it’s time for our whatever monthly reality check. we are currently about 4-6 months between cardiology check ups for otto and for about 3.5 of those months it doesn’t cross my mind that much because he is such a funny charismatic toddler. i still have a hard time believing my baby is now a toddler let alone one with a congenital heart defect. i have become pretty good at keeping the anxieties of potential future medical interventions at bay but for the week leading up to the check in i just allow myself to feel. i don’t spend my energy trying to fight it i just let my mind go to where it needs to go and i usually end up where i always end up. whatever will be will be and God is with us come what may.
these appointments go a bit different now that otto has an opinion about pretty much everything. he is scared of the machines and the doctors (even though they don’t hurt). trying to get a frightened toddler to hold perfectly still during an ekg is a challenge. they put a bunch of stickers on ottos chest and belly, hook them up to wires and need literally 3 seconds of stillness to get a glimpse of his heart function.
we are equipped for these appointments with bubbles, crackers, mickey mouse club house, cell phones, lights, leap frog learning pads, balloons and of course our american flags. our efforts to distract are usually in vain but at least we try? these usually end up with me having otto in some sort of body lock so we can see what we need to see and get out of there.
then comes the anxiety of the waiting room. where we wait for our dr.L to come in and give us the results. we have been blessed for almost two years of great reports. i just have the anxiety of the older he gets the closer we might be to a second heart surgery. it’s a fear like i’ve never experienced before otto and it’s an ugly fear i wish upon nobody else. it’s a helpless fear, a fierce fear and one that will most likely never be gone from our lives. however like i said i only allow my mind to visit that fear intensely when it’s close to appointments. whenever i feel it show itself outside of those perimeters i put in place i repeat to myself that “that day is not today” and go about my day.
so even though that day is today where we have to face the realities we are hopeful that we will get good results and go on to enjoy the rest of our summer. and if we don’t then we know we have our trusty medical team in place to help us navigate our next steps. if you are the praying kind can you please pray for us this morning? pray that we can see what we need to see and otto knows that he is safe. that he stays relatively calm so we can have an easy appointment? pray that we either stay the status quo or that we are improving. just pray we are not going in the wrong direction. at these appointments we are basically measuring heart size. if otto’s heart is showing signs of enlargement that is a sign his mitral valve is beginning to fail and he will be going in to heart failure. that is what will land us back in surgery with a mitral valve repair. our goal in all of this is to avoid a valve replacement. at least until further medical advances are made with mechanical valves.
“but greater still, the calm assurance, this child can face uncertain days because He Lives”
read more about otto’s heart journey here.