Tight spaces between baby areas meant nurses had to navigate between parents. Specialized equipment could be brought in as needed.
In this fourth post leading into Alyssa’s November 17th birthday celebration, I take a break from the tears to instead highlight the urgency of this call to action.
Since Alyssa’s only home was in the NICU at SickKids, it was and will always be very special to us. But hospital design teams objectively describe it as outdated, crowded, and unable to meet today’s standards of infection control.
Each year, SickKids Hospital accepts hundreds of newborns that are so sick they need highly specialized skills, expertise and equipment to get a better chance at a strong start in life. The NICU is one of the busiest in Canada and treats 800-1000 newborns per year. In 2003, the role of the Neonatal Transport Team was expanded to include the transport of infants of up to two years of age.
SickKids has identified the following clinical area transformation requirements for the Neonatal Intensive Care (NICU).
Did you know:
Due to medical advances, babies born as early as 22 weeks and weighing as little as 450 grams are surviving more often.
These children need specialized care, as they are highly susceptible to infections, sensitive to noise, and dependent upon technology to breathe and moderate their body temperature.
In the GTA, fragile babies with additional medical challenges that require surgery or sustained life support can only be treated at SickKids.
The 34-bed NICU at SickKids is one of the busiest in Canada, running at capacity most days and providing leading-edge care to more than 570 critically-ill babies each year.
And yet it is out-of-date, crowded, noisy and cannot easily accommodate current technologies, infection control standards, or the one thing all newborns need most: their parents.
With four to six patients to a room, each encircled by equipment—monitors, diagnostic tech, ventilators, central lines—parents are given a rocking chair in a taped off area and noise-canceling headphones to create privacy.
The average length of stay in the NICU is 14.5 days, but it’s not uncommon for families to stay for months.
Mary trying to calm Alyssa while the nurse recorded her weight. The lack of space and the need for procedures and diagnostics meant that there was no place for parents to sit or sleep beside their critically ill newborn, and larger diagnostic technology could not be brought in but rather Alyssa had to be prepped and stabilized for transport to each appointment.
What the new, state-of-the-art building will provide:
Premature and critically-ill babies and their families the environment they need to properly heal and grow.
Large, comfortably furnished private rooms for every patient and their family will encourage bonding, reduce parental stress and infection risks, and enable better health outcomes.
An expanded unit with 23 more beds will ensure capacity to accommodate more critically-ill babies and their families.
Added space, modular walls and flexible electrical wiring so lifesaving equipment doesn’t get in the way of families and staff, and the unit can adapt as future medical interventions and treatments change.
Smart window glass for precise light and temperature control.
Diagnostics will come to the bedside so fragile patients don’t have to be moved.
For more information about the vision and commitment required to unleash the full potential of SickKids Hospital, please visit www.fundthefight.ca.
Newborn babies will have a better chance at a strong start via the new 57-bed NICU, AND your donation will also address issues where ceiling height, HVAC systems and space are restricting the hospital’s ability to adapt to advances in critical care technology.
While natural light is a positive feature of a healing environment, blazing sunshine through outdated windows can cause babies to overheat and adds one more variable – an inconsistent ambient temperature – for overworked nurses to manage.
The fundraising flash mob, where we asked everyone to give 20 dollars for Alyssa’s birthday, was a tribute to NICU staff and also a promise to them. We vow to always have their backs, respect their expertise and do our utmost to provide the infrastructure they need to do their important work.
Also, did you know that November 17th happens to also be World Prematurity Day? Let’s hit that donate button, send our $20 and proudly share our good deed. If you know you won’t be online on November 17th, there is nothing stopping you from donating NOW, while you are here.
Keep the conversation going! Make this your profile picture for the weekend, let everyone know that #20for20 means ALL THE COOL KIDS ARE DONATING $20 :), and share the link: www.MotorcycleforMiracles.com/DONATE.
Don’t forget to add the hashtags #Love4Alyssa and #Love4____, filling in the blank with the name of someone special to you, in whose honour you would like to dedicate this birthday gift to Alyssa. In recognition of World Prematurity Day, it may be someone you know who was a preemie or had a preemie. Or it may be any child or family who has been touched by the care received at their Children’s Miracle Hospital.
Let’s hear it for NURSES! Have a look:
Thank you for sticking with me throughout these posts. Your interest and attention mean the world to us and your comments have been uplifting. Finally, thank you for putting your money where the miracles are. Know that you are making a difference. On behalf of the Johnson and Schroeder families, and as Alyssa’s Mom, I say on behalf of our angel, I love you and I love that you donated.
It’s Alyssa Rae’s birthday week, and tonight I’m sharing the end of her earthly journey. With all my heart, I hope that my earlier posts, about our first child’s birth, the story about her short but impactful life, this story of saying goodbye, and tomorrow’s call to action, can each inspire compassion and giving. It’s all for this Saturday’s fundraising flash mob of remembrance, love, and hope. Please don’t turn away from this painful recounting of what we went through. We are all brothers and sisters on this planet, and if we want to keep to humane in humanity, we need these stories.
Our friend Tony captured some of what I’ve been going through this week, and more tears flowed from the sentiment in this art. As per Tony’s wishes, click on the picture to donate.
Tomorrow, I will write more about the Neonatal Intensive Care Unit (NICU) at SickKids, where the best of humanity gathers to distribute miracles. Staff here are the best of the best and so deserve the very best of what modern medicine and design can give them. These NICU doctors and nurses have all gone through at least 10 years of schooling and another who-knows-how-long in specialized training when they answered a call to be angels on earth for very sick babies. They are on their feet, improvising, constantly learning and teaching others, for long hours. They fall in love with babies and their families, and when they lose one, they grieve too. With nimble fingers and steady hands, nurses are caring for the very tiniest, most fragile infants all while listening and responding to parent questions, adjusting monitors, untangling lead lines and charting on computers. They take leave in order to recover from heartbreak, to attend funerals, to debrief with counsellors. So Saturday’s online fundraiser, where you’re asked to give 20 bucks for Alyssa’s birthday, is also a tribute to NICU staff and a promise to them that we have their backs, we see their good work and we respect their knowledge, expertise and the way they combine that with compassionate, loving touch. Also, did you know that Saturday just happens to also be World Prematurity Day? Let’s hit that donate button, send our $20 and forward it on for the whole world.
