Last year (2024), I lost my sweet baby boy Rafael Gregorio 15 weeks gestation. He was named after my grandpa (who passed away 2 years earlier). I was told after delivery that he he had trisomy 21. I am a Special Education Teacher that teach students with Trisomy 21 so this hit me in a variety of ways. That was a very hard experience. However, 6 weeks after delivery, I was bleeding out. I had to be rushed to the hospital for an emergency DNC because some of his tissue was left. That was more traumatic than the delivery. I think I have some PTSD from the night of the DNC.
We tried to get pregnant again months later. In March, we were pregnant again. I took the NIPT. At 11 weeks pregnant we were told that our baby was a boy and that we were high risk for Trisomy 18 (91%). The rest of the pregnancy was difficult…. seeing different abnormalities…People keep congratulating us….Planning for life and death.
I got myself an advocate and did alot of research about Trisomy 18. I was a aware of the typical outcomes.
Our boy’s name is Ramiro Giovanni. Giovanni means God is gracious. We were hoping that God would let me meet him alive.
I took it a step at a time (making it a point to celebrate small milestones) but it felt like the world’s longest pregnancy. This is also the first pregnancy that took maternity pictures. I wanted as many memories as I could make especially since I limited memories of my previous pregnancy. When the cardiologist said that Ramiro wouldn’t make it to 34 weeks, I wanted us to prove him wrong. We did.
We temporary moved my family to a bigger city (staying at the Ronald McDonald House) to try to delivery at the best hospital for cardiology in the state. My goal was to give him the best chance and have no regrets. I have no regrets about how I handled my first pregnancy lost. Though this situation was very different, I wanted to feel the same way…without regrets.
We had a planned Csection for November 11th 2025. However, the Thursday before at my ultrasound that was preformed to prepare for scheduled Csection, they noticed his heart was declining and placenta flow issues. Few minutes later, I was rushed into an emergency Csection. I delivery my sweet boy at 37 weeks and 4days. He was 4lbs and 1oz at 15.5 inches. 8 excruciating hours later, they let me meet him. His heart started to decline in my arms. We all said goodbye. However, it was not goodbye, his heart went back up. He was not ready to die.
At the moment, He is still alive in the NICU. I got my wish to meet him alive. I am so grateful for that. Now I am trying to make as many more memories as I can with this bonus time. Today, he is 1 week old and responsive to the interventions he received. Now we have more decisions that we need to make….interventions…surgeries and/or comfort care. He is a fighter. We understand that there is pain but we do not want suffering. I believe there is a difference between pain and suffering. We are trying to balance everything and make decisions we won’t regret but also decisions that won’t cause suffering . Right now, we are just being grateful for each moment we still have with our sweet boy.