I sat there on my bed waiting…I walked over to my bathroom and starred down and the two blue lines in front of me.
This was my second time around finding a positive pregnancy test! We became pregnant with our second child. We were thrilled! The weeks went by slowly of course. We were so anxious to see if we were going to have another girl, or if we would be having a little boy!
I laid on the table while the technician moved around my belly with their Ultrasound. I sat there thinking “ I wonder why they are taking so long this time. It wasn’t this long with Lacie”. “ I’m going go get some assistance.” I instantly knew something was wrong. Both technicians begin moving around the wand and looking close at the screen. They kept looking at his heart for some odd reason. “Well you’re having a boy!” We were so excited! Of course we called everyone right away to tell them the news.
My mom and I had a cleaning business together at the time. I sat there at their bar listening to a voice mail on my phone. “ We found a large mass inside of your sons heart. We need to send you to a better hospital for more testing”. Sheer panic of course overcame me. Obviously my husbands response was “I’m sure they are just wanting to be extra cautious.” I knew they weren’t. How could you see a huge tumor? It would be more likely to see something missing, not an extra part! Of course I’m no brainiac.
We arrived to our appointment in the big city and nervously waited to be called by a genetic specialist. We gave them all of our family health history. Next was an ECHO which is an ultrasound of the baby’s heart to check blood flow and growth of the mass (tumor/tuber). The tech sat there quietly but answered my question. “Is there really a tumor in there?” “Yes, there definitely is a mass there.” As Dina pointed to the tumor which looked like a heart beating. Nope! The tumor was so big it looked like the heart.
After the ECHO, we sat in a cold room with little space. Now that a tumor was confirmed, I became numb. I didn’t know how to feel. The doctor came in and explained that the tumor was called a Rhabdomyoma Tumor. Our son would likely have Tuberous Sclerosis. The tumor would continue to grow until birth. Little did I know how fast it would grow. Tuberous sclerosis became my last thought of the day. Our daily horror was “I wonder how big the tumor has gotten today”. We had to travel 3 hours every 2 weeks for regular ECHO’s.
At 27 weeks, I noticed Conner started moving less and less. I came to my appointment and was told his tumor was so big that his heart would soon stop beating. And then he would die. I sat at the end of the patient table. Starring at the floor, while the doctor explained everything to my husband and mom. I don’t remember much of what he said. He said “Keep track of the baby’s kicks”. That is all I remember. I couldn’t open my mouth. My teeth were clenched together. I avoided eye contact with my family.
We pulled into a gas station. I sat there watching my mom walking in to pay. I just completely melted into a puddle of tears. I was so numb. I felt like I was living a nightmare. I knew I would be waking up soon. Most of my pregnancy was in my bed. I didn’t want to be with my friends. The sadness overwhelmed me. I forgot who I really was. How could I ever be happy again? His movement became rare.
At 30 weeks, I noticed no movement at all. I called the on call nurse. She advised me to quickly head to the ER. My OB met me there. She told me his heart rate was so slow that it was at the point of brain damage. She contacted the flight team, and they came to fly me to the city. I was put on a stretcher and strapped to a fixed wing plane. My husband sat in the front with the pilot.
I laid on my side for 45 minutes while the flight nurses checked Conners rate every 5 minutes. We finally arrived safely and was immediately admitted. A million people came into my room and ran tests. They told me they would most likely take him out that night. We were terrified. His chance of survival was so slim already being premature but having an enlarged heart with hardly any blood flow. We prayed and prayed…
The doctor finally came and decided that Conners chance at survival was the same if they took him out or left him in. It was decided they would leave him in. They scheduled an induce date at 39 weeks but told me that he would pass away in the next couple of days. I was given info on funeral arrangements. I wrote out my plan. I forced myself to a few gatherings to distract myself but suffered silently.
Somehow he survived until 39 weeks. We came in, and everyone was surprised. They began inducing me. I was somewhat anxious to meet my son, even if it would be only a few moments. I smiled for pictures. I kept quiet most of the time. I didn’t know how to feel.
They rushed and called on their emergency pager for an emergency c-section. His heart was dropping too low. They rushed me out before I could say bye to my family. They ran me down the hall, and pushed my bed through double doors. They laid me on a table with a huge light above me. I shook so much I could hear metal hitting metal. I was scared out of my mind. They put me to sleep and that was it…everything went black.