Monday, April 3, 2017

NICU

It's been a little over a month since we were told our daughter would be born with Down Syndrome and a heart defect. Little miss Kenzie loves messing with the ultrasound techs. She dances, hides her face, turns and gives us so many reasons to laugh already.

Today the doctor confirmed her heart defect and explained what birth and her surgery would consist of. The information was repetitive, overwhelming but informative. We toured the NICU and met with some great people who will work by our side through out this process. The appointments never get easier, the information never becomes easier to digest and regardless of which doctor we're sitting in front of, I still find myself completely confused and taken back by the information we're told.

Nikki and I have come to terms with the down syndrome diagnosis, we are beyond concerned with her heart surgery to come. Mckenzie is scheduled to be born on July 12th, her heart surgery will follow 3-6 months after and we will do whatever is required to give her the best possible life we can. I don't doubt our ability to love her for everything and anything she is.

The Process


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 we finally broke down. I cried on the bathroom floor for what felt like hours, the baby we dreamt to life 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 entire night building things and keeping herself 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, then we attended the genetic counseling appointment and decided there would be no more testing, or bloodwork for any further determinations – We would wait until she was born and handle it as it comes. The only concern at this point is her heart defect.

Of course this news has left us 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.

Entering the unknown

One week before our anatomy scan we were sent to Halifax Hospital to meet with a specialist to determine her measurements and other markers they search for when making a Down syndrome diagnosis.

The ultrasound 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 imperfection – her heart. Every word I heard from that point was complete haze.


Eventually our anatomy scan appointment came – but it wouldn’t be anything except more bloodwork. We continued to believe in false positives, we continued to believe everything would be just fine – I think we both were denying this could be a possibility, after all we did it all right and we had faith.

Four long, dreadful days went by and the phone rang with the results;

“The bloodwork determined there is a 99.9 percent chance your child will be born with Down syndrome.”


We believe in faith; I think.

      Throughout our journey to become pregnant, we learned a lot about faith. While we’ve prayed for this time in our lives, we certainly did not expect it to become to chaotic – not yet at least.


When the 16th week rolled around, Nikki and I rushed to find out the gender. Nikki thought the baby was a boy and at first; I did too! But, as time went on we quickly changed our minds and sure enough, it turns out to be a girl! As soon as we found out, we rushed to the store to buy a little sign and some pink converse shoes – we wanted to tell the world!
Our home quickly filled with projects and pink everything. Nikki found herself building wall sculptures, toy boxes, shelves, and anything/everything else we could think of. We couldn’t wait for our anatomy scan to see her measurements.

 Dr. Cortez called two weeks before her anatomy scan to go over my bloodwork results. I don’t recall most of the call, the only words I heard were “down syndrome” and “specialist”. I am ashamed to admit, I had no idea what Down syndrome really was – I had never had any reason to think about it nor did I know anyone who was diagnosed with it. Nikki brushed it off and said it’d be ok, we quickly reverted to assuming the test was a false positive and everything would be just fine.

There are truly no words that can express the shock when we heard it, the fear and the honest denial. We’ve prayed for this pregnancy, we did it all right, we had faith.