* Author Topic: Anybody special needs after nicu brain bleeds?  (Read 6610 times)

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Offline Blondie71

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Anybody?? ☺

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    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #1 on: 16/12/16, 21:25 »
    Hi Blonde,
    My little boy born at 24 weeks suffered ivh brain bleed. Grade 4 on the right and 2 on the left. He also has hydrocephalus as a result of the bleeds and has a shunt, thankfully so far this has been stable and no need for intervention.
    He has CP as a result of his early birth/brain bleeds which effects his legs.
    I see you have 2 liitle books born just a couple of weeks after my little one. How are they doing?

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #2 on: 20/12/16, 22:59 »
    Aww Peacelilly you've been through so much trauma from reading your siggy  ^hugme^ so sorry your little man also bears the scars from being born before time, it's a world nobody can prepare you for 😢

    Thankfully my boys can walk and move around very well but their problems are all related to cognitive function which at the minute requires them to be in a severe learning disability unit, it's a class of just 7 pupils and they do everything to music therapy and they also receive hydrotherapy there too!

    My boys can't talk and appear to have limited understanding of their environment which is devastating and makes simple tasks extremely hard work as their input is minimal and days are exhausting tbh.

    I have so many questions about how they have both ended up this way and also about the necessity of ventilation and subsequent bleeds 😕

    Do you do any therapies or found anything of help for your little man?

    Offline Tincancat

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    Anybody special needs after nicu brain bleeds?
    « Reply #3 on: 21/12/16, 06:55 »
    Hi Blondie
    Sorry to see your update here. . Premature birth is fraught with risks and outcomes can never be predicted accurately as the brain is developing in babies after a bleed some can make an apparent good recovery so no physical signs are present. . Later as you have found former premies can have behaviour problems. . Saying that those with trouble free births can develop severe cognitive problems too....the unpredictability of life.

    My Titch had small bleed which apparently doesn't usually affect them. . However it's Chuck who potentially has behavioural issues. . Titch is trundling along a bit behind but nothing major as yet.

    You have had such bad luck. . Any more back on the metabolic testing?

    Peacelilly you have another little warrior there.
    TCCx

    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #4 on: 22/12/16, 22:46 »
    Hi Blonde,
    Life sounds challenging for you and parenting a child/children with a disability can be utterly exhausting at times. As you say simple tasks can be hard work and you have double the work.
    Were your boys assessed and identified to go to a specialist unit because of their difficulties? My son attends a mainstream nursery currently. We are in the early stages of the EHCP  process and waiting assessment by an educational psychologist. My son doesn't talk either but does understand and cognitively is on a delayed timetable. I am worried we may get another label added into the mix.
    With regards to your questions about the brain bleeds, we're they identified in NICU.
    I know on day 1 of life in NICU my little mans brain scan was clear. He had a cardiac arrest, resuscitated and day 3 delivered the resulting news, might I add not in the most positive way. I struggled for a very long time not knowing what the outcome would be, essentially didn't know what life had planned for him and our family. I have never been so scared. But once he started engaging with us and toys I felt some relief.
    Don't get me wrong it still hurts like he'll some days that life is going to be more complicated for him but we can only try our best now and encourage independence.
    He has the usual nhs services physio, minimal OT, SALT. Has 1-2-1 in nursery. We have however just started conductive education at the Rainbow Legacy House. It fills a gap in patcy nhs provision and allows him to mix with other disabled kids. It's early days with this and we will see how it goes.
    Music therapy sounds marvellous my boy loves his music. Is it benefiting the boys? Are you in the process of applying for schools for them and how is that going? Are you getting the right advice and support you need?
    P x

    Offline Peacelilly

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    Anybody special needs after nicu brain bleeds?
    « Reply #5 on: 22/12/16, 22:48 »
    Tincan,
    How is Titchfield with his feeding these days?

    Offline Tincancat

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    Anybody special needs after nicu brain bleeds?
    « Reply #6 on: 22/12/16, 23:32 »
    Hi Peacelilly
    Titch takes all his calories orally and uses his mickey button only for water because he's still got issues with drinking due to swallowing coordination difficulties with fluids. He's under genetics and endocrine because of his growth: he's small in height and weight proportionally looking like a 12 month old. He's unsteady on his feet easily falling over and I think this is muscle strength and tone being a little low. Otherwise so far he's doing OK. . They are both behind and in next group down at nursery.  For my boys I believe  being in and out of hospital so much in that first year of life has really knocked development back. To try to keep positive I remind myself they could be much worse.
    TCCx

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #7 on: 23/12/16, 00:24 »
    Hi TCC good to see you still here as hadn't seen any posts of yours for months ☺ you're so right this is all very unpredictable for outcomes, I thought escaping nicu was end of it all eek so naive 😣

    My boys had very mild bleeds but apparently it's more where it occurs that decides what damage is done to the brain as some of those grade 4 bleeds can heal remarkably well and child is close to typically developing peers.

    All good on metabolics thanks they sent them off to guy's hospital who tested their dna building blocks and they determined nothing sinister at all so that's ticked off now yayyyy!

    Glad things picking up for you as you had it rough for long enough and deserve better days ahead x

    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #8 on: 23/12/16, 00:48 »
    Hi Peacelilly, yes so challenging and mentally draining as the unknown future is the worry  :-\

    My boys were referred for physio and picked up as having problems there (approx 14/15 months) and we've gone through entire process now with Ed psych who immediately went for statutory assessment /statementing (they had their statements
     within 8 weeks of seeing her!!!) She was very concerned and applied for an immediate placement in a disability unit for few months prior to starting nursery and then she applied for places in a severe learning disability nursery where a bus comes and gets them and brings them home which is great tbh!!!

    Music therapy is helping massively they are so much more alert once the beat starts and they seem to gain confidence to try things with it 👍

    The school they are at is totally special needs until 19 but i'm secretly hanging onto hope for a miracle and they go to mainstream  ^pray^

    Their bleeds were picked up about 3 weeks into nicu as a result of routine headscan and I was told they happen in 1st 72 hours of life, still can't bear to think of my babies suffering that and unable to let anybody know 😢😢


    Offline Blondie71

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    Anybody special needs after nicu brain bleeds?
    « Reply #9 on: 23/12/16, 00:54 »
    Ps tcc if you don't have these already get an indoor junior trampoline and a peanut ball for titch that's how my boys really got to grips with their core/mobility issues x