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The Valleys and the Peaks of a CHD Pregnancy

The story continues... this is chapter 3. Chapter 3 is where I dive in about my experience with pregnancy, after receiving the diagnosis at only 16 weeks gestation. In the lack of a better word, I feel like I was robbed of the joys of a first-time pregnancy and the introduction into motherhood.

My new reality was I am a newlywed, only married for 2 months, and my son would live with a very complex CHD. Our neonatal specialist explained that due to being unable to deliver in Montana state, we had to choose among 4 major hospitals in the region: Washington, Oregon, Utah, and Colorado. After spending several days researching, we felt that the Aurora Children’s Hospital was our best option. Being one of the top hospitals for CHD in the nation, we felt the most comfortable with that choice.

The months leading up to our move was difficult. I remember walking into our guest room—the room we were supposed to be converting into a nursery; it was full of Dominic’s clothes in the closet, his books, baby wipes, and some toys. I remember sitting down on the floor and just crying. I felt like my heart was going to blow out of my chest I was crying so hard. Then I realized… I was crying in silence. I was crying with all my might... in silence. I didn’t want my husband to hear me from the living room. I didn’t want him to see how devastated I was. I just kept thinking “why? Why did you do this to my son, God?” I couldn’t fathom the thought of my innocent child having to fight for his life from the moment he would take his very first breath on this earth. How could such an innocent soul, be burdened with such an ugly disease?

I won’t lie to you; I was bitter throughout some of my pregnancy. I remember going to a Halloween get together and there were two other pregnant women there. I was about 20 weeks pregnant. They were talking about how excited they were to give birth, how they would watch them bond with their siblings, and so on. I remember feeling a lump in my throat and I looked over at my husband. He had the same look as I did… pure heart break. After we left, I cried because I explained that I was jealous of all the women who were giving birth to all these healthy babies. The ones they can take home. But I was relocating to give birth to mine, not even knowing or having certainty that I would make it back to Montana with him. It wasn’t fair.

Everything was stressful about this pregnancy, including our doctor’s appointments. We ended up needing to leave our OBGYN office and staying with the neonatal specialists for the remainder of our appointments until we left for Colorado. The first hour of our appointments would be general measurements and observations of Dominic through ultrasound. The second hour or more would be left to our pediatric cardiologist, who would perform echocardiograms, to ensure that they weren’t missing any new defect, or if his heart was failing in anyway. It was hard to enjoy these ultrasounds because if the room was too silent for too long, I would panic and begin asking if something else was wrong. It felt like every time we left these appointments, there would always be another defect added to Dominic’s list.

Carmelo and I had been planning to have a baby shower on the second week of January and we were excited to have some kind of resemblance to a positive and normal pregnancy. Then BOOM, we get hit with the “your son has TAPVR, it’s severe, and you’ll need to relocate sooner so they can continue to monitor.” We just could NOT catch a break. I remember sitting down in the conference room after that ultrasound and them saying “Dominic’s lungs can begin to fill with fluid immediately after he is born, we are unsure how this will affect his prognosis.” I remember sitting there, crying, and feeling downright defeated.

As Dominic’s mother, all I wanted to do was protect him. Make sure he knew he was loved and that he would always be safe with his mother. But I knew that the very moment they removed him from my womb, he would no longer be safe. Mommy couldn’t protect him anymore. All I could do was advocate for his needs and root him on.

We relocated on January 17, 2020, cancelled our baby shower, and began our stay in Colorado. Unfortunately, I ended up developing pretty severe preeclampsia that couldn’t get under control, so I was admitted at 36 weeks and 3 days. I was then informed that they would be planning to induce me, so I can give birth at 37 weeks (which is considered full-term).

Before I was induced, I sang “you are my sunshine” to Dominic, as I often did, and I remember saying to him: “Listen little buddy, you’re being evicted against your will. But here’s what you need to know. Mommy can’t protect you as much as I can once you’re out. So, I need you to do something for mommy, okay? I need you to fight. Fight like hell. You are going to fight the moment you leave. You are so strong, and mommy and daddy will be fighting the entire way with you.” I will always remember that moment. Because I know for a fact, he heard every single word.

The inducing process began February 15th. I went in thinking that I would have a vaginal birth, but unfortunately, I was unable to dilate past 9 cm, Dominic began to show signs of distress, and the medical team began feeling pressured, that after 30 hours or so, we couldn’t get him out safely. Another factor that was added, was the fact that if we waited longer into the evening, there would be less doctors and nurses present, and we needed all hands-on deck for Dominic.

The preparation for a c-section was nothing like I imagined. I had no idea that my entire body would be numb, nor did I anticipate having an anxiety attack so bad, that only my surgeon would be able to calm me. He calmly walked into the room, as several nurses try to calm me down and softly said to me “place one hand on your stomach, and one on your heart. Think about your son. Connect with your son. This is all for him right here. We are going to get him out safely” and I began to slow my heart rhythm and focus on my son. The one and only important thing in this world.

About a half hour later, Dominic Gabriel DeLeon made his entrance into this world. Dominic entered at 7 lbs. 13 oz, 20.86 inches long at 7:53 PM. I remember seeing his face briefly and crying because he was the absolute most beautiful thing, I had ever had the privilege to lay my eyes on.

I only got to see him for a second. They immediately took him out of the room and began performing care. As anticipated, his lungs did begin to fill with fluid and he needed to be intubated immediately, because of his low oxygen levels. I remember feeling devastated.

I couldn’t hold my son. I couldn’t lay on my chest. I couldn’t breastfeed him like I had planned. And even though my heart broke for all the things I got robbed of, again, my son was alive.

My son made it to birth. He made it! This is where the real fight began.

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