I am planning a spring release of Embracing Charlie on Amazon.com. Sharing my first chapter. Enjoy!
It was a surreal, life altering moment. The kind of moment 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. 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. It’s complete with muted, natural hued wallpaper, a TV armoire that doubles as a dresser, and a bedside lamp that has been bolted down to the end table. There is no bed, but in its place is a sofa that houses 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. There was a small inconspicuous sign next to the locked door that said, “Parent Sleep Room1114”. We were sent here, to room 1114, to wait. We were ushered away from the commotion of the Neonatal Intensive Care Unit. I gave birth, in an entirely different hospital, all but an hour ago. My mind raced with disjointed thoughts, as my arms lie 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 picture we 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 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 blankets the room. You can see it manifest over the faces of doctors and nurses. Aspiration to preserve life pushes them forward. They work through the shallowness of their own breath waiting to exhale until life is stable once more.
It’s no wonder the pressure is heightened beyond that of grown-up emergencies. These are babies, most of whom are premature. They are tiny beyond imagination. They have yet to encounter life, the palpable kind that happens beyond these walls. It’s about giving the opportunity of experience. It’s about the parents of these babies. It’s about their hopes and dreams for their children. It’s about would be brothers, sisters, grandparents, aunts and uncles. It’s about pastel balloons, welcome home banners and teddy bears. The stakes are exceptional.
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 was sent with me from the adjacent hospital, sat quietly beside me. They also waited for the details.
My husband, you see, had been given an assignment. He would stay with our son. I couldn’t bear the thought of him being whisked away, without one of us at his side. We discussed it for weeks leading up to his birth, he would follow my son to the neighboring children’s hospital, and leave me behind. He was hesitant at first as different scenarios played out in his mind, the ‘what-if’s’. I wouldn’t hear any of it. My 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 my second born child, our first son. His birth was quick, even quicker than the speedy delivery of my 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. The idea of him delivering a baby in the passenger side of his Volkswagen brings a smile to my face. The speed at which all of this was happening seemed tornadic and only compounded my feelings of inadequacy and helplessness.
Paging Dr. Love
The administration of my epidural was almost more than Paul could handle. Our circumstances limited my options for pain relief. My only option was an epidural. Pain meds would affect the baby, and he needed to be alert, and drug free. The suggestion of an epidural made me uneasy. The placement of what I’ve imagined to be a three inch needle in my spine was creepy.
Labor and delivery with my daughter went quickly, but this time who knew what could happen. A bit grudgingly, I decided to go ahead and get the epidural.
This decision only added to my husband’s growing anxiety. My labor nurse said that she would page “Dr. Love”, and get us on the waiting list. Dr. Love? Is that what she said? She left the room, and Paul and I looked at each other. We were both a bundle of nerves. Hearing his name, Dr. Love, welcomed a rather juvenile exchange of jokes and cheap amusement, poor Dr. Love.
When she returned she said he was on his second epidural and we would be his third. Paul looked over at me, all comedy had drained from his face, and he said, “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. “Can’t women become paralyzed from an epidural, I mean if it’s not done properly?” he said. I 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 blankly back at him. Did he honestly just say that? He was on the edge of a serious freak-out moment. This was sure to be a very long day. Only God knew what was in store for us. If this was how he 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. He was my calm. Unbeknownst to him, I had given him this assignment. I was going to deliver this baby, and he was going to protect us. We would feel safe and we wouldn’t be afraid. In hindsight, maybe I should have let him in on his assignment.
Things almost never go as planned. I found myself comforting him. I told him women do this every day, and it’s 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 them routinely in this hospital.
Nothing I said seemed to calm him down. My frustration rose with each passing moment. I could feel my face change, distorting in a rather unbecoming manner. Paul calls it ‘the Look’. My eyes narrow, as I ever so slowly raise the outer corner of my heavy brow. I was finished with trying to talk him off a ledge. I resorted to ‘the Look’. “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 crap about being paralyzed that you are giving to me now, because it’s not helpful!” All of this conveyed effectively through my piercing stare and raised brow.