Friends, I feel so raw right now. I’m not fit to do what I want to do so I’m summoning my Mama Bear side, ready to attempt to take unspeakable grief and transform it into a better world.
Grandma Audrey and Grandpa Ernie Schroeder, December 4, 1998
So after we signed the Do Not Resuscitate (DNR) order, there was a shift in energy in her room. The nurses anticipated our need for privacy and any new preemie roommates were kept to a minimum. The previous sense of momentum and urgency had come to a halt and we felt we had lost our footing. Whereas previously we had rejected invitations to talk to the SickKids chaplain, Michael Marshall, now we sought him out. We liked him instantly. He had a ponytail, little round glasses and a quirky, endearing way of rubbing his chin before responding. We told him our whole story and he seemed to soak it all up, like he had nowhere else to be. He got us talking about the bike trip, our marriage, our relationship with religion (or lack thereof) and our shifting framework of spiritual beliefs. We talked about Alyssa’s catastrophic condition and helped us to make peace with how her story would end. Also, because Pastor Michael had lost an infant son there at SickKids Hospital years prior, we knew he knew our pain.
Grandma Clara and Grandpa Dave Johnson, December 4, 1998
Michael introduced us to the concept of having a special gathering in a circle of love around Alyssa. Together we came up with an order of service for a blessing that Michael would lead, incorporating poetry, ancient writings, and some elements of transformation. On December 4th, twelve of our closest family and friends joined us in Alyssa’s room for the Blessing. Alyssa was laying in her cushy nest, dressed in a long white embroidered gown and sweet little cap. Bruce and I held her hands and the circle formed right there in the middle of the NICU room. Michael handed out programs, spoke eloquently and involved everyone in the readings and in a ritual with water and earth. Bruce read the Shel Silverstein poem, Forgotten Language. As Michael finished the blessing, we heard “Appalachian Lullaby” and held each other’s hands:
Grace, mercy, peace that passes all understanding keep you always in the radical awareness of this gift of life, a knowledge of hope and a love that challenges us to seek justice, peace and freedom. And may God’s blessing create, restore and sanctify you. Amen.
~Michael Marshall
The love in that room was so beautiful and it was all inspired by Alyssa. She was the strongest link in our chain. It helped me transcend the physical agony I was going through. Even though it was a warm room, I was wearing a thick fleece jacket over my blouse. Moms out there, you’ll understand this best, my breasts felt like they were about to burst. I hadn’t pumped since the night before, because the reality was, Alyssa would no longer need to be fed. But bodies don’t always follow instructions immediately, and so my bra, even with breastfeeding pads stuffed in thickly, was soaked. I was so tender, I couldn’t hug anyone. As a first time Mom, I was learning that the intense mother-baby bond was not just a fondness — it felt like being physically tethered. How would I survive letting her go?
On December 6th, after more loving but sad visits with family, we gathered with our parents and siblings into a room with an interior room, where they could wait nearby while we went in to slowly say goodbye to our precious daughter.
After removing all but the breathing tube, Nurse Janet skillfully assisted us in bathing Alyssa in nice warm water, rubbing her with baby lotion. At last, the tape came off and we could see her adorable upper lip and have a long conversation with her. She was awake, calm and held eye contact with us. It rocked my world. With her eyes, she said she was ok. Throughout her short life, she had a sort of knowingness about her. It was the greatest gift of my life, to have our souls communicating “it’s all right” to each other. I am sobbing as I write this, but please don’t think it’s due to a painful, tragic moment. It’s the beauty. My God, life is amazing. And death…dare I say it? Can be beautiful. We aren’t conditioned to think that. That there is such beauty available to us, when we surrender, let go and love.
We were also accompanied by a doctor named Doctor. Previously, when we’d hear “Paging Dr. Doctor” over the loudspeaker, we’d crack up. She was the kindest soul and she was there to make sure that throughout the process, Alyssa was never in pain. Together, Bruce and I sat and held Alyssa, with lights from the sky and city blinking through the dark window. All tubes were now removed and for many minutes, she stayed with us. We held onto each breath, and even as they got farther apart and smaller, I held out hope that she would prove all the doctors wrong and start breathing on her own. Her heart was at the surface of her skin, so we could see and feel it slowing. I was wishing that we could all just be preserved at that moment because surely we couldn’t go on without her? I had a very clear and very irrational thought, that seemed to emerge from rational thinking, that I was going to die. Not just from heartache, but literally that the physical bond being what it was, her last breath simply must be mine as well.
At 8:08 p.m, on Sunday, December 6th, 1998, Alyssa flew to heaven. And I didn’t.
Bruce and I stayed with her for a long time. At last, we could get a good look at her. Hold her upright while looking out the window. Put our cheeks to hers and continue to make her promises. We promised we would never forget her. That we would say her name. That any other children we were blessed with would know about her. And, I whispered, please come back to us. Then, one by one, our parents came in to hold Alyssa and say goodbye. I was somewhat amazed and extremely touched by the sight of them rocking her body so lovingly. Their tears flowed and flowed, and I knew that they were sad both as grandparents losing their granddaughter and as parents witnessing their own children in anguish.
There were other matters, the menial matters of transporting her body, getting the death certificate and organizing a memorial service at the funeral home. Numbly accepting and recording hundreds of gifts of flowers, mementos and cards. Twenty years ago, other than the outpouring of love and sympathy, the most meaningful gifts we received were the gifts given to The Hospital for Sick Children Foundation, in tribute to Alyssa Rae Johnson. It was enough to buy another glider rocker and other comfort items for the NICU.
After Alyssa’s death, SickKids continued to reach out to us, with letters, booklets, and photos they had taken and had printed for us. The SickKids chaplain, Michael Marshall, led her funeral in Wasaga Beach, and a couple of our very favourite nurses came all the way up to attend. It was overwhelming and so very meaningful to have them there.
