Wednesday, January 7, 2015

Update on Alec: 16 Months

We had a cardiology appointment up at the Children's Hospital of Philadelphia this past week. We hadn't been up to see his specialist since the beginning of September so there was much to discuss. Alec has been growing well, both physically and cognitively. In our daily lives, there are often moments where I totally forget that his heart condition is even an issue. But, there are also rare moments of concern when he's sick and we are forced to break out the ole pulse ox machine… attempting to hold him still for as long as we can, or until a number shows up. All his numbers have been trending appropriately until just recently.

The past couple of echocardiograms have shown some narrowing between the two major vessels the surgeon connected back in November of 2013. We have been watching his connection over time and praying that it would grow as our boy grew, but unfortunately, that has not been the case. The connection site remains very narrow so we have been scheduled for a cardiac catheterization next month. The hope is that the physician can manipulate the site with a balloon, widening the space between the two vessels so that more blood flow can pass through. Fortunately, this procedure is non-invasive and our hospital stay should be short, only one to two days. We are grateful there is a fix, but so very sad that he has to go through all of this.

We also talked to the docs about Alec's second stage surgery. We are planning for next Spring. Alec will be about two and half for round two, and even though that is a whole year-plus away from now, I am already losing sleep over the idea of it all. With all that to consider, Kiel and I have talked thoroughly about our family and Alec's needs. We think it's best to wait to have more children until our boy has recovered from his next operation. It saddens me to wait, but I know that it will be better for our family in the long run. And to be quite honest, in this very moment, I just feel grateful to have brought one beautiful child into this world. My baby boy is the light of the my life and I feel lucky as hell to have been picked to be his mama. If he is all God grants me, then so be it. My heart is full.

With all that being said, Al is doing great. He's currently rolling around in his crib, sweetly reciting all the new words he has learned throughout the course of the day… snow, sad, clock.. the list goes on and on. He is the cutest little parrot, I swear. For now, he does not know that his heart is different than anyone else's. In this moment, he is so happy, so loved and isn't that all you really need.

Thank you for reading, and thank you for your continued prayers and support. We've got some pretty amazing people in our lives and we are grateful everyday.