The Guardian of the Feeder

(When you finally get an evening free -- this is what you opt to do?!  LOL  Nice of her to sit mostly still for me!)

3 Weeks and 6 and a half years.......

They closed his chest on Sunday.  Much like the other surgery, they struggled to get his blood pressure regulated.  It would seem, after a couple blood infusions, that he's doing much better.  The patch over his little opened chest was bad enough--add paleness to that mix and.......I didn't share any of the photos with Bug until I felt they were 'okay' enough to share with a six year old.

We've been up front with her, best we can, since he was born.  She no longer talks in terms of 'when' her baby brother comes home, it's now 'if' he comes home.  Even with a successful surgery, there's still a long healing process with loads of complications that could change everything.  Today he's three weeks old--we didn't think he'd ever see that and we're all blown away and so blessed that he's been able to.

The surgeon has called the hospital every two hours since the surgery.  As the professor of surgery, he's got a vest interest in the wee one being able to go home with his parents, even if it means some degree of medical intervention.  The parents want that--the desire is to give their baby a chance of life with a loving family, no matter the circumstances.  There's no timeline, no guarantees--but the girl and her partner want a chance to bring the wee one home and to just love him because he's a precious thing.

I tell people the girl's not MY  daughter, MY child, MY....anything.  She's a child of G-d and I have the privilege of having her in my life to love.
The girl has a clearer understanding of what that means today.
She's done a wonderful job in the stinky circumstances.  I'm proud for her and proud of her.  She's had to make decisions I never dreamed she'd have to make....and made choices based not on her own selfish desires, but out of love.

We're so immensely grateful and overwhelmed by the loving support of people we know..and so many we don't know but surely WANT to come to know.  Friends, family, friends of friends,family of friends, coworkers and compassionate strangers have given to help with costs so the girl and her partner can be with the wee one.  There's been so many.
It's been emotionally overwhelming to be in the circumstances we've been in--and it's been equally emotionally overwhelming to break through barriers because someone let people know there were barriers that were getting in the way--physically, emotionally, financially and spiritually.
Frankly, we were all too busy dealing with the chaos and pain that came with the package.  But that didn't stop others from chasing solutions and making things happen.
I get teary eyed just typing that out.
So may people have reached out to help.  It's been amazing....



Today the wee one is three weeks old.
We didn't anticipate having him this long--
We didn't anticipate there was another solution out there -- even if it wasn't a 'perfect solution', it was a chance,
And he's beat the odds so far.
Not without major amounts of drama--(I swear he's a drama magnet.) but three weeks is a miracle.  Every day is a miracle.

He's got 2 parents that love him without fail.  And a big sister who's rooting for him and wants him to be able to come home.  She's six years old and shouldn't have to contend with this--but she's contending with it well....asking hard questions and supporting mom and dad with great love.
And she loves her baby brother.  She loved him before he was born and she'll love him passionately forever.

She was going to be a giraffe for Halloween--and opted instead to be a cat.  I suspect she'll change her mind again before trick or treat happens, but she'll have ears, nose, paws and a tail to be a cat any time she likes.  Nana's a sucker like that....
And she now has a stuffie just like her brother's--so when she wants to pat him and whisper to him, she can whisper and pat the stuffie--cuz there's one laying next to him in Philadelphia and I'm SURE the messages she whispers get to her baby brother.
She spent the weekend whispering to the stuffed animal, carrying it with her from room to room. That's just a small example of a great love.

We'll all keep doing whatever gets placed in front of us--and we'll do it a day at a time.  We'll all go to bed at the end of the day drained....but we go to bed knowing we've loved well.
Whole hearted love--without reserve.

And somehow, we'll get the energy we need to do it all over again when the sun comes up--no matter how long or even IF the head's made the pillow.
I know where that energy comes from--and it's not from me.  I can't muster up nuffin' right now--except the commitment to do whatever's placed in front of me with great love--because it's not right to cheat others (and yourself) by doing less.

Bug reminds me of that--even with pointy ears, fuzzy paws and a swishy tail.....
She's brilliant like that.
And so I'll pay attention and follow the lead of the six year old.......

I'll do whatever needs done TODAY and I'll do it with great love.

Surgery #1 -- success!

Prayers and positive thoughts hold a lot of weight--I'm convinced G-d hears....

The wee one (pictured looking a bit medicated this a.m. with Ella Stuffie--the one Nana says he can't be without!) went in for surgery at 8:30am was finished at 2pm and moved to recovery at 2:30.  The booger took less time getting step 1 (of 3 heart surgeries) done than his Nana did getting a broken leg fixed.  :-/  I'd be a little envious, but I'm so flipping relieved I can't be anything but.......relieved....and grateful.

The surgeons were pleased with how surgery went.  They'll leave his wee chest opened for 2-3 days before closing it back up.  They put a drain in his tummy where fluid had been collecting and they're running tests to make sure there's no reason for concern.  The next 24-48 hours are still high risk--it's that delicate balancing act with medications in a wee person.  I'll try to remain hopeful--  The stinker has this deal about drama.  Time and time again....JUST when you think you can breathe and relax a minute....more drama.....  

For the moment, I'll try to remain grateful and relieved for THIS moment to have ended with success.

....CHOP

There's something weird about a children's hospital going by "CHOP".  

The wee fella had his first airplane ride--at 2 weeks of age.  Quite the birthday prezzie if you ask me.

The Children's Hospital of Philadelphia provided the mom and dad with the second opinion--and gave the wee one a 50/50 chance of surviving the first surgery.  He'll need three (at least) heart operations and, if he survives, a transplant when he turns 12 or 13.

