I have gone to write this post four times now but keep getting distracted. If I am honest with you all and with myself the "distracted" is probably intentional. It's hard to deliver big news sometimes, and I am processing the news we received this past week.
We found out that Nolan will have to have open heart surgery.
The echocardiogram showed that the holes had not closed at all. While this is not the news we wanted, we were happy to see Nolan's cardiologist (Dr. V) was blown away by his progress and weight gain. He even asked us how we fed him because Nolan's percentage of growth is unheard of for a child with such a large hole in his heart.
Dr. V told us, "No one wants to go to surgery, but Nolan could not be in better condition to have open heart surgery!"
Each child that is being sent for surgery must first have their case presented on a panel of 20 cardiologists and three cardiac surgeons for Sibley Heart Center. This call is held once a week, and all cases must have a unanimous vote for the treatment the cardiologist is suggesting. From there the group of 23 will then vote on 1 of 3 cardiac surgeons that the group feels is the most qualified. Once a decision has been made you meet with the cardiac surgeon and schedule a surgery date.
In two weeks Nolan's case will be presented on the cardiologist panel. We will not know about dates and scheduling until we hear from them after the panel call on 9/25.
We have more waiting to do but thankfully have a plan and know what to expect.
Joel and I are choosing to believe this is good news. We are thankful prayers have been answered, and Nolan is thriving. We are also grateful that we are in the hands of a fantastic cardiac team and they are right here in Atlanta.
This type of heart surgery is an "easier" surgery in the cardiac world. Apparently, 1 in 100 children are born with a congenital heart defect. Of those about 25-30% have a VSD (this is the hole that Nolan has).
We were most surprised to hear Dr. V say that by the time we leave the hospital (5-7 days) after surgery we will see a massive difference in Nolan and within a month he will be an unrecognizable child. This is because of how successful these surgeries are and the progress that happens once the holes in the heart are closed.
While we are choosing to be positive, and Nolan is doing extremely well, it is still hard. We have had our ups and downs this week, and we will likely have them until the surgery is over. I know that surgery 100% necessary, but I still can't wrap my head around this operation on our tiny baby.
This past week I got connected with a few other heart moms. They were so open and beyond helpful. One of which, Kristin, has a daughter that also has microtia. She was a gift to me this week, and I know she will continue to be. Seeing her daughter thriving after her surgery gives us so much hope.
As we go into the next steps, we will be sure to keep you updated. We don't know an exact timeline yet but surgery should be in the next eight weeks or so.
Thank you for continuing to support us. If you pray, please pray for strength for our son, peace for us, and a smooth recovery.
More to come.