Once upon a time…

Our story is quite similar to those of many other parents of special needs children, we grew up, fell in love, decided to get married and start a family. Two years into the world of toddlerdom, we decided to have another child. How challenging could it be? I was one of four children and my husband, one of three. Our parents managed without the modern conveniences of baby monitors, wipe warmers and host of other unnecessary baby products and paraphernalia.

Since I was thirty-nine(considered to be an advanced maternal age fourteen years ago!) at the time of second pregnancy and due to having some preeclampsia with my daughter, my doctor convinced us that we should have an amniocentesis.  Begrudgingly we acquiesced and went forward with the procedure. I remember the morning, my husband and I were not in agreement with the procedure, he was worried, however, he was a worrier and worried about most all things. Being an educator, I had heard about many health conditions that could be remedied while a fetus was in utero and thought about how we could be proactive should there be any challenges. I remember lying on the table and noticing how large the needle was, feeling as though I would faint, I decided to look away and focus on the uneven ceiling tiles. Even though the doctor had numbed my abdomen, I could still feel the dull pressure from the needle. Unfortunately, Evan was moving around so much (as if to warn us to leave him alone!) and the doctor ended up having to make two punctures in order to extract the amniotic fluid. I noticed that it looked like a sort of pink Kool-aid. I was exhausted after the procedure and went home for a greatly needed nap.

Brief Bliss..

I anxiously remember waiting to hear back from the doctor to hear the results. The days ticked by like months. Finally, one day during my lunch period, my phone rang, and I quickly scrambled to find a quiet place to receive the news. Anyone that works in a public-school setting knows the challenge of this notion. I locked myself in the bathroom and took the call. I was so nervous that I continued to ask the doctor to repeat the words several times, “All is well. Your baby is in absolute perfect health.”

Instantly, the rush of adrenaline surged through my body and I could feel a warming sensation run from my brain to my toes. My feelings catapulted from absolute fear to incredible relief. Hearing those words felt like we hit the lottery, how could we possibly be so fortunate to have two healthy children?

Our life continued as per usual, I worked full time as a 5th grade ASI (for students requiring additional support)  literacy teacher, tutored and took graduate classes to fulfill my professional development hours. I remember during one particular class that focused on children with special needs our professor reading a poem, “ Welcome to Holland” by Emily Perl Kingsley.The words seemed foreign to me and had very little meaning aside from the general sense of empathy one might have for someone experiencing strife or challenge in their lives. I paid little attention to it and turned my attention and focus on the clock, eagerly waiting for time to go by as quickly as possible so that I could return home. I was exhausted and just wanted to be home cuddling my almost two-year-old daughter.  A few weeks later I began to feel lower back pain, insatiable thirst, extreme fatigue, and a feeling of leaking urine long after I had gone to the bathroom. I called my doctor and he reassured me that it was due to the ‘weight of the pelvic floor,’ standing too much, pregnancy induced incontinence and just being a mom to a busy toddler. Never once did he call me in for an exam and/or to test the fluid. I soon dismissed my symptoms and worked through it all. I didn’t want to seem like a complainer and/or hypochondriac. I was a pretty neurotic mom and wouldn’t even use Splenda once I found out that I was pregnant!

 Something Is Just Not Right….

A few days later, on March 9th, while giving my daughter a bath, I noticed a rash under her arm. I called my husband and asked him to come directly home instead of visiting his mother for her birthday. We quickly took Olivia to the emergency room to be seen as her pediatrician’s office had long since closed for the day. As we waited for the results of some additional initial testing, I remember feeling so tired, I could barely keep my eyes open. It was determined that Olivia had a nasty case of Scarlet Fever. Apparently in small children, the virus will find host cells on any part of the body. Hours later, we pulled up in front of CVS to retrieve her medication. I offered to get the medication, while my husband stayed in the car with a now sleeping child. As I walked to the store, my legs felt like they were made of concrete, with each step, I remember finally falling asleep later that night thinking that I had never before felt so tired. The next day, which was a Friday,  I called my doctor to inform him that I had been exposed to Scarlet Fever and asked if I needed to be concerned. The receptionist took the call and since I didn’t receive a call back, I assumed that all was well. I took a half day and left my daughter with my mom. Upon returning home, I remember feeling as though I could slip like Rip Van Winkle, and when we finally came home actually put her in front of anElmovideo and drifted off into a deep slumber. I would never do this as toddlers can find themselves in trouble in a matter of seconds, but I just needed to desperately to close my eyes.  I just attributed the extreme exhaustion to the lack of sleep the night before.

