HIE Awareness: wires, tubes and beeping machines

In the span of a few hours, we went from giving birth to wires, tubes and beeping machines.

Our baby girl suffered hypoxic ischemic encephalopathy, or HIE, at birth, meaning her brain was damaged from a lack of oxygen and blood flow. Two to three out of every 1,000 births suffer from HIE.
This was not what we had expected, and we were terrified.

She needed oxygen. Her organs were shutting down. That first day, doctors and nurses didn’t know what would happen. She may need to be on oxygen permanently. She may not ever go home.

Our baby girl was the biggest in the NICU, but she was also one of the sickest.

For 21 days, we sat at her bedside. We fell asleep in chairs. We read books. We held her every chance we got.

We met doctor after doctor, and specialist after specialist. When we went home to sleep, we checked with her nurses on how she was doing.

Slowly, she improved.

She had gone through a treatment that cooled her core body temperature to try to save her body from further damage from her brain injury.

As the days passed, she was able to come off oxygen. Her organs began functioning again. She started to cry, a glorious sound we thought we would never tire of.

We learned how to give her medications, how to bathe her and care for the G-tube surgeons put in place.

And then, one Sunday morning, we got to go home. We watched our daughter like a hawk, wishing to go back to the beeping machines that told us when everything was alright, and when it wasn’t.
Our journey didn’t end there. We had lot of appointments with doctors, specialists and therapists that continue now, years later.

But from that day forward, we have always been a family.

We go through our ups and downs together. We celebrate together. We grieve together.

And everyday, we are grateful that our little girl is here with us.

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​Annie Goeller is the vice president of marketing for Hope for HIE, a nonprofit organization created to provide support to families of children with HIE.