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| Isabelle |
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While I was pregnant with Isie her condition was undetected. She was an easy delivery and since nothing out of the ordinary was found we were released from the hospital within 24 hours (I don't rest well at hospitals and was anxious to get back to our older son). The only stipulation was that we take her to the pediatrician within 24 hours. Looking back at this, I am so thankful for that quiet evening to morning at home, as a family, before our life turned upside-down.
We had our first "well-baby" check the next afternoon. I still laugh at the term "well-baby" because once Dr. Gentile listened to her heart there was nothing "well" about our baby. He heard a murmur. I have to say that he is quite a doctor. Not only did he detect what went unnoticed in the hospital but he got us in to see the pediatric cardiologist within the hour and we were never alarmed. He told us that it could just be a simple VSD (I have a friend whose little girl had one and it closed on its own, so we weren't worried about that) but since it was a Friday he didn't want us to worry all weekend. I know those of you reading this probably realize what a thin cover this is. No one is sent to the cardiologist that day unless it is serious, but what did we know?
Anyway, the echo to analyze her heart went on and on. Then they ushered us into a patient room where our cardiologist, Dr. Halpe began drawing pictures of a heart and explaining what they had found. To us it all sounded like gibberish until he mentioned the ambulance waiting outside.
The ambulance rushed us to Phoenix Children's Hospital and admitted Isie. They quickly got her stabilized, hooked up to the necessary IVs and had a string of doctors in to see her. The next few months were a blur.
At seven days, she had her first open-heart surgery. Dr. Teodori (whom we refer to as "the man") rebuilt her an aortic arch and mostly closed her VSD. Our hope was to allow her to grow before repairing her aortic valve. She developed chylothorax which required the use of a feeding tube, but a couple of weeks later we went home.
After not even a week home she went into respiratory distress. It was determined by a nurse who came twice a week to help us adjust to our little girl's needs. She called Dr. Teodori and a helicopter was arranged to land outside of our neighborhood and take Isie back to Phoenix Children's Hospital. This was her shortest hospital stay of only 10 days. She had a balloon valvuloplasty to relieve her aortic stenosis and got to go home.
We were home for 3 weeks when her weekly echo showed that we couldn't put off surgery on her aortic valve. We drove her to Phoenix Children's hospital and she was there for about a month during which she had the Ross-Konno procedure performed. This was the scariest 15 hours we have ever endured. I guess things were touch and go for awhile but Isie (fighter that she is) pushed through it and after another case of chylothorax, and an infection at the chest opening she finally came home!
These days her heart is doing well. We go the cardiologist for a check-up and echo every 6 months. Her last was in November and we were told that her heart looks even better than it did the time before. But we know eventually she'll be back in the hospital. During the Ross-Konno procedure her aortic valve was replaced with her pulmonary valve. The pulmonary valve was replaced with a bovine vessel (yep, she has cow parts). Eventually she'll outgrow it or wear it out and it will have to be replaced. But for now she is doing great!
As for side-effects, she has a paralyzed left vocal cord. This makes it difficult for her to make certain sounds but her speech is progressing, just sometimes she sounds like an old old man (all deep, growly and gruff). And we have to thicken all of her fluids but that is manageable. We are just so glad to have her home, running around and making us crazy!
