"Not Compatible with life "Part 2
It had been over a week since we got the news of our genetic screening coming back positive for Trisomy 18. Although we had questions, we had no answers. And although a we went through a number of emotions, we still remained hopeful.
Yesterday (August 15), We had our full day of scheduled appointments.
I was oddly, very calm going into everything. I think I was just so ready to have answers.
Our first appointment was meeting with the genetic counselor. His job was to explain our first test results, and answer any questions that we may have. He did a really good job of being informative. And he was hopeful this was just a fluke. The blood test wasn't THAT accurate and we had already made it this far into pregnancy. He would better prepare us for what was to come if the findings were confirmed.
We then went into an hour long ultrasound. Lee sat at top of the bed, and held my hand.
My eyes filled with tears seeing my baby again, he was strong, and moving around in there. He was perfect.
But it's true, a mother just knows when something isn't right.
I watched the tech take many photos. I knew what we were looking for. I could see the cysts were still there. But I watched my baby's hands. And prayed and prayed harder that they would open and give me a wave. But they never did.
After what seemed like the longest hour, the tech went to discuss with the doctor.
They came back together for one more look at the baby.
He asked to see the hands,feet, and heart again.
He asked me questions like "Have you been able to feel baby move".
He told the tech to leave everything as is because we were going to perform the amnio test. But he wanted to discuss his findings first.
I knew this wasn't going to be good.
We sat around a circle table in a quiet ,empty room.
I clenched Lee's hand as the doctor proceeded to tell his observations.
Our sweet boy now had more than one marker for T18.
He was measuring 2, almost 3 weeks smaller, and at this point in pregnancy, that is rare.
His hands were clenched and feet were clubbed.
His head was small.
His umbilical cord only had 2 vessels instead of three.
And his heart could possibly have holes in it.
The heart condition and umbilical cord were something he could live with. But the other markers all put together make for life-threatening condition.
The doctor suspicions confirmed what we deep down already knew.
We were now the 1 in 5000.
We were now a statistic.
It is rare for T18 babies to make it to birth, and even more rare for them to survive birth.
We were going to have a baby, but now, they're preparing us to have an angel.
I felt the lump in my throat grow bigger as my husband squeezed my hand harder.
There was just something about the softness in my doctor's eyes as he repeatedly said "I am so sorry".
Lee pulled me into him as I cried and gasped for air. Then I turned into my mom and cried with her. I tried to be tough, and strong. But I couldn't hold back the flood gates that day. The sadness just hit me. My poor baby boy has to go through this. I was so sad at the thought of losing this baby who I could feel move inside me daily. I was and still am, grieving the loss of our future child.
We decided to proceed with the amnio to hear the definite "yes". I didn't feel a thing. My whole body was numb from the immense pain and sadness I was feeling. I closed my eyes and remained still for the procedure, all the while my husband was whispering how brave and strong I was. I silently let tears roll down my face.
We were then released and told we'd have preliminary results in 2 business days, and full results in about a week.
Someone would be calling to schedule our next appointments. This time we would meet again with our genetic counselor and also the NICU doctors who would talk about what to expect if baby makes it to birth.
We desperately need/want a miracle.
I know we will have many,many hard days ahead of us. We will shed more tears. But it the end, we will be okay.
If you see me teary eyed, know that I will be okay. And if you see me happy or smiling, please know that is okay too.
And know all of the comments, messages, and texts are helpful and appreciated. They haven't gone unnoticed. And we are so grateful for all the love and support- it has strengthened us.
We will continuing our journey. I am not due until November, so who knows how long this journey will be. We hope you will bare with us, and continue saying those prayers, because we still need them.