Written by Lesley Donaldson-Reid

Home life with a baby wasn’t what we thought it was going to be before Torran’s premature birth. Our first winter at home with our son, Torran, he was six months corrected age. He had come home from the hospital in late July after 139 days in Mt. Sinai and Sick Kids in Toronto. His head was the size of a one year old due to hydrocephalus, a swelling of fluid in the brain.

November was the first month since being born at 26 weeks and 6 days gestation in March that Torran wasn’t hospitalized for some health problem or another brain surgery.

Our struggles with prematurity did not end when we left the hospital. We brought home a complicated little man who required weekly medical appointments, daily professional interventions, and constant therapy provided by his parents.

We monitored his smallest actions, feeling the biggest responsibility for getting him to his milestones. He had hearing loss, fine and gross motor delay, and contractures, among other things. The only thing Torran could do well was eat and poop.

We sanitized everything and declined visits to, or from, friends with colds. Our social sphere shrunk and life focused on Torran’s development. I wouldn’t take my son to play groups for fear of infection and RSV. He had already had two colds despite our isolation, which, thankfully, didn’t turn into pneumonia. I also didn’t want to feed the bitterness that lay just a tiny scratch beneath the surface of my skin.

By December, Torran transferred from the bassinet at my bedside to a crib in his own room. Because of a problem with his shunt surgical site, we inclined his mattress and secured him in a Tucker Sling that prevented him from sliding down.

I missed rooming in with him dearly. I stood by his bed, or stared at his camera monitor, apologizing to him that I pushed him so hard to do his best every day. Every night I checked to make sure he was still breathing because I was still haunted by his apnea spells in the NICU.

Despite all of this atypical parenting and emotional struggle, my son amazed me in so many ways. He loved blowing juicy raspberries. Eventually, the down-cast appearance of his eyes (because of the pressure in his brain) improved and he would truly look at me - and smile. I watched him discovered the tiny actions, like hand regard, which are key to infant development.

Torran’s MEDEK therapy, which I did with him for 45 minutes twice a day, helped him gain enough core strength that he maintained a sitting position for brief periods. He was so cute when he tumbled onto the protective cushion surrounding him.

The weird lump on his head from brain surgery persisted. We couldn’t let Torran lie flat for long periods of time - the last time we did that, his shunt slipped out from his skull. My arms felt the strain of carrying my mini Sumo who couldn’t support his own body weight.

We took special care to monitor the site for complications. As the days stretched away from the most recent surgery, his body began growing into his oversized head. A head which he loved hiding in a bucket.

 

Torran had sunshine in the smiles which matured into giggles, and, after lots of auditory verbal therapy, into sounds. He wore hearing aids shortly after his first birthday, an event which my food-driven son celebrated by saying all three syllables of banana.

A year after his premature birth, he refuted the doctor’s prognosis of a greater than 50% chance of paralysis from the bleeding in his head. Instead of sleeping at nap time, he pulled himself into a standing position.

Facebook wasn’t a thing when we were first at home with Torran, and we felt very isolated. Our days focused on his healthy development, so it made sense to keep to ourselves until his little body could face the big, bad, germy world. We were told sickness could set him back, and we wouldn’t deny him his accomplishments. Having a premature child with increased medical needs made our family life more challenging, but no less worth living.

This post is part of the #HealthyThisWinter Campaign sponsored by AbbVie Canada. The experience and comments listed above are my own.