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. 

McKenzie's right leg still has a blood clot so I have been giving her the Lovanox shot in the morning and evening, I never imagined giving my three month old a shot - let alone twice a day everyday for weeks. I don't know how long she will need it, I don't know how long until she begins to feel better but I do know sleep doesn't come easy.

              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. 

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. This isn't a life we imagined - oxygen, medication, feeding pumps, monitors, weight checks,x-rays, blood draws, surgeries and praying beyond belief. When McKenzie's discharged, her recovery wont be complete as she will still be a risk for illness and infection. She will need shots twice a day for blood clots and medication around the clock. But, 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.