Monday 30 January 2012

Pain and Joy: The bittersweet story of Noah and Ethan so far

I've lost track of days and suddenly realise that it is a month since I gave birth to my baby boys.  It has been a horrible haze of hospitals from which we are just now starting to face what will be our new life as a family.  Here's the story so far.

I woke the morning of the 30th of December at 3 am with crampy pains in belly.   My ceasaeran was booked for later that day.  Even though I wanted to sleep, I decided to get up.  I was excited.  I was also being kicked in the bladder and could use a trip to the loo.  When I returned to bed, I tossed and turned until 6am when Thom and I got up and made our way to the hospital to be booked in.
waiting, waiting, waiting

We were excited.  Not long now, we told each other.  We were fitted with hospital gowns.  Thom even got some orange Crocs to wear.  Me and bump were checked over.  A scan showed the two little guys ready to come out.  We couldn't wait to meet them.  Anxious hours of clock-watching, waiting for my turn, were made worse when I was put back a couple hours in favour of an emergency c-section.  My pains were getting more powerful and regular, and we took it as a sign that today was certainly the day this was meant to happen.

Finally I was brought in, arrnaged on the table and suitably numbed from the ribs down.  As the midwives laid me in position I heard a splash.  The three midwives exchanged worried looks.

'What was that?' asked one in a tone that set my heart racing with panic.
'I'm not entirely sure,' replied another, who called for the doctor and suddenly the room was filled with people, all speaking in a serious medical language possibly intended to keep me guessing.

Thom was brought in and his face was pale.  I was calmed by having him near.  He later told me that the sight that greeted him was a floor covered in blood.  The gush was my waters breaking but they were tainted with blood, shifting the routine ceaseran into a sudden emergency proceedure.

Minutes seemed like hours as I waited to hear a baby's cry.  I could hear the doctors working on them, but the babies were silent.  The doctors with me tried to assure me that many babies don't cry immediatly, but Thom's face showed fear.  He was watching our sons being recussiated.  Finally I heard the doctors give a cheer and a baby cry.  One little man was passed to Thom, looking shocked, but only for a brief moment before the doctors whisked him away to stabalise him.  The other was wheeled out by a group of smiling doctors, giving me thumbs-up and reassurance that he was breathing.
Noah just after birth

Ethan just after birth

I was stunned, drugged and shocked.  I was wheeled to a recovery room while Thom went to see the babies.  I first started to realise how serious things had been when doctors, midwives and anesthatists filtered in over the next few hours to hold my hand tell me how happy they were that the me and boys were ok.  Still, it didn't totally sink in and I imagined that in a few days we would all be home and happy.

Thom brought photos of the boys to me and we named them.  Ethan, because it means strong, and Noah, because it means comfort.  He sat near my bed while I came around, being visited reguarly by midwives checking on my blood pressure and giving pain medication.  I don't know how long we were there before a doctor arrived with news of Noah.  He was having great difficulty maintinaing his blood pressure and would have to be transferred to a hospital that could offer more intensive support.  A neo-natal intensive care unit in Norwich was ready to accept him and transport would be arriving to collect him shortly.

I had not yet even touched him, held him.  I was desperate to get out of the bed and see him.  My heart broke and tears were unstoppable as I watched the clock, counting the minutes before the nurses and doctors gave me the 'ok' to shift into a wheelchair and be taken to Noah.  After what seemed like hours, I was taken to him and Ethan in the Special Care Baby Unit.

Little bodies, naked except for diapers, wires and intravenous tubes, lying inside incubators.  The room was noisy with the beeps of the various machines they were attached to.  Doctors and nurses scurried around Noah, stabilising him and readying him for the journey.  I was allowed to reach in and touch his leg as IVs and nasal canulars were adjusted.  He calmed when I touched him.  I saw his eyes and heard his cry.  I did not know then that it would be the first and last time.

I didn't think I would survive watching him as he was taken away.  I don't know how loud I cried.  Confined to my wheelchair, I buried my face into Thom's stomach and sobbed.  The image of him leaving is burned in my mind.

The next morning, Thom drove to Norwich to see him.  I waited in Colchester, spending time in a wheelchair at the side Ethan's incubator.  The relief was amazing when Thom phoned to say that he saw Noah and things looked good.  He was breathing on his own and the photos Thom sent showed a relatively tube- and IV-free baby.