Dr. Love came into the room, and introduced himself. I looked at him, then to my husband, and 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 talked myself into the fact 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 twenty-year-old inexperienced 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 epidural, I teased him about his youthful appearance, referencing the 80’s sitcom Doogie Howser M.D. He made the point that youthfulness is a good quality, and assured me that he was older than he looked. My husband sat on the window sill, looking annoyed by this lighthearted banter between Dr. Love and me. For just a moment I forgot our special circumstance; the circumstance that led us to this particular hospital. Abbott Northwestern just so happened to have a tunnel system that connected it to the highly respected Children’s Hospital of Minnesota. I had forgotten, for just a sweet moment, until the nurse ran through my dry medical history, and ended by saying “However, baby does have a known heart defect.”
I was annoyed with this perfectly lovely nurse. The word defect dropped from her mouth and I heard its ugliness. The room suddenly felt cold and empty. There was painful silence now, until I heard Dr. Love say, “Ok, here we go.” I sat on the side of the bed with my legs hanging from the edge. Paul sat facing me. The needle was surprisingly only mildly uncomfortable, followed by an odd hollow ‘ping’ noise. I wasn’t sure if it was audible within the room. I pictured a tiny little man with a hat and a teeny pitchfork used for coal mining. I imagined him nestled into the small of my back, with his pitchfork in 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 ok? Any complications?” He was reassured that all went well. I could see the olive color in his face return, as thoughts of a crippled wife at the hands of a teenage doctor left his worried mind.
Once the room was empty, and we said our thank you 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 ok, but what if something happened, you were only his third patient.”
I began to giggle, realizing why he had been so upset. “Today, I was Dr. Doogies’ third patient this morning, not his third patient ever!”
Vines and Stars
I spent only one hour in labor. I laid on my side, the room was darkened, and my eyes were shut. I pushed out the world and I asked God for his presence. I wore a silver bracelet around my wrist. It was a gift given to me by a perfect stranger. It had an inscription from the 19th chapter of Matthew verse 26, it read “with God ALL things are possible” I wore it each day since it was given to me. It served as a constant reminder of God’s presence. I held tightly to it.
My nurse came in to check on me. A little taken back by the speed of my progress, she turned to Paul and said, “Well, Dad are you ready to have this baby?” She rushed out of the room announcing that she needed to make some phone calls. This was not a routine delivery, and she needed all her ducks in a row. A team from Children’s would be present and waiting.
I was wheeled down a long hallway and into an operating room. I watched the ceiling tiles shift and change as I lie on my back. I spilled out my heart to God; I know with You, all things are possible, Jesus be with me, Jesus make his heart whole, Jesus be with him, Jesus provide healing, heal him, heal us.
The operating room was cold and sterile. My mom was to my left and Paul at my right. Two nurses stood at my feet. One was the perfectly lovely nurse that was there during my epidural. She was a petite, middle aged woman with a short, edgy, pixie haircut. The other nurse came in to help during delivery. Her young face was fresh and pretty. Her arms were fully tattooed from collar bone to wrist. Feminine floral, birds and vines wrapped her skin completely. The images were beautiful, and vibrant. My doctor was there too. She requested hospital privileges at Abbott to be with me during delivery. She’s smart and assertive, warm and compassionate, and I was thankful for her presence.
I lie in the quiet, cold operating room shivering. The five of them surrounded my bed. The air was heavy in pity and loss, the presence of which I’ve become quite familiar. I have grown weary, especially by the pity. It has impinged upon my joy.
Once the team from Children’s Hospital was there and waiting in the adjacent room, I was ready to deliver. Following a big contraction, I sat forward and pushed hard in response to my Doctors’ plea. An oxygen mask was placed upon my face, and I was told to breath in deep for my baby boy. His oxygen level was low and he was showing signs of distress. Panic starts 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. She pulled it towards her, 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 hard enough that I could see her arms shaking.
