. That's bad but may suggest that your DH is suffering from frustration and guilt that there is something wrong and he can't Fix It. He would like everything to be "normal" and it isn't.
However, his response and resentment is purely normal (IME) - especially the "sitting about on your arse all day" comment! DH tried that one on me, and the "I'd love to be a SAHD and do fuck all all day while the baby sleeps" - hardefuckinghar! DS never slept for more than half an hour at a time - and you have so much more to deal with where Bea is concerned!!

Normally, I'd suggest you offer him a day at home by himself with the baby - but if he doesn't have the knowledge to cope with Bea's requirements then that's not appropriate. Perhaps he should take a day off though and see exactly what you do have to do for her? Might wake him up a little. :(

Oh, I'm sorry you've had a bit of a falling out over something. It does sound very normal to me. And perhaps a sign too of the stress and worry you've all been through. Hope you can make up soon.

Going to Costa with Bea and the girls does sound preferable to going out to work you might admit !! But obviously that's a little highlight in your day, and not all there is to it

Aww Cup - you are dealing with all this stuff and I can't imagine the pressure and stress that that puts on you both and the rest of your family - having an 'ordinary' new born baby drove me and dp to the edge (twice ) so I am in complete and utter awe at how sorted and sane you are.

I agree it might be good to leave dh in charge of Bea for a day or two while you do other stuff (but not work, obviously - that would be mad!). But mainly it sounds like you probably both need a break together - which I probably isn't possible

Be kind to yourselves - grab as many treats as possible (which for me would be curries and wine. ahem...) and keep going...

Oh gawd, men, don't you love them - can't live with them, can't shoot them...

Having a babe with SN pushes you to your limits, mentally and physically, and IME your marriage suffers. I expect he's hurting too, his life has been picked up and shaken around like a snowglobe and he probably feels pretty unsettled, under pressure financially and emotionally, and unnerved.

I am in no way excusing his dipshit comments, but I bet if you said to him "don't be a numpty DH, that just wouldn't work" he'd go "yeah, you're right actually". Invite him to spend the day 'shadowing' you so he realises it's not all cupcakes and coffee.

I think when our DHs see us calmly coping with everything, looking swan-like and serene, they forget that underneath we're paddling like hell just to stay afloat.

Hugs to you all xxx

Tempted to say just ignore his outburst Cup and carry on. I am sure he will be feeling an absolute heel for having spoken to you like that. If you can talk calmly about it then great, otherwise a big hug and a few tears always works for me (tears of frustration I hasten to add).

Oh cup. We've been there too but after 12 years of me not working at all DH has got used to it!
Is your DH having to pull his weight more than before or is he just a little jealous that you are getting a 'break' from working and doing something different (although not exactly how you had planned your maternity leave!!!!).
I think Dads of children with SN go through a particularly difficult time and feel even more left out than dads of NT newborns. Has he had any opportunity to meet other dads of SN children - men generally aren't very good at talking about their emotions with friends but if 'SN' dads get together it usually all pours out and they realise that others are in the same boat. Mums get better opportunities to do this as they often meet other mums at hospital appts, sn playgroups etc.
I guess he is feeling frustrated at falling so far down the pecking order as you struggle to cope with all the demands of Bea's regime and caring for your other DD's too. We all need some 'down time' so maybe watching the Gadget show was his - and as long as he doesn't make a habit of it - cut him some slack But make sure you get some down time too!!!
You will soon realise that there are more important things in life than the house looking a bit untidy (said by the woman who used to race around cleaning every time a visiting professional was calling at the house.

In case you lost us, we're over here!