Eighty-nine. That’s how many days my firstborn son, Jack, spent in the neonatal intensive care unit after being born at 30 weeks weighing 1 lb. 10 oz. You would think after almost three months in the hospital, being told you’re finally going home would mean the emotional roller coaster is over. You hope you’ll walk out those doors and never come back. You long for the feeling that your baby is “normal” and the days of incubation, antibiotics, surgeries, and blood transfusions are finally in the past. But while many parents talk about the scary days of watching their baby grow in an Isolette or their feelings of guilt, not many acknowledge life after the N.I.C.U.

I wish someone had explained to me that my son would need to see six different doctors. I was surprised to find that after being released from the hospital, everything needs to be monitored closely, including the baby’s eyes (for retinopathy of prematurity or ROP), liver function, heart development, and blood levels. In Jack’s case, we spent months ruling out cystic fibrosis, a genetic disorder that affects the lungs,

through a variety of different tests. Our doctors were very kind and allowed us to come in after hours and on weekends to accommodate our schedules. This was especially helpful since many micro-preemies need daily weight checks. Now, almost a year after Jack was born, our family is still shocked when they hear we have to visit the doctor twice a month to ensure that he is “catching up” to the growth curve. I’m also still left with sorting insurance bills (totaling more than a million dollars and growing) for care he received. If only someone had mentally prepared me for all this.

I share my story today, on World Prematurity Day, to offer a different perspective on what it’s like to have a preemie. Being aware of what to expect is so important for both parents and the whole family. The most important thing is that although there have been ups and downs, my son is getting better. I just believe it’s easier to handle life’s experiences if you’re at least a little bit prepared.

So, to all our Moms Meet members, if you’re a mother in the N.I.C.U, I encourage you to rely on others for support. And don’t hesitate to ask for help once you get home. Take the names and numbers of everyone you meet in the hospital in case you want to contact them in the future. Organize all medical records in a binder for future reference. And if you’ve recently left the N.I.C.U., know that you’re not alone. Many in your same position feel your struggles. Just know you’re going in the right direction. I’ve found support groups incredibly helpful in my journey with my son. And finally, to all our moms who may know someone who has had a preemie, even if it was a year or more ago, keep in mind that the family is most likely still feeling the effects. Be there for them even if it’s bringing over a meal, offering to babysit, or calling to see how they are. If you’re part of a Moms Meet group, you might even consider helping a family together. They will appreciate it more than you know.

Do you know anyone who has had a N.I.C.U. experience?