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Hi i'm new too! - Carers UK Forum

Hi i'm new too!

Tell us a bit about yourself here.
Hi all, i'm claire, 30 from staffordshire. I'm a carer for my 8th month old baby who has been seriously ill. She will hopefully fully recover from her condition by the time she is two.

What i find the hardest is the lack of sleep! I have two other children, two boys of 5 and 3 years. My baby girl is up 4 plus times per night every night as she has an increased appetite from the steroids she takes
hello and welcome Image
Hi Claire,

Welcome to the forum.Look forward to reading more from you.

Rosemary
x x
Hi Claire and welcome on board. Must be a very scary having a baby so poorly. Lots of us on here suffer from lack of sleep, so we know how you feel. This forum is very friendly and helpful and you will find lots of support.
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welcome hun xx
Hi Claire nice to meet you and welcome to the forum Image
My friend Natalie has also joined today and wrote LOADS so i suppose i should write a bit more too....... lol

I live in Burton on Trent, Staffs with my husband Matt, and three children Christopher 5, Noah 3 and Ellen-Rose 8 months, and i am a carer for Ellen-Rose. I was in the final year of my degree, LLb hons when my baby came along. Blissfully happy to finally have a baby girl after two little boys what could go wrong?????

Well, apart from catching chicken pox off her brothers at 6 weeks old all was fine and dandy. come 9 weeks she beging struggling to breathe. Turns out after a few weeks of wrong diagnosis she has a lump in her windpipe blocking her airway by 50%, the condition being called Subglottic hemangioma, (a hemagioma in the subglottic region of the airway). I chose the steroid treatment over the operation, and she spent weeks and weeks in hospital, her poor poor little body being put through massive massive doses of steroids trying to shrink the lump and keep her airways fully open. By 15 weeks old she weighed a HUGE 16lb. She went from fully brest fedding to taking 8oz bottles overnight - 5 of them, plus 2 breast feeds followed by 5oz bottles. It was EXHAUSTING! The poor little thing would wee and poo constantly - not just normal wee and poo - all over her clothes, everywhere, my poor poor baby girl! Then the operation became an emergency, but had to be delayed after a common cold put her in intensive care, and by the time she went in for the op the lump had shrunk! FANTASTIC! But it was soon back - and we were back on the emergency list for the op! After 4 weeks on the emergency list and no operation (requiring an intensive care bed for a week after) i couldnt take the worry/fear of what would happen in the operation any more and asked to keep her on the steroid treatment, so we are back on the steroid treatment until April when she is one, and will have her next scope to check on what the lump is doing. We agreed with her surgen on a dose strong enough to keep her just symptom free, so not to put her through it again - so thats where we are now!

At the moment she is stable. the dose of steroids she is on keeps her pretty much stridor free, though in the evenings she suffers a mild stridor/chest recession - you get used to it! lol The affects of the steroids mean she has again blown up a little bit, and her bp is up and down, and the apetite - she's refused all bottles since leaving intensive care and she is up 4 plus times per night - and your not breast feeding a baby - its a 8 month old!

I've coped really really well though, apart from being tired, exhausted etc constantly i think you just 'get on with it'. The boys do lose out on attention, but they know the situation, the illness and i spend every spare moment i can with the three of them doing anything we can together!

Think thats about it to date..........
Hello Claire..pleased that your little bundle is stable, long may it continue. Welcome to the site, I´m very new here too but I think we are going to be just fine...the natives are extremely friendly!