A new kind of normal.

Eleven and a half weeks ago, I was laughing at my younger sisters protruding belly.  She wondered at how big it was and her eyes bulged in horror when I told her it was likely to double in size before her baby was born.  Eleven and a half weeks ago the pregnancy books had it all right.  The tiredness, the discomfort, the weird floaty feeling when the baby moves inside you.  Eleven and a half weeks ago we laughed at the constant need to pee, the clumsiness, the forgetfulness.  Eleven and half weeks ago my baby nephew was forming nicely inside his warm, dark, mothers womb.

Eleven weeks ago things went horribly wrong.
No books talked of leaking membranes at 31 weeks gestation.  It's too soon! we all silently exclaimed.  While out loud we reassured and laughed at a long term bed rest prognosis.  Eleven weeks ago my sister was injected with steroids to help her premature babies lungs grow strong.  Antibiotics were ingested to stave off infection.  All to no avail.  Eleven weeks ago our baby boy was born.  He came by emergency caesarean.  A little bundle of screaming bitter-sweet joy.

We oohed and we ahhed but silently we were scared for the tiny, naked, foetus boy.  With his shiny, stretched purple skin and his little shrunken chest.  Red, white and black wires attached to his body.  The connected monitors with constant beeps and jagged lines keeping track of him.  His heart rate.  His respiration rate.  His oxygen saturation.  A green gastrointestinal tube taped to his chin wormed down his precious little throat into his stomach.  A white long line tube for delivering nutrients was inserted into the minute veins of his tiny arm.  In his stumpy, blood encrusted belly button, was an umbilical catheter for withdrawing blood and administering medications.  A blue tubed ventilator fed into his lungs to keep him breathing.  His hands were taped to boards and pinned to his bed to stop him moving.  His face was covered in tapes and tubes so we could barely see him.  His legs were bent in an awkward breach position.  We couldn't hold him.  We couldn't touch.  We could only stand, two at a time beside his clear plastic cocoon.  And hope for this alien baby who came too soon.  Eleven weeks ago we started a new kind of normal.
We laughed and we cried.  And we Googled and Googled.  And Googled some more.  The statistics were reassuring.  He should grow up just fine.  A week or two earlier and the outcome was less good.  But he was 31 weeks.  He'd be home by due time.

Ten weeks ago my sister had her first hold.  After days of standing and looking she got to be a real Mum.  Her baby in her arms.  The tears were all worth it.  The pain and the sorrow.  Forgotten in a moments embrace.  A tiny finger curled about her own.  But in this new kind of normal she must go home alone.  Leave her boy in his plastic cot.  Sleep on a mattress on the floor of a friend.  No husband beside her to hold her tight.  Just the lingering smell of disinfectant on her hands.  A plastic pump clamped to her breast.  Thoughts of her little boy in his box.  And the hope that he'd be alright.

Nine weeks ago.  Eight.   And the progress is slow.  We thought he'd moved up to high dependency but no he'd gone back to intensive care.  We learned all the beeps and when to worry and when to ignore.  We got familiar with terms like intubation and aspiration, CPAP and low flow.  We laughed at his medications, morphine and caffeine and to help with discomfort there was glucose as well.  We cheered when he started getting injections of milk.  One millilitre each hour.  Such a big boy now.  We had to seek humour in mundane. In our new normal it helped to keep us all sane.

Seven weeks ago we received another blow.  He has brain damage we were told.  It can't be fixed and we can't tell you what it will mean.  You will just have to wait and see.  When he fails to reach his milestones, then we'll know more.
Fark! we thought as worst case visions flew across our minds.  He'll be fine, we said We'll love him just the same.  But we grieved the loss of a carefree ease for him in which to learn and run and play.  We cried.  We thought.  We tried to laugh.  We Googled and Googled.  And Googled.
He has moderate bilateral posterior Peri Ventricular Leukomalacia. They were big words to get our heads around.  Sometimes symptoms do not appear but in many a cerebral palsy diagnosis is expected and in our boys case it seems more likely that it will be less a case of if than a case of how severe.   

