The boys are ONE WEEK OLD today!
Today’s medical updates!
The only real change today was that they started them on caffeine. Also, J and I gave them baths this evening. Our first time!
The high level chromosome and the more detailed microarray results came back…normal. What that means is that we’ve ruled out diseases that include “count” issues, such as too many chromosomes, or a missing or duplicate gene. (A common example would be Downs Syndrome.) One particular disease that applies to us in this category is Miller Dieker. So we learned a little about what the boys do NOT have. That information was being passed on to our Geneticist, who will likely meet with us soon to discuss next steps. I believe the next step would be to look for gene mutations. That is more complicated, and might be a wild goose chase. It may make sense to wait and learn more about the boys, then see if we have any clues so we know what to chase.
The MRI was today at 5:00! J went in with L and Mima and I went in with N. Radiology was dictating it tonight, and we are hopeful that we can have a conversation with the neurologist by tomorrow afternoon.
While we were in there, one of my first thoughts was that we were finally getting the MRI and the revealing images we need to understand our boys better. This will paint the picture.
My second thought was…it really tells us nothing. Don’t get me wrong, we are still eager to see the brains, and understand their structure. But regardless of the images, and however bad they may be, the boys have already shown us they don’t always follow the rules. So a picture will tell us nothing about THESE boys. And even if the images ARE bad news…that won’t take away how thankful we’ve been for their strength and success thus far, and how much we believe in their ability to overcome.
My prayers through this journey have changed often. I posted early on about the long list of things I had been praying for. Around the last few weeks, perhaps after N surprised us all with his growth, I most often simply prayed… “I trust you”. The last few days, as we approached a certain birth, I just asked God to be undeniably present. Present at the birth, with the boys, with the family. Either in their amazing recovery or in our ability to grieve if needed and find the meaning in all of this. As the beeps and groans of the huge machine surrounded my tiny boy this evening…I prayed again…”please be here now, be present in this testing, the results, and in our ability to deal with this, with our teeny tiny guys in this big big process.” Clear as day, over those same beeps and groans, I felt the response. “I’ve been here all along”.