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.

We decided to announce it to our family and friends and have been overwhelmed with encouraging words and support and some shock. The hardest part is not having anyone close to us understand and when we see our friend's beautiful healthy, perfect children - it's hard not to feel resentment. It's hard not to get angry which is instantly followed by guilt for feeling these emotions. I don't know what our baby is going to be, but I know I will love her endlessly. - that should be a good enough plan, right?

Wednesday, April 19, 2017

Diagnosis Emotions

There is no easy way to enter the process of hearing your baby will be born with Down syndrome and a heart defect – there is no word to explain the grief, shock, anger or feeling of isolation. Soon, we found ourselves booked with appointments; meeting with doctors, specialist and genetic teams to gain a better understanding and view of her heart. The overload of information was overwhelming, in those first few weeks, after hearing statistics, talking to doctors and reading about it everywhere, we thought we knew what it all meant but to be honest, we were completely and utterly devastated.
It wasn’t until the third appointment at Winnie Palmer that we finally broke down. I cried on the bathroom floor for what felt like hours, the baby we imagined would be deprived and live a life shorter then what she deserved. The days began to pass and I found comfort in sleeping them away while Nikki spent the nights building things and keeping her mind completely busy.
We were shocked, we became devastated. We were angry, we became resentful. We refused to open her bedroom door, we felt guilty. There was a process of grief as we had to let go of the image we created for our daughter and accept what would be. We began to mourn and let go of the expectations we had developed for her.
Weeks went by before we were able to sit and talk about it, we were overwhelmed. We are still adjusting and find we may still be showing signs of shock, but we have learned from other parents that we will move away from this time of uncertainty to a place of excitement and amazement. We have a lot to learn in the next few months about Down syndrome. We have already started to research and are set up to deliver in one of the best hospitals around. Some of the most important things we've learned are that each person with Down syndrome is a unique individual, and that with recent advances in medicine, education and acceptance, our daughter will live a rich and rewarding life, and will enrich ours as well. While we never expected this to happen it opened our eyes and made us begin to appreciate the health that she does have and the gift of life.
The truth is, we are keeping faith that this will be ok. We spent years waiting for this miracle and will no longer allow a diagnosis to take away the pure joy of our daughter; Mckenzie.

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 option to have an amniocentesis done, however it entails 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. She 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 and sick. 

After several trips to the doctors and multiple blood-work appointments, 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.

What a year it's been, so far.