My husband and I washed up to our elbows before we pulled on gowns and medical gloves, while the NICU staffed worked for 20 minutes to prepare our 2-week-old daughter for an exciting and nerve-wracking milestone: the first time we were able to hold her.

Our baby girl Brenna was diagnosed unexpectedly at birth with a genetic skin disorder called Harlequin ichthyosis, and she was rushed to the neonatal intensive care unit, where the medical team immediately began researching how to care for her very rare and critical condition.

Our arms ached with emptiness, but even simply holding our daughter was a huge challenge, because it meant that her body would be in room air and temperature, rather than in her covered isolette with the temperature and humidity controlled.

Born at 36 weeks gestation, Brenna was one of the largest and “oldest” babies in the NICU, but because of her extremely critical skin, Brenna was also one of the sickest, kept in isolation and carefully monitored for impending infection or potential respiratory problems. She was kept on morphine for pain, and until that two-week mark, we were only ever able to occasionally reach a gloved hand into a hole in her bed to touch her.

As a parent, the NICU is like nothing you will ever experience.

When your baby is transferred from your belly to an isolated incubator instead of into your arms, time stops. Your world stops. You live in every day, every hour, and there is very little talk about the future because it is so uncertain and the second that you start talking about the future, your baby’s monitors loudly beep with alarm, jolting you back into the reality that anything can happen at any second, to these fragile babies whose tiny bodies are fighting to live and to function.

Before the NICU, I didn’t really even know what grief was. Not in this way, anyway –the all-consuming, overwhelming, difficult to function kind of grief. When people say “hearts heavy with grief,” that is not figurative. It is literal. Praying and crying for each minute of your child’s life will leave you clutching your chest, as your heart becomes its own being, so weighted and so aching that your body shifts its focus on that heaviness and forgets how to breathe and to think.

Every day that our daughter was in the NICU, we awoke with worry – worry that she was getting sick, worry that she was in pain, worry even that she knew we weren’t there. Especially worry that she was going to die. We would call her NICU pod as soon as our eyes opened, asking the night nurse if everything was OK: what was her temperature? how did she eat through the night? did she cry much?

Whenever I wasn’t there, I wanted to be. And whenever I was there, I wanted to be with our son Connor, who was just two years old at the time. I was torn between two worlds – my world of former “normalcy,” at home with Connor, and the world of the NICU.

In the world of the NICU, you can do nothing but wait. You wait for your baby to die or to live…to live and get better and go home. But when your baby is born very early or very sick, home seems like a foreign concept. And so you live in the present, tensing with each monitor alarm and each incoming test result.

One day, we finally heard the word we’d been waiting for: home. And so we were able to walk out of the doors of the hospital, having endured a surgery at three weeks and a very aggressive blood infection where we were told she might not survive the night. I felt so ready and so not ready. I wanted to be home, a family of four, with no more daily hospital visits to coordinate, no more incubator standing between me and my daughter. But I felt so unprepared for the daily, hourly, care of a newborn with so many needs, so much risk for infection. I was so nervous about not having a one-on-one nurse at all hours of the day and a neonatologist to consult about every question and concern.

When they disconnected Brenna from the few machines that had been monitoring her since birth, I felt like she was going to die right then, now that we didn’t know her temperature and heart rate and lung saturation at every single second. I felt almost panicked walking out into the fresh air with her –outside, something she had never experienced before. She fell asleep in the car ride home, and I sat in back with her and leaned close to make sure her chest was still moving slightly up and down.

Though it’s been six years now since our 37 frightening days in the NICU, I can still recall so vividly the smells, the sounds and mostly the emotions – the fear and the despair and the heartbreak and thehope. The pleas with God every day and the peace that comes with fully surrendering everything to him. The elation accompanying every new step toward living, toward going home.

The NICU is a world I wish parents never had to experience…but miracles happen every day there. Because of the NICU, our precious daughter is now a spunky five-year-old who loves Minnie Mouse, reading and pizza, and she still climbs into my lap to cuddle often. “When you were a baby, you love to be rocked,” I remind her, and she always smiles at the thought.

Our daughter will always be affected by her skin disorder and always need lifelong care. It was the competent, compassionate caretakers who taught us from those first hours of her life how to give her the kind of medical care that we still do today. They kept her alive, and before they sent us home, they taught us how to help her thrive as well.

Every day, we are grateful for the NICU’s miracle workers, the doctors and nurses who dedicate their lives to giving parents the most precious celebrations, from the first time we were able to hold our little girl and every moment that we have been able to hold her since.

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