This is Bennett. He has Total Anomalous Pulmonary Venous Return (TAPVR). We didn’t find out about his TAPVR until he was almost 5 months old, which is rare with this type of CHD, it is usually caught at birth. We took him to his normal 4 months check-up with his pediatrician, the pediatrician heard what he thought was an innocent murmur but wanted to get a second opinion to be sure. A few weeks had gone by and we finally had our appointment with the Pediatric Cardiologist on Jan 21st, 2020. This date will forever be etched in my mind, as we got news no parent ever wants to get about their child. It was totally unexpected, as our boy was super healthy, he was on the small side and had been my entire pregnancy, but he was growing, just slowly, but no red flags.
I remember after leaving the cardiologist's office, my husband and I sat in the car in the parking garage and just cried and held each other. Bennett’s pediatrician called to check on us, because he was just as shocked to find out about Bennett as we were. I will forever be thankful to my son’s pediatrician, for catching this and sending us for a second opinion, as babies with TAPVR typically don’t make it to see their 1st birthday if left untreated.
We moved forward and scheduled a diagnostic heart catheterization, so the doctors could get a better map out of his heart. Shortly after that, we got the date for open heart surgery. My whole world was flipped upside down. I felt like I was in a dream.
I remember holding my baby in my arms the night before surgery and staring at him for hours, I was so worried that it was going to be the last time I held my baby. I studied every little detail of him. I wanted to remember it all. I prayed harder on that night than I had ever prayed before.
On the day of surgery, I handed my baby off to a nurse I had spent all of 5 minutes with and knew that a man I had met twice would be cutting into my baby’s chest. That moment was hands down one of the hardest things I’ve ever had to do in my entire life. The feeling is truly overwhelming and hard to explain to someone who hasn’t experienced it. It felt like many hours waiting for him to come out of surgery, but he did amazing! I am forever grateful to Dr. Shillingford for repairing my baby’s heart!
During his stay in the CVICU he was on and off the external pacemaker because he was experiencing some junctional arrhythmia and a low heart rate. His heart rate would be in the low 70’s when awake and high 40’s to low 50’s when asleep. Otherwise, he was doing amazing with everything else, especially, eating. The nights in the CVICU were sleepless, as his monitors went off frequently because his heart rate would drop so low when he was sleeping.
After a week, we were seeing a small improvement in his heart rate. It was now in the mid 70’s when asleep and mid 90’s when awake, so our team decided to take his pace wires out and send us home with a heart monitor. I was so nervous going home not having all the hospital monitors we’d become accustomed to or all of the nurses and doctors close by as we live almost 2 hours from Wolfson’s. Leaving the hospital was such a bittersweet day. I don’t think I slept a wink our first night home, I was constantly checking on him.
He will have to wear a 24-hour monitor in June to check his heart again, as he is having some extra beats in the upper chamber of his heart, so we are just having to monitor that, but otherwise, he is doing amazing!
This has been an emotional journey, but I find a lot of comfort in The Healing Hearts Support group! We also were so grateful for our hot homemade meal and the Heart Cart at the hospital provided by The Healing Heart Project! The coffee on the cart saved me many nights and days!
Bennett is the happiest, spunkiest little baby and a true warrior!
- Bennett's mom Meagan
1 year later:
