What They Didn’t Tell Me About Life After the NICU

While you’re in the NICU, they’ll tell you there will be ups and downs, setbacks and good days and bad. But what isn’t discussed as much are the overwhelming feelings you get after you leave the NICU.

They don’t talk about the nauseous feeling in the pit of your stomach that you’ll get when you have to walk past the NICU, reliving every single step you took down that hallway for months at a time. They don’t talk about the flashbacks that occur when you step foot inside the NICU to visit your second family. Flashbacks to the day they told you your daughter wouldn’t make it through the night; flashbacks to the numerous failed extubations, resulting in manual ventilation and watching your baby turn colors they shouldn’t be; flashbacks to the times when you couldn’t bear the news they were giving you, so you ran out to compose yourself somewhere else.

They don’t talk about how you can’t even go to the grocery store without hearing an alarm go off and having the hair on the back of your neck stand up. They don’t talk about the anxious feeling you get every night you put your babies to sleep, praying they will make it through the evening. They don’t talk about the how the slightest sneeze can send you into a mere panic. They don’t discuss your huge fear of getting pregnant again and having another baby end up in the NICU, feeling as though you have failed another child.

Nonetheless, they also don’t discuss the immense overwhelming feeling you will have looking at your miracle babies every single day. They don’t talk about how the tightest squeeze from their little bodies can make a bad day instantly better. They don’t talk about the joy that awaits you every day for the rest of your life. They don’t talk about how grateful you will be for the days you spent in the NICU, watching your miracles fight for their lives. They don’t talk about the memories that await you outside those doors.

They don’t talk about how you will spend every single second of every day holding onto every moment you can — every laugh, every tear, every boo boo and every new word. They don’t tell you what you’ve overcome as a parent and as a family is amazing and can only be understood by those who have been in your shoes.

They don’t tell you that you will hold onto those days in the NICU tighter than you could ever imagine. They don’t tell you that you will remember the first time your babies opened their eyes after they were fused shut as one of the most remarkable days of your life. They won’t talk to you about how it’s all worth it or how you will have a new appreciation for life, for parenthood, for your children and for miracles themselves.

They don’t tell you the NICU is the hardest yet most rewarding experience of your life, and you’ll look back and question how you ever made it through. Then you’ll look at your children and realize that’s how.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. 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.