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.

Thursday, March 9, 2017

22 Weeks Later

It's been a while since I've posted, the last few months have turned into the biggest rollercoaster of my life. I remember the day I saw the "positive" on my clear blue digital pregnancy test, It was unbelievable, literally. We tried so many times and failed so many times that we couldn't wrap our heads around the fact it may actually be real this time; when the ultrasound tech. told us we were having a little girl, I felt like it all became so real; I'm pregnant with our daughter, Mckenzie.

Throughout the past 22 weeks, we've seen Mckenzie grow from a sac to a beautiful little baby whose often moving around in my belly. Our lives have completely changed, our house is ready for her arrival in just four short months and we patiently went to every doctors appointment, listened to every piece of advice and did every single thing correctly, or so we thought.

When the doctor called and told me my bloodwork came back positive for the possibility of down syndrome my heart completely stopped. I hate to be so honest; but I wasn't even sure exactly what down syndrome was. I had to tell my wife who was sleeping, expecting nothing of the sort and then we had to continue our day onto work with confusion, hope and silently beginning to struggle. Weeks passed as we began receiving calls from specialist to set up appointments, ultrasounds, etc.

Two weeks later we arrived at the hospital for an ultrasound, I was nervous beyond words but excited to finally see where we would first meet our daughter one day; or so I thought. The ultrasound tech showed us our daughter for a solid thirty minutes or more, measuring every inch of her stubborn little body as she flipped around and hid her face. The doctor came in and went over the findings, she's perfect! Every inch of her measured out perfectly; every inch but her heart. I suddenly felt like it was impossible to retain anything the doctor spilled out, so many options, so many questions and all I wanted to do was rewind the clock to hearing how perfect she was. Within weeks we went for more bloodwork and within seven days the doctor called to confirm our screening was 99% positive for down syndrome.

There are no words to ever describe how it feels when the doctor calls you and tells you, your daughter not only may have a hole in her heart but she very well may be born with down syndrome and you are now being sent to deliver towns away in a bigger, more equipped hospital. I've never felt so defeated in my entire life; hopeless, confused, angry, sad and beyond everything else; guilty.

It was one of the hardest things I've ever had to do, walk in and tell Nikki that our daughter was up against a great battle and there wasn't anything at this point that we could do. For the first time ever, we broke. We didn't know what to say to each other, to anyone else. A million thoughts raced through our minds, we refused to believe this was happening and even today, not even a week later I still find it hard to wrap my head around.

Over the next month, we have several appointments to check on our baby, several appointments to make it through to try and understand what's happening, what's going to happen and face the music of reality. Becoming pregnant was what I thought was the greatest struggle of my life, now as my life has taken a complete 360 degree turn around the sharpest corner of my life, I admit becoming pregnant wasn't the struggle, becoming a mom and trying to make the best decisions we can has been the struggle of all struggles.

Friday, November 11, 2016

From the other side;


When we embarked on our journey to start a family, I never considered how exactly I’d feel once it finally happened, if it ever did. During the three year process of trying to conceive, there were many hopeful weeks turned into many hopeless months. When we were fortunate enough to find Dr.Cortez and begin the process of fertility treatments and IUI; I found it extremely difficult to believe it was actually happening and could actually be a possibility. The hormones were overwhelming me and I truly felt that there was only so much more I could handle before throwing in the towel. Sometimes, in the mist of my happiness I sit and think about the entire process of becoming pregnant and how much we really have endured along the way. I feel so much for those who aren’t lucky enough to get their positive or for those who are just beginning their journey. It’s such a long, confusing, unfair road but if you’re ever fortunate enough; it’s the most rewarding journey.

Today, was our first appointment with the doctor since we got our positive pregnancy test and bloodwork; We got there a little early, still exhausted from the lack of sleep. As I sat in the waiting room, I recalled the first time we visited that office, I also recalled never truly believing I’d go there like so many other women, pregnant. When the lady finally called my name, we followed her back past the regular doctor rooms to a room I had learned about quickly with the fertility treatments; I was getting an ultrasound! I wanted to jump out of my skin with excitement at the possibility of seeing our little baby’s new home for the next nine months.

The ultrasound showed exactly that; our babies little sac, as healthy as it could be for 5 weeks and 3 days pregnant. The ultrasound was amazing for us both; I looked over as Nikki watched the screen and felt a warmness overwhelm my entire being; we were going to be parents, we had finally made it, we did it together. The ultrasound lady was so sweet and explained every bit of it to us both – the fertility drugs gave me multiple large cysts on my ovary but we were ensured it would not cause harm to the baby. We talked to Dr.Cortez briefly and scheduled an appointment for two weeks, when I’m 8 weeks pregnant to confirm growth and a heartbeat.

We walked out of the big brown double doors to the lobby, holding our babies ultrasound picture closely. I had never felt so proud, so successful, so fulfilled. On the way home, my insurance company called and told me they were dropping my doctor – however, would continue my coverage for 6 weeks post my due date; that was icing on the cake – I thought. As we pulled into our complex, we decided to check the mail as it’s the beginning of the month and bills are being sent. I opened the mail and found a onesie I had ordered several days ago and two refund checks from our insurance company! I felt as the day could literally not get any better!

Not bad for our first doctor’s appointment – I’d do the entire process over and over again if it meant we would end up with this amazing experience and baby on the way. I can’t lie, the nerves from my 8 week ultrasound are more severe than ever, but with a lot of praying and caring for myself – I’m keeping faith. That’s the thing, you have to keep faith – for anyone beginning this journey, there is no reassuring thing I can say, but I can offer advice to keep going, keep trying and keep giving all the faith you have.


Wednesday, November 9, 2016

The 5th Week


The last week in a half has been one from a dream; I’m pregnant, I’m pregnant! I just can’t seem to say it enough. We have our first appointment Friday – We are beyond excited. While it’s too soon for an ultrasound, we will get our chart established and hopefully have many answers to our many questions.

Becoming pregnant has been one of the best things I’ve ever experienced, there isn’t one mood swing, hot flash or nightly nausea session I would give up. I have dreamed and prayed for this moment for what feels like a lifetime and feel beyond excited and so very terrified all at once. Of course, terrified of miscarrying, terrified of something going wrong but we are staying positive and are surrounded by nothing but support and love, with that we can go nowhere but up.

We went to the baby store the other day and got a pregnancy journal; it’s been so much fun updating it and entering all our information and desires into it. We created registries and have so much planned already, who needs 9 months?

 I will admit, while this process has become a dream come true – it’s one very overwhelming dream. I suppose we forgot how much others would find the desire to be so involved, while I understand their excitement; we are selfishly wanting to hold as much of this process to ourselves because it’s our first positive, our first time, and our first baby. I’m sure this is simply a part of the process and so I am embracing it to the best of my ability.

We have decided on names, colors for both genders, how we want the baby room and what we need to get done prior to July. Nikki has been amazing and she is beyond excited – I hope she continues to feel just as included as possible, it’s difficult in a gay marriage – my family is beyond ecstatic and trying to be involved and it’s so important to me to ensure her and her family feel just as included. We’ve found the adoption process for when baby is born and truly cannot wait to meet baby boy Julian or baby girl Mckenzie.