Chapter One Embracing Charlie

I am working on a late 2013 release of Embracing Charlie on Amazon.com.-sharing my first chapter. Enjoy!

Embraced, Mindy

Chapter One

Breathless

April, 2005

It was a surreal, life-altering moment—the kind you never forget, the kind that seems so curious you begin to question its legitimacy. Was this really happening? Is this tangible? Here I sat in a wheelchair, in a space that I am certain must have been a storage closet at one time. I imagine it was used to store disinfectants, brooms, and those little plastic peanut-shaped puke buckets. Now, revamped, it looked like a tiny hotel room, complete with muted, natural-hued wallpaper, a TV armoire that doubles as a dresser, and a bedside lamp bolted down to the end table. There was no bed, but in its place was a sofa that housed a teeny pull-out mattress. Unlike any hotel I’ve ever stayed at, it had a red nurse call button attached to a cord on the wall. Passing down the hallway, you might not notice this hidden place but for the small, inconspicuous sign next to the locked door that said “Parent Sleep Room 1114.”

We had been sent here, to room 1114, to wait, ushered away from the commotion of the Neonatal Intensive Care Unit. I had given birth in an entirely different hospital all of an hour ago. Now my mind raced with disjointed thoughts as my arms remained painfully empty at my sides.

What we would learn in the coming weeks is that the Neonatal Intensive Care Unit isn’t typically the unnerving scene we had just witnessed. It is, in fact, often quiet and hopeful. Nurses attentively care for teeny, critically ill patients. Parents stay close, often at the side of their child’s Isolette , and often in quiet reflection. Doctors hover near. Rooms are dimly lit, and there is a rhythmic, repetitive hum from the multitude of monitors and ventilators.

The noise happens when a baby is in distress and in need of heroic care. Alarm spills in and quickly fills the room. You can see it manifested on the faces of doctors and nurses. The need to preserve life pushes them forward. They work through the shallowness of their own breath, waiting to exhale until life is stable once more.

The pressure is heightened beyond that of other emergencies. These are babies, most of whom are premature. They are tiny beyond imagination. They have yet to know life, the palpable kind which grips beyond these walls. Everything that happens here is to offer a chance at that palpable, griping life experience. It’s about pastel balloons, “Welcome Home” banners, and teddy bears. The stakes are exceptionally high.

We waited. An IV still pierced my hand, and the effects of my epidural still lingered in my legs. My husband, Paul, was slow to give details, only offering a sentence at a time. He sensed my fragility. My mother and a nurse who had been sent with me from the adjacent hospital sat quietly beside me.

I had given Paul an assignment. Immediately following the birth, he would stay with our son because I couldn’t bear the thought of him being whisked away without one of us at his side. We had discussed it for weeks leading up to today: Paul would follow our baby to the neighboring children’s hospital, leaving me behind. He was hesitant at first as different scenarios played out in his mind—the “what-ifs.” I wouldn’t hear any of it. Our son would not be alone. If I couldn’t be at his side, his daddy would be there, and they would have a piece of my broken heart with them.

He was our second child, our first son. His birth was quick, even quicker than the speedy delivery of our daughter. If we had another child, I would surely be the woman on the evening news whose baby wouldn’t wait. Paul would be left with the task of delivering a third child on the side of the freeway. It’s funny, considering his squeamish nature. The birth of our daughter nearly left him passed out on the delivery room floor. Yet, now, Paul sat upright and steadfast after dashing with our still-wet newborn to the emergency care he needed.

Our world had suddenly begun spinning with unbearable speed and intensity. With each passing moment my feelings of inadequacy and helplessness compounded, weighing heavily upon my chest. I was nearly breathless.

 

Paging Dr. Love

The administration of my epidural had been almost more than Paul could handle. Due to our circumstances, it was my only option. Pain meds would affect the baby, and he needed to be alert and drug-free. The suggestion of an epidural made me uneasy; the idea of placing what I imagined to be a three-inch needle in my spine was creepy. Who knew what might happen? A bit grudgingly, I decided to go ahead with it.

My labor nurse said that she would page Dr. Love and get us on the waiting list. Dr. Love? Is that really what she said? As she left the room, Paul and I looked at each other. Already both a bundle of nerves, we began to giggle and exchanged some rather juvenile jokes at poor Dr. Love’s expense.

