My husband and I were blessed with twins 3 years ago who decided to meet us early, VERY early. It resulted in a 9 month stay in the NICU and overcoming many hurdles as a family… Fast forward and you have two very curious little girls who test the limits AND is a testament of what miracles are made of.
So what’s it like after the NICU? What did we have to go through as a family once our “micro” preemie made it out of the hospital?
WE LIVED… and had many follow up appointments. WE IMPROVED… and earned every ounce they gained. WE HAD OVERNIGHT SCARES.. and grew healthier lungs then went back home. WE FOUND PROBLEMS.. and found treatments.
Truthfully, the first year was a transitional year. There was a lot of things we had to learn to cope with… like having an oxygen tank at home. My husband and I were waking up throughout the night to make sure our daughter didn’t take her oxygen mask off. Her pulse ox wakes everyone up whenever there was a hiccup. All of this eventually became a routine. We got used to it. Tired or not, this was our new normal for awhile- at least for the next 2 years of their life.
Personally for me, it was hard to leave the hospital. Wait, what? I know. We’ve been there for 9 months… wasn’t I sick of it? Yes. I wanted my baby home.
But, she was still oxygen dependent (24 hours NON stop), she was fed through a GJ tube (which she managed to pull out twice… ), and had a machine attached to her at all times to monitor her vitals. I was petrified. I couldn’t push a button to call for a nurse. I didn’t have the security of having doctor’s I knew on call. And, I had to rely on my judgment to gage my daughter’s health on a daily basis. I no longer had the daily ROUNDS to voice my concern at 8am with doctors and nurses who medically checked her wellbeing. No, it was left to our family to act quickly when we needed and to not freak out when she was okay.
It was also difficult for me to transition our family socially. At the hospital, you had to check in and out of the NICU. It was easier to control the amount of people our daughters were exposed to (when you have twins with medical needs, this was important to enforce). Outside of the NICU world …we had groceries and doctor’s appointments. I didn’t think that I’d have to stop strangers from coming too close or wanting to touch our kids (please don’t touch other people’s kids). It was frustrating at first to have to tell strangers not to do this. We couldn’t afford to get our kids sick. But, I quickly got over the discomfort. What mattered was the discomfort my kids would go through if they got sick.
So why write about all of this? I wanted to let parents who may be experiencing similar circumstances that they are not alone. My family found ways around this. We learned to cope with unfamiliar scenarios and educate ourselves about things that do pop up after leaving the NICU. One thing my I’ve learned is that my role as my daughters’ biggest advocate doesn’t stop at the NICU. And, I make no apologies for it. As a family, we try to make the best decisions we can and move from there.
Now, we have two very clever and curious little human beings. They are still receiving treatments, but their lungs are MUCH better. They are healthier. One step at a time… it’s all it takes to realize that when you look back you’ve walked a mile.