Logan Love

I wanted to put this third story out earlier in the day today to give it enough time to resonate. I think it’s the most detailed and impactful account so far. When I created this week-long initiative, I did so with people like Lauren in mind. Lauren Miceli is my oldest first cousin, and she stepped up to tell us a story that I genuinely believe to encapsulate all eight values.

Here is her beautiful story about one of my personal heroes…

“It has always been my dream to be a Mom, to raise amazing little humans, teach them to be kind, compassionate, and hardworking people and to watch them make their mark on this world. Family mealtimes, bedtime stories, time spent together learning and growing and making memories, it was all those simple joys that excited me the most.

 After about a year and a half of marriage, my husband, Mike, and I had done all the “right” things to prepare for the journey of parenthood. We had both settled into our careers, finished renovating our little fixer upper, and had the space and time available.  We felt totally ready to welcome a baby. We were prepared.  Mid-twenties, young and fit, taking vitamins, working out, eating healthy… doing all the things the literature says to do perfectly in order to have healthy child. Almost immediately, we got a positive pregnancy test. Our lives as we knew them were about to change forever. I immediately started dreaming of holding our baby in my arms for the first time and what that would be like.

I began to envision feeding the little guy or gal for the first time. I started reading up on everything I could to be as prepared as possible, from making homemade baby food, to finding the best childcare options for when I returned to work after maternity leave. As most young couples do, we had the highest and most wonderful hopes and dreams for our little bundle to be. I dreamt about spending the next 9 months decorating the perfect nursery in our adorable little home, resting, eating well, and doing everything I could to make sure this little baby arrives healthy and safe. This baby was my new mission in life. This was my moment, I could hardly wait to be a mother to this new love.

I attended every doctor appointment with the utmost thrill and excitement to hear that perfect little heartbeat, wondering if it was a boy or girl. 13 weeks in, at a routine doctor appointment, they ran some tests that came back slightly abnormal. The medical team didn’t have answers yet, it was too early, and perhaps everything was still just fine. We would have to wait until the 20 week anatomy scan to see more. Mike and I felt like the wind had been knocked out of us, yet we were somehow hopeful that everything would still be just fine. After all, nothing out of the ordinary was supposed to happen. We started loving this child even harder, willing this baby to be healthy, to be ok, and carried on with the next 7 weeks with a positive, hopeful, and prayerful attitude. Our 20 week appointment came, I scheduled it for my birthday as a gift to myself, because I was so pumped to find out the sex of this baby and to find out that he or she was perfectly healthy and that all would be well just as we planned.

I will never forget looking up at the screen, holding Mike’s hand, and feeling such wonder and such love for this little baby who had grown and changed so much in just 7 weeks. As I stared at the screen I excitedly blurted out, “I know what it is! It’s a boy!” The sonogram technician was surprised I could read the sonogram and I was right. That day we found out we were expecting a son. The pure excitement and joy that we were feeling was quickly exchanged for fear and anxiety when we also found out that something appeared to be wrong with our baby boy’s heart. I would have to leave the doctor I had so carefully chosen for my pregnancy, to see a new doctor….someone who specializes in high risk pregnancies. Mike and I were heartbroken and devastated to find that our baby would face medical challenges from the very start. His entry into the world would be harder than anyone should have to endure. How could this be? We were prepared! There were no congenital heart conditions that ran in my family, or Mike’s….we are young and healthy, and how could this happen to our baby? And so continued our journey, our path to parenting had taken a serious turn down a terrifying road.  We had no choice but to trust in God and hold on tight for whatever ride was to come.

We loved this baby even harder, the thought that something could happen to harm him or cause him pain was unbearable. My pregnancy quickly started to feel like a dangerous medical condition with frequent Pediatric Cardiology appointments at John’s Hopkins. The new mission? To perform echocardiograms often enough to be able to track the baby’s heart growth week by week in order to formulate a plan for open heart surgery on our newborn. Pregnancy is supposed to be a happy time, right? A joyous time full of picking names, decorating a nursery, dreaming about the future. While we always tried our best to remain hopeful, prayerful, and positive, it was inevitable that the dread of handing over our newborn for open heart surgery would often overpower us with fear. Appointment after appointment, that little heart of his kept changing, we always hoped it would change for the best, maybe the heart defects wouldn’t be so serious? Maybe he wouldn’t have to have open heart surgery, after all?

