Friday, October 13, 2017

Life after discharge;


                On the day McKenzie was discharged I felt a mix of emotions; excitement, fear, nervousness, anxious and ready. I always thought taking McKenzie for heart surgery would be the hardest thing I’d ever have to do, and while it was certainly terrifying, painful and overwhelming – I’ll admit that bringing her home has been equally if not more terrifying and overwhelming. As we said our goodbyes to the many nurses and doctors that have known McKenzie since she was four weeks old, we left the Cardio PICU at Arnold Palmer and drove home. Once we arrived home, McKenzie was exhausted and sleep well through the rest of the day and night, however, the last two days she has been up and down. It’s been challenging to determine if she’s okay, she has had inconsolable moments and moments that left us feeling like something may be wrong – but really, with so many possibilities it’s been difficult to identify what requires medical attention as compared to what is normal for a healing process after open heart surgery for a 3-month-old.

              While we have been surrounded by support from family and friends the truth is, unless you have gone through this or are going through this there is truly no way to understand what it’s like. Most say babies are a handful, you will be up all night and find yourself worried about every little thing. When adding genetic and cardiac issues to the average baby, it’s life altering. “You can’t put her in a bubble”, “You can’t just focus on the down syndrome”, “Well her heart is fixed, so you will be back to normal”, “an ounce really isn’t something to freak out over” and the list of other’s opinions goes on. A child with down syndrome and a heart defect often requires a different type of attention; germs become top priority, so while we don’t want to “bubble” our child – we also don’t want to see them hospitalized for countless days. Our day revolves around medication schedules, children with down-syndrome often face multiple health issues as they are considered “floppy” and often require more attention. Our caller ID consists of on-call doctor calls – McKenzie’s heart is repaired, but she will always be a cardiac patient and her recovery can still be life-threatening. Our days are full of appointments – we keep a bag packed in the trunk as McKenzie has struggled with her weight and the loss of just a few ounces could mean hospitalization for her. The truth is, when we’re finally home for the night and able to sit down – we force ourselves to shower, eat if we can and sleep if it’s possible because in 2-3 hours it’s time for medicine and a few hours after that the day will begin again.
               
                McKenzie has been admitted to the ICU five times and every-time we return home, I struggle to find a new routine that fits her new needs. As a stay at home mom, this process can become lonely as Nikki works long hours. During McKenzie’s stay at Arnold Palmer, we were lucky to have met another couple there while their son recovered from his heart surgery. This has led to a friendship as we both take our children home and attempt to regain a since of normality and struggle to understand our children’s new needs, new routines and how we can fit regular life in with this. I am thankful for our encounter as the process has become just a little less lonely.


                Overall; I am beyond thankful for McKenzie (and her new friend Landon) health. There is no way to describe what we’ve been through or will go through in our futures but I know with love, determined hearts and faith we will get through. 

Friday, October 6, 2017

Recovery

"Sometimes, real superheros live in the hearts of small children fighting big battles" 

I have never met someone so strong, fearless and full of life. Nikki had to return to work earlier this week which has caused extra stress on us both. It's been so hard to leave Kenzie every night, but I am so thankful for the Ronald McDonald house for allowing us to stay with them. We are right next-door to the hospital and while we cannot be with McKenzie every night, it helps being so close

McKenzie has three tubes in her chest, roughly fifteen-twenty IV lines and an oxygen flow. We are currently five days past surgery; On day three, the last tubes were removed and her sleeping medication was stopped overnight. On day four, McKenzie's pain medication was stopped - however, she was in a great deal of discomfort and not only received her pain medication but received a sedative as well. On day five, all but one IV was removed and she was no longer in pain from the procedure - but had stomach cramps and received Tylenol, gas medicine and a suppository. 

While she has had some great progress, there are still a few speed bumps ahead. Doctors have found a small amount of fluid in her right lung, a blood clot in her right leg, a few episodes of high heart rates and the inability to come off oxygen. McKenzie is currently in one of the best hospitals and is surrounded by an amazing team of doctors and nurses who know her from past admissions. 

As we take every day in stride, we continue to pray for McKenzie's health and comfort. I never imagined my life to be this - full of oxygen and meds for our baby. Everyday has been full of feeding pumps, monitors and checking her weight. Every appointment has been full of x-rays, blood draws, surgeries and praying. When McKenzie's discharged, her recovery wont be complete as she will still be a risk for illness and infection. We will do whatever it takes to ensure her health and we will continue to pray she keeps up the fight and is able to gain strength and quality of life.






Open Heart Surgery

There are no words that I could ever find to explain the day of McKenzie's heart surgery. The night before we got a hotel room near the hospital to save drive time in the morning. I watched her sleep for hours and when the time came to leave, I held back every emotion I felt and we drove to the hospital. We arrived at the scheduled time of 6 am, and shortly after the nurses began their assessments of her. Nikki and I tried to talk casually, like we weren't getting ready for the longest day of our lives.

