I thought I would have an entry just on Madison's heart history. This will kind of explain why we are sitting on a Transplant List. As I think about the events that have happened from the time she was born until now, it gives me goose-bumps. There are so many moments that were answers to our prayers and stepping stones to the next event. I had no idea until looking back.
We live in Provo; Cooper and Madison were born at the University of Utah Hospital. How lucky was I to have delivered my babies at a hospital where all the speciality doctors were located. Litte did I know, I would need them!
Cooper and Madison were born 9 weeks early. This resulted in us living in the NICU for 7 weeks. Living? Yes, we lived there as we spent 10-12 hours each day "coaching" our babies on how to suck, swallow, and breath on their own. Once they accomplished this, they were ready to come home. (this is typical for preemie babies) Mark and I showed up everyday with our whistles and referee outfits on. We wanted our babies home as soon as possible.
While in the NICU, all babies are hooked up to every monitor possible. It is because of the monitors that her first heart episode was noticed. At about 2 weeks old, alarms went off and doctors immediately ran over to our little girl. Madison had gone into SVT (Supraventricular Tachycardia). This was caused by abnormal Cardiac Arrhythmias and resulted in a diagnosis of WPW (Wolfe-Parkinson White Syndrome). Over the next several weeks, Madison managed to have 3 episodes of SVT while in the NICU. Each episode would last about 15-20 minutes and her little heart would beat at 230-250 beats per minute. (average newborn heart beats at 100-160 beats per minute.) I now look back and think.. if Madison was a full term baby, would her abnormal arrhythmias have been noticed? I don't think think so, simply because she wouldn't have been monitored so closely. I then find myself thankful (??) for our NICU experience.
Madison now takes medication (Atenolol) to control her arrhythmias. She is also monitored periodically via a heart monitor and we listen to her heart daily with a stethoscope. To our knowledge, she hasn't had any SVT episodes. It is difficult to notice when an infant experiences SVT as they don't normally show outward symptoms.
Because of Madison's WPW diagnosis, her cardiologist (Dr. Gray) ordered additional tests (EKG, Echo (heart ultrasound), CT scan, and an MRI) to rule out any other diagnoses. It was during these tests that he discovered that her heart muscle was too thick. Madison was then diagnosed with Hypertrophic Cardiomyopathy in addition to Wolfe-Parkinson White Syndrome. Dr. Gray then referred us to Dr. Everitt.
We have now seen Dr. Everitt for about a year. Our appointments with her include routine Echo's, EKG's, heart monitors, blood work, and simply monitoring Madison's condition. Things were going well until October 8, 2009.
4 weeks ago