Thursday, August 10, 2017

Heart Moms

We knew McKenzie had a heart condition that is common in babies with Down syndrome but we never imagined it would change our lives forever. Congenital Heart Defect (CHD) affects nearly one of every hundred babies and is the most common cause of infant death. Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive. McKenzie has spent more time in the ICU then she has at home, some days we find it incredibly difficult to leave her bedside and other days we force ourselves to get some food and fresh air. Today, we found ourselves standing in an empty room feeling complete and utter helplessness as they carried our baby away. She was only gone for an hour, but that hour that felt like eternity. 

The doctor who performed her surgery were reassuring, they made sure to send photos throughout the procedure; this was both a blessing and a curse. We tried to remind ourselves the benefits of this surgery and the risks if she didn’t have it, but it didn’t make it any easier to know your one-month old was having surgery and this would only be the beginning. CHD is a life-long risk of health problems, there is no “cure” even when there are no more procedures, there will always be appointments, scars, risks of issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure and sudden cardiac arrest or strokes.

While we waited for McKenzie to return from surgery, I began to realize how incredibly different our lives were becoming and regardless of how much we explain, those around us could never understand. Becoming a heart mom wasn’t something we planned and it certainly has left us raw and exposed with emotions. We have seen things we never imagined, learned things we never knew existed and gained strength we never knew we had.

McKenzie made us heart moms and there is no surgery too big or piece of medical equipment to complex that could ever stop us from being completely proud of how strong our little girl is and how strong she has made us.

GO-FUND-ME Account;

Monday, August 7, 2017

Heart Failure

Heart Failure”; two words no mother ever wants to hear. We knew McKenzie would eventually have heart surgery when she was strong enough around four to six months; we also knew we would need to work hard on ensuring she stayed healthy and gained weight in the meantime. Two weeks after she came home she started to sound congested, so I took her to the hospital to be safe. The doctor checked McKenzie and documented all her health conditions, she then turned to me and explained color of her skin, low lungs, and low weight.  I stood by McKenzie’s bedside as the doctor finished explaining her findings, I expected a list of things to do and a check out to follow.

When the doctor turned and said she was sending us back to Orlando because McKenzie was in the beginning stages of heart failure, I felt my heart drop. As Nikki rushed home to pack a bag, McKenzie and I were taken by ambulance to Arnold Palmer. A million things raced through my head during that ride; having a child with a life-threatening condition changes you.

The doctors at Arnold Palmer began giving her a dietetic to flush her lungs. While they explained the processes to come. I couldn’t believe after just two weeks from leaving the last round of being in the ICU that we were back.We expected complications, we expected hospital stays and knew it wouldn’t be easy but having our baby back in the ICU so soon was like a slap in the face.

The stress and exhaustion causes emotional ups and downs. Sleeping in hospital chairs, skipping meals and showers, crying from fear and exhaustion, constantly on the verge of losing our mind. The doctors decided since McKenzie is unable to gain weight due to her heart condition, she will have a tube placed in her stomach until she is roughly a year old. While we know and understand this will help her gain weight and strength; at what point are we supposed to accept that yet another aspect of the life we imagined for her has changed. 

As I sit in another small room cramped with hospital equipment, I listen to the cries of other children, the constant beeping of multiple machines throughout the hall, the constant beeping of machines throughout our daughter’s room. I can’t help but become discourage and disconnected as I watch the doctors and nurses decide what’s best for our daughter; as I sit helplessly asking questions and voicing concerns.

Today, I relived the pain of saying goodbye to my wife as she had to return to work. Today, I relived the pain of feeling torn between wanting to leave with Nikki and not being able to leave our baby. I watched as she walked away with tears in her eyes, I felt my heart in my throat as I continued to talk with nurses and care for McKenzie. Once the room was quiet again, I broke. The truth is; being a mom teaches you strengths you didn’t know you had and fears you didn’t know existed. Being a wife and a mom teaches you there is only one way to get through; keep going.

While we are still in the cardiovascular ICU at Arnold Palmer, McKenzie’s doctors have created a plan to get her where she needs to be. McKenzie continues to be strong and her doctors continue to make moves forward with her health; Nikki and I will continue to survive through what feels like the worst possible time of our lives today and what will be a distant memory of life in the ICU; another day.  

