written by
Ashley Gastelum-Calvo, Javi’s mother

Javier Isait Reyes-Medina Jr. was born June 30, 2015 at 10:29 p.m. He was four pounds, 11 ounces and 18 inches long. He was my third, but my first with my fiancée, and the first boy in his family. So to say the least, we were very excited. This labor was very different compared to the others. I had contractions for two days and nurses and doctors kept saying my contractions were not close enough together. Finally June 30th came and I went to Bryan Hospital in Lincoln. I was having contractions, and they were going to send me home when my last contraction came Javier de-stated to under 60. The nurses told me I wasn’t going anywhere and I went from being dilated at three at 8:00 pm to him being born two and half hours later.

Javier seemed to do great in the hospital, although he didn’t eat much. On our last day there I decided to send him to the nursery so I could do his car seat test since he was so little.

While preparing for the trip home the hospital told me, “I hate to tell you but he needs to go to the NICU.”

Javier’s bilirubin was high and he was not eating. As soon as he arrived in the NICU they inserted an NG tube in his nose to make sure he received his nutrients. I spent two incredibly long days there and didn’t leave his side. I decided to go home July 4th during the day to rest. Since I still had my phone on silent, I didn’t hear it ring. When I woke up and began to drive back to the hospital around 6 p.m., I saw that I had a missed call from the NICU. I started to freak out, I listened to the message and the nurse said Javier had an SVT episode. I called them back while we were pulling in the parking lot, and the charge nurse began to explain everything to me and attempted to calm me down. When we arrived I was still scared because he had several extra wires and tubes surrounding him. That night was one of the longest nights as I began to Google and take notes on everything Javier was experiencing.

The next day the nurses came in removed the monitor and an echo was done. The doctor told me that they were going to send the echo to Children’s Hospital and Medical Center in Omaha. All I could do was cry as I went home to tell his dad. While at home the doctor asked for us both to come back in and meet with him. He sat us down and explained to us that our child had congenital heart disease. He explained that Javier had an AV Septum Defect. He reiterated to us that there is no cause for this and we couldn’t have done anything different. He then proceeded to tell us he also has Supraventricular Tachycardia (SVT), which was non-life threating. At the end of our meeting he told us Javier was going to be transported to the NICU at Children’s Hospital to meet with the Cardiology team.

When we went back to the room, we packed all of our stuff and waited for the transport team to come get him. Then we got in the car and headed to Omaha. Once we got there he was in a little spaceship looking bed with all these doctors and nurses around him. As we finished our paperwork, all I could do was cry. I felt so bad like I did something wrong. We met with Dr. Cuddy on cardiology he was the most kind hearted man and very understanding to our worries as we knew nothing about this in utero. He was also diagnosed with Pulmonary Stenosis, 8p23.1 Deletion Syndrome that is where part of his 8th chromosome is missing, he also has coloboma of the right eye, and feeding intolerance.

This road can be a very tiring and stressful one, but we take comfort in our strong little guy, who fights his CHD with every breath in him. We still love our little man beyond belief, but sometimes it feels too hard to do alone. I am normally the one sitting up at the hospital, and my fiancée and other children are home. We are still waiting for open heart surgery- for Javi to get bigger (for a better surgical outcome).

So, that is the story so far of our little fighter, our Heart Hero – Javier “Javi” Reyes-Medina Jr.