Goodbye, other shoe

Four weeks ago today, Sam had a 12-hour surgery to reconstruct his diapragm using the lattisimus dorsi muscle in his back. This is him today:

Okay, seriously. Brown cords. Sweater vest! Tube in nose!! Lego-Guy comb-over hair!!!
WILL THE DEGRADATION NEVER END?!

And we've added a dorky hat. Hilarious, mum. Really funny. 

We had follow-up appointments up the ying-yang on Tuesday. The highlight was a conversation with our surgeon, Dr. Mary Brindle. It went sort of like this:

Me: So for a year and a half now, I have been waiting for the other shoe to drop. And now I have this amazing sense of relief, but I want to make sure it's actually grounded in reality. I need to know what the other shoe might be now.

Dr. Mary: There is no other shoe.

Me: So he is like really, really likely to reherniate now, right?

Dr. Mary: He's really UNlikely to reherniate. Really, really UN. LIKELY.

Me: What did I say?

Dr. Mary: You said "likely."

Me: Wow. Paging Dr. Freud. So really UNlikely to reherniate. That's it. He has a diaphragm. He has two lungs. He just needs to recover now.

Dr. Mary: Yes. And he will.

So, um, that was pretty great. Then we discussed the risk of bowel obstruction, which happens with some CDH babies when their body tries to digest the synthetic diaphragm patch. But Sam has muscle -- his own growing, moving muscle -- between his bowels and any patch material. So that's not likely to happen either. And then we discussed the risk of scoliosis, which sometimes happens with these babies because the two sides of their chests don't always grow evenly. We just have to take a wait and see approach on that one.

Then we went downstairs for Sam to have a chest x-ray. This gives us a post-recovery marker of what his anatomy looks like and just makes sure everything is okay in there. On the way back upstairs to clinic, I stopped to fill my water bottle. Somehow, that was enough time for Dr. Mary to have reviewed the chest x-ray and we returned to Sam's exam room to find a note written in pink highlighter. It said:

CXR looks awesome!!! Mary.

I kept the note.

So the only even sort of kind of bad news of the day is something we expected. Our Sam is one skinny baby. He lost nearly a pound. And when you haven't even eeked out a whole 17 pounds in your life, that's a lot. Two months ago, before we found the reherniation, Sam was hanging off the bottom of the growth chart by his fingertips. Now that growth chart is a scribble in the distance. So we will continue NG tube top-ups for a while until he is strong enough to take all the necessary calories on his own.

Unfortunately, the (many) things I know about putting on weight do not apply here. From what I can gather, I should not feed my baby potato chips and ice cream and burgers. Go figure. Sam just had a major trauma to his chest and back, to his heart and lungs (especially since he also got pneumonia in ICU). Even respiration uses extra energy for him. We need to try to get lots of quality calories into his tiny belly so that he can grow and heal. Luckily, I have some mama tricks and a fabulous hospital dietician up my sleeve. (Heehee. Enjoying the image of Candace tucked into my sweater sleeve, so I'm not going to adjust that sentence.) 

Next up is physiotherapy and occupational therapy to help Samuel catch up on his gross motor and fine motor skills. Oh, and getting me and my little family of six all whole and healthy and normal again. Because I surely have the grace and wisdom to know that we are never guaranteed another breath, but I don't like living with real threat hanging over my family either.

You know that cliche that says, "live each day like it's your last" - ? Well, I don't recommend that, actually, unless you're super evolved and can be all joyful and connected and peaceful while really *knowing* that the other shoe is gonna drop shortly after nightfall.

Goodbye, other shoe.

Just one more photo.... before I topple over....