Note: If you or anyone you know is in a similar circumstance, I highly recommend the booklet titled “Loving and Letting Go: For parents who decide to turn away from aggressive medical intervention for their critically ill newborn” by Deborah L. Davis, Ph.D., ISBN: 1-56123-060-X
Tonight, once again, I am remembering. It’s Alyssa Rae’s birthday week, and I’m sharing her life – and as an extension, our lives, in hopes that it will reach you. I pray that 20 years after her arrival, Alyssa’s life story can inspire reflection and giving. It’s all for a fundraising flash mob of remembrance, love, and hope. Please don’t hesitate to spread the word, let’s build some momentum toward her November 17th birthday so together we can raise as much as possible, in increments of $20.
For four long days after Alyssa was born and transported to SickKids Hospital, I stayed checked in at Mt. Sinai Hospital for C-section recovery, but I was only there to sleep and let the nurses do their charting. Otherwise, Bruce helped me throw a bathrobe over my hospital gown and boldly broke me outta there by wheelchair. After sleeping on a lumpy couch in some kind soul’s office, or tucking inconspicuously into a closet for the night, he would dash back to Mt. Sinai, I’d hop on, and he’d catch me up on what the morning nurse had reported as he sped me across the tunnel and up to the 2nd floor, NICU at SickKids Hospital.
Alyssa was in a typical NICU room, which was divided into 6 stations. Six babies, usually in incubator-type isolettes, could be monitored and cared for by 6-10 highly trained NICU nurses in this room. Thankfully there were a couple of empty areas at the time of Alyssa’s arrival. Alyssa was at the far left, close to a large window, and we were happy she would have tons of natural light by day and a view of the moon and stars at night.
Spending the day with Alyssa was mesmerizing. The hours felt like minutes. We were getting to know her and she was a beautiful baby, with blonde hair and the kind of deep blue eyes you’d more likely see in some wizened old storyteller than in a fresh infant. Compared to the other babies who were mostly extreme preemies, she was huge at 6 lbs 2 ounces. We could have happily just perched there holding her fingers, talking and singing to her. There was a lot to do and learn though. Thankfully, the nurses recognized that we were hands-on parents, and they were happy to teach us what all the tubes and machines did, so we could alert them to anything that looked concerning. The “leads” that went to the monitors had a certain way to be rearranged for different procedures, like changing the dressing on her omphalocele and changing her diapers. The monitors became something we relied on to tell us whether she was uncomfortable or upset. When her oxygen saturation was dropping or her heart rate was spiking, it was hard for me to stay calm. The monitors were Alyssa’s only voice, as she had no other way to express the terrible pain of getting her heel pricked for the 12th time that day, or having her lungs suctioned for the 3rd time that hour.
We were also engaged in her care plan, and keeping track of various specialists, tests and surgeries. We were welcomed to stay at her side when physicians made their rounds. Interns were always at the periphery, taking notes, and occasionally asking questions. We had long since given up any idea of privacy or shyness. We were fierce advocates for anything and everything that could any way help Alyssa, and we figured if an intern from overseas asked something no one else had thought of, well that could be a lifesaving breakthrough. We were open to it all. The first major repair was booked for November 20th, when she was just 3 days old. Omphaloceles were nothing unusual to the surgeon who was scheduled for Alyssa’s “closing” surgery and it was upon meeting Dr. Ein when it started to sink in, what an extraordinary hospital we had lucked into, with SickKids. Bruce described him perfectly in a letter updating friends and family, after our first week with Alyssa:
Dr. Sigmund Ein, he with the ancient crackled white shoes and the hospital badge with his photo showing a cut-out of Hulk Hogan: this man operated on our baby within her first few days of life and managed to tuck in most of her liver and, more importantly, cover her heart with skin. He basically took Alyssa out for a test drive to see what she’d do. She “did” just fine. A confident man, that Dr. Ein. As they were wheeling Alyssa toward the surgery room, I said to a nurse: “Excuse me, I see that no one witnessed my signature on the surgical consent form.” The nurse smiled and called to Dr. Ein, ahead of us in the hall. “Dr. Ein, Daddy Johnson says that you didn’t witness his signature.” The good doctor stopped at the door, pulled his mask down and said to me, smiling: “God is my witness.” The kind of confidence you want to see in the man who, forty minutes later, would be holding your daughter’s tiny beating heart in his hand. Alyssa is recovering well now and they plan to start weaning her off of the respirator tomorrow. This may be a slow and painful process but we have every confidence she can do it!
As the days rolled on, a tiny spark of hope that Alyssa could survive started to kindle. We were told by Dr. Ein to be cautiously optimistic. Music to our ears. She was being fed through an NG tube and we were so relieved to see her first poops. Her digestive system was functioning! Dr. Ein humoured our questions about how she would play sports, and explained in detail, the process of gradually tucking all the organs back in and closing an omphalocele.
If this was to be a long-term stay, there was no way we could afford a downtown hotel, so volunteers in the atrium gave us the number for the nearby Ronald McDonald House. This was a residence about 5 or 6 long blocks from SickKids, where for a minimal ($15 at the time) charge, parents and siblings of young patients could feel at home away from home. What a stroke of luck that they had a room for us and we could come the next day. There was a phone for local calls in the room, and long distance in the hallway, and a nice shower, and a super comfy bed. We were given a cupboard and part of a fridge if we wanted to stock up. Occasionally, volunteers, pro athletes and celebrities would stock up the communal kitchen, with giant cheesy lasagnas and tins of fresh-baked cookies. We were so grateful! It was November, with all its brisk and blustery weather, and the walk worked wonders to clear our minds and energize us for the day ahead. We would stop and grab a coffee, then high tail it up to Alyssa’s room from morning til they booted us out at bedtime later at night. The night shift nurses knew that with any change at all with Alyssa, to call us. We weren’t sleeping well anyway and were always hungry for updates at the late-night shift change. When friends would visit and bring a snack or meal from the Atrium, we would reluctantly retreat to the parent break room. Ah, the old parent break room. I think it’s gone now. It was a rectangular room with one door, a couple of phones, and upright chairs. Imagine no cell phones, you’re facing each other in stark lighting and listening to each other’s heartbreaking stories as they fill in loved ones from afar. Sounds terrible, but it actually brought us together and soon enough, we were learning each other’s babies’ names, complications, and outlooks. There were very very sick preemies, babies in need of organ transplants, triplets with chromosomal challenges. I started to feel relatively lucky because Alyssa’s prognosis was looking better and better every day. And although a transient, ever-changing group, we started to feel that for brief moments we could support each other, cry with each other, and celebrate each other’s milestones and victories.
