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.

 Please Donate to

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. 

 

Do you have an amazing pregnancy, birth, breastfeeding, or motherhood story?

Share it with other Blossom Moms!

My Miracle. My Life. My Lauren.

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." ~ Albert Einstein 

November is Prematurity Awareness Month! Enjoy this journey from a Blossom Mom Who Rocks about her daughter's premature birth. 

My Lauren

Having a child is the most precious gift from God, and I am so blessed to be able celebrate my miracle -“My Lauren” each and every day.  My husband and I were very excited about my pregnancy, as this would be our first child together.  He made sure he was at every doctor appointment and I remember the nervous feelings we shared as we prayed that every appointment would be good news. 

When it came time for the first ultrasound, I remember the doctor having problems finding the heartbeat and then he said, “there it is!”  I believe the world had stopped and began to move again in a matter of minutes of hearing those words.  From that point on, every visit could be labeled as a good visit.  I remember feeling really energetic and active. 

Then one day I wasn’t feeling so great and I had an appointment scheduled for later that afternoon.  When I arrived as soon as my husband saw me, he asked “are you feeling ok?”  I told him I felt a little tired but overall I felt great.  I attributed my fatigue to being further along into my pregnancy and assumed it just came with the territory. I went through the normal routine… Peed in the cup, had my blood pressure checked, and waited for the doctor.  

It seemed like it took the doctor forever to come into my examination room.  When he arrived, the look on his face was a look of concern.  Clearly something was wrong.  He said, “Angela I want to send you down to the hospital for more tests as we have found a high amount of protein in your urine".  He continued that it was nothing to be too alarmed about, as this was a precautionary measure to ensure that the baby and I were okay.  

Once the hospital begin testing it was clear that I wasn’t going home and the baby and even I, were in trouble.  As soon as I received the news that I wasn’t able to go home and they wanted to monitor the pregnancy. My hands, my feet, my face, my entire body began to retain an astronomical amount of fluid.  I was informed that I had preeclampsia.

Preeclampsia is a condition in pregnant women where  high blood pressure and protein has developed beyond 20 weeks into their pregnancy. It can endanger the lives of the mother and the baby or cause other serious medical complications.  I was afraid for my baby’s life.  Not only was my baby fighting for her life, but I was now fighting for mine.  

I had been in the hospital for approximately 2 weeks (28 week mark) when my doctor told me, “Angela call your husband back to the hospital… The baby is struggling I have to take the baby now.”  I called my husband – whose voice began to tremble on the phone.  He said "baby I’m on my way."  I called my mother and she said, “Angela calm down and pray – God will get you through but you must TRUST and BELIEVE.”  

Those words carried me into surgery and I delivered a 2 pounds and 14 ounces baby girl.  God had blessed me though at the time the fight was long from being over.  My daughter was in the NICU for 12 weeks.  Everyday, I laid her on my bare chest and we were both wrapped in the blanket – this method is referred to as Kangaroo Kare (or skin-to-skin contact, which is beneficial in regulating a neonate's heart rate, temperature, blood pressure, respiration rate, blood sugar,  liver enzymes, and helps prepare both the baby and the mother for breastfeeding).  

“My Lauren” got stronger every day… She would look at me with those big eyes and I knew she loved me and she was a “fighter.” So today and everyday I celebrate “My Lauren” who is now 10 years old, 5 feet 4 inches tall.  She is our miracle and we are blessed.

Do you have another miraculous premature birth story? Share it with us! 

A Note from Blossom 

Lauren is a straight A student, a gifted visual artist, and a community servant. 

Angela Walker is an Independent HR Consultant and Global Business Partner who has shaped high performance cultures at Fortune 500 and major growth brands with strategies that brought about efficiencies, robust development programs, and prolific communications.  She received her Bachelor of Business Administration from Tennessee State University.  Angela recently became a Accountability Coach where she supports individuals who seek leadership development, motivation, career development, and the establishment of life goals.  Angela said her greatest professional accomplishment was becoming an entrepreneur; however, her greatest life accomplishment is her family.  Angela is married to Randy, Quality Assurance Project Engineer and they have two children, Ronnie (22 ) and Lauren (10) - who she often refers to as their "miracle baby."

Please visit Angela if you are interested in her becoming your Accountability Coach!

On Heroes and Heaven

"A mother's grief is as timeless as her love." ~ Dr. Joanne Cacciatore 

My Special Needs Child Is My Hero — and Maybe Yours, Too

Ivo Jackson 

10/ 20/ 2014

As I write this, my daughter is nine weeks old. Like any other baby her age, she knows her mama, hates to have on a poopy diaper, and loves toys with lights and music. And she’s super cute. With huge, pinchable cheeks.

She is also not supposed to be alive.

My daughter Lael has a very rare genetic disorder called Thanatophoric Dysplasia; it is a severe skeletal disorder that causes extreme dwarfism. It causes the arms and legs to be very short and the rib cage does not grow to a normal size so the lungs do not fully develop in the womb, making sufficient breathing almost impossible, even with help. Almost all babies who have this genetic mutation are either stillborn or die soon after birth. At 19 weeks pregnant, I discovered that one of my unborn twins was destined to die.

