March has arrived and with it our Heart Hero Ian turned 3. Ian was born with half a heart -HLHS (Hypoplastic Left Heart Syndrome) How can one survive with only half a heart you might ask? Well, not everyone does. But through miraculous surgical interventions starting days after birth it is possible for most kids. The protocol involves three complex open-heart surgeries named the Norwood, the Glenn, and the Fontan.
When it comes up about Ian’s heart and the journey we’re on. Many people respond in surprise because he looks so healthy! They are also flabbergasted trying to wrap their minds around how they would or could handle such a health crisis if it had happened to their child.
The truth is it can’t be handled alone. The weight of it all will crush you, the fear will be paralyzing. When you receive the kind of news we did ~5 months into your pregnancy it feels like a punch to the gut, where the wind gets knocked out of you. You’re left gasping for air. The word “Pneuma” in Greek has a double meaning it can mean “wind” and “spirit.” For some this can lead to a spiritual crisis. The prospect of such things as the heart-lung bypass, aortic reconstruction, shunts, stents, breathing tubes, feeding tubes, open chest wounds, all to a small innocent little baby necessary for a chance at survival. It wrenches not just your heart, but your soul.
There was only one thing to do…Trust God. We prayed like it all depended on God, and acted like it all depended on us. We asked everyone and their mother and their mother’s mother to pray for Ian and a miracle. We researched and asked God if it not be his will to heal our son to lead us to the best hospital and doctors. I read something from another heart family that said,
“Give God your trust and he will give you his peace.”
We had to conscientiously keep our focus on Christ or we would crumble. I don’t think I ever knew what real fear was until this journey with Ian and his special heart. And if I’ve never really been afraid, have I ever really trusted God? We leaned on God and each other hard.
“Having a sick child can be depressing. Fear like a sneaky rodent nibbles away when you’re not looking. Nibbles away at what? My heart, my soul, my well-being. But I know that it is the devil trying to use fear to steal my joy, to steal my hope. So I keep my eyes on Christ. Christ is not just my King, but my Comfort, and my Conqueror. I cast out all doubt and trust fully in His plan. We all have plans for our lives, a Plan A if you will. But what we need to follow is Plan G, God’s plan. For God’s plan brings us the greatest graces and gives God the greatest glory!” ~Regular Joan
Our situation was trust or bust. Take the peace he offered us or fall to pieces with worry. We turned over all our burdens to God and placed our son and our family completely in His hands. When you put things in God’s hands prepare to see His fingerprints! We needed a friend and mentor and one appeared in Fr. Jairo Restrepo.
Fr. Jairo was Scott’s parish priest as a teenager and married us ten years prior to Ian’s birth. Disappointingly, we rarely saw him in the six years we lived in Idaho in large part due to the fact that his church assignments were out of our area. He made a special effort to come and baptize our two daughters. Fr. Jairo’s love for children has always been apparent. Even in the naming process of our daughters, we entertained Jairo as a middle name, however being girls, it was not to be. Well, as fate/God would have it, Fr. Jairo got moved not just to our area, but to our parish in Nampa at the exact same time we found out we were expecting for a third time! What timing! I knew this baby would be special from the beginning. I literally took a pregnancy test in the church bathroom of Sts. Peter and Paul Catholic Church in Grangeville on the feast of Sts. Peter and Paul! We were travelling up there for a half marathon and I needed to know to what extent I could celebrate that night. That was the very end of June 2014 and Fr. Jairo started in Nampa July 1. It wasn’t until October that we found out it was a boy and got our devastating diagnosis. We turned to Fr. Jairo and he gave us good counsel, telling us to name him as soon as possible and to start a devotion to Divino Niňo.
Ian, short for Sebastian, was named after St. Sebastian. St. Sebastian lived in the late 3rd century and was a covert Christian serving as a captain of the Emperor’s guards, he used his position to encourage other Christians during this age of persecution. In 286, he was discovered and sentenced to death by a firing squad of archers. He was shot full of arrows and left for dead, “like an urchin” an early biographer described. Miraculously he did not die, but through strength and perseverance was nursed back to health. Most people in this situation would flee for their life. But courageous Sebastian confronted the Emperor Diocletian himself denouncing his inhumane treatment of the Christian people. He was then martyred a second time. The strength, courage, and perseverance in the face of adversity inspired us to name our son after St. Sebastian.
Ian is also a form of John (Scottish). St. John of God is the patron saint of heart conditions, his feast day is recognized as either March 1st or 8th (Ian’s birthday is March 2nd his due date was March 6th). Fr. John Rizzo is the Italian priest that served as a missionary in Colombia and received the original message from the Divine Child (aka Divino Niňo) to “Take Me with you.”
We named Ian, Sebastian Jairo Naugle more than 3 months before his birth.
Fr. Jairo was shocked because his father’s name was Sebastian too! Here we wanted to honor Fr. Jairo’s legacy and we did so even more than we knew! Fr. Jairo only stayed in Nampa for one year an unusually short assignment. God sent him to us to encourage us and to assure us that God would be able to use this cross for our own personal growth and for his glory. In January, we went to the annual March for Life in Boise featuring a pro-life speaker, as we had made a habit for several years. We once again felt God making his presence known to us. Of all the pro-life speakers available in 2015 a 12-year-old girl with HLHS and her mom were featured. (HLHS the exact same rare heart condition as Ian’s!)