This was at the gentle, lofty height of the roller coaster of Alyssa’s 20 days. Bruce and I leaned on each other and kept a positive attitude, as if this were just another mountain, even if we had to push our bikes instead of easily ride them. I had my Mom with me a lot, too, which was a great comfort. She had a cassette player for us, and a couple of lullaby tapes and some folk music from Minnesota. We carried it with us to a vacant office so I could pump some breast milk in private. The doctor had said I could finally provide breast milk for Alyssa to be fed through her NG tube, so I should collect it in lab jars, write my name and date on it and store it in the fridge near the nursing station. I would need to buy my own pump which was a huge expense – $300! We didn’t have $300. So the world’s greatest social worker took up our cause and wrote to companies on our behalf, for a discount or donation. She did it! She got us an amazing pump, with all the bells and whistles. We would be able to keep it and we imagined how handy it was going to be when we brought Alyssa home, to be able to pump and leave a bottle for the babysitter. We were starting to dream!
It was so nice to welcome visitors. Aunt Cathy was always there, even when we couldn’t be, she would sit with Alyssa before her workday started at nearby Toronto General Hospital. She left us adorable notes as if written by Alyssa and would have all the nurses oohing and ahhing at her latest finds from Baby Gap and Gymboree. Blanket sets with matching hats, the cutest outfits. It was a bit of normalcy, for our sweet girl to be spoiled by her Aunt, and we appreciated those gestures so much. We appreciated all the gifts from friends and were allowed to decorate Alyssa’s area with family photos, homemade cards, a dream catcher, a teddy bear with a “womb” heartbeat, personalized Christmas ornaments, mini angels. There are photos of visits from our parents, siblings, nieces, nephews and best friends that we will always cherish. Our family doctors Myrna and Amar came to meet her and help us understand the next steps, and colleagues from RE/MAX of Wasaga Beach blew us away with a wonderful photo album, filled with best wishes and by taking up a collection so that we could stress a little less about missing work and covering all the living expenses. There were a couple of gifts of money that left us speechless. We’ll never forget when one couple came to see us and quietly slipped us a hundred dollar bill, and another acquaintance mailed us a cheque for $100 in the hopes that we’d use it for a massage or some healing indulgence. We were gobsmacked. Those donations of kindness and generosity were so impactful, we remember every single gesture. We learned something about giving then, by being at the receiving end. We learned that people who need the help the most, don’t even realize it at the time.
When Alyssa was 8 days old, and nurse Judy was on (one of our favourites, she loved Alyssa so dearly and we loved her back) we were given our first chance to hold our baby. For over two hours, we took turns holding and rocking her for the first of very few times. She was on the ventilator so we couldn’t hold her against our chests. How I wished I could hold her tight, with her cheek to mine. But this was heaven, and her oxygen sats showed that she was melting into the moment as well. The next day, although she was retaining fluid and really puffy-faced, the respiratory team turned down her ventilator a notch or two. The nursing staff poured their hearts into caring for her and involving us. The smallest gestures of kindness from these rockstar nurses would make us blubber, we were so emotionally charged. Seeing a nurse kiss Alyssa’s little foot after a needle poke, arriving to see the night nurse had cut her bandage into the shape of a heart, the trust they had in as parents, to do dressing changes and diaper changes without supervision. Seriously if you are a NICU nurse, heck if you know a NICU nurse or even just spot one anytime anywhere, give them a hug and all the respect you can express. Anyway, these nurses infused us with hope: maybe we’d see if those little lungs had any get-up and go on their own!
Sadly, these hopeful highlights were not to last. The next day, Alyssa underwent more testing. Ultrasound, ECHO, blood tests. There were discussions about blood type and a blood transfusion, about Alyssa perhaps receiving blood from Bruce, who was also O+ type. The ventilator could not be sustained at a lower level and her lungs needed more and more suctioning to stay clear. Given the discomfort of these procedures, tests and just being stressed, the doctors decided she should be given morphine to calm her and reduce her pain. She rarely opened her eyes now.
Then came the saddest day: November 29th. We say that December 6th was the saddest day, but when I really think about it, November 29th was just as life-shattering. While Bruce and I were with her, and she was being suctioned yet again, the day turned very very bad. It pains me to return to this moment and I struggle with how to fully describe it. Or even if I should fully describe it. I mean, what is the benefit to anyone, to know what happened next? Alyssa turned blue. The nurse, who of course was now and forevermore my least favourite, started bagging her and pushing alarms. Code blue. RT. Stat. The world stopped. Can you remember where you were, November 29, 1998? I think about that. RIGHT NOW is somebody’s November 29th. My heart is in my throat at the thought.
The team of respiratory therapists flew in with their cart full of meds and tanks and clipboards and somebody took charge. Alyssa was being breathed and still, her blood oxygen saturations were disastrous…this was full respiratory distress. She endured nearly 30 minutes of super-low blood oxygen while the RT team got her cleared, but now she was only breathing with the ventilator, which was turned up to provide 100% oxygen, so she wouldn’t have to struggle or try to breathe on her own that day.
That crash was followed by the start of the seizures. I don’t remember if they were always at night and I didn’t see them, or if I just blocked them out, but I don’t remember witnessing them. Still, they were severe and frequent enough to call for yet more testing. EEG. Head ultrasound. ECHO. Chest X-ray. At 2 weeks old, doctors decided she would need “the oscillator” which sounded like a torture device to me, and from what I understood, once a baby was on this more extreme ventilator, it would be much harder to wean off from it. Another CT scan… and when all results were in and confirmed with national and international pediatric expertise, it was time for what we dubbed “The Talk.”
