The Unexplainable

Today is Monday and Caleb is 5 days old. Since his birth, he has had a brain MRI, an EEG, an echocardiogram, and bunch of blood labs drawn. Then today, I was sitting in the NICU at his bedside, waiting for the neonatologist to come by so I could ask her about discharging him, and the most interesting thing happened to me.

I was told that the only test we were still waiting on was a test to make sure Caleb's retinas were intact and developed normally. Supposedly, when there are abnormalities of the frontal lobes, there are often also problems with the retinas since they plug into those lobes. The eye doctor who performs the retina exams on neonates is one of very few in the area and he only comes to Rush Hospital on Wednesdays. I was irritated that Caleb would be sitting in the NICU, waiting for this exam to happen on Wednesday when he had already undergone all the other testing that they needed to do. I just wanted to take him home.

I was in a chair, nursing Caleb, when I saw an eye doctor going around with a nurse and performing exams on the babies in the room. I figured he was just doing regular, routine exams that are performed on preemies or something. When they had gone around the room and were wrapping up, I muttered under my breath "I wish my baby could have his eye exam done today." The nurse immediately looked over at me and asked what kind of test I was waiting on. I told her retinas and she said, "That's what we were just doing." I told her that the neonatologist had said we had to wait for a special doctor to come on Wednesday and she said that the doctor she was with is usually only in on Wednesdays but today was a fluke. She asked if I wanted to go ahead and have him examined right then. My jaw hit the floor!

Caleb ended up having that exam done 2 days earlier than it was supposed to be done. To my relief, after the doctor performed the exam, he declared Caleb's retinas intact and healthy! And finally, the testing was complete!

The MRI had confirmed that almost all of Caleb's left frontal lobe was malformed by the area of heterotopia, and some of it was actually on the right side as well. He was indeed missing his corpus callosum and there was dilation in the 3rd ventricle on the right side and the lateral ventricle on the left side. The neurologist actually said that the area they thought was a cyst looked more like a deformity in the flow between the ventricles. One new thing that they saw in this MRI was an area that appeared to be an infarct, which is a stroke. That is why the doctors ordered blood tests to be done to see if Caleb has any blood-clotting diseases and also an echo to make sure his heart was still in good condition. I was told that it is very rare for something like that to show up in a newborn.

Aside from the MRI results, all of Caleb's other tests came back normal. He has a perfect heart and retinas, and there was no seizure activity on the EEG. We will have to wait for the blood labs to come back because they take a while, but I am okay with that. He is miraculously healthy! The doctor said that he could see no reason why Caleb would have no symptoms with a brain like that. Can you believe it? He is 5 days old and appears to be perfect! I cannot even begin to express my gratitude and joy. We will be taking him home soon.