Why We Take the NICU Journey One Moment at a Time

Everything is different after you experience the NICU. It changes you forever. Watching your child fight to survive is heartbreaking and you will never forget it. No matter if your journey in the NICU lasts one day or 100 days, all are equally important. My daughter Avery’s NICU stay lasted for 17 days. She was born full term with severe respiratory distress, a blood infection that made her septic, and developed persistent pulmonary hypertension(PPHN) and pneumonia. She has brain damage (periventricular leukomalacia) as a result of her oxygen levels at birth. Her brain has “rewired” itself around the damage and she appears to be a healthy 3-year-old girl with no long lasting effects other than the PVL.

I promise you, you are going to remember every single second of being in the NICU. The good and the bad, you will never forget.

You will never forget the sights and sounds. Especially the low O2 sats alarm on the monitor. That one haunts my husband and me.

You will never forget the first time you see your baby hooked up to many different machines and monitors. You will never forget the sound of the oscillating ventilator and how violently it makes your baby shake while it pumps 300 breaths in those little lungs every single minute.

You will never forget the beautiful sound of your baby crying for the first time after being extubated.

You will never forget feeling so lost in the beginning. All of this medical terminology sounded like another language.

You will never forget when you began to actually understand all that medical terminology that was said during rounds.

You will never forget the NICU nurses and doctors that took such wonderful care of your baby.

You will never forget that “mental fog” you were in. You never knew what day it was and frequently had tears falling.

You will never forget the hugs and prayers your nurses gave you during those crying spells.

You will never forget the feeling of “scrubbing in” before you can even enter the room. And putting the gown and mask on before you can even hold her.

You will never forget that fabulous feeling of holding her for the very first time.

You will never forget how it feels to walk in and see several nurses and RT’s standing around your baby trying to decide the next move in order to save her life.

You will never forget the wonderful feeling of walking in and seeing that your baby is well enough to have just one nurse that day.

You will never forget the horrifying conversation you had to have with her doctor when things were not looking good at all.

You will never forget the awesome, uplifting conversation you had with the doctor when your baby started doing much better.

I could go on and on, but its just one of those things you can’t really understand until you experience it. We knew nothing about the NICU prior to Avery being born. Now, her nurses and doctors are like family.

It’s overwhelming. Sometimes you wonder if you will ever make it home with your baby. You cry, you get mad, you beg and plead with God to heal your baby. When you feel like this, just take a moment. Just stop thinking about what will be, what could be, what should be, and literally take things one moment at a time.

It does not matter how long your baby is in the NICU — it does not matter if yours is a preemie or a full term sick baby. No two journeys are the same, but all are life-changing.