north of the border - bulging bumps and bonnie bairns!

[weeonion]

folks - thought it was time for a new thread with a new title for all those whose LO are out! i thnk we shoud be aiming for a meet up in May / June?? - what do you reckon?

Hope everyone is getting on well - with the new (and not so new now!) babes.
Time is flying!
TallulahB, are you next? and am I last??? I simply can't remember - must be those pregnancy hormones!

Arrgh - don't scare me like that Loulee! Am I next, really???? Oh shit I'm going to have a baby, aarrrrrrghhhhh!

[Runs off screaming to get ready for yoga- deep breaths ]

Tallulah Sounds silly, but with dd1 I was pregnant but couldn't relate that to actually having a baby! You'll be fine!
Vio how is James? I hope you are managing some rest somewhere too and have lots of help - it's hard enough anyway after a c-section. You must remember you are recovering from the labour as well as the section.
Wee onion hope the feeding/sleeping is coming on. I've heard so many positive things about the bf cousellors at the QM - they sound like angels!
How's everyone else doing? if anyone's still about? Hope everyone else is doing well
Lx

Hi there all

We're just back from a lovely weekend up north pootling about with our country cousins and their 2 wee girls. We spent the whole time plotting how we too could go and live in a lovely house in the middle of nowhere with a hee-uge garden .

Hope all's well with all the new arrivals. Hope things are going OK for you Vio. Any more news on when James can come home with you?

Hi, James isnt doing too well,it is likely that hes got a condition called EB..a gentic skin disorder. My world stopped right there ....nothing matters anymore...i cried then cried more..they have given a skin biopsy , have sent to Great ormond street and should have the result next week..not sure what sort of result i want to get cos its hard seeing him getting new blisters all over his tiny body...changing his nappy is million times more diffiuclt than changing a normal baby..cos i cannot really touch him..i dreamt about giving him a cuddle but i couldnt..any sort of friction will cause new blisters...i cant think..cant think about the past cos it upsets me ...cant think about the future cos it scares me to death....as a first time mother..i used to think..looking after a baby sounds daunting and now i am not sure if i can deal with the it...my mind is somewhere else..

Today i changed his nappy with the help of the nurse..i thought i could do it but its hard..i popped his blisters with a needle..they told me that i am not hurting him but helping him..but i couldnt help thinking why??? this is bloody horrible..bloody horrible skin disorder!!! i shouted and then cried..i dont think i can do it..the nurse cried as well....i wish hes got a differnt type of illness which will not cause pain on a daily basis..hes been given pain killers already and the EB nurse told me today that they want to give him a stronger type of pain killer...

I have never seen my husband cried..he cried the other day..felt beaten up..we cannot help him....the best case scenrio is watching him suffer for the rest of his life..the worse case is that the disease can be life threatening....how can you describe the feeling? its like i have been stabbed but somehow still alive but in constant pain....

I looked at the garden and cried..2 weeks ago i was thinking how nice would it be when James arrives..we can sit out there and when he gets older ...he can play football with Martin..everything changed..in a really really painful way..

I am taking it day by day...life is a joke..you want to be a good mum and give him the best and hope he will be happy ..i cant really see how he can be happy..i really cant..i feel empty....numb... i just feel that james has been given a chance to live happily..hes done nothing wrong..when i look at him..he almost fools you...with his mitts and his babysuit..you wouldnt have notice anything..he smiles..then my heart just melt..he looks alot like me as well...

I dont know...taking it day by day and dont think ...i cant think..i will go crazy if i keep thinking about it..anyway..i just hope that all of you can take a look at this website..

I think it is debra.org.uk its a charity which help children with EB...

I know theres no cure currently but hopefully theres a cure one day..

James will come home when i have learned everything about how to take care of him from the nures in the hospital..i will have a team to help me with his dressings as his skin is peeling off.. but then i dont know..i guess somehow i will find the courage..from James..he is a star.

