My name is Sarah, I am 27 years old and became pregnant with our first baby December 2018. We were beyond thrilled. The first and most of the second trimester went relatively smooth until I experienced some bleeding two days before our 18 week ultrasound. Although baby was doing fine, I was diagnosed with placenta praevia. The bleeding was nothing major until about a week later when I had to be admitted to antepartum. Over the first few days, I was losing so much blood that my health was at risk. That’s when we first met with a neonatologist to discuss what things would look like if things didn’t improve. The bleeding did subside and we kept creeping closer to viability, everyday felt like a huge milestone. I was re-admitted a few times in the coming weeks when bleeding returned and my final admission resulted from leaking fluid and finding out my membranes has ruptured. I was able to keep my little guy inside for a few more days until contractions started the morning of 26 weeks and 1 day. By 7:00, doctors had decided that waiting any longer would put our baby at further risk and I had an emergency c-section that night. Our beautiful boy was born weighing just over 2lbs which everyone said was a good size for his gestation. I finally got to see him the next morning. Although he was tiny, smaller than I imagined, he was absolutely perfect. He did relatively well over those first few days, but we were warned from the beginning that preemies often thrive in that first 72 hours. From there, the rollercoaster began. Some good days, mostly bad days. Our son had extremely sick little lungs, worse than the majority of babies born at that age. He was constantly collapsing and then being over ventilated and hyperinflated. The poor little bean couldn’t catch a break. They tried new machine after new machine but he’d always either collapse due to low pressure or hyperinflate due to high pressure. He’d have a couple good days and they’d think it was safe to wean him down only to have him collapse within the hour. This push and pull went on for 45 days. The doctors tried many “out of the box” approaches with steroids and antibiotics, but everything seemed to serve as a quick bandaid to give us a couple days of hope, only to disappear as quickly as it came. Our boy’s bedside was constantly cluttered with the best and brightest doctors, nurses and respiratory therapists who often remarked that he was the sickest, but strongest baby they’d ever worked with. He essentially had his own on call team with him 24/7. In late July, it became clear that we were running out of band aid solutions. He had received far beyond the maximum amount of steroids with little to no response. He had been back and forth between machines so often that they no longer moved them back to storage and now he had become so swollen that they worried his kidneys were no longer functioning. He was gaining upwards of 100 grams everyday, but all in fluid retention. Despite being so incredibly swollen, he’d fight and fight to open his eyes every time we’d peer in his clear little house. Over the next few days, it felt like my stomach was constantly in a knot. Despite his worsened condition, his doctor pushed every day for him to come out for a snuggle and as much as I enjoyed every second of holding him, I couldn’t help but feel like that was the doctor trying to give me just a little more time with him. I. July 27th, I walked into his little room and the lid of his isolette was up and I made eye contact with his favourite nurse and I knew. I knew that his little body wasn’t going to be able to fight any longer. The machines that supported his breathing were cranked up to the maximum and he still wasn’t able to saturate oxygen within an acceptable range. There was nothing more that could be done to help our little boy. By this time, he had IV lines in his scalp and arms and weighed almost four pounds and he could hardly move because of the swelling. As much as the selfish part of me wanted to ask what else we could try, I couldn’t fathom watching him get poked or prodded at any longer.
That day, we got to snuggle as long as we wanted before his breathing tube was taken out. We crammed our entire family into a tiny room and just cried and showered his little face with love and kisses. Even once his breathing tube was removed, he stayed with us for another hour. No tubes, no wires, no beeping monitors, just our beautiful little baby boy.
Four days later, he was buried next to his great grandpa so that we knew he’d never be alone and someone would be there to hold our precious boy.
We’re taking things day by day, sometimes minute to minute. Some days are easier than others, but of course we miss our little boy. We have been raising money and collecting receiving blankets and books in hopes of giving back to the amazing place that both he and us called home for 45 long days.
We received a call from the NICU that he was at the other day and they have purchased a new piece of equipment that minimizes the space taken up at the bedside for babies who are on several machines like ours was and they will be naming it on his behalf. They have insisted that he deserves to have a legacy in the place where he fought his hardest battle and stole the hearts of so many. We certainly knew he left his mark on so many amazing people who worked with him, but now we understand the true impact.