Heart Hero of the Month DECEMBER 2022

Story by, ❤️Mom, Nayeli

Sebastian was born at exactly 36 weeks. I went to my high-risk doctor for a routine ultrasound, and they noticed that I had zero amniotic fluid and he was still very small, so I was rushed to the hospital and induced to give birth. I was in the hospital all by myself because this was during Covid so my husband was not allowed into my appointment. I had to call him and let him know it was happening, and that he had to come to the hospital now. It was a very scary moment in my life. At this time we had no idea that Sebastian had a heart condition. I was being monitored for other medical issues that I had, but up to this point, Sebastian was growing perfect from what they could see.

I delivered a seemingly perfect healthy baby on November 2, 2020, the delivery was perfect. He weighed 4 lbs. 13 oz. He latched on as soon as they put him on my chest. He seemed like he was perfectly healthy. This was right at the start of Covid, so no visitors were allowed, not even his sisters. I only had my husband there with me. We were excited because we were under the impression we would be able to go home the next day. Sebastian was not nursing at all that day and they said they’d give him one more day so we would have to stay. He didn’t nurse at all for those two days. He was struggling, he would keep falling asleep. They couldn’t figure out what was wrong. They just kept saying he was premature and he would have to learn to nurse. They tried to give him a bottle, but he wouldn’t take that either. The hospital where I delivered him did not have a NICU, so he was in the room with just me. They didn’t think anything was wrong that would require him to be transferred to a hospital with a NICU. 

We were in the hospital for two weeks and during those two weeks, he had a feeding tube to try and help him get more calories to grow a little bit and give him time to learn how to nurse. At this point, we still didn’t know anything was wrong. Exactly 2 weeks they told us that he would go home, he just had to have a car seat test done. I ended up going home that day to get everything at home ready for him. While at home with my other children and my husband was away at work, I received a call that something was wrong with Sebastian and they did not know what it was. They said during the car seat test his heart rate went down and something was wrong. They said I had exactly one hour to get to the hospital before the ambulance took him to Children’s Hospital.

It is such a scary moment not knowing what’s wrong with one of your babies and you’re away.

As soon as we got to the hospital where he was, the Children’s ambulance was already getting him ready to transport. We got to kiss him, but because of Covid, we were not allowed to go in the ambulance with him so we had to just follow them in our car. When we got to the hospital we had to wait in the waiting room for what seemed like forever because the specialist was checking on him. When we walked into his room we saw him connected to everything and he was on oxygen. He still had his feeding tube, and it was a very scary sight to see our baby like that.  A cardiologist sat with us and let us know that Sebastian had a Congenital Heart Defect. He had a TAPVR (total anomalous pulmonary venous return).  He would have to have surgery to repair the veins in his heart.

Hearing this just broke us. When we got this diagnosis I think it was one of the worst days of my life. We had so many questions and I felt like I did something to cause this. I just kept asking myself if I did something wrong during my pregnancy. Is there something I could’ve done differently?  

I think we cried all day. The NICU didn’t have a room for us to stay so this would be the first day that I left my baby in the hospital by himself. After having such a terrible diagnosis, I was scared. I didn’t know if something was gonna happen to him. All I could do was pray.  I felt so alone during this time even though I had the support of my husband and my family, it was just such a scary moment in my life, especially during Covid, because nobody could come and be with me while I was with my baby during this difficult time. My husband had to go back to work and I was alone most of the time in the hospital with him. When my husband was not at work, he had to be at home with our other children since they couldn’t come to the hospital with us.

This was one of the worst times in my life. The loneliness I felt was indescribable. 

Sebastian was able to come home a few weeks later because he was doing well and they said they would wait for him to get a little bit bigger before he could have surgery. At one-month-old Sebastian finally met his sisters. He was able to be at home for about a week and then he was admitted to the hospital again as he was having difficulty breathing and feeding.

Sebastian had surgery on December 22, 2020. He was only seven weeks at the time of surgery. The surgery took around 5 to 6 hours, but to me, it felt like an eternity. They put you in a private waiting room and it was only me and my husband because again no one was allowed to be in the hospital beside us. Thankfully, the surgery went well and we were able to go see him once he was in the CICU. They did talk to us about how he was going to look the moment he came out of surgery, but I don’t think no matter what they tell you nothing can ever prepare you for how your child is after surgery. Machines everywhere, wires coming out of him. It was a very scary way to see my little baby.

Sebastian was able to come home just in time for New Year’s. Once he was home, we still had to be careful with him, we still were very careful about allowing people to come and see him. We really didn’t allow any visitors. We were just so worried about Covid and keeping him healthy.  

Sebastian is two years old now and he is full of energy. If you were to look at him, you wouldn’t know he had open heart surgery at seven weeks unless you see the scar on his chest.

Heart Heroes has been such a great help through all of this. They have an amazing support system on Facebook. All the heart parents are just amazingly supportive and I think they’re really the only ones that know what you’re going through. It’s very hard because if you haven’t gotten a Congenital Heart Disease diagnosis, you don’t know what we go through and how hard it is. I’m thankful that Sebastian’s heart is repaired but I know many other parents go through so much more and many more surgeries. I just wish there was a lot more awareness for CHD which would allow for more support for parents during these difficult times.

Sebastian has made me look at life a lot differently. I appreciate the smallest things in life a lot more.

Every day I feel blessed to have him still here with me. I’ll be forever grateful to the team of doctors and nurses that took care of him during those two months and the surgeon who saved his life. Sebastian wears his Heart Hero cape with honor to represent him and all the Heart Heroes.