It had been a relatively easy pregnancy, just like my first pregnancy - I delivered a son. This time, we were expecting a girl and we couldn’t have been happier. She arrived in her own time, two and a half hours before I was scheduled to be induced. I had the regular ultrasound to determine the baby’s gender and there were no problems noted. There was nothing to suggest anything other than a healthy baby.
The delivery was easy and Paige seemed like a perfectly healthy little baby. Of course they whisked her away to the nursery shortly after she arrived and I was taken to my room. I remember it was around noon and a friend of mine had come to visit. She couldn’t wait to meet Paige and I was beginning to wonder what was taking so long to bring her to me in the room. The phone in the rail of the bed began to ring and when I answered, the fast-talking voice of the pediatrician informed me in a rather brusque manner, that my perfect, healthy little girl was in fact, not healthy at all.
The pediatrician told me that there were problems with Paige’s heart and she would need to be taken to the hospital in St. Louis immediately. My stomach started to turn and my heart was pounding in my chest. My friend later told me that my face turned as white as the sheets on the hospital bed. Everything seemed to be happening too fast as a nurse and then my husband, came into the room. The nurse used a soothing voice to try to calm me down as they brought my baby girl in to see me before taking her to the Neonatal Intensive Care Unit (NICU). I held her and tried to stay calm for her sake, but my insides felt like they had been twisted up like a pretzel.
Thankfully, the NICU staff determined that Paige didn’t need to go to St. Louis and later that evening we met with the pediatric cardiologist. He gently explained that Paige had a congenital heart defect called Tetralogy of Fallot (a.k.a. blue baby syndrome). This condition consists of four defects in the heart but thankfully Paige only had three of the defects. She had a hole (Ventricular Septal Defect – VSD) between the two lower chambers of her heart, pulmonary stenosis and hypertrophy of the right muscle in her heart. The doctor explained that the condition would have to be repaired or she would eventually die.
We were able to take Paige home only three days later but two weeks after she was born, she experienced a sudden drop in her oxygen level and had to be flown to Children’s Mercy Hospital in Kansas City for an emergency procedure to address her pulmonary stenosis. After four days in the hospital, we returned home with our sweet baby girl.
The next few months were full of worry. We worried that she would get sick so we didn’t take her out much. We worried when she didn’t eat quite right or sleep like she had the night before. I was constantly carrying her into different lighting in the house to see if she had the telltale blue color around her eyes, mouth and nose. Was it worse than yesterday? I called the cardiologist a lot.
Paige grew unlike most babies with her condition. In fact, her big brother called her “Pudgy Paige”. Most babies with TOF don’t have their repair done until they are close to a year old because they want them to meet a certain weight requirement. But Paige was so “fluffy” that our cardiologist was able to submit her case to Children’s Mercy for surgical consideration when she was about four months old.
We went up to Kansas City the day before her surgery for blood work and a meeting with the surgeon. His hands were huge and I sat in his small office wondering how his hands would be able to repair the tiny heart of my sweet five-month-old girl.
The night before surgery was spent at the Ronald McDonald House near the hospital. We had to wash Paige’s chest with a special soap and of course she couldn’t eat. We took pictures in our room and the whole time I was thinking about how these could be the last pictures I would ever take of my baby girl.
The next morning came too soon. I remember sitting in the waiting room, feeling sick to my stomach, knowing that very shortly they would cut my sweet girl’s chest open to fix her tiny, broken heart. I remember when they called us out into the hall and my husband, our pastor, and who I assume was an aide, escorted us down a hallway to a set of double doors. There stood a nurse waiting to take my baby. It took every ounce of strength I had not to turn and run back down the hall with my girl. Tears began to roll down my cheeks as I handed Paige to the nurse who promptly turned and walked through the double doors. In that moment, I thought I might not see her alive again.
We went to the surgical waiting room and spent the next eight hours getting periodic updates on the surgeon’s progress. I vividly remember asking my brother to take my son out of the room if we got bad news. I didn’t want him to see his mom fall apart and I wanted to prepare for the worst. I remember we were the only people in the room with the exception of the lady at the reception desk. It’s funny how the mind can recall those kinds of details even though I felt numb in the moment. I thumbed through magazines but I didn’t really see them. And then suddenly, I felt a peace fall upon me. We had prayed with our pastor and I had prayed to God to guide the surgeon’s hands and bring Paige safely through the surgery, but I had not felt a peace about the surgery until that moment in the waiting room.
Our family, our friends and our church family were all praying for us, and when I look back on that day I know my peace came from God as a result of those prayers. I know that God gathered me in his arms and let me know that my baby girl was going to be okay. He did guide the surgeon’s hands and He brought my sweet Paigey through that surgery. We spent 15 days in the hospital while she recovered, but we brought our baby girl home.
On January 29, 2016, we celebrated as Paige turned nine-years-old. She has played soccer, basketball and t-ball, and she currently tumbles, jumps and swings around at gymnastics. Paige is also a runner. Last fall she ran her first mile race at her school and she placed first with a time of 7:55. She is a smart, funny, beautiful, happy, healthy third grader. Her smile lights up a room and you can’t be around her without laughing because her laugh is contagious!
Paige still sees her cardiologist each year but all of her appointments have been positive. She still has some stenosis and eventually she will have to undergo a valve replacement but that will be when she is a little bit older. Her surgeon told us that by the time she needs that procedure, it will probably be an outpatient procedure.
I wanted to share Paige’s story because I know how terrifying it was to find out that my tiny newborn baby was not healthy. I know how guilty I felt and still feel about her condition. I know how overwhelming it was to care for a seriously ill newborn. I know how incredibly hard it was before, during and after the surgery. But I also know that God was with me and with Paige every step of the way. I know I cried tears of joy and relief when I heard about other babies like Paige who had grown up to be happy, healthy young girls. I know God has a wonderful plan for Paige and I am so thankful I get to be a part of it.