We saw his fingerprints so many places. Some say seeing is believing, but for us believing was seeing. There were many difficult moments when we had to walk by faith, not by sight. But because we could see God at times with such clarity, it made it so much easier to have the faith we needed to walk through the rough parts. We were faithful to God and he was faithful to us. Ian was life-flighted to Los Angeles, CA at 2 days old where there is a highly specialized pediatric cardiac surgical team and ICU. Someone in an elevator even commented that Ian’s head surgeon Dr. Starnes was as close to God’s hands as you could get. At one week old we had to completely trust the hands of God as we let go of our son and said good bye for what could be 4-8 hours, or could be forever. Our surgeon was known for having some of the fastest bypass times in the world. We’d also heard the hours feel like an eternity. After we said our good bye, we headed to the chapel of the hospital. This hospital was recently expanded doubling in size and we’d been spoiled to be in the new areas thus far. However, in 2015 the chapel was still in the old part of the building, and could be described as a glorified closet. There was a Buddha statue on one wall and something Zen-like on another, a plain cross, and some pretty stain glass windows. Then there were two kneelers and to our surprise two statues. One was the Sacred Heart of Jesus that looked like it was at least 40 years old. The other one was a fairly new Divino Niňo! We’d never even heard of Divino Niňo until a few months prior and here he was….of course he was.
We ended our prayers by saying a Rosary- the entire thing Joyful, Luminous, Sorrowful, and Glorious Mysteries. This is over 200 Hail Marys and within minutes of finishing it, we got the call that Ian was out of surgery in record time! Praise God! It wasn’t just Jesus watching over us, it was our Blessed Mother as well. It was more than just “watching over us” in these surreal fingerprint moments it was more like Jesus had sat down next to me while I was in daze and gave a friendly nudge with his elbow, “Hey, I’m right here.” One piece of advice that I got from a friend to help cope during the times I couldn’t hold Ian was to ask Mary to hold and comfort him. So, I did, and she did. And in comforting Ian when I could not she comforted me.
It was so hard to see our son in such a fragile state. As a parent seeing your child struggle is one of the hardest things. We became a reflection of our son, when he was blue (literally) we were blue (figuratively) and in those early months of life he was mostly blue. We clung to every sign of hope as he slowly showed signs of progress during those first days after surgery, but were devastated when he fell short of benchmarks like breathing on his own. It was such an emotional roller coaster and so hard for our family to relate to our anxieties. Who can relate to having a child alive only because he is hooked up to 6 different machines? And then a passing word of encouragement to a fellow Heart Mom developed into a friendship. After complimenting her on eating healthy for baby, we struck up a conversation. Most of us moms were all pumping our brains out storing milk for the day our babes would hopefully be healthy enough to digest milk, in the meantime they subsisted on what we called intravenous Gatorade. After our short conversation she wanted to introduce me to her Josie. Would you believe that Josie had recently been given a statue of Divino Niňo from her great aunt and had it prominently displayed in her room?! We became fast friends with Josie’s parents. And I know that God sent them to us, and us to them so we could encourage each other.
Why was it that while in such a low place in our lives we saw so many glimpses from high places? I have only told you about a few of them. I believe it was the power of prayer. Not just our own fervent prayers, but those of family and friends living in heaven and earth. We had a litany of saints and relatives we asked to pray for us. It could also have been our willingness to trust God to the point of surrendering our will to His. Abba Father, He is the potter and we are the clay, the work of His hands. Put your life in God’s hands and see His fingerprints as he shapes and molds you. God has made us into better people through this hardship. Our marriage is stronger and the love we have for our children is more ferocious. Our faith is unbreakable and there are other fruits as well. As we look to the future Ian will have to have his Fontan in the next 3-6 months. We seek and surrender to Plan G; it is trust or bust. Jesus, I trust in You.
Happy Feast Day St. John of God, patron saint of heart conditions!
SteveMarch 8, 2018
Brought tears to my eyes as I relived those moments 3 years ago now. Loved the part about asking our Blessed Mother to hold our children in her arms when we can’t hold them in our own. Ian is so precious and so full of life. God bless you all.
ElizabethMarch 8, 2018
Thank you so much for sharing your story and how one can have even an ounce of peace with the storm of fear and axiety, ( I am trying to face the first year as well and oh my). Reading this shines a light on our tunnel as we travel through on this rollercoaster ride. We live in Colorado and attend CHCO, however my parents live in Boise and I have been hesitant to visit due to not knowing where to go if we need assistance. Our heart warrior is currently 6 months post Glenn. This gives me a new hope of visiting my father who is a heart patient as well in Boise.
EmilyMarch 8, 2018
God bless you! You are right it is good to know where to go just in case whenever you travel. Luckily post-Glenn things are MUCH less scary than Interstage. God is good. Hope your HW thrives!
CarrieMarch 8, 2018
Emily, this is simply beautiful. I love, love, love it!! Especially “for us believing is seeing”….Right On girl! Amen!!!