Isabella arrives

    

                            Mary and Bob, taken in St. Andrews, N.B.,

                            the summer before Isabella was born.

     You think there’ll never be a child more perfect than the one you give birth to; they are perfect in every way, despite their little smashed-in faces, bald spots and droopy skin. At least that’s what I thought. I thought my kids – born two months prematurely, slightly downy, uncooked-looking, rushed off to incubators at Sick Kids hospital – were fabulous.  Very tiny, very wrinkled, but fabulous.

       The fact our kids – twins – survived was always a source of amazement and wonder to us, so as they grew up we were knocked out by everything they achieved. We felt blessed. They were special and we were so very thankful – despite Alastair’s many hospitalizations for his cerebral palsy, the early ops to drain cerebral hemorrhages, his orthopedic ops, run-ins with seizures, his various therapies – for their very existence.

       During April, May and June of 2009, we didn’t so much feel blessed as cursed and angry. Our daughter – the healthy, over-achieving twin – was heavily pregnant and still in neuro ICU in what they call “a heightened state of awareness.” But she was nowhere near able to comprehend what had happened to her. If we pulled away the hissing oxygen and covered her trach with a tissue, she could, and would, talk to us.

    If Mother’s Day was no picnic, Father’s Day was even worse; both Bob and Paul were caught up in a maelstrom of grief and bewilderment. Other than cry, you don’t really know how to act as a parent in an ICU.

     I’d bought Paul new Birkenstocks for Mary to give him on Father’s Day. When I covered her trach and asked what she thought about the gift, she croaked, “How much?”

     I was ecstatic. She was still in there, my money-conscious, economic Mary. She may not have been fully aware of her surroundings but the essential Mary was – and is to this day – still there. (It’s just the amount of work we have to do to get The Essential Mary to communicate with us.)

     It's almost three months into her ICU stay and Mary still has a number of visitors coming and going. When I asked her one day what she thought of a particular individual, she looked at me, frowned and whispered: “You might say she’s an enigma.”

      The nurse and I exchanged shocked looks. But this seemed good!

     And so we carefully watched Mary’s slow recovery, from lying prone, to sitting up briefly in the bed and working with physiotherapists. The thing that really terrified us at this time was that she seemed to have no memory: We’d ask her about something and she’d be puzzled, shake her head. She called Bob ‘Doug,’ her ex-husband’s name. I can’t imagine how traumatic this must have been for him. We’d talk about things – like her cat Lucy, acquired more than a year earlier – and she’d look at us blankly. We determined, by gentle questions and responses, that she had completely lost all memory of a year, possibly two. She just couldn’t remember events, travels, her problems with the shunt. It was terrifying for us – for her.

      And no one really knew why, and no one – medically – was saying much. She was alive. But … but. We discovered – in the most difficult way possible – that there’s just no accounting for the resilience, the sheer will and power of the human spirit. Never call time unless you’re really, really sure.

       There were many ‘team’ meetings about the baby’s delivery date. And thankfully, there was no more talk of palliative care. But what lay ahead now?  What were the chances her memory would return? What other damage had been done? Clearly she had made it, but what would be the consequences, mentally and physically. We just didn’t know.     

    One afternoon, a lovely nurse practitioner from the floor came into ICU to talk to us. He would be overseeing Mary’s care once she left the unit. This man would play a crucial role in Mary’s life for the next three and a half years. He would proved to be a fabulous individual and one of the few people we ever really trusted. He saw us all at our worst. He tried valiantly to help us solve so many problems. He was our go-to guy. And we miss him.

      But his introduction that day, near the end of Mary’s pregnancy, was a real reminder this cossetted stay in ICU was about to come to an end: Mary had been treated like a china figure wrapped in cotton, monitored, watched over and treated wonderfully by ICU staff: There were two patients, they figured, not just one.

     The delivery date decided on by the obstetrics team was June 25. We were told Mary would be taken from ICU early in the morning – we were to be at the hospital at 9 a.m. sharp – and they would do what they called a “cold” C-section; no induced labour, no discomfort. Mary would be given a general anesthetic and returned to ICU to recover for a day and night.

      We were, by mid-June, exhausted beyond belief, awash in uncertainty and fear. We had gone from a frantic search for grief counselling, to utter confusion. None of us ever believed we could become caught up in such a situation; and there was poor Mary, completely unaware of what was going on.

    Waking up in the morning, I’d think, for just a few seconds, that I’d had a nightmare and that if I could get out of bed, it would go away. Then it would hit me, all over again. This was real. This was serious. And there was a baby about to born to a mother who couldn’t even remember she was pregnant.

    

      It was a few days before the scheduled delivery date and Mary was squirming around with Braxton Hicks contractions.  OB nurses sat and watched and timed them. It might be the real thing, after all. I patted Mary’s hand and said, “Well, you’ve got to expect this. You’re eight months pregnant!”

      She turned to me, eyes wide in horror and I covered her trach. “What? What is it?”

