Four months plus 9-12 weeks........

They tried to extubate the wee one Monday—this while the parents were pulled together for a ‘family meeting’ with the medical team (surgeons, cardiologists, occupational therapists and all their ‘fellows’ that gather ‘round them like a flock of geese). 

The removal of the tube came with a bit of drama in and of itself.  The surgeon argued with the cardiologist before the weekend that the wee fella needed a few days of ‘rest’ before they removed the tube—they’d just inserted a tube to drain fluid from his lungs and he thought the month old baby could use a weekend of recuperation.  The cardiologist argued that the process needed to begin—the sooner the better.  The surgeon won—he’s the head professor for surgery at the University.  But then the cardiologist is the professor of cardiology….talk about an “A” team…..LOL

The weekend was far from ‘stress free’ for the wee thing, but the level of issues didn’t reach ‘high risk’. 

The tube came out and the family met for over an hour with the “A team”.

At this point they see the recovery much as we do—filled with twists and turns and issues which need to be attended to right where he’s at.  He’s progressed (drainage tubes are out, pacing wires are removed and they’ve started him on feedings through a tube) but it’s been a slow progression, wrought with one issue after another.  The chest tube to  drain the fluid that’s surrounding the lungs was a result of the feedings they introduced—each step forward seems to come with a ‘cost’.

The bottom line  is the baby won’t come home between now and the second surgery which is suppose to occur at 4 months of age.  That’s three more months in Philadelphia IF complications don’t push the surgery back a month or two.  And then there’s the recovery time from the second surgery….9-12 more weeks.

At best we’re looking at January for surgery—that’s IF the surgical team doesn’t take off for Tahiti on the Holidays and IF there’s no complications (*insert sarcastic laughter*).

And then there’s the 9-12 weeks  recovery time……That pushes us into May.

MAY….

M.A.Y.

*sigh*

The tube went back in last night.  He was struggling so hard his chest was heaving….and the girl was concerned because he ‘looked terrible’.   
We knew the odds were they’d have to re-intubate, but still…….. 
The surgeon, unaware the mom was behind the curtain pumping breast milk, entered into the room and talked to the wee one—lovingly calling him an ‘ungrateful little jerk’ after all the arguing he’d done to get him the weekend of rest!  Darn that she didn’t take a photo of his face when the she popped out from behind the curtain and whole heartedly agreed.  LOL

 It’s hard.  Being here while all that’s going on there…..knowing we don’t get to have the wee one home between surgeries, that he’ll continue to live in a hospital, isolated from his family and his home.  Knowing the girl will continue to be there—separated from her daughter and partner……

I need to stay grateful that we’re THIS far, that the wee fella is continuing to fight to come out the other side of this.  And I need to give note to the fact that the mom, who’s stayed with him the entire time (except for one night at home to make special cookies for the staff at the hospital in Iowa—yes she IS her mother’s child……) has an office in K.O.P. which is right down the road from Philadelphia and that her boss has approved her working from the hospital, from the office in K.O.P., from the room at the Ronald McDonald House where she’s staying—he doesn’t care where she does her job as long as she does it.   I need to stay grateful that the grandmother, who’s retired, can stay with the dad during the school week and help with the daily ‘stuff’ while the 6 year old skips off to school……

If none of that were available, I don’t know what we’d do and where we’d be in this whole ordeal.

What young family—what OLD family could (physically, emotionally & financially) afford to stay with their child for six months while they fight for their life……a thousand miles from their home.

I don’t believe that the second opinion just ‘happened’ to be in Philadelphia any more than I believe the fact that the office she worked from multiple times a year is right up the road is a ‘coincidence’.

Nor do I believe he randomly ended up with the “A team” that he has.

And I don’t believe he was gifted to our family by ‘a fluke’.

But I do believe in prayer.   I do believe G-d hears.  And I know His hand has been in this one since before we knew what ailed our wee little fella.

And so we all continue to pray……and hope…….and wrap our heads and our hearts around what we get to do TODAY to make a difference in the lives of the people we care about and hugely love….

4 weeks...2,034 pounds...

"Heart warriors", that's what they call babies with congenital heart defects.  That's what we have ... a heart warrior.

He's four weeks old today.  And they've been able to whittle him down to four pumps--we started at 14.  I'd say that's great progress.

Chest is back together--they removed the "oversized bandaid" 2 days ago.  There's talk about weaning him from the ventilator and potentially moving him from the cardiac intensive care unit to the critical care unit.  Maybe by the end of the week....maybe by the start of next week when he turns five weeks old, G-d willing.