Monday, July 31, 2017

Bringing McKenzie home

As I recovered on the 10th floor, McKenzie was admitted in the ICU on the third floor. I never imagined the amount of determination I would develop to ensure I was on my feet as soon as possible; by the third day I was discharged. McKenzie spent ten days in the ICU and NICU, the doctors and nurses were amazing with us and her, but that didn't change the pit of my stomach from turning into knots. I never imagined the amount of love I would develop over the next several days as we very helplessly waited for any news on McKenzie's health or discharge possibilities. Eventually, Nikki had to return to work; we thought our journey had been tough thus far - we never imagined the amount of emotions we were now dealing with. 

Eventually machine after machine were disconnected; every day a new doctor or therapist would meet with us and overload our minds with information - McKenzie no doubt had the best of the best looking out for her and her future and while we were completely exhausted and overloaded with information - we were beyond thankful for those involved in the care for McKenzie. On Sunday, July 16th McKenzie was discharged. 

Bringing McKenzie home was a dream come true; she was sleeping so peacefully the entire ride and proved to be just as perfect as we had always imagined. We've been home for three weeks today and she continues to amaze us in so many ways. McKenzie has opened our eyes to an entire new world- a world full of endless opportunities and love like none other. While we have a long, busy road ahead for the health of McKenzie - we will continue to keep our faith that not only her development progresses well but her heart surgery is successful and her recovery is quick. 
It feels like just yesterday we received the down syndrome diagnosis, foolishly we allowed it to completely alter our lives for months. When we saw McKenzie, we saw our daughter; we didn't see down syndrome or heart defects - we saw our beautiful, god given angel. It was in this moment we realized the meaning behind our journey wasn't to cause us struggle but to create an undeniable strength full of acceptance, patience and above all else; love.

Sunday, July 16, 2017

The world of ICU and NICU's

For all the things my hands have held, the best by far is you.

When I was pregnant we toured the ICU and NICU, we wanted to have as much knowledge as we could to prepare for her stay; but the truth is – there was no amount of planning or knowledge that could have prepared us for this. Seeing our babies little body hooked up to IV lines, Oxygen tubes and monitors; watching nurses come and go to check her weight, vitals and heart; it’s the most helpless emotion a mother could ever imagine.

As my recovery from my C-Section began, I found myself rushing the process to have as many visits with McKenzie as possible; they said I needed to walk – so I walked. They said I needed to go off IV’s – so I went off IV’s. I found strength I never knew I had and if it wasn’t for Nikki standing by my side and supporting my every move, I don’t know how I would have or could have ever gone through these last few days.

As new moms, we assumed there would be an adjustment period; regardless of how badly we waited for this, we would both still need to adjust ourselves to becoming moms. When we imagined getting to know our baby, we didn’t exactly picture an infant tangled up in tubes, wires and machines that constantly beeped. Overwhelming love, fear, anger, detachment, and helplessness are just some of the emotions that flooded my heart; I thought I would get through this without a problem, I figured it would only be a few days; but those few days turned into almost two weeks and eventually Nikki had to return to work leaving McKenzie and I in Orlando. I sat by her crib almost all day for three days straight, I wasn’t learning how to care for a newborn like most moms a week after giving birth – I was watching as nurses and doctors entered and left the room throughout the day and night, I watched as she cried, unable to do anything but wait for a nurse to come

The truth is, there are millions of families that go through this (and much worse) – this was our first and McKenzie began teaching us the lessons of parenthood immediately. We learned a lot those two weeks, mostly we learned to deal with life first and ourselves second. We learned that it doesn’t matter how badly we are hurting or how numb we’ve become, all that mattered at that moment was McKenzie- WE learned the act of selflessness and that will help when we return in a few months for her heart surgery. 

Tuesday, July 11, 2017

Welcome, McKenzie.

On July 5th, we packed our bags for Winnie Palmer, it was induction day. We arrived at 10:45am and got settled in our room by 11:30am. The doctors came by, introduced themselves and began prepping me for what would be the wildest 25 hours of my life. Around 5pm they gave me my first induction pill; shortly after I began doing small rolls on a ball to loosen up my hips. We watched television and joked, we ate and took naps. Around midnight I received my second pill; at 1am the contractions began.

After contractions all night, they became so terrible I was taken to labor and delivery. My water broke at 10:39 am, at 11:30am the doctors said McKenzie’s heart had stopped twice and rushed us to a C-Section. “Are you ready to see her?” They asked as they pulled down the curtain. I sat up as much as I possibly could, trying to see every inch of this beautiful angel that we had been anxiously waiting for. My eyes swelled up in tears as she let her cry out, I couldn’t believe anything that was happening; my life was being held in front of me, my heart and soul were complete.

