It’s hard to focus on yourself, when your heart is fighting for his life in an incubator. The alarms are constantly going off, you never know which dip could be his last, and I got to where I was afraid to use the bathroom at times. Once, when I did, he was doing well, only to crash when I left the room. Hubby was still with him, and he said the room was swarmed by nurses, technicians, and doctors within seconds. They were able to resuscitate and stabilize him, but as soon as I saw their faces when I came back, I knew something had happened.
Well meaning friends and family members would either tell me that I was lucky to have someone else watching him at night (I still had to get up and pump, we got little sleep, and we’d often call to check on him), or tell me that they never would have left their babies. Of course I’d rather he was safe and home; and no matter how much I love him, I can’t go 5.5 months without sleep, food, or bathroom breaks (there were times I’d try). Leaving your child in the care of strangers each night is hard. The mom guilt was real – my body had failed him, I couldn’t protect him, and while over a dozen board certified doctors w/ all their testing told me I did nothing wrong; everyone else had their own opinions. I had to tell myself that I was doing everything I could, and that we were running a marathon, not a sprint. I had to put my oxygen mask on first, if I was to be of any use to him.
My husband was fired by his employer for “job abandonment”, despite having approved FMLA paperwork, signed documents from his employer, and everyone being kept in the loop. We were also still handling other family matters while trying to keep my business running, and spending 12-16+ hours with our son at the hospital almost every single day during his stay (except for the week when we both caught a cold – it was difficult being away that long, but we couldn’t risk killing him). Still, we tried to make time for ourselves, even if it was only in bits and pieces. The hospital was large, with numerous distractions such as gift shops, fountains, and holiday decorations. We tried to take a walk, either indoors or out, at least once a day to stretch our legs.
When we were home, our hearts were still with him, but we found we could distract ourselves by preparing for his arrival. Being as early as he was, we hadn’t yet converted the room which was to become the nursery, and I enjoyed decorating it, though often through tears, wondering if he would ever see it.
I tried to cook meals, both healthy things for us to eat at the time, and also to stock our freezer for when he came home… or if we needed time because he wasn’t.
The constant limbo was difficult, the ups and the downs, always on edge, never knowing what to prepare for. It’s difficult to describe how I felt at the time – I’m the kind of person who slows down and gets analytical during an emergency, often not processing the emotions until long after the situation has passed. Well meaning friends would tell me how I must have felt – terrified or over the moon, but really, except for a couple of occasions, I usually felt “focused” while with him, and only relaxed emotionally when we were apart. I didn’t cry when he crashed in my arms (I knew what to do and got him breathing again), but I did while sitting in the car at Kids-R-Us because I felt guilty after buying him a small stuffed animal when he already had so many, purchased by others, which he might never see (“Ducky” quickly became his favorite, and still is to this day). I think we all process our emotions differently, and it’s important to honor who you are – I tried to appreciate my well-meaning friends and family, even if they didn’t understand, couldn’t understand, what we were going through. Yet, through all of it, I also felt this peace which is hard to describe. That everything would be OK, would turn out for the good, and feeling that his story would help others one day. I only hoped that I wasn’t kidding myself.
Once he was home, and we were in reverse isolation (keeping germs out, rather than germs in), we could spend time with him while also working on projects for my company. My husband started writing in his spare time, and over the Internet, I leaned on my friends, both IRL and around the world.
It’s true that the NICU changes you. You start to see the world in a whole new way. Life becomes more precious. Some days you’ll cry, looking at your child’s scars; while others, you’ll be in awe of how strong his growing lungs have become. Some days, the scanning of items at the cash register will remind you of an oxygen de-saturation alarm; but then, when he’s older, you’ll laugh as he starts making his own beeping sounds, while backing up his construction toys, for a special alphabet block delivery.