It's a bit of a haze--it seems longer than four weeks, but it's only been four.  Maybe that's an indicator of what the heaviness does.  Maybe it's just the nature of the beast.

There has been a lot of good in the past week, a bit of drama (which the wee one is becoming famous for!), a few tears and a whole lotta loving.  Seems circumstances push the envelope on the loving bit.  At least it does for a whole bunch of us.

There are those that go the opposite direction.

The ones that distance themselves emotionally from the details and day by day/hour by hour reports on how our baby is fairing.  It's their way of insulating themselves, or attempting to convince themselves that they've insulated themselves.  I doubt it will work.  And, because it's fairly readable, I doubt it's understood by those on the other end of the spectrum--the ones who wear their heart on their sleeve and get teary asking questions and talking about the little fella.

I don't land on either extreme.  I switched into "doing mode" and find myself in tears at odd times....like dining out for lunch and losing it as a group of gals set up for a luncheon date with a new mom they were showering with presents and attention.  I remember the fleeting "We should have been doing that for the girl" thought....

Seems people accept that from me--the "doing mode"...not the teary eyed stuff.  People get nervous when that happens.  The good news is, I know how to "self correct".  Those teary eyed moments are very brief.

I'm too busy to indulge.  There's the job to do, the house and yard to maintain (Himself just returned from visiting his mother and kids.), and a six year old that needs consistency and stability....and routine.  So, because I promised I'd take care of her (along with the grandmother), that's what I've been doing....and checking in with the girl in Philadelphia, and doing errands for her and tending to the house and some of the yard work there.

But we took the 6 year old to the pumpkin patch and the pumpkin fest that we've done every year since she came into our lives.  We bought gourds and two big pumpkins for her house....not as big as the twothousandandthirtyfour pound winning pumpkin, but bigger than the ones I took home....cuz none came home with me.

Himself says it's just a plot to make a return trip to the pumpkin patch so I can buy more pumpkins and gourds.

Of course that's true.

Duh.

Anyone who knows an ounce about me knows that's true.

I'll also have to buy for the 6 year old again....cuz she'll be with us for Halloween and she'll need a pumpkin here, too.  

He hasn't figured that out yet....nor has he counted on the pumpkin we'll be carving for the wee one.

Yup.

I think we'll carve that pumpkin a simple heart.

After all, the wee one is a heart warrior.....

  

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!

The smell of white

Waltzing

Why can't I get ahead of this STUFF?!
It seems the solution to every speed bump that's happening pushes me back three steps.  I'm accustomed to two forward and one back--but this three back is starting to really piss me off.
Coming off the no longer effective pain medication is making me wonder if it WAS effective.  Certainly I wouldn't be having this level of pain if it weren't.  And nausea.  And sweats.  And forgetfulness past what I can deal with.  How long do I put up with this before I call the doc and tell them to put me back on what I thought wasn't working cuz it obviously was and I'll deal with the nutzoid thinking...cuz I can't do this much longer.
Talk about nutz...I won't sit down at work cuz I know getting up is gonna surpass the pain of just staying on my feet.

I'm getting really pissy about this.  Something has to give.
On the plus side, it's such a treat to leave the house mid morning with "I'm going to go play with the kiddos now!".  Sounds just as joy filled as it is.

That's my two forward for right now.  It's the three back that's pissing me off.

He's baccckkkk

Daily Reminder

Let go of the drama. Tie up loose ends. If you know where you're at with someone, you can be diplomatic, but be as clear as you can be.

Be clear with yourself,too. Watch the behavior of other people. Are they making excuses to you why they can't be with you? Are you making excuses about why they don't call? Some of us wait a long time for someone who's not even thinking about us.

Stop telling others what they want to hear, when that's not the truth. Stop telling yourself what you want to hear, when what you're telling yourself isn't true, either. Don't leave other people hanging. Don't put yourself on hold.

Be as clear as you can be, with other people and with yourself.

It's ths compassionate thing to do.

pfffttt.....*sigh*

I've not made the time to be here, to put things into black and white, to look at how change has been for the good.  I've been putting my energy into correcting my thinking evrry time my brain starts to want to do the math and come up with a negative result.  It's tough not to do that right now.
Now is not the optimal time to come off pain medications that have clearly been the source of some fairly messed up thinking.
If ya want a lot of attention REALLY fast, tell your physician some of those messy thoughts.  You get to meet all sorts of professionals in the field of mental health.
It was all I could do to not laugh.  It's not that I don't know what suicidal ideations look like.  I ought to be credible when I assure them that's not the case.
And to debate if it's the medications or me--seemed silly.  But the end result was to remove me from the medication.  Frankly, my joking about becoming the commercial's lengthy list of warnings wasn't a good choice....especially given the audience I was playing to.

