What Really Happened To Mighty Miles: Our NICU Nightmare Part 9.

Houston is enormous. It’s essentially a blanket term for the upper Gulf Coast of Texas, stretching into parts of East Texas. So on that Sunday, August 27th, 2017, what the rest of the country was seeing on every news channel was virtually every neighborhood, from the luxury million dollar homes sitting on the southern Gulf of Mexico to the north eastern suburbs to downtown Houston, where folks like myself reside, go completely under water. Hurricane Harvey had not even made landfall. The doctors who were supposed to operate on my baby at 8:00 AM that morning had to live somewhere…

“We will be removing twenty-five percent of his bowel this morning.” A new doctor, Dr. C, who had barely made it into the hospital early that morning, explained to me at the bedside of my baby. Miles was still sedated since his exploratory surgery that Friday night. I missed seeing his big sweet eyes.

Dr. C went on to sum up that this surgery, a jejunostomy, would require Miles to have a stoma and an ostomy, They would act as his missing bowels for six to eight weeks. Then, depending on his healing and overall health, he would have another surgery to reconnect his bowels. He said although many function at home after this type of surgery with colostomy bags, his team would not be recommending it because of Miles’ already weakened immune system and because of the possibility that he may have more complications coming.

Our dream of sixteen days till home was gone. We would be in this hospital for at least two more months. Period. I wanted to be devastated, to throw a fit, to punch something, to scream, but my baby was about to be cut open and my husband and dogs were possibly evacuating the city along with all my friends and family.  The time for a pity party wasn’t now.  I had to be an adult, even though I felt like a scared child. I had to be there for Miles.

“Half the operating room team cannot get here So we are going to have to operate bedside.” Dr. C informed me as his scheduled surgery time came and went. He said it was not preferred but desperate time called for desperate measures. Miles had to have the surgery or risked further complications. The team began to pour in and parents of our fellow pod babies were instructed to leave the NICU.

“You too, mom. Time to tell him goodbye.” The nurses looked at me as I stood next to his bed. “Mr. A is here to walk you out.” Another somber Chaplain stood with hands folded at his waist. Why the hell is he here? Nothing is going to happen, right?

The scene of all those doctors and nurses preparing to operate on my baby for the fourth time, the rain pounding against the window, that Chaplain’s pitiful looks and the thought of walking out of that NICU and being alone for the next few days was too much and I began to sob. Losing my breath sob. Knees weak sob. A kind nurse put her arm around me and whispered comforts to me as the whole staff watched me lose it. Eventually I kissed my baby and walked toward the lobby with Mr. A trailing behind.

Seems like they always interview the guy without a shirt on in these situations. I chuckled as I tried to cheer myself up a bit amidst the horror that was unfolding all around Houston. I sat in the lobby watching my fellow Houstonians get rescued from the rising waters. I wanted to ask for those Facebook prayers just once more, but felt they were needed by so many others that day. So instead I waited, alone. It was another one of my darkest times, in that waiting room. Not even sure what I would do, if he didn’t make it through this one. I couldn’t think of anything worse than having to stay there alone until the water receded, knowing he was gone. Texts from friends and family letting me know they were safe helped ease my fears. Chris was still safe and had power, my friends and family near the gulf were all accounted for.

After a couple of hours, I saw the Dr. C and his team heading toward me. Every thing had went well. Now, it was time to wait. Wait for clots, wait for floods, wait for healing, wait to go home. Wait…

That night, after sitting with Miles for the rest of the day, I found a nook around the corner from the elevators of the seventh floor NICU. It had a window overlooking the flooding city and benches so that I could build a fort around my camp site. I told the night nurses I slept in a bright orange hoodie so if they needed to come and find me I was easy to spot. I washed up in the bathroom, made a pallet on the floor, and settled into what would be my lobby home for the next week until flood waters of Harvey receded .

