Mommy Needs A Minute

The memories of my journey into motherhood are often something that pulls at my heart. When I hear my friends and relatives recounting their pregnancy: they remember how excited they were, the glowing skin and luscious hair. They remember the fear of the unknown, but also the confidence that everything would be alright, and how smoothly the labor and delivery went.

My pregnancy was very different, but my worries began before that. At the age of twenty, my battle with systemic lupus erythematosus was so fresh. I had struggled with it all my life, but had finally attained a diagnosis at age eighteen after six years of bouncing around from doctor’s office to doctor’s office. My parents thought I was just trying to get out of school.

I was two years into treatment when I sat in my rheumatologist’s office and they shared with me the awful news: due to an antibody that came as a result of me having lupus, when I finally would make the decision to have children, I had a 93-percent chance of miscarriage in the first trimester. That, coupled with the effects that hormone changes would have on my immune system, and my immune system’s rampant insistence on attacking my body, there was very little chance of my ability to successfully carry a baby to viability, much less to term. Secondary to that was the risk to my health, with the possibility of cancer or death looming over my head. I still feel the prickle in my eyes whenever I remember the coldness of the room in that moment.

My face fell and my entire universe came crashing down. All my life, I had wanted to be so many things, but no matter what career I might have wanted, I knew I would always want to choose being a mother and wife first.

At the age of twenty-three, as luck would have it, I fell deeply in love with the man who is now my husband (Hubby), and in preparing him for the worst eventuality, I explained to him the doctor’s prognosis. My husband, ever the faithful one, promised to love and cherish me no matter what, and to have faith that one day we would have a family together, and he would stand by me.

Because my husband had accepted a job offer in the state of Washington which would have offered us better benefits than if we were to remain in our hometown in Nevada, we promised to take care and try to wait for one year to have a child. This way we could take our time and carefully pick out the specialists to whom I would entrust my life and the life of my child. During our move to Washington in July of 2017, I began to experience the severe cramping in my pelvis that I know to be similar with my period, but I never bled. After my first missed period in August of 2017, and after a joke made by my mom that I might be pregnant, I took a pregnancy test.

When I first saw those two blue lines, I was both overjoyed and dismayed. I had known that I would be worried when I got pregnant, but I hadn’t expected to fear for the baby’s life so dismally in the first seconds. Hubby and I were still trying to put our newlywed life together. I was still looking for a job that could accommodate my disability and we were still living in an Air BNB while we waited for our apartment to be ready. Money was tight with the move, and we were expecting to move again in a few days. My hands cupped my stomach, and I felt the warmth of that tiny life inside me and cried, knowing I would give everything to preserve him. No matter what it took. No matter the personal cost to myself.

After finding out at six weeks gestation, for the next eighteen weeks I was inundated with doctor’s appointments with my obstetrician, maternal-fetal medicine doctor, and rheumatologists going over every possible scenario. I was diagnosed with a bicornuate uterus (a uterus that is shaped like bunny ears) which would limit the space that my son would have to grow in my belly, and that was dangerous itself. The antibodies in my blood could give me a blood clot which would threaten my life or my son’s if it traveled. Another antibody could travel through the placenta and stop his heart. Never mind the risk that my having lupus posed to my baby, which I had already known about.

It was at this point that the doctors suggested that they might not be able to save my pregnancy, and it may be better for the baby, and for my safety, if my pregnancy came to an end.

This was unthinkable to me.

My fear came to a head as, after an examination at 21 weeks, the maternal-fetal medicine doctor told me that my cervix was incompetent, and I was at risk of giving birth before “Peanut” had reached viability. The doctor would have to stitch my cervix closed if I had any hope of keeping my son until I reached 24 weeks. On the phone with my family and packing for an overnight hospital stay, I remember the frozen feeling in my face and body, and how my hands felt so numb as I recounted that the greatest risk of the cervical cerclage was that my surgeon could potentially nick the membrane of the fetal sac, causing my water to break and me to go into premature labor, in which case I would lose everything I had fought so hard to protect. While I am so grateful that the procedure was completed without complications, this course of treatment also proved unreliable, and my cervix started dilating again at 22 weeks pregnant.