By Saturday, I began to have lower back pain, and again, I just dismissed it as feeling tired and overworked. I never knew the signs of labor as with my daughter I went over my due date by three days and had to be induced.  By Sunday morning I began to cramp, and I immediately placed a call to my obstetrician. There was another doctor on call and he advised me to go straight to the emergency room. En route to drop off my daughter at my Mom’s house,  once we arrived at my mom’s house, I had an incredible urge to go to the bathroom, it was then that my water broke. Thinking back now, we should have called an ambulance, but again, we were in shock and didn’t understand the imminent danger that we were in at that moment in time.

Now that we had secured a babysitter for our toddler and were off to the emergency room. We were taken right away, before long a doctor was examining me. It all felt very surreal, as though had a movie reel playing before me, one that I couldn’t turn off or away from no matter how I tried. I recall how the doctor motioned for my then hysterical husband to speak in the hallway. Minutes later, he came to me and explained that had I been two weeks earlier or later, we would not be in such danger. I shuddered to think about the two weeks before statement and tried to desperately focus what was happening. I turned away and focused on the uneven raised swirling pattern which reminded me of a pattern we had in our home in Long Island. My mind began to wander as I was given three injections to help my baby’s lungs. Before long, I was whisked onto a gurney and carted into another ambulance. As I was transported to a hospital with a level 4 NICU, I watched the world pass in front of me,  I couldn’t quite process what was actually happening. Why am I here? What is actually happening to me? Am I okay? Is my baby okay? I have lesson plans to write, a dark wash to fold and I am supposed to watch the last episode of The Sopranos while eating Chinese food tonight.

The Beginning of the End…

Within seconds of arriving, I was once again moved, now into a small room filled with doctors, one after another, they introduced themselves. “Hello, I am the chief of neonatal care, I’m the chief of so and so, I’m the chief of such and such.”

“Do you understand what’s happening?” one of the doctors finally asked me.

If felt as though I had fallen to the bottom of a well, I couldn’t speak no matter how hard I tried. I was just numb. Apparently, I was in some sort of shock, dilated nearly nine diameters and being prepared for an emergency caesarean section. I couldn’t believe the ironic twist of this delivery, with my first pregnancy, my every move was monitored. I was induced two days after my due date, only to dilate 4 centimeters after 28 hours of labor.

As a pair of nurses worked to undress me, I remember how one of them wiped a piece of hair off away from my face and tucked it into the shower cap, she had the fear of death in her eyes, and reassured me that “We are going to do all that we can honey. Just try to relax.”

It was the sound of sadness mixed with pity that startled me, she was so kind and nurturing, but at the same time, so frightening.
“Find my sister Kelly, she’s a doctor, she can help,” I announced in a lame attempt to remedy the situation. No matter what medical crisis befell us, my sister had always managed to save us.  It felt as if time were moving in slow motion and everyone was just a character from a scene ofGrey’s Anatomy. Completely incapacitated, I watched to see what would happen next, numb to any kind of feeling or emotion. As I reflect upon the experience, I am sure that I was in shock and my body was shutting down from all the stress.

Ironically enough, I was on a table, looking up at the sterile stainless-steel poles and lights over the operating table. Suited up in a white jumpsuit was my sister Kelly. I am not sure how she traveled from Upstate, New York to New Brunswick so quickly, but miraculously she was there. She held me hand as I counted backward from ten. Ten, nine, eight, green pastures with soft rolling hills. Fields of daisies and small bunnies filled the space. Everything was so joyful and sweet. Fade to black….

