Since our stay in the NICU we have had several follow-ups, and we have had follow-ups from those follow-ups. And we will have a few more follow-ups before Johnny turns 1. And I imagine there will be more follow-ups after that. It feels like we will be following up on things for the rest of our lives, and I wish we could just be done and settled. But I am thankful that so far all these follow-ups have given good results.
Then finally, Johnny failed the infant hearing test, and a more advanced test showed he has a mild to moderate hearing loss. Hearing loss is associated with VACTERL Syndrome, so it was not a total surprise. He can hear, but if he doesn't get hearing aids he would be missing quite a bit and could develop some speech impediments. So we would also be following up with an audiologist to get him fitted for hearing aids. It was sad to think that Johnny will have to wear hearing aids for the rest of his life. It's just another thing to make him different from all the other kids. But after everything else we were dealing with hearing aids seemed like small potatoes.
|Johnny tries his hearing aids for the first time. He seems to notice the difference!|
The MRI also went well and no tethered spine was detected. However he does have some curvature in his spine, and they noticed some abnormal curvature in the aorta of his heart. So we would be following up with an orthopedic surgeon and a cardiologist.
|Getting ready for the MRI|
The "orthopod" (as some call them), said that Johnny just is too small right now to be able to tell if the curvature in his spine will need any intervention. So we will be following up at 6 months and 1 year of age.
The cardiologist had a lot of information for us, and I am very bad explaining it, but what it comes down to is Johnny heart is working fine and will not need surgery. There are a couple of mis-formed arteries, but they work. And of course, he wants to follow up with another ECHO in a few month.
|Waiting at the Cardiologist's office|
|At the doctor with Grandpa!|