Upon my admission to the High Risk Perinatal (HRP) Unit of the hospital, a very sweet nurse greeted me. I remember that nurse (Sarah) because I was scared. I was not even sure that it was not all some horrible nightmare. I had been hospitalized many times in the past but I was never scared. This time I was not sure that everything was going to be alright… nobody was. Sarah greeted me like a friend meeting another friend for lunch. She was warm and friendly as she presented a crash course on preeclampsia. We joked and laughed as I was told about c-sections, the NICU, and about preemies. She answered any questions I had. I thought everything was covered. I was naive. There is no way I could imagine what was around the corner and she could have not known how or what to tell me about the journey I was about to embark on. Going into this there were several things I wish I knew.
First, I wish I knew that I was going to mourn and grieve. I was blindsided by the emotions that I experienced. The first few days in the NICU, I sat in front of my baby’s isolette and cried. I was not allowed to hold my baby yet. I looked around at some of the other mothers. They seemed to be able to pull themselves together (I found out later that their NICU stays were either short or they were close to going home). I wondered what was wrong with me. I wondered why I was having such a hard time with this. All that shock, grief, anger, sadness, and fear was confusing to me. This was supposed to be a happy occasion.
Second, I wish I would have known how hard it was going to rock my world. It was like falling through a portal into another realm. Future plans and ideas had to be scrapped, a new language had to be learned, I had to learn to live one day onto the next, and I had to redefine my priorities. My beliefs were challenged. I used to believe that things happened for a reason. There was no reason for this. My husband, my baby, and I suffered for no good reason. (However, I think good can come out of it. I am not sure what that is yet.) My life prior to my baby’s birth had become a distant memory.
Third, I wish I would have known that not all micro preemies “catch up” by two. I was given the odds of the death of my baby. No one mentioned disabilities. When I left the NICU, I believed that my baby was going to “catch up” just as all the anecdotal preemies I heard about had. Despite its length, I thought her NICU stay had been some what uneventful. I thought that the preemie part of our lives was going to come to a close. When we got home, I planned to move on with a “normal” baby experience. I was surprised when things unfolded differently. At home, my baby started falling behind. Her doctors say she is developmentally delayed. It was after that discovery, I found out that it is not uncommon for micro preemies… even the ones with uncomplicated NICU stays. I feel it is a disservice not to mention this as a possibility to parents who have already been through so much.
Finally, there are very few people who understand what having a micro preemie means. It is usually other micro preemie moms or the amazing health professionals that truly understand what it is like. I am lucky enough to have a few friends that were and are amazing despite no prior preemie experiences… They just know what it means to be a friend.
I found out about these things after I struggled with them alone for sometime. It was only from other micro-preemie moms, books, or talking to health professionals that I was able to understand and make sense of these things. I wish I knew about these things from the beginning. I have found it is much easier to deal with difficult things head on rather than merely hoping that they will not happen.