Our daughter spent her first 70 days in the hospital
Let us start our story in the present.
Looking at her, you wouldn’t think our daughter spent the first two and half months of her life confined to a children’s hospital — the first week of which across two NICUs.
Today, our little girl is happy, healthy, and — most importantly — at home with us. She looks and acts like a normal, healthy baby, learning how to use her hands to touch and feel anything she can get them on (pulling mom’s hair is her favorite). And she spends a good chunk of naptime trying to roll from her back to stomach (followed by an obligatory teary-eyed meltdown).
Our lives are becoming more like those of most new moms and dads, battling the everyday challenges of having a newborn at home. Sleep comes at a premium. Diapers sit at the ready in every corner of our condo. Tiny turquoise Tupperware filled with pureed fruits and veggies have taken over the fridge. Mostly, though, my wife and I feel an overwhelming sense of happiness and relief that our little girl is home.
Things weren’t always this straightforward.
Our family is one of the (almost) 60,000 Canadian families who have a newborn admitted to a NICU every year. We spent 70 days at the Hospital for Sick Children in Toronto, at the height of the COVID-19 Pandemic. And as scary as our experience was, it was also oddly rewarding in ways we could never have imagined.
“We need to take your baby to the NICU”
Those aren’t the first words you want to hear after having just gone through the most incredible moment of our lives.
Penelope was born 10 days early. Not a huge deal or anything to be concerned with — she was fully baked. We just figured our little girl was excited to meet us. My wife’s labor didn’t throw up any red flags either. Three hours after arriving at the hospital, we met Penelope James — or Penny for short.
For the first few minutes, everything seemed OK. Our midwife placed Penny on my wife’s chest; I cut the umbilical cord — a completely normal experience. Then, we noticed her crying had turned into gasping — she was sucking for air that wasn’t entering her lungs fast enough.
Seconds later, Penny was in a bassinette, a midwife pumping oxygen through the tiniest mask I’d ever seen. Within another minute, two pediatricians entered the room to take over and assess what was going on. They suspected Penny hadn’t evacuated all of the fluid from her lungs because labour had been so quick, causing a reasonably common side-effect called ‘wet lung.’ Her blood oxygen levels were too low for her to breathe on her own.
She needed to go to the NICU right away, they said. It was precautionary — a little boost while her oxygen levels stabilized. It was a fairly surreal feeling having just gone through this amazing experience of seeing your firstborn come into the world and the joy that came with it, to an overwhelming sense of fear knowing something might be wrong. As a parent, the uncertainty creates an overwhelming urge to know what is happening. The reality is that the doctors likely don’t know what’s happening yet. That’s a hard pill to swallow.
Penny, all 6 pounds 10 ounces of her, spent her first night in the NICU, away from us, a CPAP machine strapped to her head. I can still hear the whispering hiss of the oxygen tank that kept her blood oxygen levels stable while the doctors planned what was to come next. We struggled a lot with Penny not spending her first night with us. We knew why it had to happen, but that didn’t make it any easier.
That feeling compounded when we had to go home and leave Penny at the hospital. There were some tears that day. It was, however, a feeling we would get to know very well over the next couple of months — and a feeling that doesn’t get any easier to process whether you have to leave your child for one night or 100.
On our fourth night at home, we were startled awake at 4 a.m. by a call from the NICU. The charge nurse told us that Penny had been transported to the Hospital for Sick Children in Toronto (Sick Kids) because her blood oxygen levels had dive-bombed. They wanted to get her in the care of the specialists there as soon as possible.
That will always be the scariest phone call I’ve ever had to take.
At this point, we didn’t have a diagnosis. We didn’t know what was wrong. But, I do remember feeling that something was wrong beyond ‘wet lung’ — and Sick Kids would be the place where we would get the answers we needed.