       “But I was taking the pill!” she croaked, a horrified look on her face. I didn’t know whether to laugh or cry. Not only did she not know where she was, she wasn’t aware she was pregnant and amazingly, she was totally unaware of her enormous belly. Mary was completely disconnected from her body.

    We sat one night with her and waited out these false labour pains, receiving permission to stay well past visiting time. It was after 9 p.m. and we were all tired, wondering if Mary will go into labour before her scheduled C-section.

      The ICU was humming along. There is always something to check, drugs to administer, tubes to change, machines to turn off. It’s intensive care for a reason.

       We’re murmuring in the corner – at this point Mary has a bed with two huge windows – and we watch the night sky and her. Down the short corridor there is a flapping of curtains, people coming and going, cries and sobbing. Within 10 minutes – 10 very short minutes – a young man dies from wounds sustained in a violent fight, and right next to him, a young woman, 22, passes away as the result of an auto accident.

      So senseless. So very tragic. The ICU falls completely silent. It’s as if even the nurses have stopped breathing. Heads lower.

     “This happens when deaths occur,” the nurse whispers.

     “I don’t know how you do this,” I tell her.

       But it reminds us, as wrapped-up as we are in our situation, that we are not alone when it comes to loss or tragedy. We still have Mary. And what’s more, we have a new life to look forward to – and very soon.

      Mary’s false labour stops, she settles down for the night, the OB nurse leaves and so do we.

  

                                                 Bob and Isabella

     Thursday, June 25. This is the day. We get to the hospital – Paul and I and Alastair, Bob, his mom Lorraine and stepdad Dave – and we are sent to a waiting room outside an OR. Will they allow Bob in the OR? There is some confusion right up to the last minute about this as he suits up and puts on a head net. Well, maybe … But no. He will be standing in a room close by and the baby will be brought to him immediately.

       Everyone vanishes and we are left for quite a long time with the TV – which announces that Michael Jackson has died – a pile of old newspapers and nerves. Very bad nerves. We are assailed by what-ifs.  I worry not only about the new baby, I worry about MY baby. She’s out cold, having a C-section and being delivered of a child she very much wanted – even though she can’t remember that fact. And she is totally unaware, can’t remember a thing. I want to feel joy – great joy – and all I feel is fear – deep, grinding and abiding fear.

       Masked faces appear from nowhere. There seems to be three or four of them and they’re quite jolly, all hollering at us to give them our cameras. One is a jubilant obstetrician, the others nurses and residents, among them, the Irish woman who administered the many ultra-sounds. They’re all so happy and overjoyed. But I feel numb, afraid.

     So Isabella Grace is here: She arrived without a hitch, it seems, and she weighs 6 lbs, 1 oz. Not bad for a baby born a month early. The flurry of masks disappear and then they all charge back waving our cameras.  There’s a picture of Bob looking utterly overcome; there’s the baby, wearing a toque; how Canadian, I think.

     “Mary will be heading back to ICU,” they tell us. “Isabella is heading up to the nursery.”

       We rush to the lobby behind the double doors, just outside the OR. Bob is still in his funny suit and a nurse wheels the incubator to the elevators: There she is. Perfect. A lovely round head, Mary’s little face. She’s okay.

                            Mary, in the nursery, after her bed was wheeled 

                                 there so she could meet her Isabella

       We became, at this point – despite it all – jubilant. Something wonderful has occurred out of all the pain and horror and loss. Things were far from normal, but here was this wonderful little creature and Bob, so utterly devoted to Mary, was standing there looking besotted. 

      Later that day in ICU, I watched Mary – the new mom – deep in sleep, recovering from the anesthetic and C-section. It shouldn’t be like this, I thought. She should be upstairs in the maternity ward with that new baby, holding her – and with Bob.

      It wasn’t to be. It would never be.

      It was the end of one chapter, the start of another.

      As Bob sat beside the incubator upstairs, feeding Isabella and getting to know her, Mary spent her last night in ICU, one last evening and night of superlative care.

    Then she was moved to the floor, or main neuro ward.

      On that floor, despite the wonderful nurse practitioner, she would suffer greatly; four more falls over three and a half years. Her knees would be blackened in the first one, her face and lips would be cut badly in a fall during a physio session; she would come off the end of the bed and sustain a deep gash and require stitches.

     A month after that fall and that gash to the head, she would be left alone on a commode during the night– unbelted – and would crash to the floor. During the first craniotomy and an attempt to drain the bleeding from that fall in the washroom, they’d discovered a blood clot from the fall a month earlier. The bleeding wouldn’t stop. She’d have a second craniotomy within hours to drain the bleeding again. We honestly believed we’d lose her that day.

    She’d also have three failed attempts at rehab – and return each time with horrific infections from being left to sit in unchanged diapers, despite the fact she has never been incontinent.

     But so, so much more on that later.

     We were about to encounter the real world, the real hospital and the bureaucracy and workings of a hospital unit. Mary, a new mom, would be completely out of place, dazed, disconnected and fearful.

    

      Still, there was Isabella ....

         

                                                

                                                           Isabella

Next week: Life on the floor