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What Really Happened To Mighty Miles: Our NICU Nightmare Part 5

“We need to get through to the children’s hospital!” We shouted at police officers standing by a barricade to a closed road that our GPS has lead us to. We could see the helicopter carrying our baby touch down on top of the hospital. It was just after midnight and the road around the hospital was lit up blue and red with police lights. An officer helped us with a detour. We found out the next day that someone was trying to blow up a Sam Houston monument in protest. Of course.

Chris was already there so he guided the rest of us by phone on where to go in the huge mall- like building. The hospital was dim and empty. The only sounds you could hear were the whirl of floor buffers and the ding of elevator doors. My mother, brother and I were quiet in the elevator, all of us on three days of no sleep and terrified at what was waiting for us when the doors opened.

On the seventh floor, we met up with Chris and walked to the lobby. He said the doctors were coming back to speak with me. His eyes were swollen and he squeezed my hand over and over as we waited. After a few minutes, the doors to a staff only entrance opened and a team of doctors speaking in a low huddle walked toward us. My heart pounded in my chest.

“Hello, Mandy, I am Dr. L and this is Dr. H. Have a seat and let’s talk about little Miles.” She shook my hand and held it for a moment. She was a thin older woman with a yoga body from way back. She wore turquoise and silver. Her hair was salt and pepper and short. She looked kind and smart. We all sat at a small, colorful kid’s table.

“Mandy, Miles is very, very sick. I will be honest, his heart beat was almost nonexistent as the life flight landed.” She began. She had tears in her own eyes as she held my hand from across the table. “We have a machine that Dr. H and his team control called ECMO that is his only hope at this point. If we don’t get him on it very soon, you need to go and tell him goodbye because he will die.” She said. Thick tears fell from my tired eyes as I blinked at the thought.

Dr. H, a handsome young guy that looked and spoke more like the cool youth pastor at a church, grabbed my other hand from across the table and began to describe how the machine worked. It would basically pump his poisoned blood out of his carotid artery from his neck into a machine that cleaned it and then would pump it back in, keeping him alive by acting as his heart and lungs.

Dr. H reiterated that the machine was only going to give Miles a fighting chance. His body had to rise to the challenge and take to the antibiotics as well. He had to fight too.

50/50, they said. A coin toss.

“Questions?” They asked as they slid a clipboard with documents requiring my signature toward me. No matter what my questions or concerns were at this point, it didn’t matter. Like they said, this was his only chance so I signed and initialed as fast as I could.

The surgery to connect him was successful and Miles’ sick blood began to be cleaned in the ECMO machine. Later that morning we were taken back to see him in the NICU. He was in a pod with several other sleeping babies. It was quiet except for the constant hums and beeps of all the machines keeping all those babies alive. I stepped up to the tall platform of the ECMO that looked like something out of Star Trek’s mission control room. I looked down at my sweet baby. He had made it through the surgery but his fight had just begun. The next 48 hours were going to be the deciding factor of life or death. Period.

“What do we do now?” I asked Dr. L as she stood among my family and I around his little bed.

“Go home, eat, shower and pack a bag. Then come back and be here for him, especially these first two days. We will just have to wait and see what happens.” She said.

Wait and see what happens. We had heard that so much in the two days that he had been on this earth. Patience was never a virtue.

Before she left I asked her to write down all of his diagnosis so that I could research them and understand more of what was going on with him.

In doctor scribble she wrote:

Group B Strep

Bacterial Meningitis

Sepsis

Septic shock

Respiratory Failure

I stared at the those words over and over in a quiet Denny’s restaurant early that Sunday morning. We stopped in for a quick breakfast before heading home to shower and pack a bag for our indefinite NICU stay. I googled each ailment as we somberly sipped coffee and poked at our eggs. The doctors were right.

50/50. A coin toss.

It was one of my darkest hours, that breakfast. Over the years, my faith in the Lord has been somewhat in question. My views have always been a bit controversial. But for some reason that morning, I knew the only thing that was going to tip the scales in our favor, the only thing that was going to save our baby, was prayers. Lots and lots of prayers.

I grabbed my phone and opened my Facebook app.

Dear Facebook Friends and Family…