I shook my head. ‘It was all I could do to get myself
over here this morning,’ I said. ‘What if I hadn’t been here?
Jesus Christ.’
As Jordan grew, more of his sombre, calm personality was
revealed and I fell deeper in love. The more we bonded, the
higher my spirits rose—and the more his oxygen saturation
levels racked my nerves! Jordan was a thinker, like his
dad—serious. He had stunning big brown eyes and long
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dark eyelashes, perfectly shaped pink lips and a neat cleft
chin like Kirk Douglas. He looked more and more like
other term babies, with squishy baby limbs you wanted to
bite into. He met our eyes and held our gaze. He moved
his arms and legs, and peered around the room. We could
hear his soft cry now.
Oma and her new partner, Baden, had planned a trip
to Darwin on The Ghan, and they visited us in Adelaide
on the way. They sat together on the small cane couch in
our living room and talked about their recent travels. It was
the first time I had met Baden, who was unassuming and
easy to be around.
The living room window overlooked King William Road
and the entrance to the hospital. I was edgy, wanting to get
back to Jordan, as always, and keen for Oma to meet him.
When we eventually headed over there together, Jordan
was wrapped up and sleeping.
‘Ooo . . . zech hah! Beautiful!’ said Oma.
Baden took photos of Oma with Jordan, and I stood back
beaming. ‘This is your great-grandmother, Jordy!’
It seemed as if a stream of babies on all sides, like moving
traffic, grew stronger and moved out of intensive care into
SCBU (the Special Care Baby Unit) and home. We waved
them off and befriended the new ones. I wanted someone
else to be doing it as tough as we were. After Leo died,
part of me wanted tragedy and loss to happen to someone
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else. Every time I heard of another baby moving off into
the nursery, I was angry, and jealous. We’ll get there, I told
myself. That’ll be us one day.
When yet another new baby, born at a big fat twenty-
six weeks, moved into the vacated cot beside Jordan, the
mother and grandmother of the baby looked eagerly my
way to make friends. But I refused to engage—instead,
I gave them a ‘back off ’ look. I couldn’t go through it
again. Anyway, they weren’t there for long.
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When Jordan was four and a half months old, Benny and I
moved into a great three-bedroom terrace in North Adelaide,
a ten-minute walk through parkland to the hospital. We
had considered moving to Canberra so Ben could pursue
work in government policy-making in renewable energy, or
back to Melbourne to be close to family, but we decided to
stay in Adelaide, where there were people at the hospital—
especially Peter—who knew Jordan’s history and knew us.
I loved and respected Peter more than I could put into
words, and trusted him completely with Jordan’s health. He
had been with us through our most harrowing times. I was
in awe of him, and could never find enough ways to thank
him. ‘Thank you’ sounded so hopelessly inadequate at the
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end of yet another drawn-out and intensive meeting, where
Peter had given us his time and focus to meticulously explain
Jordan or Leo’s condition and treatment, and to encourage
Benny and me to stay well and strong. He always seemed
prepared to stay with us until no stone was left unturned.
In Adelaide, Peter could continue to be Jordan’s
paediatrician. We knew that when he came home, Jordan
would still need oxygen, hooked up to a cylinder, and that
he may need feeding via his nasogastric tubing for some
time. His lung disease meant that he would be susceptible
to respiratory infections for the long term, and hospital
visits were likely.
Our new house was a long, narrow terrace with three
high-ceilinged bedrooms and a sunny open-plan living and
kitchen area. Glass double doors led onto a small paved
courtyard at the far end of the house. I was in love with
the place from the moment we first opened the door.
Benny set up his home office in the front room, with
his desk looking out through glass doors onto the front
courtyard. The room next door was our bedroom, and the
last room along the corridor would be Jordan’s.
‘Jordy will love this room!’ I said, turning in a slow circle
with my arms spread wide. The room was a good size, with
pale blue walls and a large north-facing window. We were
finally settling somewhere for the long term.
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Then shortly after the big move, two brilliant things
happened: Jordan was moved from a closed cot to an open
one and, to my pure delight, he started breastfeeding. In
an open cot, we could finally get close. We had access! We
could touch him easily, kiss him and breathe in the smell
of his skin and hair. We could hold our faces up close to
his, run a finger down the soft skin of his arms, and drink
in the sight of him from every angle.
Midwife Kelly taught me how to breastfeed. She parked
an armchair beside Jordan’s cot and pulled the curtain around
us, then carefully passed Jordan into my arms. I unclipped
my bra and held him close to my nipple as instructed. Jordan
opened his mouth and attached straight away. I squealed,
and so did Kelly.
