Thursday, February 7, 2019

CHD Awareness Week: My Heart Story (So Far)

Grandma Dorothy holding me at 5 months of age
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 Luster, where Dad worked as a ranch hand. My regular pediatrician was unavailable. A young doctor, fresh out of medical school, examined me instead. Dr. Mattley quickly agreed the bluish tint to my lips was disconcerting and because of it dubbed me a blue baby. “Her body isn’t getting enough oxygen, which is why her lips and fingernails are cyanotic,” he said.

He also detected a heart murmur. An X-ray confirmed a possible heart defect. Following the examination, Dr. Mattley called the clinic in Great Falls, which employed the closest pediatric cardiologist in Montana, 300 miles away.

At the age of three months, I had my first electrocardiogram. I also had a second set of X-rays. The cardiologist admitted to my parents that he wasn’t sure what he was seeing. “There’s nothing we can do at this time. We’ll just have to wait and see. She most likely will need to have heart surgery someday.”

There was no Internet or access to medical information for doing research. My parents had no other alternative than to believe I would survive long enough to have surgery.

When I was four months old, my parents moved back to their hometown in North Dakota. Mom heard about a pediatric cardiologist in Bismarck and my parents took me there in June.

Dr. Katrapu had ordered another round of X-rays, an electrocardiogram, and blood work. “It is possible she has a hole in her heart,” he told them. “This is common for babies. A simple surgery should take care of it.” He went on to explain that a diagnostic test called a heart catheterization would show any anomalies in my heart. “Unfortunately, we can’t do the test here in Bismarck. The closest place is the University of Minnesota Hospital in St. Paul.”

At six months old, I weighed only twelve pounds. My lips and fingernails were getting more cyanotic by the day. I slept most of the time. Drinking from my bottle completely wore me out. My appointment in Minnesota could not come fast enough.

In August, Mom and Dad loaded up their Ford Galaxy (with no air conditioning) to make the 600-mile trip to Minneapolis–Saint Paul. They set out from home on Grandpa Lawlar’s farm twenty miles north of Watford City to a place completely foreign to them. Dad drove down the highway and then on the Interstate with Mom sitting on the passenger side and me lying on a blanket between them, which was completely legal at the time. Not having me restrained in a car seat made it much easier to feed and change me during the twelve-hour drive. The biggest city they had ever visited was Fargo, where Dad had gone to college. They were completely overwhelmed by the size of the Twin Cities but somehow managed to find the hospital.

My parents met with four different doctors, including Dr. Bessinger, the pediatric cardiologist. Following the usual tests, a nurse carefully placed me on a large gurney, making me look much smaller than I was. In response to the panicked looks on my parents’ faces, the doctors assured them the routine heart catheterization would take only a couple of hours. They explained they needed to locate the hole so they could operate the next day. I had been gone for over three hours when Mom and Dad, stuck in the waiting room, started to get anxious. Finally, five hours after my parents had last seen me, Dr. Bessinger gave them the grim news.

He told them I did have a hole in my heart, but I also had much more going on than originally suspected. An exact diagnosis could not be determined. The doctor explained to my parents how a normal heart has four chambers but only three of mine were fully functioning. He also said I had some blockage to one of the main arteries attached to my right ventricle. I would need to have a shunt placed between my pulmonary artery and aorta, allowing more oxygen to flow through my body. Without the shunt, I would eventually suffocate to death. He warned my parents it would not be a permanent fix. As I grew older, I would have to get another one placed. My parents were informed that my particular heart defect was rare and the prognosis was uncertain. Even with the shunts, I might not live to see my twenties.

Following my surgery the next day, the doctor asked a nurse to take my parents to the Intensive Care Unit to see me. The surgeons had opened me up on the left side of my body. Along with several IVs, I had a tube down my throat and a big machine near my bed pumping oxygen into my body. As the machine pumped, they could see my little chest move up and down. Though tubes, lines, and bandages obscured much of my body, Mom did notice my lips were not as blue. Dad, completely unprepared for what I would look like, nearly passed out when he saw me. Fortunately, a nurse standing close by steadied his wavering body. As they stood over me, nurses came in to draw blood from my heel every ten minutes.

A couple of days later, the doctors discharged me from the ICU and moved me to the pediatric floor. Mom and Dad did not have enough money to stay in the Twin Cities during my entire hospital stay. They were forced to leave me in the hospital and make the long drive back home. The only thing connecting them to me was the daily long-distance phone calls to the nurses. The nurses always reassured my parents if anything ever changed someone would get in touch with them. Four weeks later, the one phone call they had been waiting for finally came.

Dad had just walked inside from milking cows. “They called and said we could come and get Cari,” Mom told him.