Despite the statistical overview provided by the National Institute of Health regarding the survival rate, our doctors told us that the condition was “100% lethal,” and that my baby, guaranteed, would not be born alive. The maternal fetal specialists were so sure of this, it was even suggested that I consider aborting her, despite my daughter being a twin. Her brother has always been healthy and normal; so, since they were in separate sacks, modern medicine would have allowed me to end her life without disrupting his. That’s pretty deep.

I said no.

Besides the fact that it makes no sense to proactively kill someone who will perish from natural causes in a matter of time anyway, I knew that I had to give my daughter a fighting chance. Why should I give up just because someone else thinks I’m going to lose? I had to give the God I say I serve a chance to work. I’m an ordained minister for goodness’ sake.

Abortion was not the answer.

And so began the emotional roller coaster, the test of faith. Mind you, my faith was not that God would automatically give me what I wanted, but that my family would be equipped for the journey, come what may. My faith said that we could agree with whatever God said. Sometimes children die. Sometimes you don’t get what you want.

Deep down inside, I knew that she would be born alive. I was kind of afraid to believe it sometimes, especially when the doomsday doctors kept beating me over the head with the prognosis, acting as angels of mercy sent to protect me from false hopes. In spite of them, however, I knew. But then there was the part of me that questioned whether or not I really wanted her to live.

She had such a potentially bleak future; would her demise be God’s mercy? If she survived, would I really be willing and able to deal with all that would be required of me for her sake? Would she? Would we be able to handle all of the pressure? The sacrifice? The responsibility? The horrified stares of strangers in public? The judgment?

I wasn’t always sure I could stomach that. Maybe the blessing would be for her innocent soul to simply go back to God before the troubles and cares of this life could corrupt her. Maybe God would let us all off the hook.

But that’s not how great men and women are made.

Then there were all of the people praying for her. Family, friends, Facebook—there was prayer going up around the country for little Lael. Thankfully, God granted our petition, and against all odds, my daughter was born alive and breathing on her own.

My little princess had done the impossible.

Nine weeks and two surgeries later, my baby girl is still here. Every day Lael is alive is a blessing and a learning experience. Skeletal dysplasia experts have a little more data to help someone else now. Many of the naysaying doctors are now rooting for her. The Neonatal Intensive Care Unit is brighter because of her presence; the nurses all love her and want her to make it. Her incredible smile, chubby cheeks, and will to live have won her many friends at the Helen DeVos Children’s Hospital. She constantly inspires hope in a place that too often knows the pain of death.

But she is helping people outside the hospital walls, too—especially me.

Lael has known only struggle since the day she was born. Every breath she has taken without the help of a machine has been a struggle, yet she continues to try. Spending most of her time alone in a hospital bed, not knowing what the future will bring, she still smiles. Discerning that she has a family who can only visit for short periods of time, without a home to go to like the rest of the world, she makes the most of the time she has with her loved ones, not focusing on the pain of separation but the joy of togetherness. Even when she is under heavy sedation, when she recognizes my voice she struggles to move and open her eyes, to acknowledge and enjoy my presence. I wait patiently to enjoy hers. She doesn't judge me for giving her brothers and sisters and our household more time than I give her every day. Her love is unconditional.

My daughter doesn't focus on her discomfort; the nurses say she deals with it, learning to adjust, no matter how many tubes go in and out of her body, no matter what new machine she must be attached to in order to live. All of the babies there eventually do. Without the comforts of hopes, pleasures, or entertainment, they play the hand they are dealt in life without raising Cain. Lael cries sometimes, tired of the struggle, but she doesn't give up. She just recently had some difficulties because she was actually fighting too hard; Lael was struggling to breathe on her own against the ventilator and compromised oxygen intake as a result. While hooked up to a machine that reminds me of C-3PO from Star Wars, she has enough fight in her to keep going, even when giving up a little bit is necessary for her well-being. Many adults with everything on the line who have no hope but to fight faint for fear. Knowing nothing else, she fights for her life with every breath.

And here you were complaining that you couldn't get the iPhone 6 when you wanted.

Rising to the occasion of being Lael’s mother has changed me completely. I can’t imagine my life without her now, even though a large part of it is going back and forth to the hospital. I work hard to keep a smile on my face for her. I take each breath I breathe seriously, no longer for granted. When things get hard and I think to complain, images of my daughter drown out the very notion. My entire outlook on life has improved, and I was already a pretty happy Pentecostal Christian before. I mean, I was happier than most. But insecurities ate away at me just like they do everyone else.

No more.

Life is too short, God is too real, and I am too much of a miracle myself to let it go to waste. Lael is certainly not letting her miracle go to waste. Her story inspires people around the country to fight against all odds, with a grateful heart just for the chance to fight. Although the word thanatophoric literally means “death bearer,” she has ushered life into her atmosphere every second of her life. My daughter has ministered more from her hospital bed than I ever have from a pulpit.

My special needs baby is my hero…and if you need one right now, she can be yours, too.

FIGHT.

- Ivo Jackson 

UPDATE 

10/20/15

Baby Lael continued to progress, grow, and inspire in the NICU. She was able to join her parents and four siblings, including her twin brother, at home in February 2015. Sadly, just two months later, Lael was called to be an angel in heaven. We speak her name and remember her always. ~ Jada Wright Nichols 

October is dedicated to remembering our babies through Pregnancy and Infant Loss Month and activities. 

---

Ivo is an artist. A designer. A thinker. A talker. A human. Looking to cross paths with the same.

Connect with Eyeveaux on Twitter

---