‘He’s sucking! Oh my god! I’m breastfeeding!’ I beamed
with delight.
‘Well, look at Jordan!’ exclaimed Kelly, eyes wide, hand
to mouth, shaking her head. ‘What a clever boy!’
My morning phone calls were being rewarded with
increasingly good news of Jordan’s healthy weight gain.
Jordan was coming out of the woods! He had reached 2760
grams. The average weight of a term baby at birth might
be about three kilos, so he was getting there. There was
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even talk of moving him out of intensive care and into the
Special Care nursery.
He was still in a fair bit of oxygen, but he was making
progress. I was breastfeeding him two or three times a day,
and loving it. I bathed him in organic baby rose oils daily,
fussing and cooing, and massaged lavender baby cream into
his skin.
The day after Ben left on a work trip to Alice, I was
sitting with Jordan in NICU when a man introduced himself
as a neurological surgeon. He had a relaxed and friendly
feel about him, but I had not been warned of any such
meeting. I was worried.
Vince had thick dark Greek hair and his stomach pushed
against his shirt, levering his suit jacket open. He cut to the
chase: ‘Fluid has accumulated in the area around Jordan’s
 
; brain,’ he said. His hands were in his pockets—how could
he look so casual while dropping a line like that? My heart
rate quickly caught on and quadrupled. ‘We need to drain
it away . . .’ he said.
I interrupted him: ‘Can we please go somewhere away
from Jordan’s cot?’ It wasn’t that I didn’t want Jordan to
hear, but I found it too much to be caring for Jordan and
having this scary conversation at the same time. My heart
pounded so hard I thought it must have been visible. As far
as I knew, Jordan had been progressing perfectly.
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‘Sure. We can do that.’ Vince led me to a quiet corner.
‘Jordan needs surgery—he needs to have a ventricular
peritoneal shunt put into his head to keep f luid drained
away from the area around his brain . . . to keep the pressure
off it. We’ve been measuring his head circumference daily,
and I have run tests.’
I tried to stay calm while Vince talked me through the
details. I wished Ben were with me.
‘The shunt will probably need to stay there for the rest
of his life, and it may need to be replaced down the track,’
he said. With no frame of reference for any of this, I felt
like I was under water. Vince saw my worry. ‘It is not major
surgery,’ he assured me, with his hefty hand momentarily
on my shoulder. ‘Jordan might not grow up to be a rocket
scientist—but he can run a deli!’
That last line would have reassured me if Vince had
not added one other thing. He peered up close at Jordan’s
oxygen setting and shook his head. ‘Looking at how much
oxygen he’s in . . .’ he said. ‘It’s his lungs I’d be worried
about!’ And with that, hands back in his pockets, he walked
off, shaking his head, leaving me staggered. How serious
was this? It sounded bad—surely anything to do with the
brain was worrying. I felt light-headed. I had to talk to
someone. Fast.
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When Jordan was returned to us after the surgery, he was
back on the ventilator with a white bandage wound round
and round his head. He looked like a wounded soldier.
It felt like ten steps backwards. He was bruised and pale,
and the familiar strips of white tape kept his eyes closed as
he lay perfectly still, anaesthetised and paralysed. He was
accumulating scars all over his body.
I sighed heavily and covered my mouth with my hand—
still sweaty from the anxious wait for his return. Here we go
again, I thought . Come on, Jordan. Come on!
Jordan did not recover from the surgery easily. It was a
week before he came off the ventilator, and then he needed
extra steroids for his lungs and was again hooked up to
the nitric tank. Each time the doctors tried to reduce the
steroids, his oxygen requirement shot back up. Three times
his heart failed, and three times he was brought back to life
and manually breathed.
On one of those bad nights I was visiting NICU at
3 a.m. when registrar Laila was on duty. She took one
look at me. ‘Come on, mother bear,’ she said. ‘You’ve got
to get some sleep.’
My face had become permanently pale and the skin
around my eyes looked bruised. I rubbed them. ‘I can’t,’
I said. How could I?
But Laila passed two sleeping pills into my hand and led
me from the room. She made up a bed for me in her office
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and I slept until seven. When I woke up I staggered into
NICU, disoriented, and worried sick about Jordan. But he
had made it through the night.
It took two scary weeks for Jordan to recover from this
surgery; his oxygen requirement finally came back down
to a reasonable level and he was himself again.
Very early one morning, I approached his cot to do
his cares. ‘Morning, Annie! Morning, Bellamy! Morning,
Denise!’