He was out and momentarily placed on my belly as his umbilical cord was cut. I only caught a glimpse of him. He looked like my beautiful daughter, only his features were chunky and masculine. He had my husband’s long torso, and strong facial features. He was blue and there was no sound from his lips. He was whisked away into the adjoining room, leaving the hinged door swinging back and forth in his absence. I was left behind lying in fear. A nurse came back for Paul. Paul stood wavering, not sure which room he belonged in. I pleaded with him to go with our son.
There was a window into the adjoining room, allowing my doctor and nurses to see him. I studied their faces, looking for clues to what might be happening. They stood motionless, peering into the room. There was only silence. I started to recognize how things must look beyond the hospital door. I felt myself slipping slowly into a distant place I’d never been before, it was cold and empty. I was hidden away, finding refuge in the cold. I decided that there I would wait.
The Neonatologist came into the room and explained how very sick my 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 her baby. But, my son needed critical care, and they must go now. She said that she was taking Paul with her. I wanted to cry out. This wasn’t supposed to happen this way, it was all too fast. I was supposed to hold him, even for just a moment.
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. 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 with my mother at my side. We never ventured outside; instead, we maneuvered through the underground tunnel system. It must have been the way my son came too.
We entered the basement of Children’s and took the elevator to the second floor. The doors opened into a fresh space. It was new and bright. Cheerful children’s artwork, and multi-colored stars adorned the hallways. Within this bright space there was a large Oncology floor, two Intensive Care units, and operating rooms where open heart surgery is performed on teeny hearts.
We made our way through security and into the Neonatal Intensive Care Unit. We were brought into the wing where my son lied. It was different than the place we toured just a few weeks ago. It was noisy and chaotic. There were many 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 was at his side. I looked at him and he motioned to where all the activity was. It was my little boy they were working on. His face was almost purple now. His image was too painful, and so I coiled further into my cold, empty place.
His cardiologist, Dr. Singh, came over to greet me. He said that 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. It would 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 at his birth. He was getting very little oxygen.
Dr. Singh then explained that he had just stepped away from the Operating Room. He’s been with another little one whose straight-forward surgery 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. He explained that this was normally done in an operating room, but our son needed help now. They planned to perform it there in the NICU.
A nurse stepped in and led us away to wait elsewhere during the surgery. I wanted to get a closer look at him before we left. I tried to get near him. He already had tubes and equipment coming from everywhere. There were so many people. I could see him struggling; his whole body seemed to gasp for air. It took all that I had to leave him there.
As we waited in the parent sleep room I continuously asked for the time. I tried to do the math, the math on just how long he was deprived of oxygen. I wondered about the things that happen to a little one who is struggling so. My mind was clouded leaving me unable to do simple math. I could have simply asked someone how long it’d been, but I couldn’t express myself either. I was paralyzed by my fear. Lord help us in this, is the only thought that rang through my mind.
My Mom gently asked Paul what happened on their way there. 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 that came and told you she needed to take him, she had her arm interlocked in mine, and we tried to keep up, lagging behind the isolette. 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 attempts. 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? We prayed every day for the best, while trying to prepare for the worst. I didn’t even get to hold him. He was torn from me, and immediately had to fight to stay alive.
My epidural had almost completely worn off and pain started to penetrate my pelvis. I kept it to myself. Finally, there was a knock at the door. Paul opened it to Dr. Gremmels, whose face showed no emotion. I held my breath, as he said, “The Septostomy is finished, and your son’s oxygen levels have significantly increased.” He continued on, expressing how difficult the surgery was. “It took several attempts to get the catheter through your son’s septal wall.” Dr. Singh piled into the tiny room behind him.
“Thank you, thank you, for delivering at Abbott.” Dr. Singh said, “He wouldn’t have survived had you delivered him elsewhere.” We had been brought by God’s Grace to this place.
Fearfully, I asked, “What about the amount of time that he spent deprived of oxygen? Is it possible that there is brain damage?”
Dr. Singh quickly replied, “No. I’m not concerned.” He explained that babies can go 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 would regrettably be short lived. We would find out the following day that his brain had not gone unharmed.