But our relief was short lived.  The next morning brought news of seizures in the night.  Noah had to be sedated to control the fits.  Despite my delicate post-surgery state, nurses and doctors agreed that Thom and I should get to Norwich as soon as possible.  I was discharged quickly after a dose of morphine and sent on my way with a pharmacy bag full of pain relief.  I hobbled out and into the car for the hour and a half drive to Norwich.

I was physically shaking with fear as we walked the long, dim hallways to the Neonatal Intensive Care Unit in the Norfolk and Norwich Hospital. The unit itself was bright with sunlight through large windows.  The airy room had both the feel of calm and urgency.  The nurses spoke in peaceful tones as they went about their work in unhurried fashion, but their calm was in contrast to the beeping machines tracking the breaths and heartbeats of the six or seven tiny babies in the room.  Each beeping protest signalled a potentially life-threatening crisis to which the nurses responded with all softly-spoken and slow-but-steady action.

Noah was in a bed nearest the window.  Silent.  Still.  A machine to assist with breathing and canulars in every foot and hand.  His brain being monitored through sticky pads attached under a little knitted hat.  The nurses and doctors, again with the all-enduring calm, explained Noah's status and invited us to stay in a room on the ward.

So we continued for almost two weeks.  Sleeping in Norwich on the ward near Noah.  Spending the morning with him before driving to Colchester to see Ethan for a few hours before heading back to Noah's bedside.  Days drifted into each other.  I would wake in the night with the sound of the beeping machines in my ears.  I would rush down the hall to see if he was still there.  The nurses would offer me an update, a tissue to dry my teary eyes and a chair to sit with him.  Hours could pass with me sat next his incubator.  I talked to him, told him stories, mediated, prayed.
The four of us together

He was expected to wake from the sedating drugs but days passed with no reaction, no movements. In the space between waking and dreaming, I thought saw his eyes opening.  Reality and my wishes were blending into one and I would have to retrace my memory.  Was he awake?  Thom and I kept hopeful between our tears.    We were told that no one could be certain what he would be like when he woke.  Brain damage was possible from the oxygen deprivation at birth and the seizures later.  We didn't care.  Whatever he was, he was mine and I wanted him.  The love I felt was strong enough.

In the hours sitting with him, waiting for a flickering eye or a twitching toe, Noah taught me something about love.  Love was something I could give him, something I could feel for him.   But love, no matter how strong, did not make him mine.  It couldn't secure any outcome simply through strength of the feeling.  Noah had been gifted his own life, his own path and journey.  No matter how connected to me, he was not mine.  I always knew that one day both the boys would have to go their own way.  I wasn't ready for it to happen now, but Noah's life was his and no matter how much I wanted him, he wasn't mine to have.  Surprisingly, as I separated my love for him from the desire to make the life for him that I wanted allowed me to love more completely and freely.  And the more this happened the more I could just be there for him.

After a week of no movement and an MRI revealing severe brain injury, doctors discussed their theories with us.  Noah was suspected to have suffered worse than Ethan from a placental abrubtion, when the placenta begins to separate from the uterus wall before the baby is born.  This deprives the baby of oxygen as well as all other things the placenta provides and most frequently results in death of the baby.  Sometimes of the mother, also.  Noah looked remarkable well shortly after being transferred to Norwich, but the initial brain injury is often not evident until 2 or 3 days later.  Noah was in a coma and he was not expected to wake.  He had several other organs that failed, presumably in an effort to preserve the brain.  While Ethan also had similar hardships, his kindeys and metabolic processes recovered where Noah's did not.

Noah was taken off his ventilator on 10 January.  It was uncertain how long he could breathe on his own.  Hours.  Days.  Years.  No one could say.  He was brought to our room and left with us, free from tubes and beeps for the first time.  I bathed him and applied oil warmed between my palms to his dry hands and feet.  We dressed him in clothes we picked for him and laid him between us on the bed.  Through the night we watched him breathe.  I memorised his face and held his hands.  He stayed on through the night.  I held him at times. His breathing slowed and he started to feel cold to my touch.  I thanked him for coming to me.  I told him I loved him and told him about the lesson he taught me about love.  As we neared morning, I promised to take care of his brother the best I could.  At 8.15 am his slow breathing stopped.  I watched for another breath, but he was still.  After 12 days of life, Noah left, quietly as the sun rose after a dark night.