‘Good morning, Ingrid! How can you look so lively
so early in the morning?’ asked Bellamy, Jordan’s midwife
that morning.
‘I look lively? Oh well, that’s good. I don’t feel so hot.
Just looking forward to seeing my boy.’ I sat on the stool
beside his cot and rubbed my eyes. Bellamy was efficiently
rubbing antiseptic gel over her hands. ‘I love it when it’s
you looking after Jordan, Bellamy.’
‘Oh, thanks. Well, I love it too.’
I slipped my pinkie into Jordan’s grasp. Then I gasped
and clutched my chest. ‘What’s wrong with Jordan’s foot?’
‘Hmm?’ murmured Bellamy.
‘His foot! Look at this!’ I lifted the wrap to reveal Jordan’s
foot—bruised a deep purple up to his ankle.
‘Oooh,’ said Bellamy. ‘That looks bad. He had a heel
prick for a blood test this morning.’
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‘He has heel pricks most mornings! I’ve never seen
anything like this!’ I was angry and upset.
‘No—it’s not normal.’
Bellamy paged the girl who had taken his blood that
morning, telling me: ‘It’s important she knows what
she’s done.’
The culprit came towards us, defensively holding a
clipboard in front of her chest—a proud girl with a mass
of dark curls down her back. ‘I just wanted to show you
Jordan’s foot,’ said Bellamy, watching her face.
I stepped back so the girl could look closer. With a barely
detectable shrug, she said, ‘These things happen.’
‘You must have squeezed it too hard,’ said Bellamy, still
trying to catch her eye.
I drilled into the back of her head for some sort of
remorse or apology , but she was not the type, or she was
too young to have learnt when to back down. She met my
eye for a moment before turning and walking away.
That girl, whose name I never knew, never took Jordy’s
blood again—at least not while I was in the room, and
probably not while Bellamy was looking after him either.
After five months in intensive care, the day finally came for
Jordan to be moved into the Special Care Baby Unit—the
last step before going home. I was really excited, but also
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nervous. We had been in NICU for a long time and I knew
everyone there. I knew how things worked, I was at home.
Jordan received high level attention and care in NICU. What
would happen in the nursery? Also, the prospect of taking
him home was now real, and that reality triggered its own
fears: with Jordan’s fragile lungs, he would be vulnerable.
How would I know what to do if he got sick? How would
I cope with looking after him while Ben was at work?
For the move, Jordan’s oxygen tubing was detached from
the wall and reattached to a portable cylinder. Annie, Sue
and I wheeled him out of NICU to an enthusiastic farewell
choir. Lulled by the movement, Jord
an slept. After setting
up his cot and reattaching his oxygen to the wall in a side
room in SCBU, we were left alone.
SCBU, pink-walled and brightly lit, housed rows of
babies in open cots. Slapdash midwives skittered between
them, calling across the room to each other. They laughed
and talked out loud while deftly changing nappies and
burping infants. They talked openly together behind the
main counter, and in corners of the room they drew curtains
to show bewildered new mums how to position their babies
for breastfeeding. The poor mothers had dark hoops under
their tired eyes and shifted in their seats, their sore bums
fresh from childbirth.
Jordan was in one of only three tiny side rooms—each
about two square metres wide. We were grateful, considering
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the alternative was to be amid the rows of babies in the
main room. But I was also concerned, because although
Jordan had grown, his voice was still soft from being on
the ventilator for so long, and I worried that the staff in the
main room would not hear him when he cried.
I blew up a photo of Jordan’s face, big eyes peering
earnestly out, and stuck it onto a large sheet of cardboard
beside these words in thick black texta: ‘MY NAME IS
JORDAN. I HAVE A VERY SOFT CRY . ’ I stuck my
new sign up in the window to his room and stood back,
my arms folded across my chest, to make sure it could be
seen from anywhere in the room. It could be, so why was
I not more reassured?
But in fact, for the most part, the next two weeks were
kind of blissful. Jordan’s room was warm, and I brought in
a stereo and a lamp for cosy lighting. I asked for toys and a
mat so Jordan and I could play on the floor together. I lay
on my back, within reach of the oxygen wall connection,
and he lay on my stomach. I helped him to sit. He tried to
pull himself along and I was delighted, calling midwives
over to see. I let Benny know whenever Jordan was waking
up so, if he wasn’t too busy, he could come and join in the
fun. I wheeled in the bath and lathered him in lavender
and rose baby soap.
I held Jordan up over my shoulder and turned my back
to the main room so he could be part of the activity in
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SCBU. I rocked from side to side. Midwives waved or came
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