The nurse returned and said Dr. Love was on his second epidural and that we would be his third. Suddenly, Paul looked over at me, all comedy drained from his face, and demanded frantically, “Are you sure you want to do this? Are you sure it’s safe? It’s kind of freaking me out.” He started regurgitating some of the rare complications of epidurals. “Can’t women become paralyzed? I mean, if it’s not done properly?” I had shared these tidbits with him during my first pregnancy. I guess he had been paying attention after all. “How am I going to take care of everything if you can’t walk anymore? Seriously, are you going to let this guy named Dr. Love do this?”

I just stared back at him. He was on the edge of some sort-of meltdown. We knew this was sure to be a very long day. Only God knew what was in store for us. But if this was how Paul was going to respond to something as simple as an epidural, what would happen when we made it to the big stuff? He was supposed to be composed, strong, and unwavering. Unbeknown to him, I had given him the assignment of being my calm. I was going to deliver this baby, and he was going to protect us. We wouldn’t be afraid. In hindsight, maybe I should have let Paul in on my plan.

But things almost never go as expected, so at this point, I found myself comforting him. I told him women get epidurals every day and it was going to be just fine. I reminded him that it was my only option for pain relief, and that the nurse had explained that they do epidurals routinely in this hospital.

Nothing I said calmed him down. My frustration rose with each passing moment. My eyes narrowed as I slowly raised the outer corner of my heavy brow. I was finished with trying to talk him off a ledge. I resorted to my piercing stare and raised brow, an expression that Paul has lovingly coined “The Look.”, It conveyed my irritation: I don’t need you freaking out about every little thing today. I need you to be strong. I need to hear words of encouragement, not this stupidity about being paralyzed that you are giving to me now, because it’s not helpful!

Just then, Dr. Love came into the room and introduced himself. I looked at him, then to my husband, and then back to Dr. Love. I asked this fresh-faced young man in green scrubs, “You’re Dr. Love? The anesthesiologist?” Yep, Dr. Love looked to be about eighteen years old. I guess the joke was on us. I tried to persuade myself that he might be twenty. Now I wanted to take The Look back. What if it’s not done properly? Can’t women become paralyzed from epidurals done by inexperienced twenty-year-old doctors with silly names? How will my husband take care of everything if I can’t walk?

I asked about the risks. We talked about the numbers. Dr. Love reassured me. He talked me down from my ledge, expressing that epidurals are routinely done at this hospital with a high success rate and almost no complications.

I decided to go ahead with it. I knew Paul wasn’t happy, but he smiled through his fear, trying hard to put on a supportive face. As Dr. Love prepped me for the procedure, I teased him about his youthful appearance, referencing the ’80s sitcom Doogie Howser, M.D. He made the point that youthfulness is a good quality, but also assured me that he was older than he looked. My husband sat on the windowsill, looking annoyed by this lighthearted banter. But for just a moment, the banter let me forget our special circumstances that had led us to this particular hospital: Abbott Northwestern, with its tunnel system connected to the highly respected Children’s Hospital of Minnesota. I forgot, for just a sweet moment, until the nurse ran through my dry medical history, ending with “However, Baby does have a known heart defect.”

The word “defect” dropped from her mouth and I heard its ugliness. The room suddenly felt cold and empty. I was annoyed with the perfectly lovely nurse whose words had jarred me back to reality. Awkward, painful silence filled the room now, until Dr. Love said quietly, “Okay, here we go.”

I sat with my legs hanging over the side of the bed. Paul had moved to sit facing me. Surprisingly, the insertion of the needle was only mildly uncomfortable. It was followed by an odd, hollow “ping” noise that I wasn’t sure was even audible within the room. I imagined a tiny little man nestled into the small of my back, a hat on his head and a teeny pitchfork for coal mining in his hand. Strange, yes, but it isn’t every day that a needle is placed into the small of your back.

Paul quickly said, “So is that it? Was it okay? Any complications?” Dr. Love reassured him that all had gone well. I could see the olive color return to my husband’s face as thoughts of a wife crippled at the hands of a teenage doctor left his mind.

Once the room was empty and we had said our “thank yous” to Dr. Love, Paul turned to me and said, “I can’t believe you let him do that to you!”