They dropped my brother off at Grandma and Grandpa’s, just down the road, and drove all night to be reunited with their baby. When they reached the hospital twelve hours later, they were relieved to see that I looked like a normal, healthy baby. My pinkish skin plus the weight I had gained nearly shocked Mom. “It’s hard to believe this is the same baby,” she quietly remarked to Dad.

They stood there for several minutes watching me kick my legs around in the crib, marveling at the amount of energy I had. Within hours I was discharged and Mom and Dad were back on the road bringing me home.

Celebrating my 45th Birthday with my daughter!
Four years after my first surgery, I had another one, and then at 10 my Fontan. In between surgeries I had been officially diagnosed with Double Outlet Right Ventricle (DORV). In 1999 at the age of 25, I had my fourth open heart surgery and 3 months later, a pacemaker implanted. 

I am beyond grateful for the wonderful medical care I have received through the years, and that despite what doctors said, I was able to have a child. My daughter, Faith is the most wonderful gift the Lord could have ever given me. 

I know my heart journey is far from over, as this spring I will most likely need to go to Mayo for a heart catheterization during which they will give me a Fontan "tune-up" and possibly another surgery to have my pacemaker completely replaced. After that, I'm not sure what the future will bring. What I do know is that through it all, God will be with me, just as he has been all these years.

By the way, my nephew, Preston is raising money for the American Heart Association. On his donation page he says, "I'm excited about raising money for other kids - kids with hearts that don't exactly work right and to help fund new medicines and treatments to be discovered." Research in the area of pediatric cardiology is helping the one in 100 babies born with CHD every year to live into adulthood and have a high quality of life! 


Wednesday, January 2, 2019

My Top 32 Inspirational Memes of 2018

At the beginning of 2018 I had come up with the idea to post an inspirational meme for every day of the year. I called it #365DaysOfInspiration. Part of the reason for doing so was because of all the negativity and bad news that seemed to be flooding Facebook. I figured my inspirational posts could be at least one positive thing people saw each and every day.

Little did I know at the time how much my Facebook friends would come to appreciate these little nuggets of inspiration. One lady even told me that she wrote every one of them down in a little journal. Another told me these little blips of inspiration kept her going on some of her most difficult days. Many people shared that whatever I had posted for the day was just what they needed.

After faithfully posting for 365 days, one of my friends said, "Thank you for the 365 inspirational posts. I enjoyed the variety of quotes, often feeling challenged to think more about it through the day. I know this took a lot of time and effort. So thank you, Cari, for enriching our lives in this way!"

There are a million inspirational memes out there, and in my choosing the perfect ones, I tried to be careful that the message was never contrary to Scripture. Sometimes, the meme was more funny than inspiring, but I figured, we all need to laugh more!

Some people have asked if I planned on posting inspirational memes again in 2019. While I enjoyed doing it, I decided not to, mainly for the simple reason of trying to spend less time on Facebook. So while you will see more memes from me throughout 2019, it certainly won't be every single day!

Like a true nerd, I kept track of which of the 365 Days Of Inspiration received the most likes, shares, and comments, etc. Here are the 32 that came out on top!

































Hope you all have a wonderful 2019 and
may you be the inspiration and encouragement 
that others need every day of the year!

Thursday, December 20, 2018

Our Shining Star

I know I have said this many times before, but I can't reiterate how thankful we are for the Inspire homeschooling group that Faith joined. Not only has she made some wonderful friends, her social skills have improved, she has more confidence, and she has learned a lot in science and history.

Besides all of that, she has gotten to take part in their annual Christmas program, which she absolutely loves. Last year, she played the part of an angel and had a few lines to say. This year, she played the one and only bright shining star. Not only did she get a narration part, for which she had to memorize and say an entire paragraph worth of words, but she got to say the best line of the play, "SO MANY STARS!"

This year's program, Starry Night, Noisy Night, told the birth of Jesus from the perspective of the animals that were present in the stable that night. There were sheep, chickens, cows, and of course a donkey. There were also shepherds, wise men, and angels. Mary and Joseph were there, too. And so was the star.

During practice one day, Julie, the music teacher at Inspire, had Faith say the lines, "and so many stars." (The two previous lines are, "So many sights! So many sounds!"). From that moment, Faith wanted that part. Even though the script called for other characters to say it, Julie generously gave her the part. Faith practiced every day - she knew all the songs, not to mention everyone else's lines. I kept telling her she could only say her lines during the program. I also told her that when there was a duet or solo, she couldn't sing their parts, even though she really wanted to.

At home, she sang the songs beautifully, but during Inspire, she only sang her favorites. At home, she recited all her favorite lines, but at Inspire, she did her best to restrain herself and let the other kids say their parts. I had no idea what would happen during the actual program.

