I had my son Ezra on December 10th, 2017.
I had always been told I may not be able to have children, so he was a complete surprise.
One day while I was at work, he wasn't as active as he usually was so I went to the emergency room to get checked out.
The umbilical cord was wrapped around his neck and he was losing air flow- his heart rate was dropping. We were quickly informed he would be coming TODAY! A whole month early. It was scary, exciting, and I couldn't wait to meet him.
I had an emergency c-section, and when I woke up I was informed he would need to be transferred to NCH main campus. I was still somewhat groggy so I didn't understand at first. But someone came into my room and told me that he was having trouble breathing, and they thought he had some heart issues. I tried to remain calm and pray, but I was also very scared. I was alone- Ezra's father decided he didn't want to be a dad, so he left us during the pregnancy.
After 3 days I left the hospital and went straight to NCH main campus.
My family was with me and we were told that Ezra had some heart issues and they were not sure how severe- but they needed to do an open heart surgery to see how severe.
Open heart surgery on a newborn? I was terrified. At this point, Ezra was placed on the heart transplant waiting list. He had his first procedure at 1 month old. A synthetic valve was placed to help his heart pump easier, as his valves were small and thick- making his blood pool at the bottom instead of pumping through. He had his first actual open heart surgery at 1.5 months old. It was terrifying. I wasn't allowed to hold him this entire time because he had an open chest and tubes everywhere. They informed us that he actually had 4 severe issues instead of the one issue they originally thought he had. He had another open heart surgery a few weeks later and unfortunately, after this surgery he got a blood clot from the picc line and it caused his kidneys to shut down. His body filled with acid, which is a painful way to pass. I had some awful decisions to make... and instead of keeping him alive and allowing him to suffer so I could get more time with him- I chose to let his family and friends come and meet him for the first- and last- time.... celebrate his life and surround him with love- and take him off of life support. It was a very bittersweet day. Everyone loved him and his little ornery spirit. Ezra was ALWAYS smiling- even though he was in a lot of pain. He taught me many things- such as- "if you can't find something to be thankful for- create something" as well as "there is always a reason to smile". Ezra passed in my arms and we spent 24 hours holding him, singing to him, talking to him, and just letting him know that he was so loved! He passed on February 19th, 2018. My angel, my greatest love, my love bug. My son.
I am doing this challenge to raise money for research so the babies born with these issues can live a long, healthy life and so that other families don't have to experience the horrible loss we experienced when Ezra passed.
Please consider donating and making that possible for these tiny warriors and their families.
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