Victoria's Story

· Growing Up ·

April 1994 - September 1995
Victoria did very well after the Glenn surgery. She was quite active and no longer had the "colour swings" that she had been having prior to the operation. She was still somewhat more pale than all of the other kids around, but she didn't seem to care! For a while, we forgot about her heart problem and got on with raising a toddler. It was quite an experience. She started home care and then day care. She played with all of her friends on the street every single summer evening. The only reminders we had of her heart defect were periodic visits to the cardiologist, the scar on her chest, and the way she panted when walking or running.

The hospital visits were stretched out quite a bit after the Glenn surgery. After an initial post-operative flurry of visits, the frequency of the visits diminished. One gap was actually six months long! There were several echocardiograms and another heart cath. - just routine. Gradually, over this time, it was apparent that Victoria's situation was again worsening, as expected. There was no dramatic change, rather a gradual drop in oxygen saturation level. This was only evident during trips to the cardiologist, of course. The cardiologist soon started talking about preparing for surgery again.

The hardest part of this period of time between operations was that the timing of the second changed on us twice. The Fontan procedure was originally supposed to take place when Victoria was about 18 months old. Around that time, the cardiologist decided that sometime around her second birthday would be better.

21 September 1995 [age 23 months]
Victoria had another cardiac catheterisation just prior to her second birthday to prepare for surgery the following month. However Victoria was not to receive a Fontan for her birthday this year, as the cardiologist changed plans again. He said that another six months or so would be good. As fate would have it, our second child was due to be born at about that time. It then looked like these two events were going to coincide.

September 1995 - April 1996
Victoria was finally slotted into the surgical schedule for April 11, 1996, less than one month before our second child's expected arrival date. Preparing for this second surgery was far more difficult than the first one. We knew well in advance exactly when it would take place, so we had a great deal of time to worry about it. The date slipped to April 15, due to a bladder infection, which did clear up in time. However on April 12, the Friday before the scheduled surgery, Victoria was diagnosed with an ear infection. That postponed the surgery again. This time, we knew that we would have to wait until well after the new baby was born so it was like a great weight had been lifted off of us!

The great weight was replaced the following week. If Victoria's infection cleared up in 10 days, an attempt would be made to re-schedule her surgery for the earliest possible date. That's exactly what happened. She was given a clean bill of health and re-scheduled for April 23. Once again, we tried to prepare ourselves for what was to come. April 23 was less than two weeks before the new baby's due date!

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