A Christmas like no other
We knew Christmas 2020 was going to be different. Between my wife being nine months pregnant and COVID-19 limiting family gatherings, we hadn’t made any plans. We figured it would be a quiet day at home, some nice food, maybe a walk, and some movies to end the night. We did not expect to spend Christmas in a NICU — separately — with our daughter. Because of COVID restrictions, my wife and I got an hour’s overlap with Penny before one of us had to go home. It was hard, but the policy is one I truly understand and support, given the situation in the world right now.
Then, we got an incredible Christmas gift from the doctors at Sick Kids: a diagnosis.
Penny was diagnosed with Pierre Robin Sequence, a rare congenital birth defect in 1 in every 14,500 babies. It is characterized by:
- an underdeveloped jaw,
- backward displacement of the tongue, and
- an upper airway obstruction.
Penny also has a cleft palate, which is also a commonly present symptom of her condition. Her condition is referred to as a sequence because of a series of events during fetal development — it is not genetic. The exact cause remains unknown, but research suggests the sequence of anomalies begins with an underdeveloped jaw, which causes the displacement of the tongue and then the formation of a U-shaped cleft palate.
Because of the underdeveloped jaw and subsequent placement of the tongue further back in the mouth, Penny’s airway was obstructed, causing the issue with her blood oxygen levels. Then there was feeding. Not only would oral feeding prove challenging because of the airway obstruction, but her cleft palette eliminated any chance she would breastfeed.
The diagnosis provided a strange sense of relief that eased some of the fear we’d felt for the first few days of her life. It was a guide forward, a chance to lay out her recovery and understand what came next, not only in the short term but for the years ahead.
In retrospect, the recovery can be pretty straightforward. Some Pierre Robin babies are subject to operations such as jaw distractions (where the jawbone is broken, small pins are inserted, and then twisted to extend the lower jaw to a placement in which the tongue has come forward and eliminated the airway obstruction). Some have a tongue-to-lip adhesion procedure in which the tongue is secured to the lower lip to reduce the risk of obstruction. Another option is a tracheotomy if the airway obstruction is severe enough.
Upon arrival, nurses fitted Penny with a breathing tube in one nostril and a feeding tube in the other. It was hard to know she would have these tubes sticking out of her for the foreseeable future, but it was also a lot easier to see her without that CPAP machine covering her beautiful little face. Within two days, we moved to the Plastics and Burns Unit at Sick Kids — Penny’s home for the next 65 days. For the first three weeks or so, the stream of friendly doctors, specialists, and nurses seemed never to end.
Children’s hospitals are magical places. For as much fear and uncertainty that lives within their walls, an overwhelming feeling of hope rises above it.
We would go on to meet (and learn from) the nurses and doctors that spend the majority of their working lives in that unit, caring for kids suffering from craniofacial complications and burns.
They became our friends, family, and therapists while we lived at Sick Kids. They were the only people we saw for two and a half months. I can not say enough good about these people — and any healthcare professional who willingly devotes their life to caring for people they’ve never met (let alone at the height of a global pandemic). They are a different breed and showcase the standard for human kindness and compassion.
Within days of being in the plastics unit, we knew we wanted to give back to a place that had already given us so much. Five days after emailing the fundraising manager at the Sick Kids Foundation, a lovely woman named Martine, we had a landing page, a fundraising goal, and some messaging. I put my minimal design skills to use to create a logo. On day six, the Lucky Penny Project was born.
We hoped to raise $2,500, but within four hours of launch, we’d surpassed our goal. We were blown away by the support from family and friends, to colleagues, strangers, and even our employers.
We raised $18,000 in three weeks, all of which is being passed along to parents and extended families for meals and other items to make their stay at Sick Kids feel a little more like home.
We’re incredibly proud of the Lucky Penny Project — and are even exploring how to make it a full-blown not-for-profit. But we couldn’t have done without the support of so many people who made the fundraiser a reality.
