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I haven’t been able to watch the entirety of Jimmy Kimmel’s monologue regarding his infant son, Billy.  I can relate to every feeling that he was having as I had those same thoughts and feelings 17 years ago when my own son was born with Tetralogy of Fallot. I’m deeply grateful to him for sharing his story – it shines a spotlight on Congenital Heart Disease — which affects 1 in every 100 babies born in this country. And, it brings a familiar face to the forefront of an incredibly important conversation our country is having right now with regard to health care and pre-existing conditions.

“No parent should ever have to decide if they can afford to save their child’s life. It just shouldn’t happen. Not here.”

Not anywhere. But especially not here. And, the argument doesn’t stop at simply denying or allowing coverage for pre-existing conditions. It must be affordable to the people who need it, or it is irrelevant.

Our hearts go out to the Kimmel family. It’s an overwhelming wave of emotion and despair when you get news like this. We are praying for Billy and his team of healthcare professionals.

You can watch the powerful video here.

Yesterday we had Jake’s annual cardiology appointment. It’s turned into a tradition to go on President’s Day since we all have the day off. I generally am in charge of doctor appointments but I don’t like to go to the cardiologist alone.

As usual, Dr. Hougen impresses the heck out of me. He is truly a wonderful doctor. He is unpretentious and has a wonderful bedside manner. He and Jake talk baseball every year and make predictions about the upcoming season.

Since Jake was 2, we’ve gotten the “see you in a year” speech. This year, things were different.

The EEG and the echocardiogram were “normal” for Jake. As with most Tetralogy of Fallot patients, he has leakage in his pulmonary valve. We’ve always been told that its possible he will have to have it replaced someday–and someday may be coming in the next several years. While there was nothing alarming in the echo, Dr. Hougen explained that he needs a cardiac MRI to really get the best look at the valve and the right ventricle. He said that they have really figured out that its really important to be pay attention to that right ventricle.

So, there’s nothing to be concerned about and certainly nothing is imminent. But it’s a reminder that even though Jake lives a normal healthy life, he has some big issues that he will always have to deal with.

It’s important to note that although Jake’s valve is leaky and there is a possibility of future surgeries, it doesn’t mean that his repair surgery wasn’t good. Quite the contrary actually. Dr. Hougen remarks every year that his repair was excellent.

I will say that I am very grateful that there is a generation of adults ahead of Jake who are living with Tetralogy of Fallot. They are paving the way for kids like Jake to live long, healthy lives.

I’ll update after the MRI.

Today is Jake’s 12th heart birthday. You can read my thoughts about this day here at my personal blog.

Sometimes June 5th passes me by with absolutely no notice. This year, it was the first thing I thought when I woke up. It has been 9 years since I handed my baby boy over to the nurse in the hospital. It was a hot summer morning in Phoenix and the hallway was bright. I remember he watched me as the nurse took him into the operating room and all I could do was ask Jesus to be with him and tell him it would be okay and help him not be scared.

I remember friends and family waiting with us. I remember how tense it was whenever we would get a call with an update. I remember with vivid clarity the nurse who came out to tell us that the surgery was over and they were sewing him up. She was petite with short brown hair and very compassionate eyes. This is all remarkable because I don’t remember much from that year. I can barely remember yesterday. But, the thing I remember most is an absolute confidence that my baby was going to be okay. I knew it.

It was touch and go for a few days, but within a week, he was out of the hospital and we were ready to move on with our life.

Today, the scar is pretty faded and if you didn’t know about his rough start, you probably wouldn’t. He’s vibrant and full of energy – just as an almost 10 year old should be.

Jake had his annual appointment with the cardiologist yesterday. He had an EKG and and echocardiogram. The doctor said there is no function change since last year….everything is status quo. That is music to a mother’s ears. He goes back next year, but only for an EKG. No echo until he is almost 12 (gulp), unless anything changes.