When we came home from the hospital on Valentine's day 2011, we were told we were in the "honeymoon" period.
They said she would be in full-blown heart failure within 2 -4 weeks max.
Jade & I got home, got settled in, and I bawled. The words heart failure are scary.
Real life heart failure isn't as scary as the words sound. They should rename it really because any Mom that has experienced the words heart failure also probably agrees with me that that label sucks.
For Ollie, heart failure came on slowly. She tugged when she took a breath - this means her skin around her ribs sucked in really tight every breath she took. She was a loud mouth breather - I could hear her across the room breathing. She could out snore our pug. She struggled to put on weight, every single ounce was precious, and she was pale.
Now I can list all her symptoms. At the time, I didn't think she had symptoms other than slow weight gain. I thought everything else was typical Ollie.
Her cardiologist started her on Lasix at 4 weeks of age & every month he bumped her up. She'd gain weight for about 2 weeks and then plateau until we gave her more heart meds.
I can honestly say that was the hardest experience of my life. At the same time, leaving that hospital 5 days post surgery with a strong heart beat, was the most beautiful experience of my life. It goes hand in hand I guess. God hands you your worst so you can appreciate his best.
We went in with so much fear. I didn't sleep the night before her surgery. I cry now remembering handing her off that day - it was awful - thank God Jade was by my side. I felt like I was going to burst waiting to get into her room to see her post surgery. It was the longest I had been away from her since her birth. When I could finally hold her & nurse her post surgery was maybe better than the day she was born. You could see the beaming joy from her face when we finally got to hold her. It also brings tears to my eyes. She instantly fell asleep the day her brother and sister came & she got to be around her typical loud background noise. To her she thought she was home.
It was awful, it was scary, I was terrified that God was going to strip her from my life every.single.day from the day of her birth thru the day of her surgery & the few days following surgery.
Now that we are on the other side, I feel blessed to have walked this heart journey. I appreciate so much more in life. I will never be able to thank her surgeon enough. I made him a keychain for a gift - seems kind of ridiculous that's all I can do for him when he saved her life...but he knows how many love him.
She still has a very small VSD (hole between her ventricles) by the heart patch & hopefully that will grow shut as she grows older. For now we don't go back to her cardio until February & 6 months away from the cardio man is just something I have looked forward to for a long time!