I like to believe that most people are inherently good. Most people have the compassion necessary to help someone in need — the success of the Lucky Penny Project cemented that feeling in my mind forever. We will do everything we can to pay it forward.
My wife and I were fortunate enough to step away from work to care for Penny. Thanks to the Canadian Caregiver Benefit Program — and the generosity of my employer — I took a three-month leave of absence so I could be as present as possible. Not only did my colleagues and bosses support me, but they also encouraged me to step away. It is a gift I’ll forever keep close to my heart. I’m glad to see more and more companies offering temporary paid leaves of absence to employees going through hardship without impacting anyone’s finances. It’s an opportunity everyone going through any hardship should be afforded. I hope it’s a trend that continues upward.
We split our time at the hospital. Because of COVID, and only one parent was allowed in the hospital at once, we would see each other for about ten minutes every day for the better part of two months. One went to the hospital, the other slept — and vice-versa.
It was challenging, but I’m proud of my wife and me.
I’m proud of how we handled an experience I’d wish upon no one, how our relationship became deeper despite the odd frustrating moment or disagreement. Mostly, I’m proud of how we rallied to be as strong and supportive as we could be for our daughter.
She helped us find that strength too. She is our tiny warrior and has overcome everything that’s come her way.
Part of me is also thankful that she is too young to remember what happened to her. We might tell her all about it one day, but when we do, we will focus on the stories of her strength and that of the other kids at Sick Kids — and of the fantastic care providers that got her home to us.
Keep your chin up, kid
By mid-February, things started happening fast.
A significant indicator of Penny’s progress was her weight. The bigger she grew, the bigger her airway got and the smaller the obstruction became. She was feeding like crazy — every three hours.
There was a sense of monotony to the process — we’d finish one feed only to get started on the next — but the hypothesis was working.
We began testing her breathing without the tube. Soon those hours-long tests became days-long, then weeks long. On day 55, the tube came out for good.
At this point, we’d learned a lot. We knew the ins and outs of her condition. We’d gone through eight breathing and feeding tube changes (not fun, at all), more blood tests than we could count, and a handful of x-rays, heart, and sleep tests. We had met half a dozen respiratory therapists, a dozen or so nurses, four pediatricians, three occupational therapists, two plastic surgeons, and even a geneticist.
My wife and I learned how to change her feeding tube, how to administer her medications through a syringe, and a handful of exercises to make sure her cognitive development wasn’t delayed.
And it’s all going according to plan.
Penny is now a thriving five-month-old. And we were able to avoid any surgical interventions while we were at Sick Kids.
We’ve been home for eight weeks now. In the last week, we removed her feeding tube, which is a huge milestone. She’s eating solids and is going through sleep regression, just like any other five-month-old does. Her first teeth are even starting to show.
She will get her cleft pallette surgery when she’s about a year old, a minor and common operation that will be another milestone to check off the list. We will likely have to work with a speech therapist when the time comes, and she will almost definitely need orthodontic work eventually (her small lower jaw will cause her teeth to crowd). But, these are all manageable bumps in the road that’s a lot smoother than it was just months ago.
Today, more than anything, we feel grateful. We’re grateful our girl is home. We’re thankful to the people who cared for her, to our family, friends, and colleagues who sent Uber or Skip The Dishes gift cards, dropped off groceries or flowers, or sent a text every few days to check-in. Nothing is lost on us.
I’m coming away from this experience a more patient, compassionate, and empathetic person — characteristics I hope to lean on more in my personal and work lives. I am also grateful that we live in a country that operates a universal system accessible to anyone. Healthcare is a right. It is not a privilege. I’ll leave that at that.
Everyone has their own story, their own challenge. We’re fortunate that ours has a happy ending. I don’t share Penny’s story for sympathy; it is a story of hope, compassion, and kindness. One that showcases how goodwill and empathy can make even the slightest difference for the better in someone’s life. We’re all in this thing called life together — let’s take care of ourselves and each other.