Today was a good day.
The boys came off of their EEG. Just in time too, both boys had a few tender spots from having been on it for nearly 5 days.
Here’s a quick shot of each before we took them off:
We were so glad to be able to get them out and cuddle…so we did just that. Poor L is still pretty puffy, but he looked better today than he did yesterday. He still doesn’t look like himself, but he is getting closer.
Neurology is in agreement that we need to focus on medicines that can be given orally, (and therefore can be useful at home), so we were also able to take out L’s IV today. They are still trying to figure out if we can do better with the boys’ seizure management. Both are now taking Topamax as a 3rd medication. We will do a “short term” EEG later in the week to see if it had any impact. I know better than to believe it will only last one hour, but hopefully it will be less than five days. Sometimes…babies just need to be held, and loved like babies.
We took some two week photos today, but I’d really like to give L a chance to look like L before we make those “official”. They also perked up a lot during the day today, so maybe by tomorrow we’ll be seeing eyes again on a regular basis.
Mom and I went back this evening to give them their baths and change their outfits. It felt good to do a little bit of “normal”. And by “good” I mean “fantastic”. And by “normal” I mean…”NICU Normal”.
Today’s nurse also unhooked L and helped us get the boys side by side. It was so special to see these precious guys together.