Having a premature baby is tough for anyone, but particularly for babies born at less than 29 weeks otherwise known as micro preemies. Micro preemies come with additional potential complications that likely lead to longer stays in the neonatal intensive care unit (NICU).
For my husband and I, we lived half of our son’s first year of life in the NICU and Children’s Hospital. It took some time to get accustomed to and figure out a routine especially since we live about 30 minutes away from the hospital. As a parent, you really want to be by your child’s side at all times, but realistically, it isn’t necessarily the best thing for you. We had to learn to be kind to ourselves and make sure that we took care of ourselves to be strong for Emerson. We also had to realize that there wasn’t much we could do early on since he was intubated and on a large ventilator that prohibited him from being able to be moved with the exception of his “touch times”. (Touch times are set times during the day where the nurse will do hygienic care for your baby. This includes diaper changing, mouth swabbing, wiping lips and eyes, and getting the baby’s vitals.) Parents are always encouraged to participate in touch time with the nurse’s assistance of course. This was the primary time we were able to bond with our baby early on.
We were blessed for our son to be in a NICU where he had his own room, which included a small pull out sofa for us to sleep, a rocking chair, tv, and bathroom with a shower. Fully equipped for us to stay whenever we wanted and as long as we wanted. In addition to this, we received daily calls from the neonatologists to update us on Emerson’s status and talk about any changes and/or goals for the day. Each day we were on pins and needles waiting for our call from the doctor. That call could alter the course of our entire day. Sometimes it was good news and other times it wasn’t the greatest or just kept us worried until the next day’s call.
Within a few weeks, we had a new family: the doctors, nurses, respiratory therapists, and staff in the NICU. We also had a new language as we learned all the medical terminology, testing, and procedures in the NICU. Our new normal of going to the hospital everyday became our way of life, and we were able to create a home away from home of sorts. Watching our son fight for his life was never easy, but our NICU offered so much support through it all. The NICU social worker would check in with us frequently to make sure we had the resources we needed, invite us to support groups, and just make sure that we were generally doing okay. The lactation specialist would stop by or call to make sure I was doing well with pumping exclusively. In addition, Emerson’s doctors, nurses, and respiratory therapists were always kind and supportive making sure we were doing all right and getting the rest we needed.
Looking back on it, NICU life wasn’t so bad, considering. I am only able to say that now that we are on the other side of it. When we were going through it, it definitely seemed like it would never end, and although I always knew Emerson was going to be fine, there were many times when I felt hopeless, helpless, powerless, emotionally drained, and just like I didn’t know how to get through the next minute of the day. In those moments, all I could do was cling to my faith and stay prayerful. Those were moments that no one could really do much to comfort me because I didn’t want to speak to friends or family since I knew most of the conversation would be me explaining things about Emerson’s status and in those moments, I didn’t have the strength for that. These were times when speaking with other NICU moms who were going through similar situations at the same time helped as well as joining some of the NICU Facebook groups.
NICU life will always be a challenging thing to navigate. In addition to the stress and worry for your child, it feels like there’s always so much going on, and initially, there’s a lot to learn before you get to a point where you’re comfortable with everything. The most accurate analogy that I’ve always been told is that the NICU is like riding a rollercoaster. This analogy is so true. Just when you feel like you’re about to get off, there’s another loop or another drop, and it keeps going until it’s ready to stop. My best advice, which is what a former NICU mom said to me shortly after Emerson was born, is that you have to just ride it. You will want to get off, and you’ll want it to stop, but you have to ride it until it’s done.