Our Journey

Why Warriors For Walt

Warriors For Walt honors our Walt the Warrior by serving individuals of all abilities and giving hope to bereaved families. Our mission is to create awareness, inclusion and opportunity for individuals with special needs and giving hope to families suffering the loss of their child.

Our dream is for Warriors For Walt to become a way of life. Where we all come together because we live our life by asking “What Would Walt Do?” We hope you find Warriors for Walt as a gathering place for information, for support, for inspiration which leads you to learn how to become the “BEST YOU” you can be today.

Join us on Our Journey. Become a Warrior For Walt. Create a World of Happiness.

From Beginning to Forevermore

Warriors For Walt, we want to share with you the story of our mighty Walt the Warrior. This story weaves through the months of November 2015 to August 2016. It is lengthy, but not nearly as detailed as we could make this “About Us.” So where do we start? I think the beginning of my pregnancy is just right. Grab a cup of coffee, get in your comfy clothes and settle in for the story of our Walt the Warrior.

When I was pregnant, my husband, Trey, and I did not find out the gender of our baby. All we prayed for was a healthy child to welcome into the world. We opted out of genetic testing or any in-depth ultrasounds because there was no medical reasoning to test further since I was under the age of 30 and nothing ran in our family. My husband and I could not have asked for a better pregnancy, other than having severe “morning sickness” 24/7, I was on cloud nine during my pregnancy. Being pregnant with our “Sweet Baby Mo” was a blessing. I always had the feeling of wanting to be pregnant forever to keep the connection with our baby and to protect him/her forever.

The day of Walt’s birth will always be an out of body experience feeling for both my husband and myself. I was induced at 39weeks and 2days. My Labor & Delivery was smooth sailing – the atmosphere in the room felt like a party while we waited for our “Sweet Baby Mo” to make his/her grand entrance. After 45 minutes of pushing, out came a beautiful, squishy, screaming baby boy! We had welcomed our Walter Luther Morris, IV “Walt” into this world.

Minutes after Walt was in the world, my OBGYN shared the news that our baby boy had soft markers for Trisomy 21 (T21 or Down syndrome). Walt was soon diagnosed via genetic testing with Trisomy 21 (T21 – commonly known as Down syndrome). The next day, Walt was transported and admitted to the Neonatal Intensive Care Unit (NICU) at Arkansas Children’s Hospital (ACH). An echocardiogram confirmed that Walt, like 1/3 of babies born with Down syndrome, had a congenital heart defect (CHD), specifically Complete Atrioventricular Canal defect (complete AV Canal). We were faced with the news that at a mere age of three months, our precious baby boy would require open-heart surgery to repair his broken heart.

After processing the happiest feelings of Walt being born, we had to process the life we now had with our Walt that we never planned on having. We firmly believe God has a plan for everyone and that He often laughs at our plans we have for ourselves. God knows what we can handle and He hand-picked Trey and I to be Walt’s parents and biggest advocates. We were genuinely excited to raise a child with an extra chromosome and experience the love and compassion that our Walt will imprint on the world. But the worry of our precious baby having open-heart surgery was a constant burden our hearts and minds.

Thankfully, by the grace of God, Walt was only in the NICU for three weeks and was discharged for his first trip home on December 9, 2015. We survived our stay in the NICU post-birth, and before we knew it, Walt was thriving at home. And for a little over two months, we figured out our new normal as a family of three. Walt loved being a baby and we loved being his parents. Our little warrior was able to gain muscle strength during tummy time; he learned how to communicate by cooing back and forth with daddy and mommy; he had the endurance to take a bottle and gain weight – Walt was our Bottle Champion and loved to eat, despite his vomiting issues which we were told was due to his heart or a food allergy. It wasn’t until around two months of age that Walt hit a plateau on his weight gain, and the Cardiology Team at ACH set Walt’s open heart surgery date during the month of March.

Three weeks prior to his scheduled open heart surgery, Walt had to be admitted to the Emergency Room at ACH then was admitted to the Cardiovascular Intensive Care Unit (CVICU) due to being dehydrated. His dehydration was caused by Walt having episodes of emesis (vomiting), along with his twice daily dose of Lasix, which is a diuretic to keep the fluid off his lungs caused by his AV Canal defect. Walt received maintenance fluid and was rehydrated for a short stay of three days in the CVICU step down unit. From their Walt was discharged for a second time to go home and gain strength and get lots of love leading up to surgery.

On March 2, 2016, Walt the Warrior went in for open-heart surgery to repair his complete AV Canal defect at the ACH CVICU. The road to recovery was a battle with Walt the Warrior fighting against every obstacle face to face. On March 3, Walt was resuscitated after going into a pulmonary hypertensive crisis. Following that, he has had his chest open and closed three times and was put on dialysis to restart the function of his kidneys.

