I was in Chicago last week for a conference of NICU parents put on by the March of Dimes. It was a reunion of the online community I’ve been part of for nearly eleven years. It’s always an emotionally-charged weekend, but the last few years, since he was diagnosed, my emotions have stemmed from Little Man’s journey, rather than the time we spent in the NICU with Big Man. This year was different. This year, I focused on my big boy, his life, and how we got to here from there.
A few weeks ago, our staff liaison asked me to read a book by an author who would be speaking at the conference. I looked it up, and was immediately intrigued. I bought the digital copy right away, and a hard copy arrived two days later. The book is Girl in Glass by Deanna Fei. It is one of the most honest portrayals of what it’s like to be the mother of a micro-preemie, what it’s like to have a child in the NICU, and all of the fallout that follows. If you haven’t lived it, this book will open your eyes. If you have lived it, Deanna’s words will take you back.
There were so many things I’d forgotten from Big Man’s NICU time, feelings I’d felt, things I thought, fears I’d never expressed. I was reminded how very near the edge of death he was. And I was reminded exactly how big a miracle his life really is. You see, so many things combined to make his life, and his outcome, what it is now. He was barely at the edge of viability when I started bleeding, actually three days shy, according to the standards at the hospital I eventually delivered. Every hour I was able to stay pregnant meant better odds. He not only made it past those three days, we managed to keep him in for an additional thirteen days, reaching 26 weeks gestation, which is a milestone in micro-preemie-hood.
The hospital I was initially admitted was contracted with another hospital which had a practiced antepartum unit, and one of the best perinatal groups in the state. If I’d been at home, or at work, when I started bleeding, I would have ended up at an entirely different hospital with an entirely different NICU. I shudder to even think about a few of those possibilities.
The fact they were able to stop labor that night was a blessing. Magnesium sulfate is miserable to endure, but it’s effective. I had time to receive three rounds of steroid injections to help his lungs develop earlier than they would in utero. Once the doctor discovered I’d lost 8 pounds in six days, I was put on a high-calorie, give-her-whatever-she-will-eat diet to help our baby grow. He was estimated to be 1 lb 4 ozs when I was first admitted. He was exactly 2 pounds when he was born, and considered big for a 26-weeker.
When Big Man was born, he was taken to another hospital ten minutes away. His NICU was advanced for its time, already utilizing family-centered care (getting the parents, and even siblings, of babies in that NICU involved in as many aspects of care as possible, 24/7 access to your baby), which was almost unheard of fifteen years ago. They also encouraged kangaroo care, which is holding your baby, skin-to-skin against your chest, proven to help maintain oxygen levels and stabilize heart-rate in your baby. The first time I held him this way, he was less than three weeks old, still attached to oxygen, no less than three IV’s, and all the monitors. I will never, ever forget that moment.
We didn’t know any different than what we experienced, assuming all neonatal intensive care units were like ours. Big Man’s isolette in those first dangerous weeks was in a small, dark, quiet room. It was covered with a blanket to keep out even more light and sound whenever the nurses and doctors weren’t examining him or administering one of the gazillion tests, medications, line changes, or blood transfusions. They worked hard to keep his environment as womb-like as possible, knowing every second of stimulation interrupted development of neural connections in his brain, and put him in distress.
Here’s the deal….all of those things combined to put him in the top 2-3% of outcomes for 26-week baby boys born under 1000 grams. Stop. Read that again. 97-98 out of 100 micro-preemie boys will NOT turn out like my son. Not only did he survive, he blew away the odds stacked against him. He is “normal”, with little-to-no medical or developmental issues. He hears, he sees, he runs, he is on the honor roll at school. So when I call him a miracle, trust me, I believe it. There were too many things out of our hands to not believe there was a higher hand acting in our lives. He really is a miracle, and I’ll never believe otherwise.