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
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Jessica posing with Dr. Donnerstein and Dr. Goldberg
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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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