279 Day Blogging Challenge
There are 279 days left until my baby boy's first birthday. So, why the challenge? Well, first let me give you some background. Aohdan was born on 11/26/2010 at 35 weeks and 2 days with a congenital heart condition. The heart condition is Ectopic Atrial Tachycardia with dilated cardiomyopathy of the left ventricle. In other words, prenatally they discovered that Aohdan's heart was beating 230 beats per minute. The average baby's heart beats anywhere between 120- 180 beats per minute.
This condition only affects 1 in 10,000 children. Aohdan's condition was discovered prenatally around 23 weeks. The moment that it was discovered that he had a fast heart beat I was rushed to the hospital and monitored. Then, from that day forward I was going to the doctors 4-5 times during the week to be monitored by a series of doctors (pediatric cardiologist, perinatal specialist, adult cardiologist, Ob/Gyn, etc.) I was prescribed medication to help Aohdan's heart rate. The medication managed to get Aohdan's heart rate down to the 170's after some time. However, the left ventricle remained enlarged and was not contracting sufficiently. This is considered heart failure, however, Aohdan's body for whatever reason had learned to adapt to this condition while in the womb.
The big concern was what was going to happen once he was born?
It was recommended that I go out of state to receive services at a more advanced hospital that could attend to Aohdan's needs upon birth. On October 26th, 2010, with the assistance of my mother, I packed up and we took the train to my birthtown Minneapolis, Minnesota where my sisters and father live. I left my husband, stepchildren, friends and home. Aohdan was born on 11/26/2010 and admitted to the Neonatal Intensive Care Unit (NICU) in Minneapolis. The time spent in the NICU was filled with a lot of tears. Tears not just of fear, grief, and sadness but also tears of joy, gratitude, and relief. Finally, on January 10th, 2011, Aohdan was discharged from the hospital with a heart that had improved but was not healed. Aohdan's heart function had improved by 15% and currently it has improved another 10%. This means that the left ventricle of his heart is contracting around 40% and a normal heart contracts around 60% and this is the goal.
When I first heard about Aohdan's heart defect I spent hours researching everything I could find regarding the topic. Due to his condition being so rare and not having an exact diagnosis at first it was very difficult to find hopeful articles. Finally, once the plan was in place for me to go to Minnesota I decided I needed to let go of trying to control this situation. I told myself that I was going to focus on cherishing every moment of my pregnancy and taking one day at a time and what will be will be. This remains my motto as Aohdan's heart slowly improves.
To honor our progress, our journey, and his spirit I have decided that I am going to dedicate some time each day to blog about him. This is also a way for me to continue to remain true to my motto, "one day at a time". Feel free to join me on this 279 Day Challenge. I will be sharing my thoughts, feelings, and knowledge about what it is like being a first time birth mother, stepmother, and mother to a newborn baby with a heart condition.
One Day at a Time,
Christine, Aohdan's mamma