At 7:30 the anesthesiologist briefly reminded us of his plans and the risks involved. At 7:45, the surgeon came for McKenzie. The hardest thing I have ever had to do was hand our baby to someone we've met twice who would stop her heart. McKenzie would be clinically dead and all we could do was pray and wait

We eventually made it to the cardiology waiting room, a room we've seen so many times but only once did we see it this way. As hard as I tried, I couldn't get myself together. I obsessed over every detail, I questioned if McKenzie was mad at me, Did she know I love her?, What if she doesn't make it to the bypass? What if she doesn't make it back? What if something goes wrong? Will she recover ok? Will she be in pain? Is she in pain? Is she scared? Is this really happening right now?

Arnold Palmer uses an app to update parents of their loved one's surgery progress. At 8:02am McKenzie was asleep safely and they began working on the lines needed for surgery. I found comfort in knowing she was dreaming. At 8:57am the procedure began and I felt sick to see the image of them cutting her chest. At 9:19am they began to dissect down to get access to her vessels for bypass. At 9:19am, I prayed and cried in the chapel. At 10:14am, McKenzie was successfully on bypass. 

After multiple more updates, ( graphic photos and videos) at 12:49pm McKenzie was officially off bypass and they began an echo. At 1:39pm, McKenzie was successfully out of surgery and at 2:12pm she was in the PICU. We waited another two hours before being called back to see her. As we scrubbed our hands and walked to her room, my entire world stopped.

It didn't look like McKenzie, I instantly felt sick. The wires, the machines, the tubes, the blood. Her eyes had liquid on them to prevent dryness, it looked as if she had tears falling down. She heard our voice and even though she was sedated, she started to move. She wanted us and we wanted her, but at that point - we were bad for her and had to leave so she would rest. 

I handed my baby to someone who took her away and cut her open. We waited as her heart was being repaired, we waited in fear and hope. We saw our baby hooked up to multiple machines and as she began to show the desire to acknowledge us, we were forced to walk away. 

Seven in a half hours, that was the time from us handing McKenzie to the surgeon to us seeing McKenzie in recovery. This day, by far has been the longest and hardest day of our lives.

Thursday, September 28, 2017

The Cardiologist says; it's time.

Every ounce McKenzie gains, we celebrate. It's a struggle to achieve these goals and most parents wouldn't understand. At almost three months old, McKenzie is still wearing newborn clothes and some are still baggy. Today, McKenzie is almost 8lbs and that is such a huge step for her weight goals.

During last weeks round of appointments, McKenzie's cardiologist decided it was time for her heart to be repaired. While this surgery was originally scheduled to happen at 3-6 months old, due to McKenzie's frequent hospital visits, low weight gain and echo results her cardiologist wants it done. We have wanted her heart repaired since she was born so she could thrive and avoid frequent hospital visits, however, now that it's time - we're terrified

McKenzie turns three months next week, unfortunately she will be recovering that day as the surgery center called to schedule her for Monday. So, we decided to take her third month photo early.

Today we took her to her pre-op appointment for blood, vital checks and x-rays. We also met with the surgeon and anesthesiologist to discuss the procedure. I was overall surprised with the time the surgeon took to speak with us, he was very clear and answered all of our questions. But, the truth is, with every question answered and every thought explained - I still find myself wondering so much. 

Now, sitting at home with only three days before McKenzie's surgery I am overwhelmed with fear, anxiety and sadness. I'm overwhelmed by thoughts of our week to come, scared of her surgery, anxious for her surgery to be complete and sad that she has to endure this at all. There is little comfort to be found, I intend on enjoying the next few days with her and focus on Monday when its Monday.

Saturday, September 16, 2017

Meet McKeznie.

Today I realized that lately I am guilty of focusing on McKenzie's health more than I have focused on who McKenzie is. I realized that I haven't properly introduced McKenzie to the world yet; so, meet McKenzie.

McKenzie has a few nick-names; Kenzie and Kenzie-Cole. She has shown a great deal of independence and while she struggles holding her binky in her mouth, she absolutely loves it and we often spend hours holding it for her. Kenzie loves her head-chalk (hedgehog), mirror, car rides (if we are moving), anything bright, bath time (until shes cold!) and snuggles for hours.

Overall, McKenzie is such a happy baby. She only cries when something is wrong and loves getting in her PJ's around 9 pm to fall asleep and she sleeps well through the night - sometimes until noon the next day. When she wakes up, she baby-talks to herself until we hear her. She has finally found her voice and loves to tell us all kinds of baby-stuff. 

McKenzie loves to move! She kicks her feet all day long, moves down to the bottom of her crib and has found a new love for sleeping on her sides. For a baby who has had struggles throughout the last several weeks, she is the happiest, smartest, strongest little girl we know.


While we attend doctor appointments weekly and have had a few more hospital admissions, she continues to grow and advance with every day that passes. McKenzie will be a fiercely happy, independent, strong, smart and funny little girl - We struggle with wanting her to stay a baby forever and not being able to meet who she will become. I couldn't be more proud of her determination and full of life personality.


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.



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.

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.