We did some things right this time around.

I realized today that if I hadn’t trusted my instinct about “Dr. Luck” Ramona would have had her echo while under general anesthesia during her G tube surgery. They probably would have done the echo first, discovered her aneurysm and taken her off to the PICU for surgery on her heart. We would have gone in thinking G tube and come out thinking holy crap. And perhaps they wouldn’t have had time to work up a good plan. And we would not have been ready.

So things were as they should have been, in hindsight. I will still keep her appointment for a surgical consult for next Friday. They won’t be able to do the G tube surgery for 4-6 weeks but we can talk about it at least and make a plan.

There’s also a downside to being home. I hate to say it, but there are actually some advantages to having your baby in the PICU. The first is obvious: twenty-four hour babysitting. Also, you get to drive around a lot. And you’re usually alone, so no passing string cheese and toys to the yokels in the back and no pulling a neck muscle trying to retrieve a renegade pacifier.

But being home sans oxygen is a really good thing. I will no longer have to silently curse the oxygen tube as I move from room to room, trying to untangle it as I go. That’s good, because I’ve been trying to save all the really choice swears for changing crib sheets. I can also burn candles and light the stove when Ramona’s around without fear of setting off some big explosion. That’s good because blowing up baby is not.

What’s been the best so far about having Ramona home is being together. When we got back Simon was in the highchair having dinner. We plopped Ramona in her bouncy seat on the kitchen island and it was just like old times. When I put her down in her crib, she zoned in on a beautiful painting by Andy’s Aunt Rosemary that hangs above her crib and I could see a flash of recognition. She fell asleep, Andy and I poured a glass of wine and shared that for the first time in a while we feel really lucky.

Now we wait again. There is no set plan for Ramona’s next surgery. They don’t know when or what it will be. We will be weaning her once and for all these next few weeks from her methadone and ativan. The doctors feel she is strong enough now and we agree. We will also consider some sleep training, but not until she’s through the weaning process and fully healed from her surgery.

Thanks so much for your prayers and support, what a crazy week or so it’s been. Here’s a pic of Papa and Mona awaiting discharge.