As Bruce described later in an email update, the great fear of brain damage was realized by the CT scan and other tests, which revealed not just that there was an irreparable injury to her white and grey matter but also that her brain was small for her skull size and that her brain stem had severe problems as well. If it were just the omphalocele, she could make it, the surgeons told us. If her lungs had developed a bit more, she might have had a chance, the neonatologists told us. But her hypoplastic lungs, an omphalocele containing liver and intestines, her heart being outside her chest cavity, all that plus a damaged brain with a brain stem abnormality causing the horrific seizures…it all pointed to a life of severe debilitation.
We wanted a second opinion and Dr. Moore, Alyssa’s earlier neonatologist, concurred with Dr. Whyte. And so did Dr. Pearlman and every NICU nurse we spoke to. Still we were wavering. This was our daughter’s life we were discussing. And then our Dr. Ein came along Thursday evening and took us into the Parent Care room. The bad news room. The man who had just a few days before saved Alyssa’s life with his great surgical skill, was now recommending that we choose the hardest path of our lives so that Alyssa could have the easiest path: to let them disconnect her from the ventilator. Dr. Ein, he of the take-no-prisoners school of surgery…told us that as hard as it was, if she were “an Ein baby” he would let her go. No question. And then his eyes filled with tears and he left the room.
~Bruce
It is an impossible question, isn’t it? Would we be condemning her to a life of pain if we lacked the courage to disconnect her from the machine that breathed for her? What if? What if? I wonder if tonight, there are parents looking at a DNR form, having decided that the most loving action they can take is to take no more heroic actions to keep their child alive. I can only hope and pray that they too are surrounded by loved ones, are supported by a few hundred years of combined pediatric doctor and nurse experience and can open up to the painful reality that not every life must be sustained to be impactful. Even a 20-day life is a miracle, or miracle enough. Miracle enough to never be forgotten. As much a miracle as any of us can be, pebbles dropping in a pond, sending out ripples so enduring that even they can even make the world a better place. There were no quiet ponds that night, as freezing rain pelted the windows at SickKids Hospital. It was December 3rd, 1998, and we signed the DNR.
Today, I am remembering. It’s Alyssa Rae’s birthday week, and I’m bound to be crying anyway, so let me pour it out to you. Let me pour it all out and please, let my words inspire reflection and giving. It’s all for a fundraising flash mob of remembrance, love and hope. Donate a crisp 20 on a crisp fall day…today. Spread the word! If you are new to this thread of posts, for a better understanding, start with yesterday’s post.
Twenty years ago today, I was in a grip of fear and uncertainty that I was determined to pry loose. When you are pregnant, the word ‘possibility’ infuses your every breath and thought. After all, you are in creative mode, to the very depths of your being. How can that be anything but positive? To be presented with evidence that all is not well when for seven blissful months you were over the moon with dreams and excitement, it takes time to reconcile.
Maybe it takes 20 years.
Two of us wearing raincoats…I know, let’s do your dream trip, Inuvik to Ushuaia together! But not on motorcycles, on bicycles. It’ll be fun!
First, for those who haven’t met me and Bruce, a bit of context. In 1998, we were fresh off the heels of an odyssey on two wheels. We had met in the Arctic when I was on a 2-month canoe expedition and he was at the apex of a long motorcycle journey. Both journalists, we got to know each other via snail mail, then joined dreams to adventure from north to south, with Bruce’s chosen route (Inuvik, NT to Ushuaia, Argentina,) and my chosen mode of transportation, bicycles. Halfway through that trip, we got engaged.
There was no doubt in our minds that if we could weather the challenges of 24/7 togetherness and support each other through cholera, dysentery and a million daily decisions, we would be able to pedal past the rest of life’s more banal ups and downs with relative ease. Nothing stopped our progress for long and before we knew it, we were back home surrounded by family and friends, tying the knot in the town of Lutsen, Minnesota and celebrating on the shores of Lake Superior. While planning that wedding, I trained and ran a marathon, Bruce studied for his real estate exams and our families met. It was truly an awesome, healthy, joy-filled time of our lives.
After the bike trip and the wedding, we decided to start our new life together in Wasaga Beach, Ontario, mainly because we had no money and needed a place to live. Bruce’s parents had a separate basement apartment and had offered it to us, while they were between tenants. It was in that cute little apartment, at the end of March 1998, when a pregnancy test stick turned pink-for-positive. Turns out I was 5 weeks pregnant, which means we conceived Alyssa just after my 30th birthday.
We shared our news with our families on Easter Sunday. Such an exciting spring, with a baby on the way! We had a core list of friends that we shared the news of our pregnancy with by email, and I am thankful we have many of them printed out, as a reminder of how elated we were to be growing our family…and the outpouring of support and love during the ups and downs that would follow.
About 6 months later, we were brand new homeowners of a riverfront cottage in dire need of renovation. With the baby’s due date being November 28, there was a time crunch to make this little house a snug home for our new addition. Bruce’s brother, nephews and our best friends were incredible, helping us rip, tear down to the studs, insulate, re-drywall, jack up and level floors and replace beams. His parents were rocks of support for us and invited us to share countless meals. I was limited to scraping. Multiple layers of wallpaper, glued-down old cat-pee-soaked carpet underpad, old kitchen tiles, you name it, I scraped it, because I was getting to the point where energy was waning.
Because I was new to Canada and awaiting permanent residency status, I didn’t have health care. Throughout the spring and summer, I had been jumping through multiple hoops to get my immigration status to the point where I could receive my OHIP (Ontario Health Insurance) card. At the time, that little card would be my ticket to free prenatal care. I had passed the medical exam, filled out the paperwork, received a “fulfillment in principle” promise and the date when I would be “Landed” as a permanent resident.
This is my belly, peeking out of my bathrobe in our apartment in Wasaga Beach, in the early fall of 1998. Up until about two weeks before giving birth, being pregnant felt like a time of creativity, where I could be carefree and careful at the same time.
