For most parents seeing your newborn is a matter of staring in their direction while sitting sleep deprived on the couch but for us, for 247 days we would have to drive 70 miles one way, pay a hundred dollars a month to park, walk across the street sometimes in freezing weather, show the security guard our badge, take the elevator to the 3rd floor, pick up a phone that was outside the locked doors of the NICU, wait to get buzzed in, sign in, check out a lock, put our belongings in a locker, rigorously and diligently wash our hands, put on a gown and then and only then could we see our baby.
The first time we walked in to the NICU we were greeted with a smiling face which was ironic because it seemed like the saddest place to be. We were taught how to wash our hands and trust me unless you learned how to wash your hands in the NICU you don’t know how to wash your hands. We put on a gown and walked down the hall to Room A. We must have looked like a deer in the headlights. Machines, wires, tubes, monitors, loud beeping coming from every direction my world was spinning and then I saw her my precious baby girl. I didn’t know what to think. My instincts kicked in I need to hold her.
Her Nurse for the day came over to tell us that she had called the doctor to let them know we were here. The doctor introduces himself as a cardiologist which instantly catches my attention. Why would a cardiologist be talking to us? I had had two Echo’s done on Everly when she was still in utero her heart is perfect. Turns out they had missed something and by something I mean everything. Everly had 3 holes in her heart. How does someone live with 3 holes in their heart? The doctor assured us that he believed that the holes were small enough to close on their own and we would probably be out of the NICU in a couple weeks. He was wrong.
After the doctor left and 36 hours after Everly was born I got to hold her. I was exactly where I needed to be.
One of the most difficult things I’d have to endure were my own thoughts. I began to feel like I wasn’t enough. Like most moms I wanted to be everything for my baby but the reality of not being able to help mine was crushing. I’m her mother I want to be the only one that can save her and now it felt like I was the only one that couldn’t. I’d walk in to the NICU and know nothing about her or the machines that were keeping her alive. The nurses gave her her first bath and changed her first diaper unknowingly robbing me of the few things I had left establishing me as this baby’s mother.
I slowly began to learn about her equipment not only how it worked but how it was helping Everly. By educating myself I started to become more comfortable and confident. Still it wasn’t enough. The doctors did two bronchoscopies by the time she was three weeks and were eventually able to diagnose her with Tracheobronchial Malacia finally an answer but this diagnosis only explained why she couldn’t breathe. A couple of days after her procedure her labs had comeback they told us Everly has CHARGE Syndrome. My initial reaction was relief we now know why Everly had all these anomalies, underdeveloped ear, partial facial palsy and three holes in her heart. I just had one question. What the hell is CHARGE Syndrome?