Saying what I wish someone had said

Jaime

On the fourth day of my newborn son’s life, the desk clerk of the neonatal intensive care unit buzzed open the unit doors when she saw my husband and me approaching.

She stood up from the desk, telling us to immediately go to our son’s bedside to meet his pediatric cardiologist for the first time.

He had a diagnosis.

An echocardiogram determined that our newborn son’s inability to oxygenate his blood was attributed to three congenital heart defects: an interrupted aortic arch, an aortopulmonary window, and an atrial septal defect.

The abnormalities weren’t detected in any of the multiple pre-natal scans during my pregnancy. He would require life-saving intervention at a hospital five hours away or his organs would begin failing in a matter of days.

I remember feeling the color drain from my face. I don’t understand and am not qualified for this.

Surgery was scheduled for his eighth day of life.

We ultimately endured three ambulance transfers between four hospitals in the state and five ICUs worth of names and roles to remember.

Over the coming hours, then days, weeks, and months, I was plunged into the world of hospitalization, medical terminology, patient and family advocacy, and the never-ending gauntlet of medical insurance.

Meanwhile, I was experiencing mental and physical challenges as a post-partum mother myself while trying to comprehend open-heart surgery and how the side effects of likely vocal cord paralysis from the surgery would complicate feeding our newborn.

We relied on non-profits including Mended Little Hearts and Ronald McDonald House Charities that exist to support families like ours for advocacy, education, and providing basic needs such as a bed, shower, and laundry when your loved one’s medical needs require you to live at the hospital.

I look back on those days and am eternally grateful that my child received excellent medical and nursing care.

But most days I felt powerless.

Healthcare professionals buzzed around him, telling me his oxygen levels. His feeding schedule. His recovery timeline.

But I didn’t know my role.

Then one day I realized what I had known all along.

I did have a role.

I was in charge of the love.

I had been doing skin-to-skin contact when holding my days-old baby. Combing his fuzzy hair. Putting tiny leprechaun socks on his feet for St. Patrick’s Day. Singing him songs and telling him stories about his family members.

As parents, our role is to be our child’s fiercest advocates. Their voices when they cannot speak. And the soothing voice in their ears.

I wish someone had pointed out to me what was so obvious to others. So, instead, I’ll tell other parents who may find themselves in a similar situation.

Your child will have a team of nurses, doctors, therapists, and support staff helping them thrive.

But you have the most important role of all.

You are in charge of the love.