Meanwhile, a friend of a friend who was a new local female doctor generously took me on as a patient. Dr. Monte and her husband Dr. Singh would be with us all the way through to delivery and beyond. Meeting Myrna and Amar was probably one of the luckiest moments of my new life in Canada. To this day, I feel they are earthly angels. They are incredibly caring, knowledgeable, beautiful people. At each appointment, my blood pressure was excellent and the baby’s heart rate was strong and steady. Early on, I had so much energy I was biking across town to do yoga. Bruce was newly-licensed as a real estate sales rep and I focussed on assisting with marketing. I was biking up and down neighbourhoods where Bruce had his shiny new RE/MAX of Wasaga Beach For Sale signs up, passing out the “Just Listed News” pamphlets I had created. I was loving Wasaga Beach, with its forest trails, beach boardwalks and small-town friendliness.
Together with Dr. Monte, we decided that it would be ok to wait for our first ultrasound, rather than pay a huge fee. In those days, you assumed if you made it past 3 months, you were golden. I was to receive my OHIP member status on October 31st so we booked our first ultrasound at Collingwood General & Marine Hospital the following Monday, November 2nd.
Frankly, there is just no way to sugarcoat what our first ultrasound was like. The only way I can forgive the tech is that he had never seen anything like it, and wasn’t trained in bedside manner. Maybe he was new. Or tired. Or scared for us. But my God, we were first-time expectant parents! We thought we were going to find out if it was a boy or girl, make sure he or she was getting in position for delivery. The ultrasound took forever, but we figured that was normal. The tech kept adding some more ice-cold gel to the wand and going back and forth, at a Zamboni pace over my giant belly, clicking and typing, measuring and switching screens. Breaking an awkward silence, Bruce asked: “so…got all the fingers and toes?” The tech contorted his face into a blank expression and told us he couldn’t share ultrasound findings. He turned away, mumbled our doctor would be in touch, and left the room.
Driving home, we were paged to come in to speak with Dr. Monte. I said to Bruce, “Whatever it is, promise me, please promise me, you won’t try to be strong for me.” If we were going to be blasted with bad news, I desperately wanted someone to be in the puddle with me. He promised me not to be strong. Haha. When Dr. Monte closed the door behind her and welled up with tears, my ears filled with the cotton of shock and denial. I could see her lips move, could see her point to a paragraph in a gigantic medical encyclopedia, could make out a word or two. “Orillia.” “SickKids.” “Mt. Sinai.”
From that moment on, everything happened fast. Never again would I share a carefree moment singing or reading to my growing baby, wondering only who she would look like, gleefully feeling that inner tickle as our baby’s feet rolled across my tummy. What followed instead: consultations, diagnostics, tests, and more tests. Tearful talks with more doctors. Flow charts that said if this, then that. These were dark and confusing times.
At our second, more revealing ultrasound at Orillia Soldiers’ Memorial Hospital, it was confirmed that our baby indeed faced numerous complications. The fact that some organs were outside of the body, like a giant hernia contained in a sac, was the least of the concerns. New words for new parents. Not words like lullaby, diaper genie, baby shower (I had cancelled the one my friends had sweetly scheduled).
Omphalocele. Ectopia Cordis. Hypoplastic. It was all too much. Too cold, too clinical.
We had to know the gender of our baby before we carried on. And so we found out: a girl! That brought us happiness! We knew right away that her name was Alyssa. We knew too, that her middle name would be Rae, as it was also feisty Grandma Johnson’s middle name.
Knowing her name, we could carry forward, and asked friends in the medical field if they concurred with everything the best children’s hospital in Canada had told us. Still shell-shocked, we rallied some key individuals for advocacy and moral support. Sisters who were nurses, distant friends who were surgeons and doctors. We wanted everyone’s take, translation and explanation. Thanks to sister Cathy’s repetition of the translations, it could finally sink in that her heart was not protected by her ribs but instead was partially at the surface and would need to be surgically covered with skin, her chest cavity was small, they weren’t sure if she had a diaphragm and even if she did, her lungs may be too small to function.
We were told that a long-needle aspiration, called amniocentesis, would provide a more thorough prognosis. Then we’d know if she had other challenges that went as deep as chromosomes. Two days later, after Bruce’s 34th birthday, we took our first of many trips to Toronto, with stops at Mt. Sinai Hospital and SickKids Hospital. The amniocentesis was gruelling, so painful and scary, but our spirits were lifted to learn that the results were good. No chromosomal abnormalities at all!
An internal echocardiogram also showed that Alyssa’s heart was anatomically perfect and strong. It was just in the wrong place. We could tell by the way the doctors shared the news that this was very promising indeed. I would deliver our Alyssa Rae by C-Section the following week at 38 weeks gestation, at Toronto’s Mt. Sinai Hospital, which connects to SickKids via a tunnel.
After we had processed all the theories and information as best we could, we realized that in spite of an uncertain future, right now, Alyssa was safe. I was safe. I didn’t feel any different, physically. Her heart rate was still perfect. The contrast of real-time (me and Bruce and our happy baby) vs storytime (the doctors) made me feel like the whole thing was a nightmare. Surely soon I would wake up.
Wow, I had no idea this would be so long. If you’ve gotten this far with me, you must know us, or maybe you’re a parent or just a very patient reader. Thank you for your interest. You know where this is going, you know Alyssa Rae doesn’t make it. I hope you’re not pregnant and starting to freak out. Omphalocele is very very rare, it’s random and no matter what, you’re going to be ok. I just had to interject that!
You might assume, knowing that we are all about raising funds to support children’s hospitals, that the system must have been so perfect, and we are just so grateful for everything that we want to give back. I’m here to tell you that 20 years ago, the system was not all roses and sunshine. But even the toughest times have a purpose, in hindsight. And in contrast to the toughest moments, there were so many moments of hilarity, humour and levity. The SickKids doctors and nurses that we were introduced to before Alyssa even emerged were incredible. Seriously so compassionate and thorough, anticipating our questions and reassuring us. SickKids is a teaching hospital, so there is never a lack of interns asking questions. There was a lot of conversation, which helped us figure out what our questions were. SickKids staff even found a family that we could talk to, whose child survived omphalocele and was doing well.
November 17th, 1998, 9:03 am: our family is born.
