It's no secret that our son recently had open heart surgery... If you would like details to his birth story please see my personal link at the top of this blog. After you read that, you will learn that my son was born with Pulmonary Atresia with intact Ventricular Septum. We had no idea about his condition until we were visited by his cardiologist about an hour after he was born... It was at this time we were told that he would not be coming back into the room with us, but instead he would be leaving with my husband in ambulance for the Children's Hospital of Pennsylvania where he would be having procedures on his tiny little heart. I will not say anything about us not being able to have the normal birth story... I missed the visitors, the pictures & spent the first night of being a mother without two of the people that mattered most in my life, but we were given Ben that day... and that's all that matters.
You would assume this would be so scary that you wouldn't even understand how you would get through it... I, at the current moment (with the surgery behind us), believe this was a small blessing for the Colucci family...I'm not sure why I never fully panicked after I was told the news that my son had a heart defect- maybe it was a mothers instinct, or maybe it was the fact that he was born on Father's Day a year after his paternal grandpa passed way... either way, through all the ups and down of this year, I always knew he was going to be ok-better than ok!
As I continue writing this please don't mix up my lack o-panic with me never throwing a sh*t fit. That definitely DID happen. Every second of the first 10 days we spent in Philly somehow lead back to how "this wasn't fair", or I was "missing his newborn stage". I was told multiple times by my family & husband that I needed to learn patience- but I didn't want to hear that... During rounds, while the doctors would speak, instead of trying to learn & understand about Ben I would impatiently look to hear the only thing I cared about at the moment- "WHEN WOULD WE TAKE HIM HOME?"
Ironically those ten days feel like a blink of an eye 365 days later (just as everyone told me it would feel)... I'm really not sure how it happened but the second I walked out of CHOP with my little boy I felt like I instantly changed as a person. Even though I had moments where I felt like life had handed me something so "unfair", all I could think about on the drive home was all the little boys & girls that were still there & weren't going home anytime soon... Every nice day & holiday since, I can't help but think of the families that have made that hospital their home. We were lucky... We got to experience something that made us appreciate life and everything that comes with it & then we were sent home to actually experience it with a beautiful & healthy little boy!
I went into his surgery thinking we would be there 7 days. I was told I would be shocked by the resilience children have- Shock is an understatement... We were there 3 nights & "Super Ben" was throwing himself around the bed while we were waiting to be discharged. We spent the last day walking the halls & attending a music class for all the kids on the cardiac floor. The girl who kept the class laughing was referred to by our nurse as "the mayor" of the wing... She was 3 and has only been home once. I don't even think I can write anymore about that without bursting into tears.
I'm not a saint, I still get upset over little things and get frustrated if we have a cranky day, but I am 110% positive that life is a blessing & wake up every day realizing we only get to do this once. I appreciate every person in my life that has been there for me... Here are pics from our last & hopefully final stay at "casa de la Chop"...
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