Getting Back

We're home 48 hours now and it's another transition period like it was when we first arrived home. Not nearly as difficult a transition (4 days in the hospital versus 4 months) but still transition. Simon is getting more and more like his old self with each passing hour and it is simply a joy to have his whole face back. It's been 6 months seen we've seen that punum (face in Yiddish) and he looks like a different boy. My boy for sure but different.

He's definitely still in post surgery mode, waking up wailing from naps, wondering what the hell that feeling in his belly is, not wanting to be held close because of the pressure and discomfort it causes, and throwing up a little more as he acclimates.

I have to remember that I am a week and a half post surgery and still not feeling completely normal. He's just a few days away from it AND a baby with a heart condition.

We are just going to take it nice and slow for the next week or so. Both of us.

Last night when Simon had his 10pm wake up, he woke up hard and it took almost 20 minutes to get him back to sleep, I realized somewhere around minute 17 that I was in fact quite crispy. Simon needed to be bounced and oddly enough (read in sarcasm- remember I am post surgery too) that wasn't feeling great on my back. It took me way too long to agree to let Jaime be on duty and was in the unfortunate place of being ready to throw Simon at her and run out of the house.

Gotta get to that 'handoff' place earlier. It's hard though. I want so badly to be able to insta-soothe and when I can't the taurus in me digs in and just wants to stick it out and make it better for the little man. Clearly at my own expense sometimes and that's not so good.

You put the oxygen mask on yourself first and then put it on your little one. But please, that's just not the instinctual response.

So, we're inching, creeping back to what felt like a normal life before we went into the hospital on Wednesday-which sucked by the way.

Wednesday and Thursday were so hard. To once again be out of control of the basic things (noise, sleep, activity/mobility) was so much harder since we'd had a two month taste of what life could be like after our last Hospital stay. I felt my heart alternately breaking and raging. "This is not what is good for Simon" my head was screaming. He couldn't nap, he couldn't settle, we couldn't walk around, he got poked over and over (yes, once again they couldn't get a Picc line in). He had a board on his hand for his IV and then after surgery he had an additional one on his foot so he couldn't stand up (his new favorite activity).

Thursday was the worst until we moved from bed 18, right by the door, back to our old digs at #22. Huge Shout Out for Megan who as soon as she found out that #22 was being vacated, asked if we could move over. Another major shout for Carol who made sure that as soon as possible we got the ok to go out for a walk. Both things really helped both Simon and I turn a corner with our time in the PICU.

It's a complex mix of really enjoying the people, the support, the care for Simon, and hating, and I mean hating with just about every cell in my body, save for the rational few that can keep the big picture in mind, being back there, being out of control of Simon's moment to moment environment.

Blech.

But I will say this- That boy is loved there. In the first two hours we were there, I think no less than 40 people stopped by bay #18 to say "Hi". He is a ray of light. Between Dance parties and conversations about accidents I think that Simon being in the hospital is a tremendous gift. How fucked up is that? So many silver linings on our journey so far...I think that somehow all of this was meant to be and there will be magnificent outcomes for all of us. It makes me a little nauseous to re-read that given what it means for Simon and Jaime and I to go through all this but I also guess somewhere deep down I feel it to be true. Maybe I need to cut back on the vicodin (haven't taken any today so maybe I should ;-)

Ok, Simon's sleeping so that means that I should finish my lunch and get my self to nap as well.

Huge love to all

Laura

"I am soooo ready to be done with this."

These cheeks are good for storing nuts during the winter.Or, freeze dried peaches as the case may be.