Last February we found out Eliza had a congenital heart defect called an Atrium Septal Defect or ASD. We really only told family and then moved on and lived our lives with the occasional cardiologist visit. I guess I just thought maybe it would go away on its own and there was no need to tell people or think about it or even fuss about it. Things did not go according to my plan however and I realized I had never documented anything to do with her heart. There was no record on how we found out, or where her heart story began. I decided she probably would be interested in the details later on and I certainly would not remember if I waited... so...
here it is...Eliza's heart journey.
In March of 2011 Eliza came down with a cold. Instead of getting better she seemed to be getting worse by the minute. She was starting to sound kind of croupy and was miserable so I decided to take her in to the pediatrician. He was not available so we were scheduled with another doctor. The doctor kept listening to her chest which I thought was a little weird. We had already discussed our plan of action (both kids had double ear infections, etc) but she kept listening with her stethascope for a really long time. She finally pulled away and told me she did not want to scare me but thought maybe Eliza was in heart failure. What? She heard an unusual sound from her heart, a sort of gallop. The doctor started asking me all sorts of questions that made my blood run cold. She also kept saying that she did not see any other indicators like blue lips and fingers, lack of appetite, etc., but could not ingore what she was hearing. She told me she would get an appointment set up right away with a cardioligist and then gave me a list of things I should watch for that night just in case. She also said we needed to go get a chest x-ray that day. I called Chris a little weepy and still in a state of shock. Chris stayed calm but he was very surprised and also said that she did not have any other indicators of heart failure. Henry was of course with us and also not feeling very well (double ear infection). By that time it was almost lunch time so we grabbed some odds and ends at the pharmacy and went to the lab area to get the x-ray. Both kids were so sick and tired and I was emotionally in turmoil, but I needed to keep it together for the kids. The chest x-ray was horrible. They put her in this little tube like device with her arms straight up. She was so terrified. Anyway, we made it through, got home, I gave them some pain killers, and sent them to bed. The next day we met with the cardiologist and Eliza had an EKG and then an ECHO. All this time I kept thinking nothing was going to be wrong.
I think I kept thinking nothing was going to be wrong because Eliza had had so many little things that always came to naught. At two weeks old she had to get a sonogram of her hip because the doctor thought her left hip was looser than the other one. She had a clogged tear duct that was going to have to be fixed with surgery that got better the day before our scheduled appointment. Also her strawberry kisses that would just heal on their own. Eliza also had a chronic cough since she was a newborn. This was followed up later with them thinking it might be some kind of asthma or bronchiectasis (this included an x-ray and also a visit to the pulmonologist). These were a lot of weird things for a seemingly healthy and happy little girl. Everything had always worked out so I guess I thought they would come and tell me it was some crazy one time thing.
The cardiologist came in and told me that there was something wrong with her heart, but if you had to choose something to be wrong this was it. I am glad she started with that, it was very comforting to me. She explained the ASD in really clear terms with a picture of a heart. I was told that it was large, but maybe it would close on its own. If it did not then they might be able to fix it in a lab procedure. And if it did not meet those requirements then open heart surgery. Chris was able to make the very tail end of the appointment, which was really nice because Eliza was really not feeling well. It was hard for the cardiologist to hear her heart because of her wheezing. The next day she ended up in the emergency room with RSV. She was sent home on breathing treatments and medicine. It was definitely a long and crazy week.
The rest of 2011 went by with occasional appointments with the cardiologist, but lots of appointments with her regular pediatrician's office. Eliza could not keep well. She seemed to catch every bug and every cold. They would always turn into ear infections and that crazy cough. It was getting to be so bad that she would only stay well for a week or so and then she was sick again. She also did not gain very much weight. Every time she would get sick she would stop eating. Through all of this she was absolutely amazing, sweet and happy. She usually slept well and was happy during the day. I have truly never seen a temperament quite like hers. Nothing seemed to phase her too much.
