We watch. We wait. We wonder if today will be the day. The day her heart needs more repairs. We know the day is coming where we will once again have to hand her off to a surgeon. Watch them take her down that long hallway that leads to an operating room. In the meantime we take advantage of every day we have, because we know that none of us are promised tomorrow.

We were only a few weeks into my pregnancy with Dawn when we were referred to a maternal fetal specialist. You see I was in that special category of moms (advanced maternal age) where you get extra EVERYTHING – doctors, visits, test, ultrasounds and more. By the time we reached the half way point we already knew that Dawn would more than likely be born with Down syndrome. What we weren’t expecting was the announcement that something wasn’t quite right with her heart. We were frightened and confused and worried and very unsure of what would happen. Our next step would be the pediatric cardiologist, where it was confirmed that she did have a Congenital Heart Defect. This was the first time we had ever heard those words. They struck fear in my heart! She was diagnosed with Double Outlet Right Ventricle (DORV) and the prognosis would depend on how bad her heart really was when she was born. We would have to deliver at a scheduled time at Vanderbilt so a team would be ready and surgery could be performed immediately if needed. For the next 16 weeks we prepared as best we could for the uncertainty that lay ahead.

At week 37, on Tuesday April 1^st, Dawn’s heart began to have problems and it was decided that she needed to be born immediately. We were told to go straight to the hospital stopping only long enough to get our bags. Within hours, Dawn Isabella Willow Logan made her entrance into the world via C-section screaming and PINK! This is only noteworthy because we had been told to expect her to potentially not be breathing and to be blue. This was the first expression of her strong will and sassiness!

After a thorough exam and echocardiogram she was diagnosed with a different set of problems than originally thought. She had a VSD, ASD, large PDA and Ebstein’s Anomaly. The plan was to get her home, out of the NICU and let her grow and get stronger before any surgery was done. After 23 days in NICU getting her feeding and fluids balanced she went home for 5 weeks, not quite as long as we had wanted but as long as her heart could allow. She went into surgery at 2 months old and weighing barely 8 pounds and that surgery did not go as planned. The true nature of her heart came to light and only part of her problems could be repaired. She spent a day and a half on ECMO and then went back into surgery where a little ‘origami magic’ was performed on her tricuspid valve. She spent another 18 days at Vanderbilt recovering before she got to go home.

Because of the nature of her repaired valve there is no standard action plan, we literally take one day at a time. She is currently experiencing some Tricuspid stenosis, her PFO has opened and another small VSD has come into play. As we quickly approach the 2 year mark and her next cardiology check-up the anticipation and anxiety grow. Will this be when they tell us it is time for her next surgery or will we be given another 3-6 month reprieve? Time will tell.

25% of children born with a Congenital Heart Defect require heart surgery sometime before their first birthday. More research is needed to better understand how to treat and monitor these children to ensure a healthy future for them. The mission of Project Heart is to fund the most promising CHD research to improve the lives of children living with CHD. Want to learn more? Visit our website at projectheart.org.

If you’d like to learn more about Dawn you can follow her Facebook page: Light up the Darkness with Dawn