Due to his heart being in AV Block post-op, a procedure and major operation were to occur: Walt would go to the Cath Lab for an in-depth look at his heart function AND Walt would have to have a second MAJOR surgery to place a pacemaker to help with his heart conductivity. On April 1, Walt’s Cath Lab results were not favorable with Walt’s heart having diastolic dysfunction – meaning his heart is unable to fully relax which inhibits his heart to completely fill with blood. Causing the blood and bodily fluid travel backwards out of his heart increasing the amount of effusions within his fragile body. {Note: Diastolic dysfunction happens to about 10% of babies post-operative surgery. There is no absolute cure or surgery to fix Walt’s diastolic dysfunction}. Medicine, by means of a beta blocker, can be used to help his heart relax in hopes to fill; but only 20-30% of babies are able to live on such medication. If the beta blocker doesn’t work, then Walt will start a new journey to be added to the transplant list and wait for a healthy heart. These were the only two options for Walt. In the beginning, the beta blocker showed signs of decreased fluid to where Walt’s heart is relaxing, filling and pumping out to the body.

On April 14, 2016, Walt successfully received a pacemaker. Soon, we saw our warrior turn the corner towards recovery. Unfortunately, Walt continued to have high residuals being fed via a nasal gastric tube (NG tube). With this constant residual, Walt was not gaining the weight needed to move forward with bottle feeding. Walt was once again whisked away to Radiology and had an upper GI test ran on him with results coming back that Walt had a duodenal web that was blocking majority flow of his formula. Walt was born with his duodenal web which explains all of his vomiting and not growing properly. Leading up to Walt’s CVICU hospitalization, not a single medical professional took the time to diagnosis Walt with his web or refer us to get an Upper GI Test ran. Once again, surgery was the only option to remove his web so that our baby boy could properly digest food and GROW.

During Walt’s intestinal surgery, he received a third degree burn covering 50% of his abdomen. The burn occurred over skin of his pacemaker due to the cauterization producing electrical current with Walt’s pacemaker. The Burn UNit at ACH took the best care of Walt by paying him weekly visits and encouraging us to keep caring for his wound. Miraculously, with good nutrition being fully digested, Walt’s wound began to heal and Walt began to grow. We started to see the end of our hospitalization. We were able to dress Walt in his own clothes. We were waking up to a happy baby coo-ing as our alarm clock. Walt even began sucking again, which were the first signs his coordination was not lost to take a bottle. Then as the skin healed, it tightened and the original scabs from his pacemaker placement began to fall off. It was a Saturday at the end of May and a very happy time in our life turned quickly into a very dark day. Walt’s pacemaker was visible to the naked eye and would have to be removed – mainly due to risk of infection. We had no other option, but to put Walt through another emergency surgery to remove his pacemaker.

Let’s pause and take a moment – do you feel this story is a never-ending road of surgeries and let-downs? Yes, we did, too. Through it all, Trey and I believed in God’s plan for our family. We knew there was a reason behind every closed door. Maybe it was to help prevent a child born with Down syndrome from being mis-diagnosed with a duodenal web. Maybe it was to show God’s love even though we were caught in the middle of a treacherous storm. No matter what the reason was for Walt to be dragged through so much pain – which will be my first question when I meet face-to-face with Him at the pearly gates – we kept marching forward behind our leader – Our Walt the Warrior. We marched on with determination not giving up, positivity not negative thoughts, praising God’s not turning our backs on Him.

The time between June 2016 and August 2016, were very hard. Actually, I do not think “very hard’ describes our situation. Our life was unimaginable. Walt’s helath slowly declined. He did in fact get his second pacemaker, but his heart was too far gone to recover. He became ineligible to be a candidate for a heart transplant. Our only option was to start “taking things away” and allow our precious and mighty warrior pass away peacefully. I still and will forever get tears in my eyes thinking about that day our son’s end of life decision was made for us.

On August 30, 2016, Walt was transported from the CVICU at ACH to home. Our little love was surrounded by family and his Godparents, as the Clergy of our church christened him in our living room. Trey and I, along with Walt’s ICU doctor and Clergy, made the short walk from our living room to his nursery, wehre a prayer and blessing was bestowed upon our baby and the ventilator was removed. With Walt cradled in my arms and Trey holding his hand, Walt took his last breath and ascended into Heaven. August 30th was a day I will always remember and be able to feel. The Holy Spirit covered me with peace and gave me strength to be Walt’s Warrior mama that day and forevermore.

Just typing this story, my jaw drops that we survived the storm. I am astonished at my own life. I still cannot believe every surgery Walt endured, every decision we had to make or were forced to make, every day we spent – 182 days exactly – until we took Walt home for him to make his journey to his forever home in Heaven. I am amazed at how God guided Trey and I along this journey – our marriage is stronger than ever, we are surrounded by a faithful support system and we focus on living life one day at a time. Our life motto is “What Would Walt Do?” Trey and I will center our every thought, decision and action on asking ourselves what would our brave and darling boy do?