Welcome Rowan!

Initially posted June 8, 2021

On Friday, June 4 at 1:26pm, we were absolutely elated to welcome Rowan Cameron Black into the world and into our family. Arriving a little earlier than we had scheduled for (but still full term), Rowan weighed in at 6lbs 14oz and measured 51cm. Ten fingers, ten toes, and a full head of gorgeous hair. Amber handled labour and delivery like the absolute superwoman she is. For a good while, things were blissfully uncomplicated.

The Uncomplicated Time

Due to a little puffiness around his skull, the medical team at Guelph General Hospital recommended we stay 24-hours in the hospital room, and we were more than happy to oblige. The rest of the day Friday and early morning Saturday absolutely flew by, as Amber and Rowan started figuring out breastfeeding, both parents got lots of important skin-to-skin time with Rowan, and I figured out changing diapers. He’s just the most beautiful baby, it was an absolute dream, and we couldn’t have been more happy for those first ~18 hours together.

Subsequent measurements of the head at GGH would show that the initial puffiness had subsided and was no cause for concern, but as it turns out, it’s a really good thing we stayed in the hospital rather than heading home.

The Complicated Time

There were a few things during the Uncomplicated Time that we all noticed about Rowan and that the team at GGH looked into. One was some regular grunting, which is not uncommon in newborns especially if they’re still expelling some liquid in their lungs from in utero. Another was some shaking of his arms every once in while, so the team did some blood tests thinking it was low blood sugar. Initial blood sugar results did come back slightly low, so we worked to get those higher, but eventually they were in normal levels and we were still noticing the shaking. Around 8am on Saturday morning, when an x-ray of his lungs also came back clear, the team decided to move Rowan over to the nursery for a bit more thorough monitoring and a 48-hour antibiotic treatment.

A short while later, the pediatrician at Guelph came back to our room to share that Rowan had been having regular seizures, the reason for the grunting and shaking. Everything moved very quickly from there: a team from McMaster drove to Guelph, stabilized Rowan enough for transport, and drove him in an ambulance to the McMaster NICU. Amber and I followed a short while later in our car. When we arrived, a team had already started looking him over and theorizing underlying causes. They didn’t sugarcoat anything, and let us know they were very concerned. Seizures themselves don’t typically do damage to the brain unless they last a long time (~30 mins), as much as they’re a sign that something bad is happening with the brain. The medical team suggested to us that the seizures were only occurring for 2-4 minutes at a time. Unfortunately, the were also only 2-4 minutes apart, and pretty severe.

There are a couple of things the team thinks might be causing the seizures, and are working to pare them down in the coming weeks: metabolic disorders, stroke, bacterial infection, and genetic disorders. As options get ruled out, they can start to cut down on the amount and number of treatments and get to the bottom of things or explore different ideas.

What’s Next

Rowan has the best possible medical team working every minute to give him what he needs. All of them—nurses, doctors, specialists, technicians, neurologists—have been absolutely incredible, and have answered every question we’ve given them as honestly and straightforwardly as we could ever hope for. Currently Amber and I are staying at the Ronald McDonald House in Hamilton, a short walk from Rowan in the NICU. They have also been fantastic, have taken care of most of our meals, and have tons of everyday items and services we need right on site. We’re working with a social worker through the hospital to keep us up to date and on track with a lot of peripheral stuff not directly related to Rowan’s care.

There are lots of unknowns, and we’re ready for whatever happens: life-changing, life-long and/or life-limiting. But for the time being, we’re probably mostly waiting. It could be a while before we have answers, let alone next steps. We’re not in a rush; if they’re still looking for answers, that means he’s around and there are still answers to be found.

A couple of things:

Medical info above and updates in The Latest section are coming from me and are based on my best understanding of what we’re getting from the medical team, but I’m not a doctor, there’s a lot to take in right now, and no one’s checking my work. Take everything with a heaping scoop of salt.
This page is for friends and family, but that is a weird line to draw with so many people who are rooting for us in our extended support system. No need to check with us before sharing with another person; If you think they would appreciate having the link, feel free to send it to them. Good rule of thumb might be: feel free to share it as long as there’s little reasonable chance that someone who has never actually met Amber or Michael might just happen upon it

Hug your kids tight when you get the chance.

– Michael, on behalf of Amber and Rowan