This is a guest post written by Rachel Powers:
Shortly after my husband and I found out that baby #2 was a boy (our oldest is a girl), we tossed around nursery theme ideas. We decided to create a C.S. Lewis/Narnia-inspired nursery with lions (who doesn’t love Aslan?!). We hung up quotes on the wall like, “Courage, dear heart” (C.S. Lewis) and, “Be Brave.” We never thought our son’s nursery theme would turn out to be so prophetic.
Jeremiah David Powers was born on January 28, 2017. I had a successful VBAC, Jeremiah was breastfeeding well for a newborn, he passed his Congenital Heart Defect (CHD) screening and newborn hearing screening, and his vitals were within normal limits. We were all set to be discharged 2 days after delivery, when a pediatrician doing rounds heard a heart murmur, so he set us up with an appointment with a pediatric cardiologist for the following day.
Although we were discharged and home, we had an unsettling feeling that we would be receiving some life-changing news at the cardiology appointment. At the appointment, after an echocardiogram, we received the news that Jeremiah had a CHD called complete atrioventricular septal defect (AVSD) and would need open heart surgery in his first 6 months of life to repair his defect.
Complete AVSD repairs are typically done between 3-6 months old, giving babies a little more time to grow in order to tolerate a successful open heart surgery. A baby’s heart is the size of a walnut at birth, and obviously very delicate! Imagine operating on something the size of a walnut! Crazy. So, he was sent home to grow, was on a couple diuretics to help rid his body of excess fluid, and we waited until his little body absolutely needed the life-saving surgery, before his heart enlarged too much, and before irreversible damage to his lungs kicked in.
We sought a second opinion from Cleveland Clinic Children’s Hospital after learning about one of the surgeon’s expertise and excellent outcomes in repairing our son’s specific CHD. After meeting with the team at the Clinic, we switched our son’s care there (when he was about a month old). Jeremiah received close care and monitoring prior to his surgery. He received numerous echocardiograms and electrocardiograms while he grew in order to have the best chance of tolerating a successful repair of his CHD. He received weekly visits from home health nursing to check his vitals and weight gain. He was exclusively breastfed, and I fed him pretty much hourly and on-demand in hopes to avoid an NG tube pre-op. Jeremiah gained the minimum acceptable weight (about a pound per month) per our cardiologist, and we were able to exclusively breastfeed the entire time.
Jeremiah’s symptoms really started to show at a month old. He had a higher than normal respiratory rate, he retracted when breathing, would sweat when eating, fatigued quickly, turned blue around the mouth (perioral cyanosis), would vomit when crying, was failure to thrive, and had a dusky skin color. We were in isolation for the 4 months pre-op and only left the house for doctor appointments. A virus could have been fatal for Jeremiah with an already failing heart.
Jeremiah underwent open heart surgery at 4 months old in June 2017 to repair the holes in his heart and split/reconstruct his common atrioventricular valve into a mitral valve and tricuspid valve. He spent a week at Cleveland Clinic Children’s after his surgery. The one-on-one care that he received in the PICU was amazing, and we are certainly thankful and grateful for the nurses, doctors, respiratory therapists, anesthesiologists, perfusionist, and all other medical personnel involved in his care.
After Jeremiah’s open heart surgery, he began to thrive. His personality came back stronger and more incredible. He is able to grow and gain weight now. On the first day that his sternal precautions were lifted, Jeremiah repeatedly rolled over during “tummy time.” Prior to his surgery, he would fatigue quickly and was not able to lift his head with ease or roll during “tummy time.” He is reaching his milestones and continues to amaze us every day. He’s 14 months old now, he can walk (though he still prefers to “speed crawl,”) enjoys climbing stairs, loves to be out and about, likes to watch big sis play, and loves his dog. He is truly our courageous and brave little baby, and we always say that he has the “heart of a lion!”