finn's story: living with the heart of a warrior

IIt is an office visit that I will never forget. The ultrasound tech looked intently, way too long in the same spot. At the end, she said the doctor needed to come in and take a look. I immediately knew something was wrong. They both assured me that it may have been the baby’s position that was blocking a view of a part of the formed heart and that we would need to proceed at a high-risk clinic for a follow up. Deep inside I knew that it was more than positioning; a mother’s instinct is always on point. After a few long weeks, I went to see the high-risk OB/GYN and they confirmed my baby had a congenital heart defect, specifically tetralogy of fallot. They presented all the possible things that could be wrong and offered all the tests. Do you want to know if the baby has other deficits? I decided to get an amniocentesis that day. I just had to know what to prepare for. After another long three weeks, we received the call with the results, and they were 90% sure that our baby only had the congenital heart defect without any other deficits. That felt like a dream come true. The rest of my pregnancy felt robotic, with in-depth scans confirming the heart defect every time, though otherwise healthy. We kept the gender of the baby a surprise, but we learned all we could about his specific condition, connected with other “heart warrior” families, and involved ourselves with the organization Baby Luck, a small specialized group of a larger organization called Camp Luck at Levine’s Children’s Hospital. We met other families going through the same struggles, but one thing we came to understand --- never compare your journey to someone else’s. It is never the same. I had a c-section with my first-born daughter and the doctors were on board to have a c-section with #2, as well. The cardiac team was in the room, ready and waiting to grab a blue baby if needed. When the doctor raised the baby up for us to

see, I couldn’t believe my eyes; I had a son! We named him Finley, and he wasn’t blue! I was able to have skin-to-skin with him, took pictures and my husband, Mark, was able to cut the umbilical cord. Those first few minutes were such a blessing. He was whisked away and we met again in the NICU. Finn was a “star patient” per the nurses. Only one medication was required (which is why we had to stay in the NICU until surgery), and occasional oxygen in his nose. He was a pretty quiet baby, only crying when hungry or he had to pass gas. As the week progressed and we neared the surgery time, his oxygen saturation and other monitored numbers began to decline. It was so hard to leave him at night, but we were assured that he was well taken care of and we needed our rest to stay healthy for him. This was some amazing advice. At one week old, Finn underwent open heart surgery with a heart the size of a walnut. We thank God every day for skillful surgeons that can operate and mend a heart that size. We sent Finn off around 7:30am, walking to the operating room with him, holding his hand, and had to stop at the doors. Three hours later, we got word that surgery was successful. Finn was sent to the Cardiovascular ICU on a respirator, with at least a dozen wires and tubes attached to multiple pumps, but he had 1:1 nursing care. At just one week old, he looked so tiny in the huge hospital bed. We listened in to rounds each day that we could so that we knew what was going on. We were able to ask questions and be involved with his care, which was reassuring. As Finn progressed to decreased medications through those four days, we experienced a bit of a road bump. One of his lungs collapsed, requiring CPAP therapy. He was full of fluids, swollen and had a huge mask on his face forcing air into his lungs. He was able to overcome that within one day and we moved on to the last leg of our hospital stay, in the Progressive Unit. With the 1:1 attention no longer there, it prepared Mark and I for home life with this little warrior. We learned how to clean his surgery wound, breastfeed, change his diaper, and how to get him to sleep. After two full weeks, we were finally ready to head home, but were we ready for this? It seemed like we were always headed to doctors during the first few weeks, but Finn was growing and his heart sounded great (though his heart will never sound like a ‘normal’ heart). As Finn has grown, we definitely forget that he has had heart surgery, but a visit to the cardiologist every three and now six months for a checkup and 3-year-old Finn with sister, Olivia, mom Dana and dad Mark

often an echocardiogram and an EKG, we are quickly reminded that our little guy still has a special road ahead of him. Since that release from the hospital with that little 2-weekold baby, we have only had one major event, requiring a surgery to place a stent. For now, he is a busy, rough and tumble little guy without restrictions and without medicines, living his best life, and we are so grateful for that. We know that at some point, he will require a placement of a pulmonary artery. When? No idea! We continue with his regular monitoring and when the time is near, we will plan for it. For now, he is rocking that open-heart surgery scar like a badge of honor and we couldn’t be any prouder of the lives he has impacted thus far. To read more of Finn's journey, go to theunchartedvoyageofbabydegan. blogspot.com/.

Dana is a mom to two children and has been married to husband, Mark for nine years. She grew up on a dairy farm in Wisconsin and because of that lifestyle, has a passion for healthy living. She went on to get her degree in human nutrition and works as a registered dietitian and shares healthy living tips on social media. She is self-employed as a health influencer and also owns Green Jeans Consignment, a seasonal women’s event in the Charlotte, North Carolina area. connexions 27