Tuesday, February 17, 2015

February is CHD Awareness Month ~ Heart Surgeries

Jessica following her 2nd heart surgery age 3

This photo was taken after Jessica's 2nd heart surgery. My 5 year old son was scared to go into the PICU to see her and the only reason they allowed him in was because he was going to stay with my parents and I didn't want to send him away without him even seeing his sister and knowing that she hadn't died. A nurse took this picture to show him before he entered the PICU so that he wouldn't be quite so scared. We brought Jessica's doll and stuffed animal and placed them around and on top of her so that he wouldn't be afraid of her incision and the tubes and wires on her chest. {Too bad we didn't know back then that he had Aspergers (autism spectrum) back then and that's why he would freak out so much when he saw his little sister with tubes and wires, etc.} This was the surgery from when she hemorrhaged, had a massive stroke, was blind and paralyzed for a while and had a blood infection. At the time of this photo Jessica had barely regained enough eyesight to focus on something for a few seconds and then her eyes would drift up to the right. She couldn't control where they were looking and we didn't know how much she could see because when she could key in on something sometimes she would cry out as if she was afraid of whatever it was she was looking at. 

Jessica following her 5th heart surgery - age 7

Jessica posing with Dr. Donnerstein and Dr. Goldberg

The first photo is after Jessica's 5th heart surgery which went VERY well.  The other photo is of Jessica posing with Dr Donnerstein (on the left) and Dr. Goldberg (one in the back).  Both of these photos were taken right before we left the hospital to go home.   Dr. D and Dr. G are two of the pediatric cardiologists who cared for her over the years. Dr. D was the one who diagnosed Jess when she was 2 weeks old and he followed her until he retired when Jessica was 20. We joked that Jessica put him into retirement from all the stress she gave him throughout those 20 years. He came to her PC visits even after he retired but he came as a friend. He was very kind and caring. He stayed at the hospital all night the night that Jess was hemorrhaging and kept going back into surgery. Once a patient is handed over to the surgeon they usually step back until the after the surgery and the patient is released but Dr. D felt as though we were family. He was a great source of support to us all those years.
I didn't take many photos of Jess when she was in the hospital, especially when she was in the PICU. It was so very hard on me that I knew I would never forget and I felt like I was invading her privacy if I took pictures of her hooked up to all the machines and monitors, so I didn't take photos... but now I wish I had. I want others to know what an amazing soul she was and what she endured. Jessica's legacy of hope and love lives on but I feel like I could have done her story more justice with more photos of her difficult times. I am thankful that I went camera-crazy and took a lot of photos of the better times because sometimes those good memories are all I have to push out the flash-backs of the bad times.
To read more about her 5 heart surgeries please follow this link:

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