Thursday, July 22, 2010

Not so good news...

Well we had our level 2 ultrasound today at SMMC with Dr. Lu. It was such a long ultrasound, it seemed like they would never be done, it was much longer than the first level 2 ultrasound we had. Our little Nikolas seems to be pretty sick. He has bilateral solid renal masses and a small cortical cyst on his left kidney. Basically, tumors on his kidneys and a cyst on the left kidney. His heart is also enlarged because of septal wall thickening and ventricle wall thickening. It is taking up 60% of his chest cavity, were a normal babies heart would take up 50% or less. Also, one of the ventricles in his brain is dilated, which the doctor could not determine for sure why this was happening. Dr. Lu did some research with all of these symptoms and came up with a probable diagnosis of Tuberous Sclerosis. He said he is a little more than 50% sure that this is what Nick has.
Here's a definition of TSC:

The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Some people with TSC experience developmental delay, mental retardation and autism. However, there are also many people with TSC living independent, healthy lives who enjoy challenging professions such as doctors, lawyers, educators and researchers.

He will need an MRI to determine if he has tumors in his brain, which would give us a definitive diagnosis of TSC. It is possible that we could do the MRI before he is born but they may not want to do it until after he is born.

I am devastated. Even if he doesn't have TCS he has all these growths all over his little body and if his heart continues to grow it could cause it to stop working even before he is born. I don't know what to do, I'm a mess. It just scares me that these growths happened so fast. When I went for my 32 week ultrasound, which was a biophysical profile, they did not see anything at all. I don't know if she missed it or he wasn't having issues then. I know I need to put it in God's hands because I obviously cannot control this but this is so hard. I just want him to be healthy. Please continue to pray for him, I know God can do miracles and a miracle would be so wonderful right now.

I will continue to update as we get more information.

1 comment:

  1. Joe and Laura,

    Thanks for keeping us updated. We don't have words. If you need anything let us know. We'll be praying and having others praying for you guys as well.

    Love, Chris and Amy