We saw her long enough for a picture and a kiss and away she went, I knew she’d be ok because Nikki left with her. The time began to stand still as they finished closing my C-Section; I struggled with thoughts and emotions and soon I found myself struggling to breathe as well. I woke up as I was being rolled into the recovery room where Nikki was waiting. I felt my body shaking uncontrollably and soon I was asleep again, and awake and asleep again. A few hours passed when I finally came too, I was upset because I wanted to see McKenzie but I was also so weak. I had gotten a blood infection and a fever during my c-section, after sitting on ten bags of ice and multiple bags of antibiotics (along with a lot of persistence), we finally were able to visit our baby.

Friday, June 23, 2017

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 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.

Monday, May 22, 2017

The devastating, lovely baby shower.

Our journey has become the most intense roller coaster of all times.

The last nine months have proved to be the most terrifying months of my life, thus far. I have learned so much in such a short time, some of the biggest lessons have been the lessons of loss. We loss the life we planned for our daughter, we loss our hope and at times faith. I remember just nine months ago when I felt I had everything all figured out, but the truth is; everything changed so quickly.

There are truly no words to describe the pain that shadowed the last few months of our pregnancy. On May 19th, the day before our baby shower; we lost one of our best friends, Ashley. Ashley began our journey with us, she bought our first pregnancy test and lived in the room that is now McKenzie’s nursery. Ashley was our biggest fan and while it’s been extremely difficult to come to terms with her passing, we keep faith she is now McKenzie’s angel and will always look over her. We are blessed to have had her in our lives and we miss her, so much.

Our baby shower was nothing short of amazing, our friends and family came together with so much love. While we mourned our friend, we embraced those who surrounded us and showered our baby with so much love. We were getting closer to our due date and beyond ready to meet our little girl. We are blessed to have such a strong support system and both friends and family that love so much.  Nikki was perfect, fixing everything, building everything else and working so much extra to allow my rest.

Tuesday, April 18, 2017

Entering the unknown

It's been weeks since we found out about the possibility of McKenzie having down syndrome; We 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 weren'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 imperfection – her heart. I instantly became numb.  

After several trips to the doctors and multiple syringes of blood drawn, 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.

Thursday, March 9, 2017

Gender Reveal

Boy or girl? a question we've pondered well before our positive pregnancy test. As time slowly creeps by, we anxiously await the day we can do the gender reveal. Will we throw a party or announce it individually? Will we tell everyone right away or wait and enjoy the results first? The doctors office insists on waiting until we're 20 weeks along, so we decided to hire an ultrasound tech. (Bun In The Oven Sonography) to come to our home during our sixteenth week instead. The tech. April set up her equipment in our living room, I laid on the couch while Nikki stood at my head. The ultrasound began and I felt my heart literally drop. 

April took a few minutes before telling us the results, but without a doubt it was clear as day; it's a girl.

The emotions of the gender reveal were beyond overwhelming, it made everything feel just a little more real. I looked at Nikki who wore a smile from ear to ear, we were having a girl. There are no words to explain the emotions this news brought us, after everything we'd been through - we made it and now we have a daughter to join us in this adventure of life. 

As soon as April left we rushed to the store to buy a little sign and some pink converse shoes – we wanted to tell the world! We took a photo and sent it to family and friends. We took our new pink baby converse shoes and visited my Grandparents, (They were thrilled) because the truth is - without them, we would never had been able to do this. 

The next step was the nursery; Nikki made this her personal project as she began wall designs, building toy boxes, shelves, tables and so much more. If I knew one thing for sure it's that our daughter will have the most beautiful room I ever had seen. 

Friday, March 3, 2017

We believe in faith; I think.

Faith has been important for both Nikki and myself during our journey, at one point it was all we had. After we found out the gender of our baby to be, we continued to prepare. We have had many doctor appointments and blood tests to ensure she and I are as healthy as can be. These past few weeks have been nothing short of perfection. My belly has gotten much bigger and feeling life inside has been life-alteringWhile we’ve prayed for this time in our lives, we certainly did not expect it to become so chaotic – not yet at least.

The doctor called a few weeks before our anatomy scan to go over blood work results. It was just another afternoon as we prepared for the work night ahead. When the doctor called, he began rambling on about this result and that result. Then he said something that stopped my heart instantly; Down syndrome. I can't recall much after hearing the probability statistics and next steps that needed to be taken. The phone call was short, but I felt like time had frozen and in that very moment I struggled with an overwhelming amount of fear.

When the call ended, I sat on the steps and got lost in my thoughts. What is down syndrome? How would this change our lives? Our childs life? There were so many questions, so many concerns and so much doubt that suddenly invaded our lives.

The following weeks would prove to test our fate in every way we never expected.