Leo's Story
At our 20-week ultrasound we found out that our son had a congenital heart defect called Transposition of the Great Arteries. We knew his first weeks of life were going to be hard. We knew he would need surgery and an extended hospital stay - about 10 days. We knew we were going to need help. We arranged for my parents and one of my sisters to come down and be with our oldest two children while we stayed at the hospital with our son. 2 of my closest friends were on stand-by in case we needed anything. We thought we were prepared. We were wrong. We were told that Leo’s heart defect was “textbook.” That if a child had to have a heart defect this is the one most doctors would choose (not that ANYONE EVER would choose to have a heart defect). His aortic and pulmonary arteries were switched, but it was fixable. They had one slight concern, and that was that he didn’t have a hole in his heart. I remember asking, “Well, isn’t that a good thing?” They answered, “Usually. In most cases, it is. Not yours.” Awesome. They were hoping that he would have a hole in his heart so that after he was born the blood could “mix” and be able to provide his body with the oxygen he needed to survive. They searched and searched, but no hole.
Leo’s birth was a blur. We were anticipating a smooth and easy delivery like my previous 2 children. I ended up with a very scary emergency cesarean. They didn’t tell me at the time because they didn’t want to alarm me, but they weren’t picking up much of a heartbeat from the baby. When I was in recovery, they showed me the printout of the fetal heart monitor. It showed really straight lines and a few blips now and then. Nothing steady. Very scary. Nothing like I was used to seeing.
The c-section was fairly routine, nothing out of the ordinary, but as soon as he was delivered I knew things were anything but normal. At the appointments before Leo was born, our OB, surgeon, and cardiologist would walk us through the plan for his delivery. We knew there would be an unusual amount of people in the room. We knew that things would move quickly. We knew there would be a chance that I wouldn’t get to hold him in my arms in those special moments after birth. I thought I was prepared for all of that. I was wrong.
Leo was born on December 9th at 4:34pm weighing in at 9lbs, 13oz. He was strong and big and the doctors say that helped him immensely. Immediately after birth he was given Prostaglandins to keep the PDA (which is a hole in your heart that everyone is born with and closes shortly after birth) open. It didn’t work. They rushed him out of the delivery room and straight to Vanderbilt Children’s Hospital. Luckily Vanderbilt Hospital, where I delivered him, and the Children’s Hospital are connected and he was there in a matter of minutes. The plan was to take him to the Cath Lab where they would make a hole in his heart to let the blood mix. Their first try was unsuccessful. The procedure finally worked, but not like they anticipated. In those first few hours there was talk of putting him on an ECMO machine which removes the blood from the body, adds the oxygen, removes the carbon dioxide, warms it and returns it to the body. It basically lets the blood bypass the heart and giving them a chance to rest. We came very close to having that happen, but thankfully, he didn’t end up needing it. In those few hours after his birth the doctors told my husband that it was minute by minute. He was a “very sick little boy”. Those are the exact words the doctors used and when Steve told me that it was like someone had laid a ton of bricks on my chest. Those are words that will echo in my ears forever. They are words no parent ever wants to hear. His first night was the toughest. His lung collapsed, he needed a blood transfusion and he was put on a breathing machine and was given paralytics to keep him from moving.
With the dawn of the new day you could tell that the doctors started to feel better. The lights in his room went from full on bright – high alert to dim and serene. The crowd gathering in and around his room dwindled as the hours past and the pit in my stomach started to close just slightly.
We were hopeful that he would have his open-heart surgery in the next few days. But it seemed like with every shift change new problems would arise. They though he may have been having seizures. They had him hooked up to the EEG for 5 days.
The first time the doctors came back to us with results they said he was definitely having seizures. At least a few. The second time they came back they said he was not having seizures. The third time they said he had 40 within a span of a few hours. The Neurologists never fully agreed on his diagnosis. Our surgeon believes he was not having seizures at all. I wanted to tell them to get their crap together and figure it out. Our next hurdle was the scariest part for me. The doctors were concerned that the deprivation of oxygen in those first few hours of life had left him with brain damage. They were preparing us for the worst. Next they were concerned about his fever and had him on a cooling blanket on and off for weeks. At 2 weeks old he was able to come off of the breathing tube and I was finally able to hold him in my arms. It was the very best feeling and one of the most amazing moments of my life when I finally got the chance to hold that sweet boy (and all of his wires) in my arms. They quarantined his room on 2 different occasions because of fear he had meningitis. They did 2 spinal taps. He didn't have meningitis. The state sent us a few letters telling us there was a high risk of Cystic Fibrosis. They did multiple tests - including one when he was a few months old. He doesn't have CF.
