A few years ago, I took Joe on a vacation in Florida. He chose a day trip to Universal Studios to experience the wonderful world of Harry Potter. It was him and me, a special Mommy-son date of the best kind. We drank butterbeer and hand picked a magic wand. The ride to experience was of course housed in a replica of Hogwarts castle. As we waited in line, I wondered if the ride would be frightening, but soon extinguished my fears as many children enjoy this ride–right?
Off we went on a simulated Quidditch ride that was enjoyable for all of ten seconds before a fire breathing dragon turned towards us and Joe exclaimed, “Mommy, I don’t like this ride!!!” To be quite frank, I did not either. It was terrifying, full of monstrous hairy spiders and ghoulish dementors. At one point I instructed Joe to close his eyes. When we exited the ride, he informed me that he finally listened to me for the first time ever and had indeed closed his eyes.
The moment I realized the rest of the ride would be terrifying, I felt an intense need to protect my child from the terrors that lay ahead. I held his hand, kept my eyes wide open for the next insidious experience and allayed his fears by telling him the ride would be over soon and to just close his eyes. When I realized he was scared, I understood I was not in control of this blood-curdling experience; I could only be there to support him through it. As we look back on that day, we laugh about the photographic footage and the experience of that ride.
The experience of parenting a child in the NICU is no different than the aforementioned ride. It is simply the same magnified by a thousand. I cannot promise Olivia the ride will be over in a matter of seconds, nor can I make the overstimulation, medical procedures and rubber gloves go away. This morning, Olivia’s belly measurements had gone up again and her platelet counts dipped. As nothing has grown in her blood cultures as of yet, the doctors and surgeons have begun to rule out a fungal infection. The hematologists cannot seem to find reason in her platelet counts decreasing as her bone marrow is clearly producing red and white blood cells. Thus, something must be consuming the platelets.
The surgeons suggested performing a laparotomy on Olivia’s belly to investigate a possible abscess or hidden pocket of infection (NEC). This would postpone Olivia’s PDA surgery, beginning feeds and transition from the ventilator. While this is not ideal, NEC is a dance that not one of us would like to repeat. I had planned on going for a run this afternoon to pound out some of the anger, sadness and fear with which I have lived for the past two months, let the tears and sweat mingle for a bit. My running shoes instead stayed tucked away in a plastic Target bag next to my chair as I waited for hours to hear word of surgery. Olivia’s vitals continued unchanged throughout the day as the minutes on the clock tick-tocked their merry way towards evening.
Many times over the course of this journey have I thought to exclaim, “Mommy, I don’t like this ride!!!” While I want the terror, anxiety and nausea to be over, it must be endured if Olivia is ever to come home. There are no guarantees in the NICU. I remind myself that we still have experienced more good days than bad during our time on this ride. Regardless, it is emotionally and physically taxing. The bright side is that Olivia is growing. We look towards brighter days ahead, but I’m not sure we will ever look back with a sense of nostalgia, as cute as this little bean is.