7 weeks and a visit to Philly--

We spent a long weekend in Philadelphia--the 6 year old desperately needed to see her mom....just about as desperately as the mom needed to see the 6 year old.  And Nana needed to see the wee fella. So--Nana sacrificed the 'girls day out' activities to sit with the wee fella.  Someone had to be there, dontchaknow...and the two of them really needed the time alone.....with each other.

He's horribly pale and horribly small.  He's gotten himself to a bit under 7.5 pounds--which is under one pound of growth since his birth, seven weeks ago.  They won't take that ventilator out until he shows five days of continuous weight gain--significant weight gain.  His little body needs that extra bit to give taking him off the ventilator a chance to be successful.    Of course they're concerned about the lack of weight gain and growth.  You'd not know that from the conversations the mom has with me or anyone else.  I'm concerned about her ability to 'see' what's true at this point..especially when she told me that she still has hope the baby can pull himself out of it and go home for the Christmas holiday.

He's not coming home for the Christmas holiday--they made that abundantly clear a few weeks ago.  IF he progresses to the point of 'release', the release would local.  They won't endorse taking him back to Iowa.  Somewhere she lost that reality.  I spoke with a social worker I happened to run into, privately, about my concerns. She assures me some degree of that denial of reality is normal--but she also told me they'd visit with her about where things were at for the wee one.  He's remained in the cardiac intensive care unit the entire time for a reason.  The social worker had wonderful things to say about the mom and her devotion to her family.  She's an awesome mom--I  do worry this is taking a toll on her emotionally....I just do.....

The good news is he's receiving excellent care--24 hours around the clock--he has his own private nurse assigned just to him.  They know him very well.  So they know what to look for and what's 

'normal' for him.  

And I'm grateful for how well she's being taken care of at the Ronald McDonald House...and what a wonderful job they did with the 6 year old while she was there.  They were amazing.  The families there are all dealing with such hard circumstances.  It's hard to see your circumstances as 'worse' when you see some of the other hardships and traumas they're contending with.  Everyone's in the same boat, trying to hang on to hope and be there for their child.  I'll never, ever pass by one of those boxes without dropping something in.  I never stopped to think it would be my family in need of their houses........but it is.  So many of us seem to think we're somehow exempt from that one.  It's a hard wake up call to realize we're not....

It was a very nice, very NEEDED weekend for the family--myself included.  I needed to know where things were at for the wee one who, honestly,  is soothed into sleeping the day away and is only awake with his eyes opened maybe once a day when there's some kind of discomfort/pain involved.  

I needed to know what was true because I knew it wasn't what gets posted or photographed.  And I needed to get some time with the mom to challenge some of the things she just wasn't seeing.  It's the perspective that comes with fresh eyes.  Even if she didn't want to hear it, I know she did.

There's a hard road here. It's not suddenly become easier because a surgery was successful.  The measure of success was in surviving the surgery and the recovery.  

And we're not there yet......halfway, maybe--but that other half counts for a lot.