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 gave us an app called Ease and 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.

As we waited for McKenzie to return from surgery, I realized 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.

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.  

Bringing McKenzie home

After Nikki returned to Daytona for work, the hospital was kind enough to put me and McKenzie on the 11th floor, it was the first time Nikki and I had ever spent any time apart and while it wasn't home, the room was comfortable as I was finally able to eat, sleep and shower while still being with McKenzie.

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. We never imagined dealing with amount of emotions we were now dealing with. 

Eventually one machine after another were being 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 two weeks today and things have been amazing but challenging. McKenzie sleeps through the night, but often turns blue. I have found myself laying in bed watching her bassinet to make sure shes still breathing. During the day she won't take much from the bottle and so we changed her formula. It's hard bringing home a baby, but its really a challenge bringing home a baby with a heart defect and down syndrome. 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.

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. I learned so much from the nurses, but so badly wanted to care for my baby on my own.

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. 

Welcome, McKenzie.

On July 5^th, 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 room was beautiful, we watched as the helicopter left and returned to Arnold Palmer over and over again, we watched the sun set while the doctors came by, introduced themselves and began prepping me for what would be the most intense 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. The entire process was touch and go as I couldn't function over the pain. The nurses there were so helpful, and once I got an epidural I was able to calm down.  My water broke at 10:39 am but at 11am Doctors inserted a needle vaginally into McKenzie's skull to get a better heart rate. By 11:30am the doctors said McKenzie’s heart had stopped twice. They handed Nikki a gown and started flipping me from one side to the next. By 11:45 the doctor rushed us to a C-Section. Laying on the table, I felt my body shake from them working, I was terrified. “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 sepsis and a high fever during my c-section. I felt so helpless, so sick, so tired and all I wanted was to see McKenzie. In order to see her, I had to rid my fever, so for an hour I sat on ten bags of ice. After my temp was normal and multiple bags of antibiotics (along with a lot of persistence), we were finally able to visit our baby.