In May we sat down with our cardiologist to discuss what we did know about Cora’s special heart, and we went over the likely combined heart defects that she might have and what that might look like as far as treatment and surgery. What we learned is that we don’t know much. It is likely that she has one of two main CHD’s. She PROBABLY either has a single ventricle CHD or Tetraology of Fallot with possible Pulmonary Atresia. We will not know any more than that until we get her home and she is seen by the medical team that we have used for Maggie Jane.
We also learned something else about our sweet Cora Hope. We learned that she most likely has what is called Goldenhar Syndrome. Maggie’s cardiologist said it as soon as she saw her pictures and while it wasn’t a complete surprise to us, we were caught a bit off guard. Goldenhar is a diagnosis for a wide range of issues. It is very likely that Cora will have hearing loss in her left ear, her left eye is a little smaller than her right, and she very well could need facial reconstructive surgery. Again, we will not know what she needs until she is home and can see a Craniofacial team.
This one was hard for us. While we have obviously not dealt with Cora’s exact cardiac needs, we know the heart world. We’ve navigated it before and continue to navigate it. We don’t know anything about the GH world. It’s completely new to us and that scares me. However, we do know that our God is in control and holds our girl and us in His hands and He will go before us on this journey.
When we said over and over that our family was complete, He knew it wasn’t.
When Maggie and I prayed for a family for her, He knew we’d be hers.
When we said “yes” to her special heart, He knew there was more.
When we wonder what her special heart will need, He knows each step.
When we fear what she’ll go through emotionally and physically, He knows.
He knew and He knows each step and we rest in that.