It almost seems like yesterday or just last week when the words “Pray For Baby Layne” were seen on signs, and echoing in hearts and minds, throughout Olive Hill, Carter County and beyond.
“Baby Layne” Minor celebrates his third birthday today, on the day after Thanksgiving 2019.
The son of Todd and Jussie Minor continues to face challenges, although he has clearly made wonderful advances from the time when every breath was a renewed fight for life as his medical team dealt with the many unknowns of a condition labeled hypoplastic left heart variant, with difficulties unique to his case.
“When Layne came home at five months he was a $5.9 million baby,” his mother said after recalling the immediate changes their friends and family dealt with after a routine prenatal doctor’s visit revealed extreme complications for her otherwise trouble-free pregnancy.
“I could feel people’s prayers,” she said of the incredible community support for her family.
“Every time we celebrated, 500 people celebrated with us. He gave faith to people who were barely hanging on for their own personal reasons. He was a perfect example of God’s healing power.”
Layne remains “heavily isolated,” his mother said, with visits only from those who’ve been immunized and are in perfect health. Otherwise, he is basically just a growing boy.
“Layne has a speech delay and that’s about it,” she said. “Layne is very sweet and he’s a snuggler, but he is rambunctious! He has a love of all things busy – cars, trucks, Paw Patrol, PJ Masks … And, he’s a water dog. He loves water. He became an avid swimmer this summer.”
Layne’s third birthday will be celebrated Sunday, with an “all things Toy Story” party along with a day dedicated to celebrating his young life – beginning with a pancake breakfast.
Smiling, Minor said she essentially expects her son to be “Baby Layne” for the rest of his life.
“I still say that Layne is everybody’s baby.”
Baby Layne’s mother, Jussie Minor, wrote the following in hopes of helping others who are dealing similar challenges:
To the Strong,
Why such an unusual greeting, you ask? You are now the strong. You may not feel that way in this moment. I honestly can’t remember when that switch happened. When you become the parent of a heart warrior, you gain your armor one moment at a time. Before long, you will be equipped to fight just as steadily as your blessing.
I’ve found lots of armor since the moment we found out about our son’s diagnosis. In brief, we had a happy, healthy pregnancy. Life was rolling along smoothly for us. We were overjoyed to welcome our son into our family of 3 and complete our family. At 34 weeks, the tech noticed something unusual in ultrasound. The doctor via telemedicine at our regional hospital assured us it wasn’t a “big thing”. An echo later, the children’s hospital closest to us had no idea what was wrong with our son’s heart. So, we were referred to Cincinnati. We were in whirlwind to say the very least. Our hearts were broken. Layne had several defects working against each other. He is functionally diagnosed with Hypoplastic Left Heart Syndrome. I take nothing away from your grief. We mourned for all the plans we had for our son’s life. People tried to share beautiful stories, and all we saw was dark. One of my greatest hopes for new parents who follow a path like ours is: Do not live in the dark! it’s a very cruel place.
In hopes of spreading some light to you, I wanted to share with you some things that I wish I had known before Layne’s birth and in those early weeks when he began his fight.
You may not “like” this journey, but you will feel love throughout it. Let people love you.
I’m not sure any day is textbook great, but find the good in every day and celebrate it. (Sometimes it was a wet diaper, or a successful, tiny wean of a drip.)
We are all on the same team! Know your emotions and when you need help. You are in a center of people who have seen this before. Their whole profession is dedicated to children, yours especially. If they advance the care of just one, they feel their endless, tiring work is worth it. At times, I felt they were the bad guys. The truth is that Congenital Heart Disease is the bad guy. Talk, cry, send emails, read, call a nurse every hour when you’re away, and reach out when you feel you might drown. It’s rough water, but there are floats! You’ll find them within that medical team that loves your child also!
Normal is only a frame of mind! My biggest fear initially was that our lives would be so drastically changed, and that we would not be able to find joy in our lives like we did in the past. I really thought we may no longer be us! However, some things have gone to the backburner, work truly is never the same, and there’s always the fear of a lingering hospital stay. But, guess what! Just like every other chapter in your life, you will move along with resiliency and adapt a new normal.
This was definitely the biggest surprise of our life. I’m sure it is yours also. We found out very late in pregnancy, relocated, left our jobs, and had no idea what to prepare for in such a state of grief. I made myself a promise to not become bitter. It was one of my best ideas. I also learned early on that I couldn’t compare my sons story to anyone else’s, and that really no one in my circle (while heartbroken also) could ever grasp what we felt, had seen and lived through every day, and what we needed to hear or feel. Love them anyways! Lift yourself up through them. Sometimes you have to teach people how to love you after things like this.
Be an advocate! Know your child’s conditions, and stay focused on their care. Bring awareness to CHD when you can.
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