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Why We Still Visit the NICU Even Though Our Child Is Home

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My daughter Piper Grace was born in July 2015 at 27 weeks gestation (a full three months early) weighing just 2 pounds. She spent 95 long days in the neonatal intensive care unit (NICU) before finally coming home in November. The 95 days my husband and I spent visiting the NICU were some of the most difficult of our lives. Those on the outside rightfully wonder why we would continue to visit this place that was the source of so much pain.

My answer is that we are not visiting the NICU — we are visiting our other family.

The neonatologists spent countless hours with us in rounds, explaining their treatment plans and relaying Piper’s progress over the previous 24 hours. They explained head ultrasounds, spinal ultrasounds, transfusions, tube feedings, and medications so we could be equal participants in our daughter’s care. They showed up on their days off to check on babies they were worried about. They were on the other end of the phone when, after 21 hours at home, Piper had a bradycardia episode, turned blue and was readmitted to the NICU for two additional weeks. We visit the NICU so they can see what they helped create.

newborn baby in nice hospital
Piper in the NICU

The first person to greet me in the NICU when I was wheeled up to see my daughter at 6 hours old was a nurse. She said “I have your baby today,” but it felt like “I have your back today.” Over the course of Piper’s three months in the NICU, we developed relationships with so many nurses. We remember them for the special traits each brought to their work. Clare gave the best hugs, Lynne always sang, Paula liked to talk to Piper. We also remember them for the milestones they were a part of. Kathleen was the first to let me hold Piper. Jen readmitted Piper, then sent her home for good. We visit the NICU so they can cuddle our not-so-tiny baby and marvel at her progress.

I tell new NICU families to look around the NICU to find another family in a similar situation and befriend them. One of our biggest issues when Piper was in the NICU was that family and friends had not been through a similar experience. They could provide some comfort, but they could not relate to what we were experiencing, which was very isolating. These NICU friends provided a community we were so desperate for. Two of the friends we made in the NICU did not get to bring their baby home. Their son battled extreme prematurity for four and a half months before passing. We visit the NICU because it is a privilege to have our baby home with us, and we will never forget that.

doctor holding baby in the hospital
Piper and a doctor at the NICU

Our NICU journey was not an easy one. I encourage anyone whose child is currently in the NICU to acknowledge that this experience will change you. While in the depths of the journey, you may only be able to think of the negatives of NICU life. You may have experienced a traumatic delivery like I did. You may struggle to relate to your partner as you each travel your own road. You may fear for your child’s life daily. You will have good days and bad. You will be scared, tired and emotionally drained. Your tears will fall on the clear lid of a closed isolette. There is no way to change these things.

You will also laugh. You will laugh with the nurses and doctors. You will laugh at tiny baby noises. You will smile. You will smile when your baby comes off respiratory support or when they gain 10 grams. You will smile when you realized the good days are outnumbering the bad. You will learn. You will learn how incredibly strong you are. You will learn what you are capable of as a couple. You will learn how to care for your tiny baby with confidence.

You will visit.

You will take that tiny baby home and find one day that you miss those doctors and nurses. You will strap that baby into their car seat and bring them to the place where it all started. You will show them off and pass them around. You will smile as your NICU family surrounds your child. You won’t forget the difficult times in the NICU.  Instead, you will visit and continue to create good memories there. You will visit because you can, and that is a privilege. You are now part of the NICU team for life.  Welcome.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: January 18, 2016
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