Saturday, April 22, 2017

The new plan;

We have been consumed with appointments and news throughout the last few weeks. After Halifax in Daytona found our daughters heart defect, our pregnancy went from normal to high risk. Dr. Cortez transferred most of my care to Winnie Palmer in Orlando where we have been receiving ultrasounds and preparing for a high-risk birth. Today, we had our first fetal-echo appointment across the street at Arnold Palmer. Arnold Palmer is basically attached to Winnie and just as big, beautiful and overwhelming.

I remember when I use to get excited for our appointments, and now I can barely tolerate the continued undesirable news these appointments bring. Today, our fetal-echo confirmed our daughters heart defect. "Complete Atrioventricular Canal Defect" "Heart Disease" "Congenital Heart Defect", genetic related, down-syndrome and eventually everything the doctor was saying became background noise. 

There's no way to explain how much my heart hurts. I have found myself unable to accept this as our new lives to be. Are we strong enough to withstand the storm this will cause? Will our baby need open heart surgery right away? Will I be able to care for a baby with so many medical needs? I barely understand the medical terms that were explained today. The emotions are overwhelming and every ride back from Orlando is silent as we both are finding our own ways to digest the news. 

Nikki has overwhelmed herself in projects, I have began reading and writing more frequently. I think the hardest part of this all is the ignorance. We are unaware of what to expect and while we are trying to move forward with our hopes and dreams, it's difficult for those around us to understand our mindset and this has created a barrier that I'm not sure will ever fall. 

Tuesday, April 18, 2017

Entering the unknown

It's been weeks since we found out about the possibility of McKenzie having down syndromeWe have been quietly dealing with our thoughts and attempting to understand what exactly is happening. We have had the options to have an amniocentesis done, however it entailed risks we aren't willing to take. The week before our due anatomy scan we were sent to Halifax Hospital to meet with specialists to determine measurements and document any other markers that indicate the possibility of Down Syndrome

The ultrasound was the first one we had since the doctor called. It was beautiful, she moves so much! She’s so active! Her nasal bone is perfect, her arms, legs, toes, fingers, weight, body is measuring perfect. Maybe this was all just a big false; then the doctor came in. While he reviewed all of her perfect measurement’s and results, he also announced the one image imperfectionher heart. I instantly became numb.  

After several trips to the doctors and multiple syringes of drawn blood, we had to wait. It was second nature to believe these tests were wrong; after everything we had done to get here; how could this be happening? Four long, dreadful days went by and the phone rang with the results; The blood work determined there is a 99.9 percent chance your child will be born with Down syndrome.

After hearing the results of the blood work we were left in a pool of emotions. When we got pregnant the first thing we thought was what the gender would be, what the name would be and how excited we were to meet him or her. When we got pregnant we instantly began making plans, what would we involve her in? What sports would she play, if any? Would she be smart like Nikki or stubborn like me? Would she be funny like her grandpa's or loving like her grandma's? We had so many expectations for what her life would be and found ourselves grieving this ideal life we had so anxiously planned.

A cycle of negativity quickly began;  “What could I have done to prevent this?”, “What did we do wrong?”, “How am I going to manage this change?” On top of dealing with these questions of, “Why me, why now?” comes shame. Not shame of the child, but shame of the emotions we were feeling.