Faith's Mom's Blog

Normally, Faith is the one with all of the appointments but this week it has been my turn. On Monday I had my annual echocardiogram. On Tuesday I had my pacemaker device check and appointment with the cardiologist who comes to Bismarck from the Mayo Clinic in Rochester, MN.  The doctors who come are pediatric cardiologists who also specialize in adults with congenital heart defects (CHD). This saves anyone in the area who has a CHD from having to travel to Rochester each year. It is very convenient! (I do travel to Rochester to get my pacemaker changed, though!)  The Bible verse that has kept me going all these years! When I saw the doctor, we mainly discussed two things: my Fontan and my pacemaker. But first, a little background. I was born with double outlet right ventricle (DORV). Basically, this means both my aorta and pulmonary artery stem from my right ventricle. Because of this, my left ventricle does not really do anything, which is why this CHD is referred to as a sin...

We are right in the middle of Congenital Hearts Defect (CHD) Awareness Week, which runs from February 7th through 14th. I am glad to see so many posts on social media to help draw awareness! Many of those posts center around children with CHD, which is good as heart defects are the most common birth defect in the United States. But many people are unaware of how CHD affects adults. Hence, this blog post!  In 2010, there were 1.4 million adults in the United States living with congenital heart defects (CHD). Due to increased survival, this number increases by about 5% every year. These numbers are significant considering that at one time babies born with CHD had virtually no chance of becoming an adult. Thanks to surgical advances and research in pediatric cardiology in the past 50 years, most congenital heart defects have been able to be corrected. Today, babies born with heart defects have a much better outlook than they did 50, or even 15 years ago. February 7-14th is CHD Awar...

Remember David Letterman's Top 10 lists? That was back in the day when late night TV was actually funny! This was also when music was really great, and I faithfully listened to the Top 40 countdown every Saturday. And around New Years, the DJ would play the top songs of the year!  I guess thinking about these things inspired me to come up with my own list. As a final nod to 2024, I looked back at all the posts I have ever written and have listed the ones that had the most views this past year. I found it interesting that posts I have written long ago were still being read in 2024!   10. Goodbye to Our Special Tomato Adaptive Car Seat  Faith at the age of 9 in her adaptive car seat. This post from 2012 describes how Faith had finally outgrown the adaptive car seat she needed when we did not have an accessible van. The car seat fit in the backseat of my Hyundai Elantra. The adaptive car seat was great, but I don't miss the days of picking her up out of her chair and pu...

I'm tired today. And a bit stressed. I've been dealing with trying to get approved to go to Mayo to get my pacemaker replaced and it hasn't been fun. But today I'm also thinking about how it was 50 years ago today that I had my first open heart surgery. It was called a Waterston shunt and was supposed to improve blood flow and cyanosis. It didn't help my cyanosis much, though because I still had blue lips and fingernails afterward.  Me as a baby with my parents and brother.  Me at 5 1/2 months old, 2 weeks before my first open heart surgery.  It's amazing that my parents were even able to navigate the medical world at that time. They lived in rural Montana and then western North Dakota. Somehow, they managed to find a pediatric cardiologist in Bismarck who referred them to the University of Minnesota. Up until I had a heart catheterization, they had no idea what was going on with my heart.  The doctors just thought that I had a hole in my heart, which is why I ...

Today I thought it was quite fitting that on my one-year anniversary of my new pacemaker, I was wearing a 24-hour Holter monitor! It's not because I'm having any issues with my pacemaker. Instead, I'm just preparing for my upcoming cardiology appointment next month.  Thankfully, my cardiologist from the Mayo Clinic in Rochester, MN comes here to Bismarck, so I don't have to make the 1,000-mile round trip again! By the way, isn't amazing how small these Holter monitors are nowadays? I remember having to wear much larger ones that could not be hidden very easily, plus it was hard to sleep being attached to a big clunky machine. Last night, I hardly even knew this little one was there! I got my original pacemaker in August of 1999 but because the lead was getting old, my cardiology team wanted me to get a new one. It was last year on this day that I was recovering from the procedure. It still bends my mind how God took care of every single detail and that I had found ...

In February 1974 when my mom took me home from the hospital, she thought she had a perfectly healthy baby. But when her mom came for a visit five weeks later to see her granddaughter, she asked why my lips looked discolored. Grandma Dorothy also noticed I slept a lot, even for a newborn. Mom assured Grandma she would ask the doctor about it during my six-week checkup. Mom took me to the same clinic in Wolf Point, Montana, where I had been born. She and Dad were living in a tiny town called Lustre, where Dad worked as a ranch hand. My regular pediatrician was unavailable. Instead, a young doctor, fresh out of medical school examined me.  Dr. Mattley quickly agreed the bluish tint to my lips was disconcerting and because of it, dubbed me a "blue baby." He told Mom that my body wasn't getting enough oxygen, which is why I was cyanotic.  He also detected a heart murmur. An X-ray confirmed a possible heart defect. Following the exam, Dr. Mattley called a clinic in Great Falls,...