Ashley's Health Explained #2

Beginning where I left off, Ashley had her first heart surgery when she was 2 1/2 months old. At that time, she weighed 5 lbs 13 oz. She was super tiny, but she came through the first surgery with flying colors. In that surgery, they fixed her narrow aortic arch, and put a band on her pulmonary artery, which was coming off the wrong side of her heart, flooding her lungs with blood. I still remember how shocked I was to see her after surgery! She was covered with tubes! There were several IV pumps by her bedside, running lots of medications into her tiny arm. We were so lucky that her first heart surgery was done under her arm. They call that a thoracotomy. I hope that is the right spelling. She came home within two weeks of having that surgery.

When we got her home, she still had a feeding tube in place. We fed her through that tube every four hours around the clock, but they only let her have 6 ounces of food per feeding. At one point, she pulled her tube out, which was something I greatly feared! We had been taught how to thread it back down her nose and into her stomach, but I was terrified of actually doing it! Jason was a trooper and he re-threaded it for me. Bless his heart!

Our little angel was not a happy baby at that time. The problem was, she was starving to death! When I finally, in desperation, called the hospital and asked them if she could eat more, they agreed. Thank goodness!! She was much happier with a full tummy!! Imagine that!! Ha ha ha!

They originally told us between the ages of 6 and 8 months of age, she would need another heart surgery. She would grow out of the PA band. They kept a close eye on her during that time period. We made trips to Salt Lake, from Evanston, nearly every month. She had two heart catherizations during this time, as well as an MRI of her heart, which was a fairly new procedure at that point. Fortunately she didn't require surgery again until she was 22 months old.

Around 12 months, Ashley had lots of trouble with refluxing. They were worried about her esophagus repair, that the area where they attached the esophagus to the stomach was too narrow and would require surgery to open it up. She threw up all the time. It was awful! After a harrowing procedure to see if her esophagus was ok, they discovered the area was a little narrow, but gave her some medication to help with her reflux, versus surgery. I couldn't have been more grateful!!!

Around the time she was 20 months old, she had another heart cath. They found out she had outgrown her PA band and had developed a significant pressure gradient below the band. Surgery would be required almost immediately to fix the dangerous problem. We scheduled her surgery. Only a week before we were to be in Salt Lake, Ashley got sick. They told us she had tonsilitis, and put her on strong antibiotics, but she still ran a fever for several days. I can't tell you how many blessings and prayers were given during that time. It was so frightening! We had no idea what to expect. The surgeon, given the extreme complexity of Ashley's heart, could only guess what he would do in the surgery. He couldn't say until he actually opened her up and tried what he thought would work.

When we arrived at Primary Children's and checked her in for surgery, she was still a little sick. They almost postponed her surgery, given the complicated and dangerous surgery that it would be. Fortunately, they finally decided to proceed. After all the pre-op check in, and speaking to the surgeon and nurse and others, we kissed her goodbye and watch her disappear down the hall, not knowing if we would ever see her again. Then, the awful wait!! Oh how hard it was to sit in the waiting room, anxiously waiting for even the smallest news from the OR.

Ok, Ashley needs her mommy now. Gotta go! Will write more later! (0: