Yesterday we had our second echocardiogram. Eli was less than cooperative. The pictures they were able to gather of his heart were not the greatest. But, from what Dr. Vernon, Eli’s cardiologist, could tell it still looks like we’re just dealing with a VSD (hole in his heart). She feels it is very small (4-6mm) and will not get any bigger. She even said that it may not require surgery to fix but that she was pretty sure it would. She certainly doesn’t want to give us false hope. She was just reiterating that it was that small. Because our little guy was uncooperative, she couldn’t really determine anything else. She said he might have an AV Canal defect but if he does it wouldn’t really change up the course of action in regards to surgery, recovery, etc.
We discussed the game plan from here on out. Once Eli’s born (hopefully on the planned date of 10/25 but our boy has certainly taught us to expect the unexpected!), someone from the cardiology team at Seattle Childrens will come to Overlake (the hospital we’re having him at) to perform an echocardiogram of his heart. Depending on what time he’s born, it will either be done that day or early the following day. Dr. Vernon is guessing we’ll probably be in the hospital for a few days longer than I was with Cody – babies with Down syndrome tend to have a more difficult time feeding and are prone to get jaundice. Her “guess” is that we’ll be there 4 days. She doesn’t foresee him needing to be in the NICU for anything to do with his heart. I hope this is truly the case. Obviously, it’s hard to predict what will, or even could, happen when he’s born.
I have been told by many that when you have a child with Down syndrome, you have to learn to go with the flow. Those that know me know that I’m definitely not a go with the flow kind of person. I’m a planner. I like schedules and lists. I like to know what to expect. This diagnosis has taught me that where I once thought I was in control, I actually am not. I am following someone else’s plan for my life. God knew His plans for me long before I did. I guess it’s time to go with the flow.
There once was a young girl, Gloria Strauss, who was stricken with cancer. Her story was chronicled by a Seattle Times newspaper journalist. I followed her story closely. She was filled with so much faith. She knew where she was going if she couldn’t beat cancer. She never wanted anyone to fear for her. She had no doubts what waited for her. Her story was truly inspirational. I’ve thought of her often while undergoing my own spiritual transformation along this new journey of ours. She never wavered in her faith. She always knew. Something she once said has stuck with me. ‘Let go and let God’. I think I should listen to the advice of a wise beyond her years 11 year old little girl. I need to ‘Let go and let God’. Gloria eventually lost her battle with cancer. She continues to teach and inspire in her death, much like she did in her life. Thank you for the reminder, Gloria. I will definitely LET GO AND LET GOD. My hands are up. I surrender. He is in control. I am just along for the ride. And if I know anything, I am guessing this ride will be the adventure of a lifetime.