One evening in January 2014 we made our usual nighttime trip to the NICU to visit and say good night. When we got there, his nurse told me that she needed to talk to me when she got time. When she came she brought a chair and rolled it right up to mine, right beside Avery’s isolette. She had papers in her hands. Fear took over and my heart began to beat rapidly and my mind started to wander. “Avery is going to go to the level 2 NICU in the morning.” I exhaled, then: What? Awesome! But I couldn’t help to think: Is he ready?
Level 2 signified a great deal to us. For almost 3 months we’d all walked the same path to get inside those double NICU doors. At the end of that hallway lay the choice to go straight ahead or veer right. Those of us with the smaller, sicker or more fragile babies went straight into level 3. The families with the bigger, healthier “feeders and growers” or with less severe issues went right and into level 2. Level two meant we finally got to go in THOSE doors. It meant Avery was healthier and now needed less intensive care. He was now a feeder and grower. It meant that he was there to gain weight and grow. Level 2 meant that Avery would soon be coming home.
For the duration of his time in level 3 we’d watched families come and go. Sometimes in days or weeks, a few for months. But they always left. Four months is a very long time, after all. Long enough for 28, 30, and 32 weekers to get big enough and strong enough to go home. We made friends and then lost them. That wasn’t the hardest thing, though. That honor was reserved for those rides down in the elevator with Moms leaving the hospital with their baby. With healthy, term newborns. It happened a few times a week, at least. I can’t really describe the jealousy that I felt in those moments. I can only say that it was intense and I’m now very ashamed. Level 2 meant that I’d soon get to be THAT Mom.
One night about 3 days into his level 2 stay he had an awful night. He desatted frequently and even had a few apnea spells that required stimulation before he’d breathe again. I felt like my worst fear was coming true. He’d just gotten here and now I just know they’re going to put him back! He didn’t go back, though. Aside from a couple of isolated bad days that night was the worst of the very bad ones. He did get better every day in level 2. Before we knew it he’d been in level 2 for a couple of weeks and we’d all settled in nicely. It wasn’t too different…less alarms, less nurses. He slept, ate, got his medicine and fewer respiratory treatments than ever before. He was gaining weight like I couldn’t believe.
I’ll never forget how it felt when they said to bring his carseat. If all went well he’d be home by Valentine’s day. He started getting all of his tests done- it’s amazing just how much has to be accomplished in order to bring home such a tiny little person. He had to do all the things term babies have to and then plenty more. We met with the medical equipment company and got his monitor and oxygen and learned how to care for it. On Wednesday night, we roomed in at the hospital. All night under a nurses supervision we took care of him by ourselves. We didn’t really sleep. We were too excited and nervous. At 8 AM we wheeled him back into the NICU to await his discharge. Arick and I went back to the motel and took a nap before we checked out for the final time.
That was probably the longest day of my life, all of us in the waiting room just waiting for them to say he’s ready, we can take him. When the time got close Arick and I went in together and our good friends were there visiting their son. I think seeing them is what sent me over the edge. I cried so hard that night for all of us who’ve ever left our babies in a hospital and been expected to go on as normal. For all the parents stuck in that torturous limbo. For Jessica and Omar and their handsome son with the head full of gorgeous black hair. I cried because we were leaving them. Because their son had to stay. Because I was terrified. I broke and everyone there that night graciously put me back together. Nurses we’d grown to love hugged us in congratulations. Jessica came over and hugged me and told me it was ok, their time was coming- rejoice in this day. The day he came home was almost more difficult than the one he got here.
We walked those same steps one last time. Out the doors, around two corners and down the hall to the elevator. Down the long hall to the lobby and out those doors into the night air. Avery came home that night, and I finally got to be that Mom.
A year later, I’m no longer scared and depressed. The NICU took things from me that I’m just now realizing. I know I’m changed forever. Avery, we’ll…he’s just amazing. Beautiful and loving. Smart and playful. Everything God meant him to be and so much more. We had big dreams for him, as all parents do. We dreamed of his first day of school and watching him play football. Annoying his sister and getting into trouble. I’ve come to realize that our dreams for him shouldn’t have changed. We still want everything the world has to offer for him. He just may not accomplish it in the way we expect.
Yesterday was a very difficult and emotional day. There’s a lot I’m not ready to talk about, especially until we have more information. I’m not allowing myself to think the worst unless that’s all there is to think. I will tell you that he was diagnosed with spastic quadriplegic cerebral palsy. This means that all four of his limbs are affected. Whatever else it means, I don’t care. He’s our son and he’s perfect.