Congenital Heart Defect Week: The Heart of a Warrior!

Congenital Heart Defect Awareness Week, held February 7–14, is an annual observance to promote awareness and education about congenital heart defects (CHDs). They affect nearly 1 in 100 births every year in the United States and are the most common (and least funded) type of birth defect. 

Some heart defects can be diagnosed prenatally using ultrasound, some might be identified during newborn screening using pulse oximetry, and others might be discovered by clinical exam or when the person becomes symptomatic. An estimated 2 million children and adults in the United States are living with a CHD today. 

 

Be inspired by the amazing Heart Mom Ashley Hunt Martin, her determined Warrior Rex, and their family's CHD Week 2016. 

February 7th, How I found out: In early April, 2012, at 36+ weeks, I had stopped gaining weight and my belly had stopped growing. An ultrasound revealed my amniotic fluid was low, but, no matter how much I flipped & flopped on the table, they could not get a good, full picture of Rex's heart. After a week of bedrest (to hopefully increase my amniotic fluid), I went in for another ultrasound that showed there was a problem with Rex's heart. We were sent across town to a pediatric cardiologist who was able to tell us more about his heart, but admitted that we wouldn't have a complete picture until Rex was born. I was admitted that night and Rex was induced and delivered 2.5 weeks early the next morning, April 11th.

Ashley, Lyla, and Rex on the way!

 

February 8th, First Photo: I had a normal delivery. The NICU nurses were present just in case, but Rex was not rushed away. At this point, we still only knew what the pediatric cardiologist had told us the day before--the defect she had seen was minor and should correct itself at birth. A couple of hours later, Rex would have his first echo showing just how many defects his little heart had. Not counting the one that DID correct itself at birth, he had 3. He was sent to the NICU for monitoring, but Dr. Cottrill didn't think immediate surgery would be necessary. It wasn't until the blood pressure in Rex's legs plummeted on his 8th day that he was transferred to UK and his first surgery was scheduled.

Ashley and Rex

Kerrington's Heart Inc. is a 501(c)(3) organization dedicated to the education, support, and encouragement of children with heart disease, their families and caregivers.

 

February 9, Emotions/Fears: Rex's surgery was April 24, 2012, but our scariest, most emotional day came two days later. There is risk of brain damage, kidney function loss, paralysis, etc the longer the aorta is clamped. Those risks increase and the "safe window" of how long the aorta should remain clamped decreases with each clamping. Rex's aorta had to be clamped THREE times during his surgery. I blogged about that day here:
 

February 10th, Hospital Stay: Rex spent his first week of life at St. Joseph East before being transferred to UK's NICU. He was moved to the P(Pediatric)ICU after a couple of days, though, because he needed a central line and was being prepped for surgery. We had a private room and some amazing nurses! In fact, I have nothing bad to say about ANY of our nurses. They were such blessings! The bottom left picture represents a huge triumph--it was the first time I was able to nurse Rex. My sister-in-law and our favorite nurse, Korinne, fought for me when I was too emotional and stressed to fight for myself. His surgery was successful and he was healing nicely, but Rex struggled to gain weight (something he would battle the first year of his life) which kept us in the hospital much longer than we expected. Lyla practically lived with Seth's sister and family during that time with other family members and friends helping to get her to and from ballet and even chaperoning a field trip. It truly does take a village! Seth and I lived with our friends, Shane and Suzanne so we could be closer to the hospital and I had breast milk in freezers all over town. Finally, as we were on our way to church one Sunday, our nurse called to tell us that Rex was going home that day! We were shocked because we had been told that patients are rarely released on a Sunday. Those were the longest 3.5 weeks of our lives, but now, they are just a tiny blip on the radar.

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Team Rex

February 11th, New Normal: When Rex sees the cardiologist every 6 months, he could have any combination of tests done. They always check his blood pressure which (these days) definitely doesn't go as smoothly as it did in the picture on the left. *A little sidenote: The artery leading to Rex's arm was severed and used to widen his aorta so he will never have a blood pressure reading in his left arm.* He sometimes has an echo (ultrasound of his heart, pictured on the right) and other times he has a chest x-ray. They "attempt" an EKG every time, but it's a toss-up as to whether or not he will cooperate and an EKG of a screaming child doesn't really give a very accurate picture. I am thankful that our day-to-day lives really aren't all that different from non-CHD families. Rex is only on one heart medication which feels like nothing compared to what others are going through.

Watch this video of  Rex's Miracle

February 12th, Honor Your Warrior: Rex has no idea what an inspiration he is or the impact his little life has already had on so many. This is one of my favorite pictures of him. (Taken about a year ago by my friend, Michelle Graham Shiflet.) It captures him perfectly. He has his "terrible threes" moments, but, in general, this is the face you see when you see Rex. He loves Daniel Tiger, all things music, DRUMS, to laugh, to scare people, and to help. He is wearing his Beads of Courage around this neck. Each bead represents a clinic appointment, test, or procedure he has endured. As you can see, this one is full--he has started his second one already. I am so proud this CHD Warrior calls me "Mom." He is truly a living testimony.

Wearing RED for REX! *Lyla will tell you she is wearing it for Valentine's Day. ;-)

February 13th, The Scar: This was the first bath I was able to give Rex. Rex's scar isn't where you would expect a CHD kiddo to have one. The defect that was repaired was on his aorta which is on the outside of his heart so they were able to do a thoracic surgery. They went in under his arm, between his ribs, and moved his lung to get to the aorta. Imagine that on a little 5 lb. baby with a heart the size of a strawberry. God is good.

February 14th, CHD Fact: This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects.

Rex's new book, "Jeremiah, the CHD Aware Bear, and Friends" arrived! "He [Jeremiah] was a Warrior, a mighty fighter indeed." Purchase your copy Today! 

To connect with the Congenital Heart Defect Community, join the conversation on Facebook. 

 

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