What Really Happened To Mighty Miles: Our NICU Nightmare Part 7.

A perfect day in the NICU is a rare blessing. It’s a small pause from the panic, the daily unknown, and the dread of multiple beeps on the monitor that make nurses and doctors run over and ask you to step aside for a moment. It’s a day with all ups and no downs. It’s a day that brings hope and positivity.

For all these reasons, a perfect day in NICU is not always a good thing simply because the higher you are up, the harder you will fall.

Friday August 25th, 2017 was a perfect day.

“He just looks great guys. His blood gases are perfect, his swelling is down, the bleeding in his brain has stopped and his lungs are clear. We are very happy with this progress.” Dr. L smiled reassuringly. Chris and I sighed deep breaths of relief, maybe the first in seven days.

Our baby’s seventh day on earth was probably what most people’s first day with their new baby is like. Miles opened his eyes for the first time, off morphine, and we were finally able to see his big, beautiful, butterfly eyes. We melted of course.

The doctors also deemed him well enough to try feeds and ordered 5 cc of breast milk, the first since the day he was born, to be given to him via feeding tube. But, the best part of our perfect day was when we got to hold him.

It had been seven days since the door had closed to the recovery room and I watched them roll my sweet baby away from me. Seven days of being perched beside him in a chair in this NICU, allowed only to stroke his tiny hands and wisp his feather-soft hair. Seven days of aching to hold my baby close to my heart.

So when they finally lowered him carefully back into my arms after seven long days, a warmth spread over me from head to toe. My soul sang. My baby.

It didn’t matter that I had to get sterile and stay within four inches of his bed so that his mermaid-like tail of wires and needles wouldn’t be compromised. I just closed my eyes and pretended that we were in his serine little room at home, adorned with elephants playing baseball, rocking in his grandmother’s rocking chair. I listened to him breathe and stared at his sweet face. I gave him a weeks worth of missed kisses. For a little while we were both at peace, just rocking. Safe. I said a prayer of thanks for those precious moments and for the gift of those seven days. Then I said it again as I watched my husband hold his son in his arms for the rest of the afternoon.

A perfect day.

“So how long do you think we will be here now, Dr L?” I asked as they got Miles comfortable in his bed again.

“If he continues making progress and barring no other problems arise, it could be just until he finishes his antibiotic treatment…sixteen more days.” She said she wasn’t making any promises. NICU doctors wisely never do.

I thought sixteen days? We could do that! A little over two weeks? A cake walk! It was the first time in a week that the sun was shining through the clouds for my little family. We were ecstatic. We shared the news with our family and friends. We posted it on Facebook. Sixteen days!

The forecast called for rain that Friday night so Chris headed home to be with our scared old dogs. No one in Houston was convinced just yet of the impending doom meteorologists were squawking about on the news. At the time, there was just another hurricane lurking out in the gulf. We Houstonians had been fooled one too many times with evacuation threats and flood warnings. Most of us had learned to keep an eye on the sky and go about life. So Chris and I had quick celebratory hospital dinner and I walked him out with a high five and a hug. Sixteen days. I almost skipped back to the NICU to tell our little guy goodnight before heading up to the Ronald McDonald House family rooms for some sleep.

As I entered the NICU, the usual calm of our pod had suddenly shifted. Dr. L and Dr. H, along with a handful of nurses, where surrounding Miles’ bed. I rushed over in a panic. Dr. H was on his phone describing the situation to someone on the other end. I looked down and saw what all the commotion was about. In less than one hour, Miles’ normally tiny stomach had swollen to the size of a small beach ball. He looked like he was about to pop. The skin on his tummy was tight and shiny, like a grape being squeezed. I knew immediately this was bad, what ever it was.

“What is this? ” I cried out frantically to no one in particular and Dr. H and Dr. L moved in close as they usually did when they had bad news to share.

And just like that, our perfect day was over and the storm clouds literally rolled in.



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