“Just two more weeks, Peanut. Please, just stay in there for two more weeks,” I begged my son under my breath as I packed for yet another hospital stay. I was to remain bedridden for the remainder of my pregnancy, but all of that time in bed only gave me more time to think of everything that was going wrong, no matter how much I prayed and pleaded with God to save my son’s life. Unable to eat due to nausea from the pregnancy and medication, and unable to do anything but will my body to keep him alive for as long as possible, I fell into ante-natal depression.

In December of 2017, after what seemed like forever in the hospital, my cervix had ceased contractions at 24 weeks, and I was released to go home to Hubby. I felt so excited to go grocery shopping with him, even if it meant riding in a scooter. Wrapped in his arms and finally drifting off to sleep, I later felt a hot, wet fluid flow from between my legs. Startling and cursing, I woke my husband and informed him that my water broke. After affirming that I had not in fact accidently wet myself, I waddled into the car and my husband drove at break-neck speed to the hospital.

Sure enough, I was beginning to go into labor and was given medication to stop my contractions, however the hospital we were at was not fully equipped to care for a child as premature as mine and I would have to be transferred from Legacy Salmon Creek in Vancouver, WA to Legacy Emanuel in Portland, OR. My contractions began picking up again on the ambulance ride between hospitals, and I remember feeling horribly as if I was so stressed I was going to be sick.

During my examination on my arrival in Oregon, it was found that Peanut’s foot had ripped through the cervical cerclage and was now in the birth canal. Hubby and I had never seen so many doctors move so fast. After making him swear to protect our baby, I was taken into the surgical theater and quickly anesthetized for an emergency caesarian section. Upon the removal of my son, I had begun hemorrhaging and Peanut was taken to the NICU for life-saving treatment. It was the first time I had ever been separated from him. My recovery wasn’t bad, but Peanut had a long battle ahead of him, and as his mother, I could do nothing for him but to entrust his life to the medical professionals at the hospital.

By January, Peanut’s body was fighting to stay alive, but beginning to tire. I thought that the greatest pain I would ever have to face was not being able to see him. But life is a cruel teacher. I would later learn that the greatest pain is getting that phone call from his nurse practitioner telling me that he is struggling to breathe. He wasn’t inhaling enough oxygen to saturate his blood and oxygenate his brain, and every time he recovered he would tire again. Blood transfusions were needed and the air seemed to get sucked out of my lungs as I thought of my only child fighting for his life.

By February, Peanut was improving and he was learning to breathe on his own and suckle milk from a bottle, but the doctors were ever vigilant about keeping us optimistic but cautious about the risk of physical, cognitive and neurological impairments. At this point, no matter what they said, I would spend hours gazing at his beautiful eyes and tiny nose, finding perfection everywhere I looked. We were so blessed as it is that he was in perfect health in at least one of those aspects.

As he grew older, he would start to display the signs of neurodivergence. Certain sounds, like the buzzing of the water dispenser and the sizzle of the frying pan, seemed to unnerve and upset him. Textures seemed to unsettle him, and he struggled with the stimulation that comes with playing with or around other children. He had difficulty focusing his attention long enough to grasp certain concepts and would instead become easily frustrated with activities and lash out, displaying non-verbal and self-injurious behavior. This began our family’s long journey toward making an active effort to understand him in this new situation.

When I think of giving birth to him, my heart aches from missing out on the joy of an expectant mother, and all of the pain that my family went through. I don’t remember having luscious hair or glowing skin. But I do remember the miracle of his birth. My beautiful boy was released from the hospital on March 9, 2018. He is thriving physically and grows a little more every day. He paints my world with his smile and has the most innocent and forgiving spirit of any child I have ever met, and I hope I never take for granted how lucky I am to have him here.

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