Six weeks ago we knew we had to stop crying and get on with loving our boy and hoping he'd come home soon.  We noticed though... all that drool.  The twitching limbs.  And he never made a sound.  We laughed it off... just like his mum.  His dad used to do that too.  Yet secretly we worried, would it always be that way?
So we held his hand and told him to be strong and promised him we'd never say he can't.  We'd simply keep on working out a new kind of normal.

Five weeks ago we had developed a routine.  During the week my sister spent her days by his cot side.  She went to bed late and woke in the cold, dark, pre-dawn to press a plastic pump upon her breast.  A practise she repeated at intervals through the day.  She worried about her milk supply and yearned to give it up.  You've done so well, we encouraged her.  It'd be a shame to stop now.  She showed him such amazing dedication.  What a wonderful Mum!
We went to visit each weekend and did our best to keep the humour flowing.  We told our boy how naughty he'd been and ordered him home to us.  We were not allowed to, but we always sneaked a little touch behind the nurses backs.  A little reminder that he wasn't alone and we loved him very much.

Four weeks ago the doctors ordered supplements in his feeds.  Protein shakes, we told him.  You need to fatten up!  But his precious little stomach didn't take well to these additions and his poo turned green and he vomited the whole lot up.  So they packed him off to the children's hospital for further tests.
We crossed our fingers and we crossed our toes as the fear of Necrotizing enterocolitis filled our heads.  Don't let them cut out his bowels we hoped.  Thankfully they gave him his first real bath instead and sent him back to the only home he'd known.
We all sighed with relief and hoped his luck had changed.  Yet we were getting to know what a bumpy road this new kind of normal would take.

Three weeks ago our little boy had blue crosses on his head.  They sent him off for an electroencephalogram out of concern that he was having seizures.  We scoffed at that.   He's not having fits... that's just his quirky thing.  And we were right.  So they moved him up to the High Dependency Unit and they gave him a big boys bed.

Two weeks ago our baby boy should've been born.  But no labour pains were ripping through my sisters body.  Instead, nine weeks on and she was still standing by his hospital bed.  The tiny foetus child had grown so much and was largely breathing on his own.  Only one green tube remained taped down into his throat.  Wires still monitored his status but the alarms rarely went off.  He could swallow so there wasn't so much drool and we could hear him now without his mask and without his plastic box.  Tiny newborn baby sounds, like magic to our ears.  And we knew he'd be so much more than the boy of our helpless fears. 
He's a placid baby for one who has undergone so much.  There's been x-rays and ultrasounds, transfusions and an EEG.  They're transferred him and injected him.  They've taken so much blood they had to put some back in.  He had bruises on his feet and wrists and burn marks near his toes.  He always tried to get that green tube out and gagged when he succeeded.  But the only time he really screamed was when they forced air down his nose.   

One week ago things still seemed to happen rather slow.  It felt like he was the forgotten boy because his mum took care of most of his needs.  It was time for him to suck.  His mum knew that but she had to fight and plead.  I've had enough!  she cried.  When they finally watched they were amazed at his ability.   
We were frustrated, annoyed, tired.  Get him home to a hospital nearby we said.   It's time.  And they put his name on the top of the waiting list.  And we dared to hope that he'd be home soon.


This week our boy is still in his hospital far away.  His mum is still tired and we all are too.  He has at least a week or maybe more before he can be moved.  His feeding schedule is up in the air and they may send him home with his tube.  Yet my sister has learnt that her voice will be heard if she speaks out loud enough.  Don't dis his ability!  We know he can do more than be that forgotten baby with the damaged brain.  He can suck.  He will suck.  Just give him a chance!  And remember that now we are living a new kind of normal.


edited to add:  He did it.  Take one supportive male nurse, one very determined Mum and one battler of a baby and you get a first proper breast feed, a much improved feeding schedule, a certificate and the go ahead to do 2 breast feeds a day.  At 81 days old our little boy is feeding on his own!





This week is National Cerebral Palsy Awareness Week. 
Hopefully, soon our boy will be home and we can give him a much needed hug.