A Year With NEC

Today we should have probably woken up to a little boy who shouts to tell us he’s awake and then toddles round while we prepare breakfast and who then proceeds to get weetabix all over his face.
Instead we woke up,  said “he’s being sick” and rushed into Oliver’s room and quickly sat him up so he could have his morning vomit.  Still bleary eyed we then realised his stoma bag had leaked too so the morning started with cleaning up poo and sick….another standard morning in the Jones house. 

When Oliver was born premature we naively thought a few weeks on NICU and we’d have our baby home and that’d be that.  And for 7 weeks that seemed likely until a year ago today when Oliver contracted NEC or necrotising enterocolitis which was the day our lives undoubtedly changed forever.

I will never forget the phone call from UHCW and arriving there to see Oliver’s body shaking as he’d been put on an oscillating ventilator.   I’ll never forget being told to say goodbye and being told in the future this will be treatable, or breaking down hysterically in the middle of the carpark,  or watching the beautiful sunset as we drove up the M69 to Leicester Royal Infirmary expecting Oliver to not have survived the journey.  I’ll never forget the kindness of Anu and Jemma who looked after us and Andy Currie the consultant who stayed all night until Oliver was out of theatre, his shirt all creased after he’d had a nap in his office.

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What we didn’t know was how much our lives would be turned upside down by the horrible condition that is NEC.  Most people have never heard if it and even specialists don’t know what causes it or how to detect it sooner.  Never in a million years did we think Oliver would end up needing a transplant and now he has GVHD.  His donor organs are attacking him as they know they’re foreign and his poor skin is sufering.   Only a month after losing his broviac line he’ll now have a new one on  Friday and next week he’ll start his first 2 day treatment in Rotherham….over one hundred miles from home.

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Oliver's cracked fingers

People say we must be so happy to have Oliver home now he’s better…but it’s not that simple.  We’re carers more than we are a Mummy and Daddy.   After we’ve cleared up the first sick of the day, its time to draw up morning medicines, and make up feed.  Just a quick trip out the house involves attaching 2 feed pumps to the pushchair and then enduring the staring or pitiful looks when you’re out.

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A day's medicines

I can’t help but think that people who say “I wouldn’t change it for the world” are liars.  If we could have a “normal” baby,  we would.  But just when you think you can’t go on Oliver will call your name and smile and you can’t be cross.

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