Needless to say, all of these things delayed his surgery. In my heart I knew that the only thing wrong with my boy was his broken heart. I knew that if he could get in that OR and have our gifted surgeon fix the problem he would be ok. In the days leading up to his procedure we would hold him and rock him for hours and hours I would barely even get up to sleep or use the restroom. Steve and I would just sit in his room, hold home close and binge watch Netflix:)
The day after Christmas 2014, when Leo was 2.5 weeks old, he had his open heart surgery. We sat with him and held him until 4:30am when the nurses suggested we try and get a little sleep since tomorrow was going to be a tough day. We woke up and got back to his room at 6:15am just as they were prepping to take him. Letting my tiny little baby be wheeled off in the huge bed was the hardest thing I've ever done. I am still surprised that I didn't immediately run after the gurney, jump in it with him and demand that they take me along. We were told his surgery could go anywhere from 5-12 hours.
The surgeons and the rest of the staff was amazing. They assured us they would be in touch via cell phone at least every 90 minutes or if something big were happening. They called about 7ish when they started anesthesia and he was responding well to it. They called again a little after 8 once they had made the incision and cut open his chest bone. They called again about 930 once they had started the "switch" of the Aortic and Pulmonary arteries. Another call came about 11am and they said they were working on the coronary arteries - the hardest ones to attached and take because of how very small and delicate they are. They called again about 130 and said they were getting ready to close and that we wouldn't hear from them again unless there was an emergency. It had gone well. It was almost over. I could almost (just almost) breathe again.
I remember answering the phone each time and gauging the doctors voice. I could tell each time he called it was hopeful, positive even. I knew if I picked up the phone and his voice was somber I needed to prepare myself. Each time it was hopeful. We were lucky. He even told us that he was staring right at his strong heart and that they were impressed with the size of his arteries. One time when size truly does matter;)
We went up to the PCICU (Pediatric Cardiac Intensive Care Unit), which had been our home for the last 2.5 weeks to pump and get our jackets. It would be at least 2 hours before we were able to see him. We put our coats on and walked out of the hospital and took a deep breath of the cool, December air. It was the first time we felt relief in a long time. He would have a long road ahead, but we had hope.
We walked across the street to the nearest place with alcohol and sat down together and had a beer. We counted down the minutes until we could see our son. Those 2 hours went by faster than we anticipated. Slower than usual, but faster than expected. We were so nervous to see him but could hardly get their soon enough.
We walked into his room and he lay there hooked to to every machine possible. A breathing tube, a chest tube, pacing wires and so many IV's. His incision wasn't closed with stiches or staples - just glue.
My dear cousin Jamie, who is a nurse in the PCICU, told us to watch the wires. Every time something came off - that was progress. That meant he was healing. That meant he would live. He came off of the breathing tube within the day. It was fast - they were all impressed.
His pacing wires followed and shortly after his chest tube. The amount of IV's lessened and we were moved to the regular floor in a week. He spent another week on the "regular" floor trying to learn to tolerate food and learn to nurse.
After many disappointing days and the start of a new year, January 6th arrived. We were released. We packed up our car - it was like we were moving cross country we had some many things from being there so long - and headed home as a family of 5.
The first couple of days home were a little nerve-wracking, but honestly as soon as we got there it just felt normal. We were given a stethoscope and checked his heart everyday and wrote down the beats per minute. We gave him all of his medicine and he just folded into our normal routine within a few days. We were home. He was doing so well. We were a family. We could breathe.
Since his surgery, he has done so well. I can't believe he is going to be a year old in just a week! He has been going to the neurologist, the cardiologist and the urologist and has been cleared so far. His echos look good. In the next month he will have a sedated MRI, Echo and one other procedure. They are hopeful he will now move to yearly checkups!
We couldn't be more grateful for all of the support we received from our family, friends and my amazing company. We are forever indebted to you all for your thoughts, prayers and kindness.
If you would like to donate to our fundraising campaign to support other families going through the same thing that we went through last year - click here.