Serenade for a Small Family

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by Ingrid Laguna

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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