“Do you know where you are?” asked a voice coming from the largest set of the whitest teeth I had ever seen.

My throat felt dry, scratchy and hoarse, I would have killed for some water. I saw a small bundle being toted off into a carrier looking like someone’s red and white gym bag.

“Is that my baby? Is he okay? Am I okay?” I croaked through the scratching throat to my sister.

“Everyone’s doing all that they can.” She responded vaguely. I was too exhausted to press further.

A few minutes later I was moved to the recovery room where my mother came to see me to let me know that everyone had come and was hoping that all would be okay.

“I lit a candle in the chapel,” she assured me. I’m going to need more than a candle I thought to myself. In the darkest, deepest recesses of my mind, I could have never imagined being where I was at that moment. I knew that everything wouldn’t be okay but was too exhausted to complete a thought. I drifted off into oblivion for what seemed like months. Hours later,  it was morning and I awoke in a room by myself. I asked the nurse that came in to take my vitals where I was and what had actually happened. I vaguely remember everything that had happened. Perhaps it was just a bad dream? Maybe I just had a stomach flu?

“What’s happening?” I shyly inquired. “Is my baby alive?”

“The doctor will see you shortly. He’s completing his morning rounds and will update you soon. Just try to relax and get up to use the toilet. It’s important to move around,” she announced. Her voice was completely emotionless and commanding.

“Let’s get you up,”  she announced as she began to take hold of my harm, in an attempt to get me out of bed. “You need to void, it’s important,” she added.

Void what? Void my psyche of its well-being? Void my soul of any kind of hope and dreams of having a healthy baby? Void me entire being the will to live? Yes, if that’s the kind of void you want, then I’ve already ‘voided.’

“Not yet, please. I just need a minute,” I half cried, half moaned, half pleaded.

She stopped pulling at my arm, however there wasn’t an ounce of human empathy in the way that she reacted. Not in the way that she looked at me, not in any of her words or her actions.

“I’ll give you a few minutes to gather yourself, but we need to get you moving,” she warned and spun on her heels out the door. I remember observing how adept she was at turning like that and thought that she must be good at dancing.

After she left, I watched as the sunlight crept through the slatted blinds making the blanket appear striped. The sun continued to shine, the day began just as any other, how dramatically my life had changed in just 24 hours. I had no idea what had happened, I didn’t even know if my baby had survived the night? I was too afraid to even cry, as that would have meant that I was committing to an emotion. I couldn’t feel anything, that is except the stinging, burning, lava-like sensation coming from my abdomen and my fresh stitches. It was Monday morning; I wasn’t supposed to be here. I was supposed to be at school presenting at the faculty meeting about the NJASK test. I had made the teacher prep- packets and was already to discuss the writing prompts and rubrics that needed to be reviewed. Why did this happen? Why my baby? Why me? I wouldn’t even drink diet Coke or use Splenda. What did I ever do to deserve this? How could an innocent little being ever deserve to suffer like this? The poor baby was ripped from my womb, forced into a world that he was not yet prepared to exist within. That is assuming he lived through the night. Who even knew? No one was around, no one was willing to talk with me. I wanted to scream. I wanted to summon Super Man to stop the earth from rotating on its axis, I wanted to go back in time, to change the outcome, to make things different, to not be here at this very moment. I allowed myself a few more minutes of complete and utter quiet, focusing only on the morning sunlight that crept in through the blinds and created a striped pattern on my blanket before forcing myself to move forward into this new day and alternate universe for which I was completely and utterly unprepared to face.

Awakenings

A short time after I made my way to the restroom, I crawled back into bed. To my utter surprise my obstetrician stopped by the hospital. He looked like he had seen a ghost and was very jittery and nervous around me. This was very atypical of his ordinarily charismatic personality. Yet another sign that all was not well and would not be so for a very long time, if ever. I asked him what had happened and how my baby was. He continued to give me very vague and non-committal responses.

