However, this is only the beginning of our story. On Tuesday morning, the pediatrician came to do a check-up on Asa. He listened to his heart and noticed a very loud murmur. At first we weren't too concerned as TJ had a murmur as a child that went away. But the doctor wanted to do an echocardiogram just to check. We are so glad they did.
They found that Asa has a rare congenital heart defect called Ebstein's Anomaly. The most basic description is that a valve in the right side of his heart (tricuspid valve) didn't form correctly and is lower than it should be. This causes backflow and sends blood back into the body with lower oxygen.
Once diagnosed, the doctors transferred his care down to Hershey Children's Hospital. We quickly went home, packed our things, grabbed Asher and Kate's mom who had been watching him, and came down to Hershey. We have been here ever since.
The past week has been the most trying time of our lives. We have quickly learned so much about how the heart functions and how that impacts the rest of our bodies. The cardiology team here has been incredible. Each case of Ebstein's Anomaly is specific to the child and his own heart's anatomy.
Thus far, they have a clear understanding of what exactly is malformed in Asa's heart. However, we are still investigating and assessing how that impacts the rest of his body's functions. The doctors also need to evaluate what supports he needs to function well, and what it can do on his own. This all takes a lot of time, especially with him being so young and needing to generally adjust to life outside the womb, as all babies do.
To complicate things even further, on Thursday evening they found that he had contracted RSV. Even so, he has been doing fairly well. He is already on a ventilator (a support needed for an unfortunate side effect of a medication that is keeping his heart functioning for now), so that has helped to assist with any difficulty breathing. The nurses are also regularly clearing mucus to prevent any obstructed airways. This virus has just delayed some plans for assessing the needs of his heart.
In God's kindness, this weekend was slower and included a good amount of rest for all. Hopefully this week, as he continues to recover from the RSV, we are able to move forward and have a clearer understanding of what is next for Asa and his heart.
We feel incredibly blessed to be down here in Hershey, particularly because it is so close to TJ's family. Between his parents, and Kate's mom, Asher has been well cared for and spoiled by everyone. He is still struggling with not seeing mom and dad much. TJ is able to go stay with him each night, which seems to give him a bit of normalcy and comfort.
Kate has been staying in Asa's room with him. With her continued recovery from the C-section, this set-up has been more comfortable physically. Being by Asa's side has also been reassuring emotionally.
We don't know what's next but we are seeking to trust the Lord with our son. He truly is a gracious healer. We have seen countless fine details of this story so far reveal how He has preserved our son's life. We hold fast to the belief that the Lord will bring us through no matter what.
With the intensity of everything happening, we likely won't be able to reply to many emails, texts, or calls. Your prayers are greatly appreciated! We will try to send another update as we are able.
