5/25/2011 168 Days Old
May 25th, 2011
On the 168th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya stayed asleep as I got ready and left for work. While I was at work Grandma Patti came by to help take care of Maya.
Today was a half day for me, and my last day of work before summer break. Today was also the day that Maya was scheduled for a visit to a cardiologist at Children’s Mercy. We loaded her up in the car and headed to the hospital shortly after one. We were able to get a lot of questions answered today. Maya had an echo-cardiogram. It was the first time since she was 4 hours old that we actually got to see what was going on in her heart.
Maya is not in congestive heart failure. She does have pulmonary hypertension. When Maya was first echoed at 4 hours old the cardiologist found 4 heart defects. Of those 4 heart defects 3 of them are not currently an issue. The only defect that is causing her trouble is the ventricle septal defect. It is allowing oxygenated blood from the right side of the heart to flow back into the left side of the heart and is increasing the pressure there. So her lungs are getting flooded with much more blood than they should, and because of that or possibly because of another congenital defect Maya’s lungs suffer from hypertension.
What does all that really mean? We don’t really know. But we do know the medical reason why Maya is still here with us and doing so well. The Dr. was not sure how Maya would progress as she ages. He still seemed to think that she has very little chance of seeing her first birthday, and he did not really speak with specificity but we got the impression that he thought Maya would probably make it to about 10 months before her heart issues would be to much for her.
We spoke of different treatment options today. It is possible to get Maya a surgery that would close her V.S.D. It would be very risky. Maya’s chances of recovery are very slim, and the surgery might not fix Maya’s hypertension. It was his recommendation not to pursue surgery, and we agree with him. The risk is too great for the small chance that Maya may get better. We can’t put Maya through so much struggle and so much time in a hospital for such a small chance.
So we are back where we have always been. Every day is precious and fragile. We will not take any day for granted, because it is one more day with the most amazingly strong willed and beautiful little girl in the world.
test Filed under Uncategorized | Comment (1)One Response to “5/25/2011 168 Days Old”
It sounds like your appointment was at least somewhat productive and you didn’t have to use force. As always, I’m rooting for her. I bet she will see his 10 months and raise him a few. She’s a fighter!