“It’s too soon to know, only time will tell, these things happen,” he muttered as he looked down at the floor.

I decided to focus on the rapidly fading morning sunlight noticing how the stripes had now all but faded, and all that I was left with was the plain hospital blanket. Before I knew it, my doctor had dashed off as quickly as he had arrived, along with him any hope for a normal delivery and a healthy baby. I hoped that he would return, as I had so many questions, but I never saw him again for my son’s entire 126 day stay in the NICU. He never reached out to my husband, my family or me. That was hugely, I knew that something had gone very wrong and was just too exhausted mentally to feel any emotion other than a numbness. It was as though every one of my thoughts were wrapped in bubble wrap, and I couldn’t feel any one of them to any real degree. The day slipped by so quickly, as I sat and watched the soft sunlight move across the room. Several hours later, a different nurse brought in a wheelchair. I had no idea where we were going, but acquiesced when she gestured to get onto the chair. This nurse was very different, she held my arm and helped me into the chair and then covered me with my no longer striped with sunlight blanket. As she wheeled me, she explained that we were going upstairs to the NICU. Some cruel person had placed me on the labor and delivery floor. There I was with all of the wonderfully joyful mothers either waiting to give birth, or excited to meet their babies shortly after having given birth. I would have much preferred being placed in the morgue rather than face all of these women, their families and the entourage of balloons, flowers and celebrations that ensued the births of their healthy babies. I finally felt something awakened in my formerly scared numb body, mind and soul, it was a complete and utter sense of failure. I felt a surging feeling of grief, dread and doubt well up inside me. I grieved the loss of my pregnancy and the feeling of keeping my baby safely protected. I felt an incredible sense of dread, not knowing what a 25-week gestation birth actually meant to a baby’s body. Finally, there was a huge looming cloud of doubt that hung over me, I could almost feel it physically hang over my head like a cloak of wet velvet. I was too sad to cry, there wasn’t anything left in me to give. I was completely empty, void of all hope and faith in the world. How could this have happened? How was I ever going to survive this? How was I not going to lose my mind? What did the early birth mean to my baby? Why me? Why him? How could I go on?

Baby Bird

When I was wheeled into the NICU, I couldn’t believe my eyes, ears and entire body. Everywhere there was a sense of hushed silence, quiet activity, like a secret maze of operating rooms all connected. There were small bays sectioned off and separated only by curtains. From clear isolettes were wires, monitors, machines, oxygen tanks, etc. I soon realized that you never make eye contact with any of the other parents, people are also in a heightened state of emotion, and are very stressed. It was a world unlike any other that I had ever inhabited, an alternate universe of sorts. Who were all of these people? What were their stories? What had gone so very wrong forthem? Why did this happen to all of us? The nurse pulled up alongside an isolette, introduced me to my son’s primary nurse and then explained that she would be back in a few minutes. I realized that she had measured every word very carefully, and her tone was kind, but not condescending, I looked up at her, not knowing what to say, feel or do. She must have noticed and then suggested to the primary, “Lauren, why don’t we update Mom on her baby?”

“I’ll be back in a little while,” she reassured as she squeezed my arm in affirmation.

I didn’t know where to look, so I just focused on my feet. Sitting upright was extraordinarily difficult, as apparently when your skin doesn’t have time to stretch with your growing baby, having a c-section early on, is incredibly painful. I disregarded burning feeling that stretched across my lower abdomen and then looked at the nurse not knowing what else to do.

“Have you decided on a name for your baby yet?” she asked.

Hmmm, a name. We were thinking about many names prior to our son’s incredibly early entrance into the world. Owen, Miles, Andrew, Will, and so many more. They were names that were hopeful, indicative of a bright future, a world that was open to endless possibilities. Our son was due to be born June 28th, today was March 13th. He had been born 15 weeks too early. So many of the dreams would now need to be revised.

“Not yet. We really still don’t know what’s going on,” I mumbled.

“Well, we’ve nicknamed him ‘The Aviator,’ as you can see, he’s wearing his flying goggles,” she chirped cheerfully.