I still find it hard to believe he is gone.  It's easy to think that he is still at the hospital.  Laying still and silent in his bed.

As much as I wanted to leave the hospital after that morning, I also struggled to leave the place where Noah died.  I ran my hands over the spot on the bed where he laid with us, wishing to soak in some part of him to keep with me always.

The doctors arranged for Ethan to be transferred to Norwich when it became clear that Noah might not recover to save us driving between them each day.  Although he also had a trauma at the birth, it was not as severe as Noah and his needs were not great enough to warrant a transfer to the more intensive care unit at Norwich.  But the kindness of the staff in Norwich meant that we could spend more time with the babies.   It was invaluable to have Ethan and Noah in the same place near the end.

Yet, even when we were readying to leave Norwich, Ethan still needed treatment.  As he was preparing for transfer back to Colchester, we were asked to review his discharge summary.  We read in shock and awe, saying to each other that surely this report was about Noah.  It hit me how much in the focus on Noah, Ethan's lesser crisis had taken a back seat.  The horror of it all hit me like a brick.  We were all lucky to be alive.  Ethan had lived up to his name as a strong little person.

While we left the hospital in Norwich, Ethan would have to spend another week in hospital at Colchester.  Family tried their best to mediate our pain of returning home by removing all things twin related.  The double buggy, one of the two moses baskets put out of sight.  Although sleeping in our own bed felt like heaven, we were aching to get Ethan home and try to piece together some kind of new life together.

Ethan had to prove that he could eat without the help of a feeding tube and recover from an infection left from a form of IV called a long line which fed nutrients directly to his heart.  Ethan made quick work of the feeding tube issue by repeatedly pulling it out until the nurses gave up and decided to see if he could maintain his weight through bottle feeding.  I had been trying to express breastmilk throughout the whole ordeal.  Now that Ethan's release depended on eating, Thom and I went to hospital for as many feeding times as we could to try and get breastfeeding going.  During the long drives between hospitals when Ethan and Noah were in different places, I used a portable electric pump to express in the car between Colchester and Norwich.  It was a frustrating and often fruitless endeavour, many times yielding only a drop or two of milk.  I was too stressed.  Crying, full of caffeine to keep me going and very little desire to eat.

Somehow, Thom and I kept each other going.  Trudging to the hospital at 4 hour intervals for feeding times.  Trying to breastfeed.  Topping it up with a bottle.  Changing nappies and settling him before trying to get home to rest for a brief while before the next round.  After 5 days of antibiotics, Ethan's infection had cleared.  The doctors did their rounds and looked him over.  They expressed concerns over his weight and whether he could maintain it, but I begged, promising that feeding him on demand would surely be better than the artificial arrangement at hospital.  The doctors looked thoughtfully at the notes and again at Ethan, keeping me on edge, before agreeing to let him home with us that day.  I cried.
Ethan showing off his bottle-eating skills

It felt like we were finally going to be able to start our life again, resurrecting what remained after the heartbreak Noah's death left for us.  But before we took Ethan home, we had an appointment to keep.  We were expected at the funeral director that day.

A day of extremes.  Of sadness and joy.  Taking Ethan home was magical.  Making arrangements for Noah's funeral was terrible.  The day felt bizarre between the highs and lows.  Neither felt exactly real.

Now Ethan has been home for almost 2 weeks.  Having him right there with us is wonderful.  For the first time we could hold him when we wanted.  But these last two weeks have also been strange.  As Ethan grows and changes with each day, I think of Noah and how life would be with him here.  I miss him.  I remember the feeling of his kicks inside me and wish that I could rewind everything to have him here again. Days march on, ever further from the last time I held him, from the day he died.  I don't want to forget him and everything I learned with him.  But the land of the living seems to naturally spiral away from the realm of the dead.  I've stayed indoors, watching endless hours of mindless TV in a bid to press the pause button and somehow stay closer to him.  When I have gone out, seen friends, it feels like he's slipping away.  No one asks about him, and its as if only we remember.  My body remembers and each step back into normal life feels wrong without him.
Family nap time

As much as it is still beyond my imagination to lose Noah, here we sit, this evening, Thom, Ethan and I.  Looking like a little family.  And between my tears, I smile.