In September 2024, after being told that I would never have a baby, even with the help of fertility treatments, I learned that I was pregnant. At 18 weeks pregnant, we went for our anatomy scan and learned that there were abnormalities with our baby boy’s heart, particularly concerning the right ventricle outflow track, pulmonary artery, and an inability to rule out a VSD. At 23 weeks, our maternal fetal specialist informed us that he suspected tetralogy of fallot, and at 24 weeks, we received an official diagnosis of TOF from our pediatric cardiologist. After this appointment, we felt prepared. I would give birth and my baby would gain weight until he was strong enough for surgery, and then all would be well. 

At 25 weeks, I was sick all night, throwing up and sweating. This wasn’t abnormal for me, as I had hyperemesis gravidarum throughout my pregnancy. I decided to go to the hospital, mostly to get an iv with nausea meds and some fluids. While there, I was put on monitors. I was asked if I felt any contractions, and I didn’t. However, I was having them, and consistently. I was checked, and the doctor confirmed that I was 1-2 cm dilated. I was immediately given steroid shots. Eventually, my contractions stopped, and I was sent home. About a week later, I noticed the faintest bit of blood while wiping. Out of an abundance of caution, I decided to go to labor and delivery, just to get checked. The doctors confirmed that my cervix was just irritated and that there was no concern regarding the blood. However, because I was on monitors, they noticed decelerations in my baby boy’s heartbeat. I was admitted and watched closely. A possible c section was in the air, but the doctors wanted to keep my baby in as long as possible. There were many close calls, especially a 10 minute deceleration that took many interventions to bring back up. At 27 weeks, I PPROMed. I had just gotten up from the bathroom and felt a gush of water. I immediately called my nurse over, and she called doctors in, and it was eventually confirmed that my water had broken. At 28 weeks and 1 day, Nemesio was born. While things seemed to be going well at first, we began to notice more frequent desaturations that couldn’t be explained by apnea of prematurity. Our cardiologist confirmed the occurrence of tet spells, and at one month of age (32 weeks corrected), we were transported to another hospital for cardiac intervention, particularly for an RVOT stent, as his pulmonary valve was obstructed, prohibiting blood flow to his lungs. Upon arrival, we were informed that the odds were not great for Nemesio, as the procedure that he needed had never been done on a baby of his size. He was 2 lbs 10 oz, and the minimum weight that they would’ve liked to see him at was 3.5 lbs, which they anticipated taking 4 weeks to get him to. Even then, a higher weight was preferred, and the bigger we could grow him, the better. Medical interventions were tried by the nicu in order to keep him stabilized, but after a few days, it became apparent that they were not working. At this point, we were told to call in our family to say goodbye. Nemesio was just too small and it was unlikely that anyone would want to attempt the procedure, and even if someone agreed, he was too unstable to withstand it. An amazing cardiologist came down to the nicu to speak with us and told us that if they could get Nemesio stable, then they would attempt the stent. After he gave some orders to the nicu team, Nemesio’s saturations rose from the 40s to 97. 

When discussing the stent, it was made clear to us that this was an incredibly high risk procedure, especially considering that it has never been done on a baby so small. However, it was the only chance we had. The surgery was a success, and Nemesio, previously intubated with 100% FiO2, was able to be weaned to no respiratory support. At this point, Nemesio is home. His current goal is to continue gaining weight and growing strong so that he is ready for his open heart surgery in 4-6 months. Funding research for congenital heart defects is so important because it makes it possible for these life saving procedures to exist.

My commitment to making a difference has led me to participate in the Congenital Heart Walk, an event that carries immense significance for me. It's not just a walk; it's a stride toward changing lives. This endeavor is all about supporting The Children's Heart Foundation and their crucial mission - advancing the diagnosis, treatment, and prevention of congenital heart defects through groundbreaking research.

I warmly invite you to become a part of this significant journey by supporting my fundraising efforts. Together, we can raise the funds essential to drive forward life-saving research. Your contribution holds immeasurable value to me.

Thank you for your generosity, and for standing beside me in this mission. Your support means the world.