So I’ve been stalling posting an update because while the doctors gave us a lot of information about Benjamin’s MRI, we don’t feel necessarily wiser for it. Plus, it’s never easy to talk about unhappy stuff.
The short version: There was some bleeding in his brain, in two locations. The bleeds have stopped. They were in the tissue, so are considered damage. While it increases his risk for disabilities down the line, no one knows what exactly this will mean for Ben.
The long version: What we are looking at are two inter-cerebral hemorrhages (ICH). One sort of big one (to us- the doctors called it medium) in his left occipital lobe and one in his cerebellum. No one is sure how they happened. They are pretty atypical in location and due to his age and probably happened around two weeks ago. So far they have not affected Ben outwardly – his reflexes look good, he reacts normally, he isn’t acting any differently. The damage in the cerebellum is more concerning to the doctors due to statistically outcomes for babies with bleeds there, and the more central role it plays in motor skills and balance. The occipital lobe is key in processing vision. We just won’t know what sort of effect this will have on him until he is further along in his development – like when he tries to learn to crawl, walk, speak, read. The range of possibilities is pretty wide, everywhere from no effect to serious disabilities. Luckily babies brains are pretty amazing and undamaged parts sometimes take over functions for damaged parts and recover in ways doctors don’t even understand. Ben will be getting all the same early intervention and therapies he would be getting anyway due to his early birth – so no change there.
And really – this is not a big change for us either. We knew since January Ben would possibly face serious challenges. The risk is a bit higher now, but we will remain hopeful as always. Like I keep saying – the doctors said Ben would probably not make it to viability, then doctors said Ben might not make it past the first few days – heck, five years ago the doctors told us Amy had a 50% chance herself… We’ll just keep proving them wrong. (Well – actually Amy and Ben will – I just hang around and try to get some of the glory).
For us – Benjamin is perfect and we will love him no matter what.