I'm having a hard time starting this post.
I think I mentioned Ben might be having an MRI. His speech therapist recommended it based on his uncoordinated suck and swallow when she watched him bottle feed. Everyone we encountered thought it was just due to prematurity and being a boy and a twin. All those things can delay feeding. So the doctor went ahead and ordered the MRI basically because "Mom and Dad are getting impatient" and he was willing to do it to rule out anything abnormal and help to make us more at ease.
Friday the MRI was scheduled for 6:45pm. It got pushed back to 7:20pm. They were backed up once he and Jeremy got down there and they didn't get done and back to the room until 9:00pm. At that point the transport nurse told us that the technician who performed the MRI wanted to repeat the MRI with contrast in the morning. At this point I felt like something was wrong since they wanted to do more testing. Of course no one could tell us any more information since there was no doctor to read the results.
Just before 7:00am today the doctor called me at home. He asked if anyone had given me the preliminary results from the MRI and I said no. Jeremy had already left to go to work to proctor the SATs so it was just Ainsley and I at home. He told me that he did see that there was a significant difference between the right and left side of Ben's brain. He said he would have a Pediatric Neurologist come to see Ben and look at the MRI and decide what further test were needed and that they would not be doing the MRI with contrast until the neurologist saw him so that he could determine exactly what tests he wanted.
At this point I talked to Jeremy and filled him in on what was happening and then called my mom who was already planning to come up at 8:00am to go with Ainsley and me to the hospital.
I was sobbing and felt like I could throw up.
I literally fell to my knees on my bedroom floor and prayed for my son.
When I arrived at the hospital the doctor came right down and showed me the MRI. It is very clear that there is a large area on the right side of Ben's brain that has been affected. Somehow and at some point blood flow has stopped to that area. He is optimistic because they were surprised by this finding. Ben hasn't had any symptoms of having anything wrong other than not picking up eating very quickly. He hasn't had any seizures which is how babies with this usually present. He also said that babies that are so young are able to recover well from this, much better than you or I would be able to.
This afternoon the pediatric neurologist came to see us. He defined what has happened as a Perinatal Stroke. It could have happened before he was born or after. He said it looked like it had been at least 5-10 days since it had happened. At this point it is impossible to tell what the long term implications will be. It could result in severe motor disability or cerebral palsy or it could have absolutely no repercussions at all. Over half of all infants that survive neonatal stroke are entirely normal at 12 to 18 months.
We have prayed A LOT today. And one of our prayers has already been answered. We of course prayed for peace during this ordeal. That God would give us serenity to deal with whatever may come and help us to be calm so we can be good parents. At some point today an amazing peace has come over me and I KNOW that everything is going to be alright. Our son is perfect.
13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
17 How precious to me are your thoughts, God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.
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