Besides helping her, I had to come up with a star costume for her. One day while out shopping, I managed to find the perfect star outfit - a midnight blue dress with gold and silver stars, complete with a little gold jacket. I also grabbed a black pair of leggings with gold and silver stars because I honestly didn't think Faith would go for the dress. When it comes to clothes, she usually opts for comfort over style.

I also grabbed a ton of arts and crafts items in the hopes I would somehow be able to create a star to mount on her chair. I had no idea how to do it. Pinterest was of no help whatsoever. Apparently turning a wheelchair into a star is not really a thing that people do.  I bought some tag board, a string of gold garland, lots of glitter, a roll of gold wrapping paper, two strings of LED battery-operated lights, and some really cool sparkly gold duct tape.

When I got home and told Faith she could either wear the dress or the leggings (with a black shirt that I was somehow going to glue some stars on to), she surprised me by yelling, "The dress!" Little did she know that she had just made my life a little easier. Now, I wouldn't have to worry about the shirt. She wanted to try the dress on right away and we discovered that it fit her perfectly. We also discovered the black leggings looked great underneath, despite the fact they were black and not midnight blue. She wore her outfit to Inspire the Tuesday before the program. I had also strung some lights through the bottom of her chair. Everyone loved her star look. So far so good.

Faith on stage with the shepherds, angels, and animals
The next day we got to work on the actual star. One of my friends had posted a picture of some Star of David cookies she had made for Hanukkah and I noticed the star was basically two triangles. I figured I would go for it. To my utter dismay, I couldn't make an equilateral triangle. It's harder than it seems! My sister-in-law said I should've used a protractor. Yes, I should have, I told her, while trying to remember what in the heck a protractor is. Math was not my strong suit and I had nearly failed high school geometry.

By this time, Faith was getting quite impatient about this whole star deal. I had to come up with a plan B. I basically used two squares to make the star. The trick was to make sure the star stayed put while resting on the push handle of Faith's chair. Somehow it all came together - the star just had to stay in place during the actual program.

Faith and friends
We had to be at the dress rehearsal at 5:00 p.m. The star looked great, I put lights on the star as well as her chair, and with her star outfit, she looked amazing! The other kids crowded around her telling her how much they loved her star costume. During the rehearsal, she was extremely excited. When it was her turn to be pushed up to the microphone for her narration part, her whole body tightened up, making it hard to enunciate. She said her other line, "So many stars" perfectly.

Faith's star all lit up - along with the candles for Silent Night
By the time the actual program rolled around, she was getting tired. It ended up being a good thing, though, because her body wasn't as tense which enabled her to say her lines loud and clear. She even tried to sing along with her friend, Maddie, with her solo. Maddie just smiled and kept on singing. It ended up being a great program, and even though Faith didn't sing like she did at home, I couldn't have been happier for her. Not only was she our shining star that evening, she is our joyful, sparkly girl all year round!

The entire Inspire group
Faith with her Grandma Deone, baby cousin Marla, and auntie Lisa

Wednesday, November 21, 2018

Faith's Thankful List 2018

In the past when Faith and I have done her annual Thankful List, I would write down the items as she told them to me. This year, I thought it would be fun for Faith to be sitting right next to me so I could show her how to do a blog post.

So here we are again giving Thanks to the Lord for His abundant blessings, which is the whole point of Thanksgiving!

One reason I like this tradition so well is because since Faith has a feeding tube, it's hard for her to get excited about turkey and all other other food that accompanies this special day.

This year, Faith says she is especially THANKFUL for the following people and things in her life:

Good Friends 

Faith has made some wonderful friends at a faith-based homeschooling group she attends once a week called Inspire. 

This year, she invited the girls from her class to the park for her birthday. (It was near miraculous that we had a 60-degree day with no wind at the end of October!) She had such a wonderful time. As her parents, Rob and I are beyond grateful she has found some other kids to connect with and who love and appreciate her. There are 2 girls in particular who have become very special to her and she enjoys hanging out with them.

Faith having fun with her friends on her birthday.
 Her New Pet 

For her birthday this year, Faith got a Betta fish that she named Raymond. He really is a good pet as she says good morning to him when she comes into the living room for breakfast, feeds him whenever she is getting a feeding, and says good night to him after she has read her good night story and is ready for bed. Raymond has even made a bubble nest in his fish bowl, which is a sign that he is happy and healthy. Even though he is just a fish, Raymond has already become very dear to us. 

