I found out I was pregnant with connor in November of 2017. I was SO excited, right after a loss. I was enjoying my pregnancy and had never thought that I’d get bad news. I knew it wasn’t normal to be getting so many ultrasounds but I didn’t complain. It was the last week in march ( a few days before my baby shower) that I had an OB appointment, I had my cousin with me. The appointment went well but then a doctor I never met came in and let me know that they found some abnormality in the heart. I thought I had stopped breathing all together. They did not have much info at the time and told me I’d have to see maternal fetal medicine a week and a half from then. So I had to finish out my weekend and my showers day worried and depressed of what would happen. April 7th was my appointment at mfm. The ultrasound felt like it lasted forever, and after 20 minutes the doctor came in to take a look himself. They did some talking and I didn’t understand any of it.
The doctor looked at me and said he wasn’t sure but he thought it was a form of truncus. My world fell apart. Was I going to loose my baby? Was he going to survive? Why me? Why him? I left there numb…. Too many feelings. I had been referred to children’s hospital of Philadelphia, and would be going to see a cardiac specialist. The day at chop was a long 9 hour day with ultrasounds, tests, and questions with genetics and insurance. It did not take long for them to confirm that connor in fact had truncus arteriosus. Again, heart wrenching pain. We had made a plan that I’d seek care at my doctor until my 37th week and do the rest of my pregnancy at the Ronald McDonald house to have connor at chop. Meanwhile, my family and I decided my older son ( aiden) should get checked. He got a heart echo and sadly it showed he also had a chd called bicuspid aortic valve. Because of connors condition and aidens chop wanted to do an amnioscentisis to do genetic testing and see if he had 22q11. He does not. And they don’t know if its genetic. My 37 th week and the first appointment I had on June 10th at chop I had officially been transfered to Philadelphia to stay. On that day they decided that they wanted to induce me on Sunday! Two days from then! I spent two days at the Ronald McDonald house and I made great friends! Sunday afternoon came… I got admitted and they were going to give me cervadil through the night and start pitocin in the morning. Connor had other plans. I started contracting around 9 pm and they kept getting worse. They had me moving in different positions to move him bit he kept dropping his heart rate. Around 3 am they decided they had to do an emergency c section. I was SO scared!!! Luckily my nurse Jill was so supportive. The c section was honestly not as bad as I thought it would be. Until the pain started. I didn’t get to see connor for about 14 hours! When I finally got to see him I held him for hours. I bonded with him and tried to forget in just two days he’d be getting surgery. The day came too fast and I was not ready. I tried to keep myself together. Connor hadn’t been allowed to eat for 24 hours so it caught up to him and he was so unhappy and I finally broke down. I wanted to take him and run away with him. The nurses said it was time to take him back and I wrapped him in his blanky and said I’d walk him down. Even with a fresh scar I forced myself to do it….. That long, white, quite hallway was the worst 5 minutes of my life. And handing him to the surgeon just about made me fall to my knees. I had faith in connor and dr. Mascio. Surgery went great but then they had to reopen his chest due to a clot so they would have to re close it in 24 hours. Once we went back to see him, it was my worst nightmare. Even after seeing all the photos I was not prepared to see my own child like this.
There were so many wires and tubes and he was so still. With a few minor complications he started to have things taken out.
He did great and was on his was to the step down unit. We spent a week getting his eating down and then we were on our way home. It happened so quick! We came home July 2nd… Its now February 20th.
Connor is almost 9 months old and those days seem so close yet so far away. He’s come so far! He’s got some delays but other than that he’s happy and thankfully healthy! He’s my hero, and were so lucky to have him.
If you want to follow know more about Connor and follow his journey, follow @cassymarie on instagram.