On Tuesday morning of November 17th, 1998, we gathered with our closest family members and Bruce and I prepped for the surgical theatre. It was finally time for my spinal epidural. These photos really tell a story. Here I am, reassuring Bruce with a glance that I was really fine, and not to worry, during my C-section. We were about to meet Alyssa! I didn’t care what the doctors thought, this was our daughter. She was going to be fine. It’s like I wanted to beam out hope and trumpet joy. A new baby was coming and everyone should really just chill out.
According to Bruce, I was amazing. But all I had to do was lay there and talk to the most beautiful anesthesiologist on the planet. She held eye contact with me and was so in tune with my breathing, with my fears, with my every heartbeat and dip of blood pressure. I felt held. I wish I knew her name, I would write her a letter of thanks. But back to Bruce. HE was the amazing one. He had to stand there, all gowned up, and witness the unimaginable. He stroked my forehead and reassured me as the all-female surgical team expertly made a “bikini line” incision, then pulled our baby out, first head, then body. He saw them quickly checking my intestines for nicks, inch by inch, as you’d do for a flat bicycle inner tube. He didn’t pass out. He didn’t puddle. Anyway, this was no time or place to be strong or not strong.
This proud and hopeful Daddy is everything to us.
We were tender and happy, the surgical team was casual and confident, everyone just was who they were. I don’t remember the next part, it was chaotic, but the omphalocele was wrapped in medical cellophane and Bruce recalls Alyssa’s bleating cry being stifled by a breathing tube. He describes that moment, and really the whole story is so beautifully told by Bruce, I cry when I read those newsletters, even today.
SHE DID IT! Alyssa Rae Johnson came into the world at 9:03 a.m. Tuesday November 17, 1998. And, like her parents, she savors a challenge and so entered our fine world with not a whimper but a BANG. During Mary’s C-section, while I watched, stunned, as the team of doctors pulled her head out, followed by her shoulders, torso and legs, Alyssa chose to let the world know that she intended to fight the grim prognosis of the various doctors by screaming at the top of her little lungs—those same lungs that we were worried may not work. She cried out as the transport team whisked her off into the next room and she kept crying until they put the breathing tube down her throat. She hasn’t made a sound since then, as the tube robs her vocal cords of their precious right to holler. But we have a girl. A brave, courageous, fight-filled wonderful GIRL, with all of her parts intact (though some of them happened to be outside of her in what turned out to be a smaller-than-anticipated omphalocele!). She has astounded the doctors at Sick Kids Hospital and hopefully will continue to astound those around her for at least the next 123 years! A girl… a beautiful little girl. Mary and I are the proud parents of a baby girl with downy blonde hair, blue eyes, a cute button nose and an attitude!
~Bruce, first time Dad
A captured moment that will always stir up mixed emotions. First time Mom meeting daughter, while the angelic anesthesiologist continues to watch over us.
Fleeting, gut-wrenching. I wanted to hold her but knew I couldn’t. All I could see was her beauty, all I wanted to do was communicate a warm welcome to her. To be a calming presence. To the team of doctors, this was a very very sick baby in need of saving and an adult patient who needed to be closed up and brought to recovery. Bruce was torn between these two scenarios. What was his role? His heart was divided, and I can only imagine his turmoil once Alyssa was transported by tunnel from Mt. Sinai to the Neonatal Intensive Care Unit (NICU) at SickKids and I was fully checked in with all the other new Moms in the C-section recovery floor (I’m sure it has another name, but let’s just call it Hell). For both of us, there were visiting hours, and this was before cell phones and texting. Bruce would run back to me to report how Alyssa was doing, but I was on heavy pain meds and couldn’t sit up or get up.
I did not have a private room. I was put in a room with a new Mom of a healthy baby, with a mini-family party going on. There was squealing laughter, balloons, and praise for how well she did. She just “couldn’t wait to get out of there”…well I just couldn’t wait for her to get out of there either. It wasn’t their fault. How would they have known who was behind the curtain, cold tears rolling silently down hot cheeks? My empty arms made my heart ache and I was deliriously desperate for an update. That night, a nurse turned on some kind of required video for new moms in the C-section ward: a how-to for breastfeeding. How to hold your baby so she latches on well, how to care for cracked nipples from all that nursing. Reassurance that you can pump and store your milk, so that your husband can share in the joy of feeding your child, too. Oh. My. God. Why did they think I needed a breastfeeding tutorial? All I needed was Bruce, Alyssa and more pain meds. It was the middle of the night and I was hitting the call button. Nobody came. I cried out: “Somebody?” “Hello?” until finally I stopped feeling sorry for myself and got mad. Rage propelled me out of bed, to the nurse’s station where they were sitting around drinking coffee. They looked at me and said, “Oh do you need something?”
That did it. This Mama Bear felt her claws coming out. I was getting the hell out of dodge. I needed to be at SickKids with my husband and baby and the Universe was certainly conspiring to motivate my lightning speed recovery.
In honour of Alyssa Rae’s birthday week, I am pre-launching a special event that will be taking place this SATURDAY, NOVEMBER 17th: a one-day only, online fundraising flash mob of hope, remembrance and love. Stay tuned, as I will be posting daily up to Saturday.
I will tell my story, which is the story of a first-time mother, new to Canada, who discovers her baby may not survive. It’s a story of pregnancy and birth and a sweet soul’s 20 days on earth. To help you understand what a miracle it truly was to be gifted those days with Alyssa at the hospital that would be her only home, I’ll try my best to explain her condition and how we were asked to surrender to the mystery of life, science and medical decisions.
Looking back, it occurs to me that Bruce and I remained intact and more resilient than ever, thanks to the support we received from family, friends, community and SickKids Hospital personnel including doctors, nurses, social workers, counselors and foundation staff. We owe them all a debt of gratitude.
Finally, I’d like to highlight the fact that while the staff at Children’s Miracle Network (CMN) hospitals are second to none, the expert nurses and doctors at SickKids Hospital are working in an outdated facility with faulty infrastructure that makes life harder for babies, kids and parents. There is an audacious plan in place to help. I’ll explain why we are ALL IN for SickKids Hospital and why anyone who experiences the specialized care offered at a CMN hospital, either through their personal story or the story of a loved one, is often moved to give back.
