Leah's Story
Leah was born March 2017. It was discovered during an ultrasound that she had a severe heart defect known as Hypoplastic Left Heart Syndrome. Our family prepared, best we could, to welcome this special baby into our lives. We had no idea how much our family would change through this experience.
There are moments in life when you know something has happened that will alter everything that comes afterward. December 9, 2016 was just such a day. That is the day that I heard during an ultrasound that my baby's heart had not developed correctly. Not only did she have a congenital heart defect, but it would take a minimum of three major surgeries for her to survive. The doctor explained how we would be referred to the congenital heart center and would get the diagnosis confirmed. I admit that I spent the weekend scouring the internet for all the information I could find about heart defects. Marcus and I prayed and cried over what we might hear the next week. It was our decision that day that we would love our child no matter what the outcome. We would seek joy through the struggles and find peace in knowing that we were being blessed with a precious life.
On the sixth day of Leah's life she had her first heart surgery. There is so much I could say about each one of Leah's surgeries, but I will summarize what we learned. The first major lesson was in medical terminology. Cardiology is a tough subject folks. What is a SAT, MAP, and CVP? Are we concerned about NIRS today? What are her I's and O's? It all sounds like gibberish to a new heart family. We did our best to learn all we could about HLHS, but even then, no two kids are alike. The textbook definition does not necessarily translate to your kid. We had to learn Leah. How did Leah respond to that medication? Does that therapy strategy work for Leah?
I personally had to battle through the frustration of not holding my baby while she recovered from surgery, as well as the grief over not being able to breast feed her, as I had done with my other two babies. There was the struggle to spend time with my older children without feeling guilty for leaving Leah at the hospital. There was a constant inner battle raging over whom I felt needed my attention the most. I simply could not be in all the places I desired to be. I struggled to learn that self care is not selfish. These are common problems for heart moms. We grieve the life we expected to have with our baby and try our best to hope for a future that is far from certain. So, when we were able to take our sweet girl home after 48 days in the hospital, our whole family rejoiced! We were together at last.
Our family had roughly two months at home together before Leah's next big hospitalization. We tried our best to soak up those precious moments together. This was fairly easy for us since we had to protect Leah from germs and only took her out of our home for doctor visits. Leah, we discovered quickly, ran the show. A medically fragile child is a lot of work . We weighed her daily and checked her oxygen saturations frequently. All of this was reported every few days to the cardiologists. I remember feeling overwhelmed by the medication schedule Leah had interstage (between her first two surgeries) and if I had known they would triple after her second surgery, I would have been more appreciative of our relatively simplistic schedule. As in all our lives, hindsight is 20/20. At the time we were nervously awaiting the news that our next surgery was coming. It loomed over us.We always knew that Leah's second surgery was on the horizon, it was just a matter of time.
I am so thankful for the small mercies the Lord gives us. Not knowing what the future holds can drive a Type A personality, like myself, a little crazy. I want to plan. I want to know exactly what is going to happen and when. That is NOT what life with a heart kid is like! I have personally had to learn that sometimes not knowing where things are going and what would happen is actually a blessing. In this case, not knowing that Leah's second surgery and recovery would span 10 weeks, was definitely a blessing. A heart family has to learn to take the journey day by day, sometimes even just hour by hour.