What in God’s name is she talking about I wondered to myself. I forced myself to look in the isolette. The tiniest little creature was laid flat on his back, arms and legs sprawled to the sides. Attached to his little body were tubes, wires, clips, and adhesive tape attaching more tubes, wires, etc. He was a purple-bluish color and malformed. His chest looked larger than the rest of his body and his head was lopsided and misshapen. He resembled a baby bird that had fallen from his nest too soon. What has happened? How will this baby ever survive? How will I ever manage? I knew that I had a toddler at home and had to return to work in the fall. I didn’t think that I could stand another minute in this room let alone provide all that this child may need. That is working under the assumption that he would survive. The cheerful nurse suggested that I talk with him, as he knew my voice from being in utero. I just couldn’t bring myself to talk with the baby bird-like baby. He didn’t seem real or even mine for that matter. I just continued to look at my feet, hands tightly clasped together partially to hold myself up without cringing with pain, while trying to keep from crying.

“Do you have any questions for me?” the kind nurse patiently asked.

Yes, about a million and none at the very same time I thought to myself. I felt dizzy, numb, nauseous and also incredible pain radiating from my pelvis due to my very fresh c-section.

“No,” I sort of mumbled toward the floor. ‘I just want to go back to my room,” I admitted.

Then she explained that although this most likely wasn’t the best time to discuss the issue of breastfeeding, it was a very important issue to consider. While I did breastfeed my daughter, (actually pumped) I didn’t realize the extent of the superpowers that breast milk had. Amazingly enough, my body would produce the exact antibodies that my son needed to fight germs in the NICU. This is not to say that he wouldn’t get sick, just that he would be far better equipped to fight any infection that he met along his stay there.

It was all so overwhelming that I wanted to leap from the wheelchair and run as far away as fast as possible. I suddenly felt an incredible wave of nausea run through my body.

“I think I’m going to throw up,” I have moaned, half cried to the nurse.

I must have looked pretty sick, because in a matter of just seconds, she whisked me into an elevator that didn’t resemble a typical hospital elevator. She swiped her badge and up, up, up and away we went. It reminded me of the scene from “Charlie and the Chocolate Factory,” I thought perhaps we were going through the glass ceiling of the hospital. Instead, the doors opened and suddenly the heavy wet darkness of the night air singed my nasal passages. I could smell the outside and the mixed scents of the nearby restaurants. I looked up and the darkness was peppered with tiny bright lights. The view of the surrounding city was visible, everything looked like a miniature version of itself, I could see the nearby church spire, some of the surrounding office buildings, rows and rows of the same cookie-cutter houses, it went on for miles. Everything was quieted by the darkness; the hustle and bustle was now muted. In the distance, I could hear the wheeze of the city buses. It’s so peaceful up here, I thought to myself, so safely distanced from the chaos, confusion, and calamity that had become my life.

The nurse just kind of ignored me and allowed me to settle into this new space.

I thought about my life, my family, my plans, everything was different, within such a short time, my entire life just had a tremendous shift into this neither world.  Yet, here safely nestled away, atop all of the madness, the strange newness, the unknown and uncharted waters, was this safe place to hide. Despite the cold, I never wanted to leave.

“It’s beautiful up here,” I remarked.

“Yes, it’s a hidden treasure. It was once a helicopter landing pad for trauma patients, but it’s no longer used” she added.

“How are you feeling?” she asked as she moved towards me. “Your color is returning.”

“I can’t believe this is happening. I don’t feel like myself, it all feels surreal, as though I’m living in some sort of bad dream,” I admitted. “I feel numb, like I can’t breathe.”

“Just breathe. Don’t think about anything else. Look up at the stars,” she suggested.

I looked up and saw the black sky punctuated with millions of little white lights. The stars always had a calming effect on me as a kid. We would lay in the wet grass and look up at the night sky, always hoping to find a shooting star. I thought back to my days in Long Island, I wondered how I got here. Why?