We learned more and more and more overwhelming information every day… after longing for this baby my whole life, I wouldn’t be able to hold him at birth. He might not be able to eat the traditional way, instead, he might have to intake his nutrition with the assistance of a feeding tube. No way, we thought. Our baby definitely wouldn’t have to eat with a feeding tube.  We were sure he would be strong enough to eat on his own. Our minds just couldn’t wrap around so many scary and unnatural possibilities. Oh, and one more thing, he might need more than one open heart surgery, he might need three. But there was no certain way to tell until birth.

My pregnancy continued and we tried our best to learn about congenital heart defects, prepare for something we couldn’t imagine. I met the world renowned Pediatric Heart Surgeon, Dr. Luca Vricella, who would perform our baby’s surgery. I remember the day vividly, I remember shaking his hand and putting complete faith in this man I had only known for two minutes. I was shaking the hand of the man who was going to try his best to save my baby’s life. He gave me one instruction, “Give me a big baby to operate on. Big hearts are easier to operate on than small ones, with a higher chance of success.” I had my marching orders and I took them seriously. He wanted me to try as hard as I could to carry to full term, the longer this baby had to grow the bigger his heart would be.

Baby boy and I made it to 40 weeks to the day, full term plus some. My labor was induced and after over 24 hours of labor, I ended up in an emergency c-section at 3am. There he was, Logan Michael Miceli, a full head of black hair, screaming away with loud strong lungs….coming in at a petite 6lbs 11oz. I caught a glance of my perfect little boy I had longed for my whole life, in a covered plastic incubator being rolled out of the room as I laid on an operating table mid surgery. Not at all the way I’d always imagined. I was finally a Mom, and they took him away before I could even touch him. I remember it now as one of the bravest, yet saddest, and most helpless moments of my life.

Logan was to be taken to the NICU, but it was full, so he was taken to the PICU. The Pediatric Intensive Care Unit. I was unable to see him for almost 24 hours. I was on a different floor recovering from a massive abdominal surgery, unable to get out of bed. Mike went immediately to be with him, to call me from the PICU, to let me talk to my newborn through the phone. Over the next 24 hours we found out Logan would need three open heart surgeries. One at birth, the Norwood, the most dangerous. The second at 6 months, the Glenn. The third around age 4, the Fontan.

My heart was shattered, the emotions I was feeling were a wide range from devastation, to guilt, to the worst sadness possible as a parent knowing your child has such a battle ahead. I got to hold him as soon as I could before his surgery, we had the most tender and precious moment and Mike and I both encouraged him to hang on, promised him a life of love and happiness and a family who adores him if he could just hold on to meet them all and get to live his “real life” not this yucky hospital life. We told him all about what his real life would entail, his dog Brody at home, love and laughter and snuggles and blankets, no more wires and beeping. I told him he was handsome, strong, and brave. He seemed to be listening intently and loving me as much as I was loving him. It was our first real bonding moment and although not as I originally imagined it would be, between the wires that entangled us, it was perfect in its own way.

Logan’s first surgery lasted 13 hours but his chest remained open for 5 days, until it was able to be fully closed. This child of ours, we quickly learned, was a fighter. He wasn’t going to miss this life we promised him. There were ups and downs, there were infections, there were 9 long weeks of hospitalization until Logan could be discharged home. I learned what it took to be a mother. I was determined to be the best mother this child could ever dream of, because that is what I promised him.  That is what he fought for.

I also learned what the phrase “it takes a village” really means. Our family rallied. What incredible family and friends we have. They made us meals, they drove me to and from the hospital every day for 9 weeks as I recovered from my own surgery.  They made an exquisite garden outside of our house on my first Mother’s Day, so when Logan arrived home, he would have the most beautiful flowers as a welcome to his real life. We earned the nickname ‘Team Miceli.’ I pumped breastmilk around the clock, and we fed Logan via feeding tube every 2 hours 24 hours a day. Our family helped tremendously by providing “the patchwork quilt of childcare” as we lovingly called it, which included at home babysitting when it was time for me to return to work 3 short weeks after Logan arrived home. That way, he wouldn’t be exposed to the germs and general public at a daycare, which would have been dangerous to his health.

