Because they were in the NICU, I assumed we had to be with them every waking moment. Early in our NICU stay, I felt guilty if we weren’t there every moment of every day. I thought that was what we were supposed to do. I felt ultimate guilt when my husband and I made the decision to return to work. We didn’t have a choice. We knew we had a long term NICU stay ahead of us and it was not financially feasible for us to remain out of work for that length of time.
I remember learning within the first day of our NICU journey how important it was to not visit the NICU if you remotely felt ill. I became obsessed with washing my hands and making sure I was not around anyone who thought they might be sick. About a week and a half into our NICU stay after one of our boys had been transferred to a surgical hospital in town, I didn’t feel right. I knew it was sheer exhaustion from traveling between two hospitals, pumping, recovering from a c-section and the subsequent infections that followed, and the intense stress of having two boys who were fighting for life.
As we were driving to the hospital that evening to see our son at the surgical hospital, I felt like I was coming down with something and made the gut wrenching decision to not go into the NICU. I knew I wasn’t sick – I was exhausted. The guilt of not going to visit my son was horrible as I sat in the waiting room while my husband visited with our son, Campbell, in the NICU. While I sat in the waiting room quietly beating myself up for not going in when I knew I wasn’t sick, Campbell’s NICU nurse came to visit me in the waiting room. She knew I was just exhausted but wanted to give me a report first hand and let me know he was doing the best he could be doing given his situation. I can’t remember her name but I will always remember her face and her generosity for caring for me in the moment I should have been caring for my son.
Six months into our NICU stay, our son, Joseph, was recovering from major surgery to reconnect his intestines after a late onset case of Necrotizing Enterocolitis. Three days after surgery, my husband and I were exhausted. We had spent the previous two days at the hospital during his long surgery and first day post-operation. We were mentally, physically, and emotionally exhausted. For the second time in our NICU journey, we made the decision not to visit the hospital. Joseph was sedated and on a ventilator. He needed to rest so he could recover. We needed rest. I felt like we had not slept in days. We left work that day, went home, and crashed. I remember calling the nurse to tell her we would not be visiting. She completely agreed we needed rest. She gave me a report, promised to update if anything changed (Joseph continued to rest), and told us to rest.
If you are currently in the NICU, it’s okay if you need to take time for yourself. It’s okay if you need to stay home and rest. It’s okay to leave the NICU and have a nice dinner. It’s okay to sit at home a little longer on Saturday morning while you drink your coffee before heading to the NICU for the remainder of the day. It’s okay to go see a movie one afternoon. It’s okay to take a break.
Yes, you may find yourself feeling guilty while you are taking care of yourself. However, in order to take care of your child, you need to take care of yourself. You are important. You deserve to take care of yourself.