“Do what to me?”

“Stick that needle in your back. I am so relieved that everything is okay, but what if something had happened? You were only his third patient!”

I began to giggle then, realizing why Paul had been so upset. “Today,” I said firmly. “I was Dr. Doogie Howser’s third patient this morning, not his third patient ever!”

 

Vines and Stars

I spent only an hour in labor. I lay on my side, the room darkened and my eyes shut. I pushed out the world and asked God for his presence. I was wearing a silver bracelet that had been a gift to me from a perfect stranger. It had an inscription on it from Matthew chapter 19, verse 26: “With God ALL things are possible.” I had worn it each day since receiving it. It served as a constant reminder of God’s presence. Lying there in labor, I clutched the bracelet tightly.

When my nurse came in to check on me, she was taken aback by the speed of my progress and said to Paul, “Well, Dad, are you ready to have this baby?” Then she rushed out of the room, announcing that she needed to make some phone calls. This was not a routine delivery, after all, and she needed all her ducks in a row—primarily, a team from Children’s present and waiting.

As I was wheeled down a long hallway into an operating room, I lay on my back and watched the ceiling tiles shift and change. I spilled out my heart to God: I know with You, all things are possible. Jesus, be with me. Jesus, make our baby’s heart whole. Jesus, be with him. Jesus, provide healing. Heal him; heal us.

The operating room was freezing. My mom was at my left and Paul at my right. Two nurses stood at my feet. One was the perfectly lovely nurse who had unwittingly jarred me back into reality during my epidural. She was a petite, middle-aged woman with a short, edgy pixie haircut. The other nurse had come in to help during delivery. I noticed her young face, fresh and pretty, and her arms, tattooed from collar bone to wrist with feminine designs of flowers, birds, and vines. The images were beautiful and vibrant. My doctor was there, too. She had requested hospital privileges at Abbott to be with me during delivery. She is smart and assertive, warm and compassionate, and I was thankful for her presence.

I lay in the quiet operating room, shivering. The air was heavy with pity and loss, with which I have become quite familiar with since my baby’s diagnosis. I’ve grown tired, especially by the pity. Its impinged on my joy.

Once the team from Children’s Hospital had arrived and was waiting in the adjacent room, It was time for delivery. Following a big contraction, I sat forward and pushed hard in response to my doctor’s plea. An oxygen mask was placed upon my face, and I was told to breathe in deeply for my baby boy because his oxygen level was low and he was showing signs of distress. Panic started to fill the room. We waited for the next contraction, and I pushed hard again, as hard as I possibly could. My doctor reached down and grabbed onto the bedding underneath me, pulling it toward her and startling the nurses on either side. My pelvis was closer to her now, and my legs were super-extended in the stirrups. She was pulling so hard that I could see her arms shaking.

Then suddenly he was out and, just for a moment, placed on my belly as his umbilical cord was cut. It was quiet—no sound came from his lips—he was whisked him away to the adjoining room, the hinged door swinging behind. I had only caught a glimpse of him. He looked like our beautiful daughter, except that his features were masculine. He had my husband’s long torso and strong-facial features.

A nurse came back for Paul. He stood wavering, not sure which room he belonged in. I pleaded with him to go with our son. I was left behind, lying in fear.

A window facing into the adjoining room allowed my doctor and nurses to see our baby. I studied their faces, looking for clues. They stood motionless. There was only silence. I started to realize how things must have looked beyond the operating room door.  The pressure of it all began pushing me somewhere deep within. I felt myself slipping into a distant, empty place where I’d never been before. It was icy and raw-my own quiet place for pain-there I waited.

The neonatologist came into the operating room and explained how very sick our baby was. She said that they needed to take him away. She apologized and said that she rarely ever takes a child before Mom is able to hold him. But my son needed critical care, and they must go immediately. She would take Paul with her. I wanted to cry out. It wasn’t supposed to happen this way! It was all too fast! I was supposed to hold him, even if just for a moment.

But I was forced to stay behind and wait until the effects of my epidural started to wear off. I tried not to think about it, but the thought kept creeping into my mind: What if he dies and I never get a chance to hold him alive? It seemed like an eternity before a new nurse was assigned to me and I was finally on my way to reunite with my baby. My nurse pushed me in a wheelchair, my mother walking at my side. We had no need to venture outside; instead, we navigated through the underground tunnel system. It must have been the way my son had come too.

