Living with Grace
My dear friends,
I truly do not even know how to say these words, but as you might know Tyler and I and our families are amidst the darkest days we have encountered in our lives. After a routine doctor visit almost two weeks ago, we were informed of our baby girl’s dangerously high heart rate. I was sent to the hospital immediately (where I stayed for almost two weeks). The condition of our baby’s heart was rare (>1%), but considered treatable with drugs. I pushed myself to the limits physically taking cocktails of cardiac drugs that are designed to slow the heart rate (both baby’s and mine). After 9 grueling days with an expansive expert medical team, we finally got her heart rate under control and converted to a normal range; and what was expected next was that an almost immediate improvement would be seen in the strength of her heart and ability to pump out the accumulated back up of fluids. Unfortunately the weakened state of her heart did not improve and even worsened over the next 24-48 hours, leading the doctor to the conclusion that it was actually her weak heart that caused the SVT/ arrhythmia. This is an even more serious and truly rare condition, cardiomyopathy that cannot be treated In an unborn baby. We were told that our baby girl will not survive under any conditions. She may live another few days, weeks, perhaps even months, but would not survive through the pregnancy or outside of the womb. If a miracle occurred, she would live to her birthday only to endure the most invasive of medical procedures to attempt to sustain her life (heart transplant, breathing tubes, feeding tubes etc). I am 24 weeks pregnant. We have no choice, but to wait day by day as her heart continues to beat until one day when it doesn’t, at which time We will return to the hospital to deliver her.
We are of course sick, devastated and feel completely broken. We are struggling to digest this reality and attempting to live our lives under the heaviness we feel in our hearts. It’s a minute by minute, hour by hour, day by day situation. Our families have been tremendously supportive, and each time we share our sad news with a close friend- we in someway feel human and connected for a brief moment. Tyler and I are leaning on each other in a way that I never even knew we were capable of, and we find some strength to carry on together as we look to our happy, healthy children. We treasure these little joys even more than we could have ever have imagined, and know that they are such a true blessing to us.
We thank you for keeping us in your thoughts and prayers during these dark, dark days.