McKenzie was discharged 8 days after her surgery. I was excited to take her home but nervous to be so far away from the children hospitals, what if she needed a doctor? It was an intimidating thought to not have assistance from nurses. Lori ( Landon’s Mom) and I had a get-together with the hospital’s cardiac counselor, we talked a lot about the emotions this has created for us. I think it was helpful, but regardless of any preparation – bringing McKenzie home would prove to be the hardest thing I’ve ever had to do.
I always assumed taking McKenzie for heart surgery would be the hardest thing I’d ever have to do, and while it was certainly terrifying, painfully hard – I’ll admit that bringing her home has been equally if not more terrifying and painfully hard. After saying our goodbyes to the many doctors and nurses that have known and cared for McKenzie since she was four weeks old, we left the Cardiac PIcu at Arnold Palmer and made the two hour drive home.
As I pulled into the parking spot outside of our house, I was relieved to know I would finally see Nikki and we both would find relief from this extremely difficult time. McKenzie was exhausted and slept well through the rest of the day and that night, but the days that followed weren’t as simple. I felt confident in McKenzie’s medication, even her shots – I felt confident in cleaning her wound and chest dressing – I felt comfortable picking her up, setting her down and even bathing her. But, the pain she seems to be in and the inconsolable moments have left me troubled. I have chatted back and forth with Lori – as she is home caring for Landon now, too.
The truth is, this is hard – really, really hard. It’s difficult to determine if McKenzie is okay or if she needs medical attention? Assuming recovering from heart surgery would be uncomfortable, but as Nikki and I attempt to debunk the behaviors – we also have taken multiple trips back to the E.R.
McKenzie’s right leg still has a blood clot so I have continued 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.
Having a child with Down Syndrome and Heart Disease requires a different type of care. We don’t wish to “bubble” Mckenzie, but we also know that germs can be deadly to her or result in more hospitalizations. Our days consist of medication, feeding tubes, making calls to on-call specialists and appointments. McKenzie’s heart is repaired, but McKenzie is still recovering – and once she is recovered, she will still have heart disease and will continue to be monitored for the rest of her life. We have learned to keep a bag packed in the trunk of my car because we know that at any given moment, at any random appointment – McKenzie could end up being admitted, admitted 2 hours away from home.
As we try and settle into our lives with McKenzie’s heart surgery behind us, by the time we sit down at the end of the night – we force ourselves to shower, eat if we can and sleep when possible, because within 2-3 hours it will be time for medication and feedings – and a few hours after that,a new day will start.