We entered the basement of Children’s and took the elevator to the second floor. The doors opened into a fresh space, new and bright. Cheerful children’s artwork and multi-colored stars adorned the hallways. Within this bright space was an Oncology floor, two Intensive Care units, and operating rooms where open-heart surgery was performed on teeny chests.

We made our way through security and into the Neonatal Intensive Care Unit, into the wing where my son lay. It was different than when we had toured just a few weeks ago. It was noisy and chaotic. About ten doctors and nurses huddled around one Isolette. I scanned the busy room to see Paul sitting on a tall stool in the corner, a nurse at his side. I looked at him and he motioned to where all the activity was. It was our little boy they were working on. His face was almost purple now. The image was crushing. I recoiled further into my icy, empty place.

His cardiologist, Dr. Singh, came over to greet me. He said they’d intubated him and confirmed with an ultrasound that, yes, indeed, he had transposition of the great arteries. He explained the need to perform an emergency septostomy to create a hole in his heart allowing oxygen-rich blood to mix within the chambers. He said the pressure in his lungs was very high and he was getting little oxygen.

Dr. Singh then explained that he had just stepped away from the operating room where he’d been with another little one whose straightforward surgery had snowballed into a critical all-day event. He asked if his colleague, Dr. Gremmels, could perform the septostomy. Dr. Gremmels emerged from the heap of hands surrounding my son and explained that this was normally done in an operating room but that our son needed help now. They planned to perform the surgery right here in the NICU.

A nurse stepped in to lead Paul, my mom, and me away to wait elsewhere, but I desperately wanted to get a closer look at our baby before we left. I asked my nurse to push me near him, as she did one who was attending to him stepped aside allowing me to see. He already had tubes and equipment coming from everywhere on his tiny body. Hands and voices swirled frantically around him. I could see him struggling, as if his whole body were gasping for air. Recognizing the urgency of his needs, I nodded to my nurse that I had seen enough. She backed my wheelchair away and the space closed in around him. My heart was painfully raw.

As we waited in the parent sleep room, I continuously asked for the time. I tried to calculate just how long he had been deprived of oxygen. My mind was clouded, leaving me unable to do simple math. I could have asked someone how long it had been, but I couldn’t express myself either. I was paralyzed by my fear. Lord, help us in this, was the only thought that rang through my mind.

My mom gently asked Paul what had happened on their way here. He turned to me and asked if I wanted to know. “Of course I do,” I said.

“They turned a corner, beyond where you could see, and that’s when they started running with him, Mindy. I mean actually running with the Isolette through the tunnel system. We could hardly keep up. The doctor who came and told you she needed to take him, she had her arm interlocked in mine, and we tried to keep up, but we lagged behind. She told me how very sick he was and how they were trying to do everything they could to help him. She said that he hadn’t responded well to their intervention. Then another team of doctors and nurses met us in the tunnel system. They had been running too. It was an unbelievable sight.”

I was trying hard to process. How could this be happening? I didn’t even get to hold him. He was torn from me, and immediately had to fight to stay alive, how cruel.

My epidural had almost completely worn off and pain started to penetrate my pelvis, but I kept it to myself. Finally, there was a knock at the door. Paul opened it to Dr. Gremmels, whose face showed no emotion. Dr. Singh squeezed into the tiny room behind him. I held my breath as Dr. Gremmels said, “The septostomy is finished, and your son’s oxygen levels have significantly increased.” He continued on, expressing how difficult the surgery had been. “It took several attempts to get the catheter through your son’s septal wall.”

“Thank you, thank you, for delivering at Abbott,” Dr. Singh said. “He wouldn’t have survived had you delivered him elsewhere.” I exhaled sensing we’d been led here by God’s grace.

Fearfully, I asked, “What about the amount of time that he spent deprived of oxygen? Is it possible that there’s brain damage?”

Dr. Singh quickly replied, “No. I’m not concerned.” He explained that babies can manage with low oxygen levels for some time following birth. I sensed everyone’s relief. I hadn’t been the only one trying to do the math.

Our relief, however, would be short-lived. We would find out the following day that his brain had not gone unharmed.