This is part 2 in a series about congenital heart defect by guest blogger C. You can read Part 1 here.

On New Year’s Eve our son had his first echocardiogram (echo) to look at his heart. The echo was very similar to an ultrasound. After the echo we met with the pediatric cardiologist. She is an amazing doctor. She gently gave us the most devastating news of our lives. She explained that the echo pictures showed a moderate to large size hole in his heart. The hole was by his aortic valve which posed long- term risks if it didn’t close. She explained that open heart surgery to repair his heart was a distinct possibility. 1 out of every 125 babies born have a congenital heart defect. 25% of those babies need surgery within their first year of life to repair their heart. We hoped that he was not in that 25%.

To say that we were blindsided was an understatement. We had no idea that babies could undergo open heart surgery. I remember just wanting to pick up our baby and run. I was horrified at the idea of open heart surgery. We just had to wait and watch, but we at least had some hope he could avoid surgery.

Our doctor explained the treatment plan. It came down to two things: keep him healthy and gaining weight. Breastfeeding had been going badly since he had no energy to eat, and I was getting recurrent mastitis. We decided to move on to high calorie formula. We hoped that at the very least he would get to 10lbs in case surgery was needed. Babies tend to have less complications and an easier recovery if they weigh 10lbs or more.

He started RSV shots to help him fight the virus in case he contracted it. He also began taking the drug, Lasix, to keep the fluid off his lungs. The irony of his diagnosis was that he had an incredibly strong heart. His heart wasn’t diseased like an adult might be. He didn’t have any other chromosomal abnormalities. However, the hole in his heart created too much work and was compromising his lungs.

This was such an overwhelmingly sad time. I hated looking at his baby book and realizing that there were not going to be any pictures in there with family, friends, and fun outings. It was a really isolating and tense time.

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When he was 6 weeks old we went back for another echo. One side of his heart was enlarged and he had over circulation, what we think of as heart failure. Our hope for avoiding surgery was gone. Our sweet baby was fading every single day. He slept more, his hands and feet were always cold, and he had no energy to eat. He would sip on bottles all day long, taking no more than half ounce at a time. We started to dream feed him, trying to give him bottles in his sleep. His heart beat started to feel squishy. It was terrifying. Usually, feeding your newborn baby is a time to bond. This was the opposite. Somedays we dreaded the upcoming surgery, and other days we were desperate to have it all over with. During all this time our sweet baby smiled and laughed for the first time. There were still some milestones we could celebrate.

When he was just shy of 3 months old, we again knew something had gone very wrong. We took him to the pediatrician hoping it was just a cold. It wasn’t. He had fluid building up in his body, displacing his organs and compromising the blood vessels to his lungs. There are so many moments I won’t be able to forget. One of them is sitting in our pediatrician’s office as she talked to our cardiologist on the phone, and knowing that more bad news was coming. Our doctor sat down next to me, and in a quiet voice, told me it was his heart. We were out of time.

Our pediatric cardiologist prescribed a medication that would keep him stable for a few more days, but he couldn’t use it long term or it would further damage his organs. She still thought we could get him to gain a few more ounces, and be stable for surgery in a few days with the specific surgeon she had in mind. It felt like we were playing a game of chicken. Trying to gain ounces while risking irreversible heart and lung damage. However, she had gotten our son this far, and we trusted her implicitly.

The medicine worked. He gained the ounces and was stable. A few days later he turned 3 months old and underwent open heart surgery the next day to repair his heart, making the goal weight of 10lbs that morning.

Pre-op, surgery and the PICU were next in our journey, and it was time for us to face our fears.