It’s harder because its invisible.

Well, I guess you can see her feeding tube, but you cannot see the fact that her little heart is working so hard to make the rest of her body work. Recently, Lindsey and I have seen what we call a developmental explosion with our little bean. She’s rolling over like crazy, babbling, and interacting with us so much, it seemingly masks any physiological dysfunction that may be occurring. It is this fact that made yesterday’s cardiologist appointment with Dr. Khan so difficult for us to accept. Myla has not gained much weight in the last month. As I had mentioned in my last blog, Myla has been vomiting more volume, so we had kind of expected limited weight gain. With all of her activity, we knew that she was burning a lot of what she was taking in rather than storing in the reserve tank, otherwise know has her thighs. Dr. Khan let us know that it was her opinion that we need to proceed with Myla’s surgery to repair the holes in her sweet little heart. If we continue to wait, we risk possible permanent damage to her lungs, which would lead to newer and even scarier problems. This news was not easy to hear, as our last appointment was a positive one with the news of her ASD closing by 50% and her VSD showing signs of closure. The concern, however, is not the size of the holes, but the amount of blood that is flowing through holes and the impact that the blood may be having on her longs. As Dr. Khan explained this to us, Lindsey cried, I asked questions, and Myla cued, giggled, and played with the paper that lined the doctor’s table. That picture, if it could be snapshot, is a perfect emotional translation of that moment. Mom and dad are reacting in the ways that we react. Lindsey is the most emotionally honest person I know. It is one of the reasons that drew me to her. I sometimes lean on being a dispassionate/logical problem solver when my stress is activated, and Myla is just being Myla; strong and sweet. I took the remainder of the day off of work to be with my wife and daughter and attempt to sort out the emotions that we were feeling. There was fear, anxiety, sadness, and anger. The feelings came out through tears, harsh words, and questions to whatever is out there…God…science….as to why our baby (or babies in general) are afflicted in such ways. In a previous blog, I spoke of doctors that care. I left around 3:00 to see my evening clients after making sure that someone could be with Lindsey when I left (thanks Glen). When I returned home, I found out that Dr. Khan had called Lindsey and spent about 50 minutes on the phone with her answering questions, providing insight and just supporting Lindsey. Dr. Khan gave us many words of wisdom. The words that resonated the most with me were after she had to reschedule our appointment from last week to Tuesday due to a family emergency she said, “Mrs. Roth, this not the doctor telling you this right now. It’s a human being to another human being. What I dealt with over the weekend was not curable. What Myla has is completely curable.” We are terrified, but at least our terror is related to a cure not the disease itself. Dr. Khan, you have demonstrated to us time and time again that you truly care about Myla. Thank you.

We did have one decision to make. We could opt for an exploratory catheter procedure to attempt to measure the amount of blood flowing to the lungs; however, the doctor believed the end result would still be surgery. So we have decided to forgo the catheter procedure and given the okay for Dr. Khan to set up a surgical consultation with Dr. Spray, the chief cardiothoracic surgeon at CHOP, and also schedule the surgery. We believe it will occur by Christmas. Our cardiologist suggested a pseudo-medical quarantine so to speak for the two weeks prior to make sure that Myla is not exposed to anything that would the push the surgery further back. So if you want a taste of the little Bean prior to surgery, email or call us soon because we don’t know how quickly things will move. I will do my best to continue to update this blog as it relates to our precious, magical Bean, our family, and this amazing, terrifying, loving, sad, and hopeful journey that we have embarked on. Myla, these writings will be a documentary of your strength and when you are old enough to ask mommy and daddy why you have a scar on your chest, we will read you your story.