Lily's Strong Grip Gives Us ConfidenceThe first of May is a day I will never forget. It started out no different from any other, and ended in such catastrophic tragedy that seven days later I find it impossible to describe fully in words what has happened. Early that morning I went to the gym and ran into a few friends. I boasted proudly about my two daughters, who were still less than two weeks old, but who were, by most measures, doing extremely well.
Nothing could have prepared me for the doctor's phone call. It came out of the blue around midday, warning me that one of my two daugthers, Pearl Alexandra, had suddenly gone from being otherwise healthy to "very sick" in a matter of hours. More phone calls followed, each with escalating urgency. Gradually the doctors, neo-natal fellows, nurse practitioners and others began using exclusively pessimistic language; best case scenarios, described cautiously just hours before, quickly evaporated like a warm breath on a cold winter day. Panic mode set in and seized me, as there seemed to be no hope to cling to. It was crystal clear, however: Pearl Alexandra was in terrible trouble and there would nothing anyone could do to save her. I had been a parent for 12 days, and I was suddenly drowning in the dreaded nightmare scenario. My child was spiralling downward rapidly, and I was utterly helpless. In a few hours this episode would come to a crashing, horrifying end.
Late in the afternoon, a nurse practitioner using very blunt language practically ordered me to get to Toronto "immediately." I raced home to grab my passport. Emerging from the subway at 72nd Street and Broadway I ran into two friends I had not seen since the twins were born. My mouth was so dry I could only manage one word utterances. I let them go on their way, running from them as they asked if they could help. I scolded myself for my indulgence. Optimistically, I had stepped away for the babies for a day to wrap up work I had abruptly walked away from ten days earlier. How desperately I wanted to reverse that decision now. "How could this be happening?" I had held Pearl just two days before and she was doing so well in every respect.
Passport now in hand, I jumped into a cab, not even knowing which airport or which airline I was going to, still trying to convince myself that a slim chance still existed that this would be a close call, and that the doctors would turn this around. However, my body began to have visceral reactions with each passing phone call. "We are trying to stabilize her for transport to another hospital for emergency surgery," followed by "we are unable to stabilize her, get here immediately."
Frantically, I scrambled like a madman to get back to Toronto from New York. Barely making it on to the last flight out, I landed in seat 15B of a half empty plane drenched in sweat, unable to sit still; in my mind, I kept repeating the words "please not this," in my hands I held my head as if to prevent my brain from exploding. I was unable to think of anything but my tiny, defenseless daughter. It was the longest 55 minute flight I ever took.
As soon as the plane landed, my Blackberry vibrated. A foreboding text message from my sister contained no information about little Pearl, but said: "The Police will meet you at the airport and bring you to the hospital." That text message ended all my hope in one instant. There could never be a good reason for a police escort in such a circumstance. The police whisked me downtown, sirens blaring and lights flashing. Doctors knew they were down to minutes for poor little Pearl and wanted to get me there "in time." But little Pearl was pronounced dead just after 10 p.m. My sister and brother-in-law were with her at the time. A moment later, I burst into the Neo Natal Intensive Care Unit, fighting an overwhelming sense of panic, but by then it was all over. It seemed like the entire staff was just standing there waiting for me to come through the door. For the first time, I did not stop to "scrub in". I was lead to Pearl's incubator, where a crowd of nurses had formed. Temporary screens gave some measure of privacy. My reaction though when I saw the screens was gloomy: screens up meant either a mom was breast feeding, or a baby was very sick. These were bad news screens. Just like the bad news phone calls, and bad news police escort that preceded them. I stared at Pearl, bundled up and looking as though asleep, lying in my sister's arms. I realized she was gone and that in that instant I had lost my daughter. I just stood there staring at her. It was incomprehensible. I know the whole time we spent in NICU after I arrived was extremely brief, but when my gaze fell on Pearl's peaceful, still face time stopped having meaning.
I immediately went on auto pilot. The next few days I tried to understand what had happened, how this "silent killer" called "NEC" for necrotizing enterocolitis had killed Pearl in just a few hours. The more I tried, the less anything made sense to me. 28 and a half week old preemies have a 98% chance of survival. That very statistic had given me so much hope on April 19. Now I felt that it served only to mock me. Heartbreak spread quickly. Only seven months before my mother, Pearl, was killed by another acronym, ALS, the dreaded, incurable Lou Gherig's Disease. The death of baby Pearl who had been named after my mother thus hit us all hard; my father especially, as he repeated, muttering the words, that he had now lost "two Pearls." My brave sister and brother-in-law had been seated next to Pearl before my arrival, watching one futile, invasive medical intervention after another, until finally there was nothing left that could be done. I could be consoled knowing that they were there and that she was not alone, but I sensed that they had suffered greatly from the experience. Pearl, as it turned out, was lost to us hours before her official death. NEC had advanced so rapidly, her entire body was filled with infection. No amount of antibiotics could save her. From the first moment it was identified, she did not stand a chance. Last Friday she was buried along side her grandmother, in what had to be one of the most sad and most unexpected internments imagineable.
In twelve days of life, Pearl did bring joy to us. She was adorable, and strong. She was responsive and quite happy to be taken on out, even as early as Day 3, for a "kangaroo cuddle" on my chest. I can't imagine that I'll ever forget this experience. The pictures you see above were taken the last time I held her, on Sunday April 29.
Part Two-Holding on to Hope
Lily Isabella has been our emotional salvation this week. This is no exaggeration. My heart is broken, but I exhort myself not to allow Pearl's death to overshadow Lily's life.
