What Really Happened To Mighty Miles: Our NICU Nightmare Part 10.

The flood waters of Hurricane Harvey receded in Houston and left in it’s wake billions of dollars in damages and the new hash tag #HoustonStrong. The community came together and set an amazing example for the country of what people could do together in a crisis. I had never been more proud to be a Texan or Houstonian watching the stories of so many people from victims to volunteers, to business owners. I was inspired as I sat next to my recovering baby boy in the cold, quiet NICU.

There isn’t much you can do with a sleeping newborn, at home or in the hospital, but watching over him became my daily life. In the mornings, I took the train to downtown. because it was cheaper than parking. Then I met with the doctors making their rounds at 7 am and stayed by his side all day until 8 pm. Every day I watched and learned everything that I could. If this is where I had to learn to be a mamma, then I would give it my all.

I learned medical jargon, how to read monitors, what alarms to ignore, what alarms were scary. I learned to change his Colostomy bags so well that the nurses only had to assist me in changing them. I learned to smile and hide my own sadness and make silly faces at him as my baby screamed in terror at the poke of another needle. I learned the names and schedules of all receptionists, nurses, and custodians. When new doctors were assigned to him, I made sure they met Miles and knew his name and not just his stats in the computer. Like all good mammas, I learned my baby. I advocated for him. I fell in love with him, wires and needles and little colostomy bags in all in a dark, tiny hospital room.

I took the train home at night and the nights were hard, I won’t lie. It felt unnatural walking out of hospital without my baby. I am not a perfect person and Jack Daniels became a friend. Never was a whiskey person, but it got to the point. Most nights we had a quick dinner, then I took a hot shower, washed some clothes and then had a few drinks until it didn’t hurt as much. Then I was up at 6am to do it all again. I’m not proud of it, but we do what we have to do to survive in hard times.

In the meantime my baby was recovering and his team was more and more impressed with his progress.”He is officially the loudest baby in the NICU.” One Nurse joked as Miles exercised his lungs after being intubated for two weeks. His hoarse little cry was music to my ears as I hadn’t heard him cry since the night he was born. It was like he had been wanting to scream this whole time. The charm has since worn off, I assure you.

They may have moved him upstairs after month one because of his volume, but we weren’t complaining. Upstairs in Tiger Pod, for generally healthier babies that didn’t require one-on-one Nurse care, we had our own room and more privacy, which was great. It wasn’t all roses upstairs however, we had our scary days; dehydration, surgery complications, jaundice, and weight loss. Life in the NICU is unpredictable. His first month birthday came, followed by his second. Those days were bittersweet.

Maybe it was his annoying mother helicoptering around him daily, strength from his stoic father, optimism from his sweet Mimi, and countless prayers and visits from aunts, uncles, friends, and pastors that helped speed up his miraculous recovery. Maybe it was his talented team of doctors and nurses. Maybe it was all him and his sheer will to stay on this earth. Maybe the Lord just knew his purpose all along. Whatever it was, Miles got better. Way better. His stomach was healing. He was gaining weight and meeting every food challenge. He was smart and alert. He ate and pooped. He smiled. He loved being around people. He was growing into a regular little baby and I could feel it in my bones he wanted to get the hell out of there.

He was doing so well, they preformed the surgery to reconnect his bowels at six weeks, rather than eight. It went perfectly.

Ten days later, day 67, Tuesday, October 24th, standing among doctors and nurses during morning rounds, they asked me the same question they had everyday, “Any questions for us today, mom?” They chuckled a little because they knew my question. I asked it everyday. YEAH, WHEN CAN WE GO HOME? That day I got a different answer.

“Today. How about you take him home today, Mandy?” The nurses station went quiet. They all smiled my way. My heart stopped for a moment. Tears immediately came to my eyes. My breath escaped me. I knew it was coming, but I had dreamed of hearing those words for over two months and they hit me harder than I expected. I grabbed a Nurse and wept on her shoulder. I couldn’t believe it. I texted mom and Chris.

GET HERE NOW! WE ARE GOING HOME!!

We packed up our room, our home for the last five weeks, said good bye to our wonderful neighbors that are still friends today, and left as quickly as we could before anyone could change their minds.

I held Miles tight in my arms as we rode the elevator down eight floors down to the lobby. It had been 66 days since I had held him in my arms without wires tangled all around us. I couldn’t wait for him to feel the sun on his face for the first time and smell the fresh air of the outdoors. Strapping him into our car was better than I had ever imagined. Horns beeping and people shouting all around us in the busy hospital drop off lane didn’t even phase me. I drank that moment in, sitting next to him in the backseat as my husband drove us away from the hospital. It was a crisp and sunny fall day and it was really happening. We had made it. We were going home. It was the greatest day of my life.

Today, I remain at home with him after resigning from the school district that I love. The budget is tight, trust me but we are making it work for one year and I am loving it. By now, we have been home longer than we were in the NICU. Miles has been dismissed from the care of two doctors and is hitting every milestone with physical therapy and occupational therapy. His weight is in the 20th percentile. He is funny, and active and farts at inappropriate times. He is all boy. He is teething, and eating stage one foods. He hates tummy time. He loves his walker. He is a mamma’s boy for sure. He is silly. He is happy. He is a fighter. He is a gift from a God that I doubted for so long. He is here for a reason and I will help him find what that reason is, as this is now my life’s purpose.

We are moving on and the days of the NICU fade in my mind everyday. I wanted to write about it so we will always remember. I know life will get more normal for us and we will raise a busy toddler, a goofy kid, and more than likely a mouthy teen. It will get hard. We will have good times and bad times, just like everyone else. But I never want to forget what almost wasn’t. I never want to forget what really happened to our Mighty Miles.

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