How could you NOT take the chance?  The other option was to do nothing and opt for 'compassionate care'.  They took the chance.  And the photo is himself arriving at the Philadelphia airport.  They were kind and let the mom go with him in the plane.  The dad had already left for Philadelphia.  In fact, the dad was IN Philadelphia before the baby was.

Mostly because they had the wee fella loaded up and in the plane on Sunday......and decided there was a malfunction with the plane and the equipment necessary for moving the baby from point A to point B.  So back they went to the hospital in Iowa City.....and they promised they'd send a different plane and different equipment Monday--which they did.  And that's how dad ended up there before the baby!  It's also the story of how Nana got to spend the night with the wee fella and mom before they departed Monday.  It's also how I managed to make Monday's departure without falling apart.  I did all that on Sunday, dontchaknow......

There was something about seeing the elevator doors closing with the mom and the baby ( along with 5 CHOP personnel), knowing that might very well be the last time you see your grandson....knowing your child was going through all this 'stuff' without your physical presence..  *sigh*  Still hurts my heart to be here while she's there contending with everything (not alone, mind you....just without me....).

No tears on Monday.

She asked me to be HERE to help take care of the Bug.

So that's what I'm doing....that's what both 'grandmothers' are doing.

No tears today.  I grabbed soccer shorts, long sleeve shirts and new shin guards for the Bug since she started soccer practice this evening.

So no tears today--just a lot of lovin' from the 6 year old.

But Thursday....when the wee fella goes into surgery?  .....One way or the other, there's going to be tears.

I can hope and pray for 'good' outcomes, but I don't know what's 'good' in this case.  I just don't.... So I'll just pray and thank the Big Guy for giving me the time I've had with the wee one and for taking such good care of the mom and dad right now.

And I'll say 'Amen'

.....but I'll be meaning "but you KNOW what I want".....  

I'm sassy like that. 

And that wee thing--he's so stinkin' cute.....  

*sigh*

The labour of love

He was bourne on Labor Day.  

Cute little booger....

I took this just minutes before he stopped breathing in his mother's arms. 

He celebrated 2 1/2 hours of normal living before it all went upside down.

Three heart defects, complicated by Downs Syndrome....

20% success rate for each of the three needed surgeries, and subsequent heart transplant, with the healthiest of Downs Syndrome babies--and he's far from one of the healthiest.  Yesterday they told us surgery wasn't an option.

There's a second opinion due today from a high caliber children's hospital--but we don't expect the answer to be different.  It's a matter of what the parents needed to do to be at peace.  Even if the numbers are a bit higher, the doctors aren't convinced he would survive the transfer.  Things are just too fragile.  Multiple times a minute they're in the room adjusting something or other to sustain life in a very controlled environment. 

Attempts to remove him from the machines controlling his breathing weren't  successful and didn't lend to the hope of something different for this small fella that's my grandchild.

Today, the parents are allowing friends and family to visit for the first time.  It's just been the two grandmothers and two close friends to the parents, to date.  It's all they could handle.

Baptised yesterday...tomorrow he'll be removed from the machines and will be held by his mother and father until he finds eternal rest.

No, it's not 'right' or 'fair'. 

But G-d chose the two VERY best parents He could find to love this wee fella from the moment of inception to the moment he goes to heaven.

Another Captured Memory...

Oh, the things that make Mel Happy!

It's been a few months now. Good grief..........MONTHS.....

Lots of 'stuff' happens in my life in the course of HOURS--Give it a few days and it's insane to keep track of the comings and goings and doings that make up just a small piece of 'life with Mel'.  
Months--holy cow...a whole LOT has happened.  LOL  Just not much of which I recall, of course....  So, really--not much of importance has happened.

Yaknow.....I'm not sure what, if anything, I've accomplished by taking a hiatus from several pieces of, what used to be,  central parts of my routine for a very long time.  Maybe nothing was accomplished.
But I don't know that I was trying to 'accomplish' anything.

Yaknow....truth be told, I think the circumstances were in charge of my life more than I was--by my choice, of course.  Nothing happens in my world by accident and darn little happens in my life without my permission.

I think it's fair to say I got weary.  Still am, some moments.  Dealing with chronic pain, chronic lack of sleep and a touch of depression along with some really SCREWED UP thinking--it sorta wears and tears away at you.  Or at least it tears away at me.

Heck-- I'm still trying to recover from that broken leg that happened at the end of 2012.  I still haven't done it.
No wait....I'm still trying to get the life back that I HAD before the leg broke.  I think I'm AS recovered from the broken-ness as I'm going to be.
I don't get to have that life back.  I get to move forward with the life I now have, with the circumstances that are now the reality.  And really, my circumstances are a whole lot better than some folks I know--a whole lot better than they were before and could be again.

Wow--yaknow....I really do have a good life.  Not all my circumstances are the ultimate when it comes to circumstances, but my LIFE is truly awesome.

And....with that--I'm going to get on with what I know to do cuz it's what I know.


Things that make Mel HAPPY!

....Butterfly invasions on the buddleiahs.

....Buying wee stuff for the grandson we're expecting soon.

....The upcoming weekend with the Bug.

....The freshly painted porch.

....Patio swinging with the hummers.

....Skirts on sale..more than one, even!

....Putting himself on the plane to visit his mum.

....Buying lunch for the couple who sat behind us in Cheddars...and the joy on himself's face when we pulled it off.  :-)

Life is very, very good INDEED!