Holding her reminds me that I am still a father, and that I have a daughter who needs me. Lily has continued to improve remarkably. She has attracted her fair share of attention from the NICU staff. Now at Week 31 ("corrected gestational age") she has reached "full feed," meaning she is now eating as much as she can be fed for her weight; her heart rate and breathing are stable; she is alert and responsive; she moves around a lot, cries and seems to giggle at times. She looks and acts in many ways like a full term new born and, except for her tiny size, it is often hard to remember that she is a preemie. As you can see from these pictures, we spend hours with her out of the incubator, and she thrives from human contact. Two of her many nurses, who have been phenomenal with Lily, have also been indispensible to me: 
I don't kow how I would have made it through this week without their support. My sister, brother-in-law, brother, father and I remained singularly focused on Lily and have taken solace in every tiny, empirical mearsurement of improvement. It is difficult to imagine leaving her for an hour or a day, however. I am torn about what to do next. Since Pearl died last Tuesday, I have spent almost every waking moment with Lily, and I know that is not sustainable.
Frantically, I scrambled like a madman to get back to Toronto from New York. Barely making it on to the last flight out, I landed in seat 15B of a half empty plane drenched in sweat, unable to sit still; in my mind, I kept repeating the words "please not this," in my hands I held my head as if to prevent my brain from exploding. I was unable to think of anything but my tiny, defenseless daughter. It was the longest 55 minute flight I ever took.
As soon as the plane landed, my Blackberry vibrated. A foreboding text message from my sister contained no information about little Pearl, but said: "The Police will meet you at the airport and bring you to the hospital." That text message ended all my hope in one instant. There could never be a good reason for a police escort in such a circumstance. The police whisked me downtown, sirens blaring and lights flashing. Doctors knew they were down to minutes for poor little Pearl and wanted to get me there "in time." But little Pearl was pronounced dead just after 10 p.m. My sister and brother-in-law were with her at the time. A moment later, I burst into the Neo Natal Intensive Care Unit, fighting an overwhelming sense of panic, but by then it was all over. It seemed like the entire staff was just standing there waiting for me to come through the door. For the first time, I did not stop to "scrub in". I was lead to Pearl's incubator, where a crowd of nurses had formed. Temporary screens gave some measure of privacy. My reaction though when I saw the screens was gloomy: screens up meant either a mom was breast feeding, or a baby was very sick. These were bad news screens. Just like the bad news phone calls, and bad news police escort that preceded them. I stared at Pearl, bundled up and looking as though asleep, lying in my sister's arms. I realized she was gone and that in that instant I had lost my daughter. I just stood there staring at her. It was incomprehensible. I know the whole time we spent in NICU after I arrived was extremely brief, but when my gaze fell on Pearl's peaceful, still face time stopped having meaning.I immediately went on auto pilot. The next few days I tried to understand what had happened, how this "silent killer" called "NEC" for necrotizing enterocolitis had killed Pearl in just a few hours. The more I tried, the less anything made sense to me. 28 and a half week old preemies have a 98% chance of survival. That very statistic had given me so much hope on April 19. Now I felt that it served only to mock me. Heartbreak spread quickly. Only seven months before my mother, Pearl, was killed by another acronym, ALS, the dreaded, incurable Lou Gherig's Disease. The death of baby Pearl who had been named after my mother thus hit us all hard; my father especially, as he repeated, muttering the words, that he had now lost "two Pearls." My brave sister and brother-in-law had been seated next to Pearl before my arrival, watching one futile, invasive medical intervention after another, until finally there was nothing left that could be done. I could be consoled knowing that they were there and that she was not alone, but I sensed that they had suffered greatly from the experience. Pearl, as it turned out, was lost to us hours before her official death. NEC had advanced so rapidly, her entire body was filled with infection. No amount of antibiotics could save her. From the first moment it was identified, she did not stand a chance. Last Friday she was buried along side her grandmother, in what had to be one of the most sad and most unexpected internments imagineable.
In twelve days of life, Pearl did bring joy to us. She was adorable, and strong. She was responsive and quite happy to be taken on out, even as early as Day 3, for a "kangaroo cuddle" on my chest. I can't imagine that I'll ever forget this experience. The pictures you see above were taken the last time I held her, on Sunday April 29.
Part Two-Holding on to Hope
Lily Isabella has been our emotional salvation this week. This is no exaggeration. My heart is broken, but I exhort myself not to allow Pearl's death to overshadow Lily's life.
Holding her reminds me that I am still a father, and that I have a daughter who needs me. Lily has continued to improve remarkably. She has attracted her fair share of attention from the NICU staff. Now at Week 31 ("corrected gestational age") she has reached "full feed," meaning she is now eating as much as she can be fed for her weight; her heart rate and breathing are stable; she is alert and responsive; she moves around a lot, cries and seems to giggle at times. She looks and acts in many ways like a full term new born and, except for her tiny size, it is often hard to remember that she is a preemie. As you can see from these pictures, we spend hours with her out of the incubator, and she thrives from human contact. Two of her many nurses, who have been phenomenal with Lily, have also been indispensible to me: 
I don't kow how I would have made it through this week without their support. My sister, brother-in-law, brother, father and I remained singularly focused on Lily and have taken solace in every tiny, empirical mearsurement of improvement. It is difficult to imagine leaving her for an hour or a day, however. I am torn about what to do next. Since Pearl died last Tuesday, I have spent almost every waking moment with Lily, and I know that is not sustainable.