I have mixed feelings about sharing all this on social media. I don’t want to give the wrong impression, that I seek attention or pity, but I am determined to keep it real. Of course it’s sad, when any new parents are given booklets titled “The Loss of Dreams” and find themselves reading “A Broken Heart Still Beats” instead of “What to Expect Your Baby’s First Year.” It was life-altering to the point where I felt my DNA had been reorganized and my priorities would never be the same. I want my story to be a genuine truth-telling about children’s health care, which could really be called family health care, because when a baby or child is sick or injured, in many ways it’s the parents who suffer most. At CMN hospitals, the need to support the whole family is not just understood, it is an integral part of what they do. I hope my story honours Alyssa, touches you and inspires you to respond.
What we’re humbly asking is for you, dear friends, to open up to the idea of many people giving a small amount, to great effect. For just one day, next Saturday, you’ll be asked to click on the Donate button and give $20. The hashtag in play this week is #20for20 in tribute to Alyssa Rae’s 20th Birthday, in honour of the miracle that she lived for 20 days, and in recognition that a $20 donation is not only affordable, it is HUGELY IMPACTFUL when we all do it together.
The other hashtag I’m using is #Love4Alyssa, because we love saying her name, especially on her birthday. I invite you to share this post on your social media profiles and add your own #Love4______, filling in the blank with the name of a baby, child or friend you would love to honour as you spread the word about Saturday’s fundraising flash mob. If your not a facebook person, kindly forward this event announcement to friends by email.
If Bruce and our daughter Holly can spend six months riding to the Ends of the Earth for Children’s Miracle Network hospitals, if our youngest daughter Jossy can miss her Dad and sister intensely but bravely keep her chin up, knowing it’s for such a good cause, and if I can go out on a limb by pouring my heart out on the page this week, then you can act too, by donating on Saturday. Let’s do this!
Stay tuned for tomorrow’s post: Alyssa Rae Johnson, Pregnancy and Birth
Many thanks to RE/MAX Integra Ontario-Atlantic’s video wiz David McFarlane for putting together this awesome recap of the first two months of The Ends of the Earth Ride 2018. After checking off the first 3 of 15 countries, Miracle Riders Bruce and Holly are looking back with awe and gratitude at the incredible generosity of people met on the road so far, and looking forward to the beautiful sites and exciting adventures that lay ahead.
Miracle the Motorcycle is fuelled by your messages of encouragement and we are all so grateful for your donations to the cause of children’s health…of which 100% goes to the Children’s Miracle Network Hospital of your choice (Donate Here!).
Thank you for your interest and please share this video!
The love in that room was so beautiful and it was all inspired by Alyssa. She was the strongest link in our chain. It helped me transcend the physical agony I was going through. Even though it was a warm room, I was wearing a thick fleece jacket over my blouse. Moms out there, you’ll understand this best, my breasts felt like they were about to burst. I hadn’t pumped since the night before, because the reality was, Alyssa would no longer need to be fed. But bodies don’t always follow instructions immediately, and so my bra, even with breastfeeding pads stuffed in thickly, was soaked. I was so tender, I couldn’t hug anyone. As a first time Mom, I was learning that the intense mother-baby bond was not just a fondness — it felt like being physically tethered. How would I survive letting her go? 
After removing all but the breathing tube, Nurse Janet skillfully assisted us in bathing Alyssa in nice warm water, rubbing her with baby lotion. At last, the tape came off and we could see her adorable upper lip and have a long conversation with her. She was awake, calm and held eye contact with us. It rocked my world. With her eyes, she said she was ok. Throughout her short life, she had a sort of knowingness about her. It was the greatest gift of my life, to have our souls communicating “it’s all right” to each other. I am sobbing as I write this, but please don’t think it’s due to a painful, tragic moment. It’s the beauty. My God, life is amazing. And death…dare I say it? Can be beautiful. We aren’t conditioned to think that. That there is such beauty available to us, when we surrender, let go and love. 
Tonight, once again, I am remembering. It’s Alyssa Rae’s birthday week, and I’m sharing her life – and as an extension, our lives, in hopes that it will reach you. I pray that 20 years after her arrival, Alyssa’s life story can inspire reflection and giving. It’s all for a 
Alyssa was in a typical NICU room, which was divided into 6 stations. Six babies, usually in incubator-type isolettes, could be monitored and cared for by 6-10 highly trained NICU nurses in this room. Thankfully there were a couple of empty areas at the time of Alyssa’s arrival. Alyssa was at the far left, close to a large window, and we were happy she would have tons of natural light by day and a view of the moon and stars at night.
a certain way to be rearranged for different procedures, like changing the dressing on her omphalocele and changing her diapers. The monitors became something we relied on to tell us whether she was uncomfortable or upset. When her oxygen saturation was dropping or her heart rate was spiking, it was hard for me to stay calm. The monitors were Alyssa’s only voice, as she had no other way to express the terrible pain of getting her heel pricked for the 12th time that day, or having her lungs suctioned for the 3rd time that hour.
When Alyssa was 8 days old, and nurse Judy was on (one of our favourites, she loved Alyssa so dearly and we loved her back) we were given our first chance to hold our baby. For over two hours, we took turns holding and rocking her for the first of very few times. She was on the ventilator so we couldn’t hold her against our chests. How I wished I could hold her tight, with her cheek to mine. But this was heaven, and her oxygen sats showed that she was melting into the moment as well. The next day, although she was retaining fluid and really puffy-faced, the respiratory team turned down her ventilator a notch or two. The nursing staff poured their hearts into caring for her and involving us. The smallest gestures of kindness from these rockstar nurses would make us blubber, we were so emotionally charged. Seeing a nurse kiss Alyssa’s little foot after a needle poke, arriving to see the night nurse had cut her bandage into the shape of a heart, the trust they had in as parents, to do dressing changes and diaper changes without supervision. Seriously if you are a NICU nurse, heck if you know a NICU nurse or even just spot one anytime anywhere, give them a hug and all the respect you can express. Anyway, these nurses infused us with hope: maybe we’d see if those little lungs had any get-up and go on their own!
