I believe in the power of prayer. I always have. However, it was not until almost losing my daughter Hannah that I really saw and felt its power. Hannah was born on September 8, 2012 with a congenital heart defect that went undetected for the first four months of her life. Hannah was a tiny baby and what we thought was a “lazy eater.” She tried out easily while feeding, and as hard as I tried, I rarely could keep her awake. It was only later that we understood how hard her little body was working. She was gaining weight, but very slowly, and she was meeting her early milestones. It never crossed our minds that something could be seriously wrong. Then, during an evaluation by her doctor on February 4, 2013 for what we thought was just a cold, her lips turned blue from screaming at him (she has always been feisty!). Her doctor was immediately concerned and ordered more testing, which resulted in us visiting the local children’s hospital by ambulance. It was there that we learned about Hannah’s heart defect. She had what is known as AV Canal Defect, as well as heart chamber size issues, and these could only be fixed with open-heart surgery.
Never did I imagine that my child would need surgery at only four months old, but there we were. We did not think we would leave the hospital until after her surgery, but Hannah needed to get over her cold before they would schedule it. The hospital discharged us the next day, and we went home to wait. Just a few short weeks later, we went back to the hospital for her heart catheterization, which would determine the course of the surgery. We had great news from the heart cath – the repair could be done! The bad news was that Hannah was not recovering quickly from her cold, so we stayed that night in the hospital. We assumed that everything was going along as they should, but after we arrived at home the next morning, Hannah just didn’t seem to be doing well at all. We didn’t know what warning signs we should be looking for, so all we could do was watch and pray, and hope that she didn’t get any worse. However, a few short hours after coming home from the hospital, we chose to return. We were quickly admitted to the emergency room and attended to by some of the most wonderful doctors and nurses. They did an assortment of tests, and they admitted Hannah to the cardiac floor. We sensed urgency in their actions, but I remember feeling relieved that we were back at the hospital with people who were trained to know what to do. I felt completely helpless. Here was my precious child, seriously ill in the hospital, and I could do nothing to help her.
What happened next is the part of our story that I will never forget. The minute they transferred Hannah to her new bed on the cardiac floor, almost exactly at midnight on March 1, her heart began to fail. I saw the life begin to leave Hannah’s body, and my husband and I were immediately escorted out the room. The room swarmed with doctors and nurses administering CPR and other life-saving measures. From the waiting room, we had to call our friends and family in the middle of the night to share what was happening. Everyone came immediately to the hospital to hold us close and pray while we waited. Minutes turn to hours; decisions were made; doctors and nurses worked on her all night. It was the longest night of our lives. The trauma that Hannah had sustained was dramatic. She received CPR for close to 45 minutes, which resulted in broken skin and a red scan on her chest. By the next morning, however, doctors had successfully placed her on a ventilator and a machine known as ECHMO, which allowed her heart to rest while the machine circulated blood through her body. Unfortunately, doctors warned us that the prognosis was not good; Hannah was alive, but far from stable.
Struggle Brought us to our Knees
Sitting at the hospital, all we could do was wait and pray. Hannah’s struggle brought us to our knees like never before. We saw Christ in the faces of our friends and family who drove from miles and miles to minister to us. Please don’t even underestimate the power of your presence in times of need! You’ve heard it said that prayer changes thing, and I truly believe that now that I’ve seen how it changed our lives. Over the next 15 days, Hannah slowly began to improve enough for surgery. On March 15, 2013, Hannah finally had the surgery needed to repair her defect. I will never forget the faces of those who came to wait with us. The lobby was filled with church members and friends who sat and prayed with us during the surgery and rejoiced with us when the doctors delivered the good news of a successful surgery. Romans 12:15 lived out before our very eyes; God was showing his love through His people that day.
Hannah’s progress after surgery was remarkable. Even her doctors and nurses were amazed at how well she was doing. Seven days after open-heart surgery, we were discharged to finally go home. I remember being so scared to leave, and if I’m honest, I didn’t want to. I felt safe there. But God is bigger than our fear, and He helped to give us the strength we needed to face what was ahead. Isaiah 41:10 came to life for me during all of this – “So do not fear, for I am with you. Do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”
Unfortunately, the challenges didn’t stop after her heart repair, and what came next was almost as hard to bear. Almost two months after surgery, Hannah began to experience seizures known as infantile spasms. We were actually sitting in a Bible class on a Wednesday night when she experienced her first one. We rushed out to the hospital yet again and were admitted for further testing. We met with the neurological team this time, and they gave us grim news. Due to the trauma her body had experienced during cardiac arrest, Hannah had developed neurological damage as well. I had known that this was a possibility, but after watching her improvement, I honestly thought we had been spared. The neurological team told us that this type of seizure was difficult to treat, which was difficult to hear. There was the very real possibility that Hannah would have a severe disability, and she might never walk or talk. Seeing Hannah now, you would never know that, but there was a point in her life when it could have been reality.
Hopes and Dreams
In those early weeks after this news, I felt so much grief at the thought of losing the hopes and dreams I had for Hannah. It wasn’t supposed to be this way, but I had to come to terms with it. Yes, I asked God “why,” and that is OK. What I didn’t know at the time was that God was preparing me to have different dreams and hopes for my little girl. Probably even better dreams that I had dreamed before! That’s what is so great about God; He always knows better than we do. Isaiah 55:8 reminds us of that “For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord.” It doesn’t always mean that his ways are the easiest; this was definitely not the easiest way. But it has been our way, and God has shown us grace again and again.
Shortly after Hannah’s seizure diagnosis, she started a treatment that had a 50% chance of working. Thankfully, it was successful – yet another obstacle that Hannah has been able to overcome. Once the seizures were resolved, we were able to focus our efforts on helping her develop to her full potential. There was uncertainty about what that would be, but I was determined to believe in the best, not the worst. We became involved with a wonderful early intervention program, and Hannah had physical, occupation, and speech therapy. We especially loved watching Big Brother Lucas working with her to reach milestone after milestone, which I am so happy to say that she did. I quickly learned to do away with the milestone chart and just let Hannah get there when she gets there. And she will.
Happy and Healthy
Looking back on our story now, it seems like forever ago, but in some ways, it was just yesterday. The emotions are not as raw, but the realities remain. The trauma she experienced still creates challenges today, but Hannah is happy and healthy, which is all that we prayed for. The challenges that we face now are faced with the certainty that God knows best and will guide us along the way. I am grateful to God for the people he placed in our life during that time, and for the thousands who prayed on our behalf. I believe it is because of you that Hannah is with us today. Even now, God continues to use you. When I find myself weary with our current challenges, he uses you to remind me that God is writing a beautiful story – and what a story it will be.