Raymond and the bubble nest he made in his bowl
Wheel of Fortune 

This show continues to be one of Faith's all-time favorite things to watch. She has probably been watching it faithfully for years. Besides watching it, she loves playing  it on the PlayStation. One thing that is really fun for her is making her own players, based on people she knows in real life. Her goal is always to win the million dollars, which we have managed to do a handful of times. Here is a photo I took of some characters that we made, which included her Uncle Brock, herself and her dad.

Faith loves making her own characters on the Play Station 2 version of WOF
Doing School at Home 

One of the toughest parts Faith had with going to school is battling her startle reflex all day long, coming home completely exhausted, and then having to do it all over again the next day. Even though I was hesitant about homeschooling, I know this was the right decision for her and us as a family.
One thing I love about it is that on nice days we can get her outside and take mini field trips, which is a great way for her to learn and get some fresh air. One of her new hobbies is collecting rocks, so it's fun to look for those with her. Homeschooling has its advantages in the winter, too so that she doesn't have to go outside in the frigid air, which is never fun in North Dakota.

Faith learning about trees out by her uncle's property on a nice fall day
Her Dad 

Faith loves her Dad and I'm so grateful for the special and wonderful relationship that they have. Faith especially enjoys it when her Dad reads her stories and is always making up silly songs and dances to make her laugh. She likes that he takes good care of her and always prays with her, for her, and over her.

Faith's dad in one of his favorite spots celebrating Father's Day at Tim Hortons in Grand Forks

People in our Building - Faith has made some special friends with some of our neighbors (and their family members) in our building and she enjoys getting together with them on a regular basis, including once a month for a potluck and playing games.

Her Grandparents - Faith is blessed to have all four of her Grandparents in her life. Even though we don't see her Canadian grandparents nearly enough, they are only a phone call away! She also enjoys house sitting for her other grandparents and seeing them whenever she can.

Barnes & Noble - this has become one of Faith's favorite places to shop and hang out.

Our Van - Even though it has racked up the miles since getting it in 2011 and the ramp doesn't work as well as it used to, Faith is thankful for a way to get around town!

Doing activities with her mom - As I mentioned earlier, one of Faith's new hobbies is collecting rocks. For her birthday, she received a rock art kit so that she can paint and decorate her own rocks. I love finding these kinds of activities and enjoy doing them with her!
Rob and I are very grateful that despite some of the challenges she has faced this past year, Faith is always ready to provide encouragement to those around her. We are truly blessed!

Saturday, September 8, 2018

Summer Highlights

Summer. It sure doesn't last long in North Dakota. And since Faith started school earlier this week, I figured it was a great day to reminisce about the summer we had. In June we took a trip to Fargo and somehow ended up at Tim Horton's in Grand Forks. Faith and I figured it was a great way to celebrate Father's Day a little bit early!

While my brother and his wife were away for a couple of weeks, we went out to their place to check on their dogs for them. Faith loved her new role as dog sitter. She especially enjoyed reading Clifford the Big Red Dog books to them. Besides dog sitting, Faith also enjoyed house sitting her grandparents' house while they were on vacation.

Unfortunately, Faith wasn't feeling the best over the 4th of July so we didn't make it to the parade this year, or any other fun festivities, although she did get to see the fireworks from our parking lot in our building. Later in the week, we made it up to Grandma and Grandpa's so she could see her cousins from Nebraska and South Dakota.

During the summer, Faith was able to get together with a few of her friends from the homeschooling group we go to called Inspire. She loves going to the park with them and having them push her chair around the playground. One day, the weather was even perfect for kite flying. During another adventure, she was able to see her friends perform in a play called "The Girl with the Golden Locks" put on by the Shade Tree Players.

In July I went on the Lewis and Clark Riverboat Cruise to help my Aunt Sharon celebrate her 70th birthday. Then in August, my college roomies came to town for their annual teacher's conference. We always have so much fun catching up with one another!

Between the heat, humidity, and smoke from the wildfires out west, we didn't spend as much time outdoors as we usually do during the summer. Plus, Faith came down with a pretty bad cold in August, which we all three ended up getting.

We did manage to have one last hurrah at my parents' for another family get together. Not only did Faith get to see all of her "big cousins" but her baby cousins, too. Faith even got to see her grandpa's impressive rock collection that he put around their house.

If he ever tried to be cool you might say Daddy rocks, but he definitely brings rocks home from work. Faith started her own rock collection earlier this summer when helping Daddy by the gate on the west side.

We started school the day after Labor Day, which isn't typical in North Dakota but it is kind of nice as the holiday feels like it brings summer to a close. Faith is super excited to see her Inspire friends in less than a month and is already starting to count down the days.

I hope everyone had a great summer! 
We can't wait for fall and all the fun and cooler temperatures that it brings!