Oh Vio, I'm so sorry. It must be devastating for you and DH. So much to take in. I don't suppose there's anything I can say to make things better, but I hope you're getting lots of support. Will there be help for you once James comes home? And are there people you can talk to about how you are feeling? It might be worth posting about this elsewhere on MN to see if there are any other mums with LOs with EB. And I'm sure it doesn't help that your family are so far away, but PLEASE let me know if there's anything I can do to help, even if it's just going to the shops for you or cooking a meal or something. You sound very strong, and little James sounds like he's a wee star too.

Thinking of you.

Vio, don't know what to say. what a horrible condition. Just to let you know I'm thinking of you and your family. Be strong xxxx

what can we do to help?

Oh I am so sorry Vio

Is there anything I an do to help?

We have an sn group set up outside of Mn (for privacy) if you ever feel you would like support please do let us know and you are most welcome to come on in, and rant / cry whatever

peaches and cream 04 at btinternet dot com

God bles
X

I'm so sorry, Vio. Thinking of you all.

I'm so sorry that James has this horrible condition and my thoughts are with you and your family.

Vio-my heart goes out to you,James and Martin.
You will find a way to cope with your gorgeous little boy and be a great Mum-if there is anything we can do,you only have to say...

vio - my heart goes out to yo. you have been so brave so far. is there anything i can do to help? has you r mum gone back yet or is she still there with you? i think you still have my mobile number - give me a call??

So sorry to hear that things are so difficult right now. Please, if there's anything we can do for you, just say the word. Thinking of you, your DH and little James.

Vio

I have just read your very moving post, I can't imagine how very hard it must be for you. It may not be how you imagined things would be but you have a beautiful baby boy who is half you and half his daddy, if the three of you stick together you will get through this.
Sending you lots of positive vibes and wishing you all the very best. xx

Been thinking about you all a lot since I read your post, Vio. Just a thought (and you've probably had this thought yourself, apologies if so) but I notice that there's a support forum on the Debra website. If you get a confirmed diagnosis, maybe it'd be worth speaking to some of the people there - I'm sure there will be lots of mums who will understand exactly what you're going through, and will be able to offer a lot of practical advice too.

Take care.

VIO -just read your post and I am so so sorry things are so awful for you - I wish there was something I could do to help .
If there is anything, anything at all , all you have to do is say . you're all in our thoughts and our hearts . I hope you can find the courage you need to deal with this.

xx

Hi all, hope everyone's well. Vio - been thinking about you a lot, hope things are OK with you?

hi everyone!

Weeonion - congrats on the birth of your DD, love the name. Hope the feeding is going a bit better.

Vio - congrats on the birth of your DS, I'm so sorry you're having such a hard time of it, your post moved me to tears.

Is there anything i can do to help?

We registered his birth today and recieved a call from the doctor that they;ve got the result of the biopsy. ..life is a bloody joke..

Debra has helped me so much so far...pls..donate if you can..for those who suffer a painful skin disorder which isn't widely known..for those who cannot never hold or touch their children who they have the most..

No word can describe the pain...it's there since i know he's got EB and it will never never go away.....

Hi Vio - I wish there was something we could do. Again, please do let us know if we can help. I'm glad you're getting good support from Debra. When is James coming home?
I noticed on the Debra website that they have a fundraising week in June. I'll try and do something - it's a very worthwhile cause.
Thinking of you.

Vio, have been thinking about you loads, this must be so hard for you & DH. Have donated to Debra. Wonder if all us Scottish mums could get together to do some fund raising - sponsored toddle or something?

Hi all - I seem to remember talk some time ago about meet up this month. Did I miss it or is everyone too busy with new bundles? Anyone still interested - maybe would be a chance to put our heads together to do something for Vio?

Difficult for me to make it over to the west coast at the moment, Tallulahbelle - but if there is a meet-up soon, I'd like to know if anything is decided re: fundraising.