In November Eliza was given another ECHO and the cardiologist asked for a complete history of her health. The ECHO showed that Eliza's heart still had the hole in it and it was still quite large. That combined with how sick she was all the time (especially her cough and wheezing) the doctor decided that it was time to do something about it and not wait any longer. Eliza was very sick for most of November and December with double ear infections, one right after the other. She had to get this pretty rough shot called Rocefin three days in a row to try to get her well. That was coupled with breathing treatments and antibiotics. The team of doctors and surgeons had to meet together to discuss whether the lab would work and if not when the right time would be for surgery. Our cardiologist called us about three times over Christmas break, updating us. The cardiology team met together and decided that Eliza needed to have open heart surgery right away. The lab procedure would not work because the hole in her heart was just too big. They told us right after Christmas that the surgery was not going to be delayed and we had an appointment scheduled with the surgeon for January 16th of 2012.
Whew! That took a long time!:) There is more to come, a few more tears and some heartache, but mostly more miracles, and more blessings.
We love you baby girl!!!
I think I kept thinking nothing was going to be wrong because Eliza had had so many little things that always came to naught. At two weeks old she had to get a sonogram of her hip because the doctor thought her left hip was looser than the other one. She had a clogged tear duct that was going to have to be fixed with surgery that got better the day before our scheduled appointment. Also her strawberry kisses that would just heal on their own. Eliza also had a chronic cough since she was a newborn. This was followed up later with them thinking it might be some kind of asthma or bronchiectasis (this included an x-ray and also a visit to the pulmonologist). These were a lot of weird things for a seemingly healthy and happy little girl. Everything had always worked out so I guess I thought they would come and tell me it was some crazy one time thing.
The cardiologist came in and told me that there was something wrong with her heart, but if you had to choose something to be wrong this was it. I am glad she started with that, it was very comforting to me. She explained the ASD in really clear terms with a picture of a heart. I was told that it was large, but maybe it would close on its own. If it did not then they might be able to fix it in a lab procedure. And if it did not meet those requirements then open heart surgery. Chris was able to make the very tail end of the appointment, which was really nice because Eliza was really not feeling well. It was hard for the cardiologist to hear her heart because of her wheezing. The next day she ended up in the emergency room with RSV. She was sent home on breathing treatments and medicine. It was definitely a long and crazy week.
The rest of 2011 went by with occasional appointments with the cardiologist, but lots of appointments with her regular pediatrician's office. Eliza could not keep well. She seemed to catch every bug and every cold. They would always turn into ear infections and that crazy cough. It was getting to be so bad that she would only stay well for a week or so and then she was sick again. She also did not gain very much weight. Every time she would get sick she would stop eating. Through all of this she was absolutely amazing, sweet and happy. She usually slept well and was happy during the day. I have truly never seen a temperament quite like hers. Nothing seemed to phase her too much.
In November Eliza was given another ECHO and the cardiologist asked for a complete history of her health. The ECHO showed that Eliza's heart still had the hole in it and it was still quite large. That combined with how sick she was all the time (especially her cough and wheezing) the doctor decided that it was time to do something about it and not wait any longer. Eliza was very sick for most of November and December with double ear infections, one right after the other. She had to get this pretty rough shot called Rocefin three days in a row to try to get her well. That was coupled with breathing treatments and antibiotics. The team of doctors and surgeons had to meet together to discuss whether the lab would work and if not when the right time would be for surgery. Our cardiologist called us about three times over Christmas break, updating us. The cardiology team met together and decided that Eliza needed to have open heart surgery right away. The lab procedure would not work because the hole in her heart was just too big. They told us right after Christmas that the surgery was not going to be delayed and we had an appointment scheduled with the surgeon for January 16th of 2012.
Whew! That took a long time!:) There is more to come, a few more tears and some heartache, but mostly more miracles, and more blessings.
We love you baby girl!!!
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