“It’s overwhelming to say the least. Trust me, I know. You may not believe me, but in time, you’ll develop a routine, and eventually this will become your normal. You will find your way through it.” she reassured me.

She allowed me to sit there for a bit longer, until the cold March night eventually found its way through the layers of numbness and I began to shiver. Even this slight movement caused a burning sensation in the fresh wound that ran across my abdomen to throb so much that I thought the pain was audible. I now have two horizontal stripes of honor running across my pelvis, and wasn’t sure why they hadn’t used the first incision. Perhaps they should have just put a zipper in for later use, I thought to myself. It was the first light-hearted thought that I had experienced in 72 hours. I was starting to feel a twinge of myself coming back to the surface.

“Let’s get you inside, your teeth are chattering, ” the kind nurse suggested.

We would go to the rooftop often for the next few nights. With each visit, I would feel a renewed sense of calm and relief from the constant diet of stress, shock and strife that this new life presented. During our nightly talks she told me that she was a mother to multiples (a term that I had never heard before) and had two babies in the NICU. It was after that experience that she decided to go back to school and become a NICU nurse. To this day, she was one of the kindest people I’ve ever met.  She fully understood the complete and utter despair that I felt sitting helplessly by my baby, not being able to protect or help him in anyway. We would talk and sometimes even laugh imagining the state of my house with my husband caring for our two-year-old. The rooftop talks were a huge distraction from that was beyond my understanding, comprehension and control.

I went back to the NICU the next morning, and although I couldn’t hold my son until he was 4 pounds, which would be months from his birth date, I would sit by him, keeping a notebook of all his saturation levels, his blood pressure, his oxygenation levels, bilirubin counts, etc. I became friendly with Evan’s respiratory therapists, his two primary nurses: Lauren and Mylene, who were complete God sends, so different in personality, yet so supportive and wonderful to Evan and me. There were morning rounds that involved teams of people, all pushing their laptop carts into his small bay surrounding his isolette. I would force myself to listen to the good, the bad and everything in between. During those long and very lonely days, I would talk to Evan, wondering if he knew me. The nurses reassured me that incredibly enough babies know their mother’s voices, and can even detect the sound of their footsteps. I wondered if Evan would ever leave, and if so, what he would grow up to be like. I forced myself to focus on living in the here and now, and not to think about the next hour. Ironically, during that time, a friend from work, gave me a present. It was a blue flowered clock that had the saying, “Moment by moment,” on it, the saying was incredibly apropos, as that is how we lived our life during those 126 days.

Fourteen years later, I look back from a very different vantage point. I am no longer immobilized by fear of the unknown, and have been forced to live in ‘now.’ While from time to time, it’s still difficult not to allow my mind to run away with thoughts of worry and concern, I have learned to manage the negative thinking much better. I’ve stopped wishing for a time machine, and for Evan’s early birth to never occur. Instead, I wish that I could send a message to myself and let that version of me know that I had what it takes to move forward into the scary and unknown future. I would reassure myself that although it would take great physical, emotional, financial and spiritual sacrifice, that I could do it.

I am not the same me that I was decades ago. I am a newer version of me, stronger, fierce, and more capable. My sharper edges have softened, my priorities have changed dramatically and believe it or not, I find happiness in the most unexpected places. I completely understand the power of words, how they can heal even the deepest of wounds. I know how small acts of kindness and compassion can help you through even the darkest of days. I am forever grateful for those who have rallied me on through this incredible journey and continue to offer me their love, support, and strength when the going continues to get rough.

This is my story, I hope it helps to ease your pain, worry and fear. If you are reading this, I wish you peace, love, and strength of body, mind and soul. If I’ve learned anything along the way, it’s that there is incredible strength in accepting help from others. Don’t be shy, take the help, remember this is a marathon, not a sprint. Love and care for yourself, put your oxygen mask on first, so that you can help others. Lastly and most importantly, never lose hope. Where there is hope, there’s always a possibility.

Reach out to me if you ever need a friend, I have discovered that if you look in the right places, you are never truly alone.

Peace and love,

Kristen xoxo