Logan thrived under the loving care of Mike and I and our whole family, it really did take a village, but it worked, we worked together to keep him healthy, happy, and loved him beyond measure. He was the happiest, most content baby despite the medical challenges before him. Six months came and went, and so did his next surgery, the Glenn. Logan aced it and was in and out of the hospital in 9 days this time, instead of 9 weeks. We were off to the races.

Life with Logan was full of “Logan Love,” as we called it. Logan loved everyone unconditionally, his personality was always pleasant, despite anything that was medically unpleasant in his life… so much so, that we would go for months at a time without hearing him cry. That’s truly not realistic with any baby, but it was for Logan. He learned to talk, he learned to crawl, and walk, and RUN. Everything he did took extra effort because he was working with half of a heart. Logan worked hard at learning how to eat, although eating never came naturally. So, we did what we had to in order to help him thrive and grow. The feeding tube was here to stay and that was ok, we learned to roll with it and it didn’t slow us down. Logan got to go to pumpkin patches in the Fall, build snowmen in the Winter, go for neighborhood walks in the Spring, and go on epic family beach vacations in the Summer.

He truly knew what it meant to have fun, and also to be loved. This was the real life we had promised him, if only he could survive that first surgery. We were a happy family, we had our baby…who was now almost a preschooler. Life seemed to be starting to normalize for us, we could relax a little about medical issues for a while, the doctor appointments were getting farther and farther apart, and incredibly, Logan stayed so healthy he wasn’t even hospitalized ever again after his 6 month surgery until he was almost 3 years old. Normal childhood development and happiness and relief for all. How I wish with all my heart that is how Logan’s story could have continued on forever.

January 30th, 2016, two months before his third birthday, Logan was diagnosed with Acute Myeloid Leukemia (AML), a deadly form of Leukemia very rarely seen in children. Our world came to a crashing, absolutely devastating halt. Logan had fought so hard to live, why would God allow him to suffer like this? It wasn’t fair.  After immediate hospital admission and a month of Chemotherapy, the treatments proved to be way too much for our precious little soul. Mike and I held, sang to, and rocked our perfect little warrior that March evening in the PICU, and Logan’s life on earth ended peacefully, warm and safe, in his Mama’s arms.

Although, Logan didn’t live past the age of three, he certainly made his mark on this world. Mike and I are better people for having known and loved this special little boy, in fact, countless friends, family members, and medical staff have all agreed that they have been changed for the better, in one way or another, after knowing and loving Logan. We are so proud to call him ours. Logan was a gift in our lives that helped teach us how to love more deeply, appreciate the things in life that are truly important, and to be compassionate to every single person we meet… because everyone is fighting a battle we know nothing about. We learned one can never fully prepare for what life will bring, there is always a greater plan, even if we don’t understand why. We loved this little boy so fiercely and always will. Mike and I have faith that Logan is safe and happy, and that we will see him again.

To bring continued importance and meaning to Logan’s life, we founded Logan’s Never Be Alone Foundation. A 501c3 non-profit organization that raises funds for families with critically ill children in the PICU at John’s Hopkins Hospital. The funds are given to the families to alleviate some of their financial burden so they can worry less about returning to work to be able to pay their bills, and more about staying at the bedside of their ailing child. We know Logan would want every seriously ill child to have a parent present at their bedside and we do the best we can to help that become a reality for the families we assist to honor Logan and his legacy.

In 2017, Mike and I were blessed with a baby girl. We are sure Logan sent her to us straight from heaven. Our baby girl’s name is Faith, a tribute to her big brother. We have faith that Logan is safe and happy and faith that we will meet our handsome, strong, and brave boy once again.”

If you would like to help provide financial assistance to the parents and children still fighting their medical battles in the PICU please visit www.neverbealonefoundation.com to donate. The Miceli family thanks you in advance for your support!

Until tomorrow, blessings to all…

-B.F.

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