In my wildest dreams I never thought Ella would end up with a broken heart. I had thought her monitor warnings were a "preemie thing". I mean we spent 20 days in the NICU and have had numerous pediatrician visits and home health visits and no one had noticed anything.
The next day (after our scary first night in the PIC) we anxiously waited for a visit from the cardiologist. The cardiologist quickly explained that he had a few ideas of what the problem could be but we need to do an echo cardiogram to make sure the heart looked and was functioning properly. They did the ultrasound and the technician said that he "would let the doctor share the good news with us."
Our cardiologist, Dr. B., pulled up a chair and began to explain to us what was happening. He told us that the echo cardiogram looked perfect which ruled out many heart defects or holes in the heart. He went on to explain that he thought Ella had Wolff-Parkinson-White syndrome. He went on to say that this can only be seen with a microscope so the way they diagnose it is by ruling out other defects, observation, and EKG's.
Wolff-Parkinson-White Syndrome (WPW Syndrome) is when the heart has an extra electrical passage way. We all have one but Ella has two. This extra passage way can cause the heart to beat rapidly causing SVT events. It is tricky because you cannot predict an episode of WPW syndrome. Also, some patients have one episode in their lifetime and others have more frequent episodes. Our cardiologist said that it is really hard to determine if the cause is genetic although my grandfather had similar events but much later in life.
We were lucky that Ella was on a monitor. The cardiologist explained that many infants are diagnosed in the ER after parents bring in a very sick baby who has started to go into heart failure. Wow! We just keep counting our blessings!
Ella takes a beta blocker three times a day to keep her heart beating at an appropriate rate. We are lucky to say that she has had no break through episodes that we are aware of. She stayed on her monitor until she was nine months old. We were very ready to take that extension of Ella back to the store but it did give us a peace of mind that we would know if Ella was having an episode. To this day I worry every time she seems extra tired or not herself. What if she had a break through episode? Will I know? How do you tell these things? We are equipped with a stethoscope at home and we learned to hear the difference between a normal rate and a high heart rate but it is hard to know for sure. I wonder if I will watch her and wonder these things for the rest of her life? Will I get over the nerves of watching her on the soccer field some day worried that her heart will beat so fast she will feel like she has ran a marathon? She will always keep me on my toes for sure!
Dr. B. said that many times infants who present with this take the meds for nine to twelve months and then the evidence of the problem disappears on the EKG. We have recently gone from visiting the cardiologist every three months to every six months but the last EKG still showed evidence of WPW. Ella continues on her meds and continues to thrive and grow so we put our faith in God that he is wrapping our sweet Ella Bella in his arms and keeping her safe. He created her perfectly and we trust in HIM!
More than likely Ella will have surgery when she is four or five to fix her extra electrical passage way.
I have learned to accept the unexpected on this journey. I have also learned to not take the "little things" for granted in life. I never even knew anything about electrical passageways in the heart before. Something so small it can only be seen on a microscope can cause some big hiccups. We are wonderfully and perfectly made!!
Psalm 139:14
I praise you because I am fearfully and wonderfully made;
your works are wonderful, I know that full well.
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