And now there's the temporary reassignment into direct care.  It's something I'm very good at, something I enjoy and love dearly.  Getting to work with kiddos and families is something I lamented losing.  And now that I get to....*sigh*  Make it make sense that I'm struggling with it.
Maybe it's the change of hours, maybe it's the change of kiddos (boys versus girls), maybe it's the role they asked me to step into....maybe it's simply the timing or the fact that it's spring or that the grass is growing.  LOL. None of it makes sense in my brain, nor does it make sense in black and white.
This is why I haven't bothered.  It makes no sense....but still, it's where I'm at.

Despite my boss telling me over and over again, I wonder what the agenda is.  My brain tells me there's a hidden one.
*sigh*
I'm going to blame that on the medications, too.

Right.....see above, Mel....

Daily Thought

I am a creative being. 

I have the power of reason, the ability to think, hope and dream. 

I can envision my life not only as it is, but as I might wish it to be. 

 I can then think through the steps I might need to become more of who I am. 

I have the power to think my way into a happy point of view, to see the glass as half full rather than half empty. 

My mind can be my greatest enemy or my greatest ally. 

It depends on how I choose to use it.

Fairy Reminder

Take Better Care of Yourself

Take better care of yourself than you ever have before. That's what your heart is telling you to do.

Those times of driving yourself, depriving yourself, not being gentle and loving with yourself will no longer work. Punishing, criticizing, repressing, and denying won't bring the feelings, the growth, the result you're seeking. The harder you push, the more you relentlessly demand perfection, the worse you'll feel.

Fall in love with yourself. Be gentle, loving, kind, and attentive. Take time throughout each day to tend to your needs, just as you would tend to someone you loved deeply and dearly. Loving and caring for yourself this way won't waste time. It's not a delay. Take better care of yourself, and life's magic will return. Your life will improve. You'll feel better,too.

TFTD

In all the busyness and living, there needs to be mindfulness and careful attention paid to another part of life, too. That part is the repetitive and natural cycle that some people call "the void."

It's an empty space in our lives.

The void can be a small space in our lives—lasting a few days or weeks. Or it can go on longer. That relationship has ended. We're alone. We don't know what to do next. Or that cycle in our lives has ended– maybe we've graduated from school or college, and we don't know where to go next. Maybe our time as a parent has ended. Maybe someone we loved, a roommate or best friend, who was an important part of our lives has moved away.

Don't be afraid of the void. Postpone it for a while, if you must. Linger at dinner with friends, refusing to finish your dessert. As dark, cold, and empty as it feels, the void is a friendly place. Its rhythms are slower and often more confusing than other cycles in our lives, but the rhythms of this cycle are still there.

Remember those quiet times in your life, the ones you've gone through before, when one cycle has ended and another has not yet begun. Remind yourself when that void comes along that you don't have to be frightened of it. It's not the end. It's only a creative and necessary pause, a cycle of its own, in the cycles and rhythms of life.

Thought for Today

No trumpets sound when the important decisions of our life are made. Destiny is made known silently.
–Agnes DeMille

The day ahead offers us choices of many kinds–some big ones, many that will affect other persons close to us, a few that will have profound effects on our destiny. But no choice, no decision we make, will be wrong. A particular decision may lead us slightly astray. Down a dead-end path perhaps–but we can always turn back and choose again.

We are seldom aware of the gravity of a particular choice at the time of making it. Only hindsight reveals the wisdom of an important choice. Nevertheless, no choice is without importance in the overall picture of our lives. And at the same time, no choice is all-powerful regarding our destiny. We are offered chances again and again for making the right choices, the ones that will most contribute to the bigger plan for our lives.

Daily Reading

The Old Man said,`you are both ugly and handsome and you must accept your ugliness as well as your handsomeness in order to really accept yourself."
–Larry P. Aitken, CHIPPEWA

My Grandfather told me one time that any person who is judgmental to another is also judgmental to themselves. If we want to be free of being judgmental, we need to first work on how judgmental we are to ourselves. If we quit judging ourselves and start accepting ourselves as we are, we will start accepting others as they are. Then we will experience a level of new freedom.

TFTD

Personal Gains

One of the hard lessons of life is that we can't always "win" in the worldly game for prestige, power, and property. It is especially galling to see rewards going to others that don't seem to have earned them. Much of the world's conflict, in fact, grows out of disputes over what rightfully belongs to whom.

Todaye need a higher perspective than what we're likely to find in the brawling world around us. Rather than demanding rights to anything, we should know that everything is part of a spiritual world. The real meaning of the last line of The Lord's Prayer is that all power, prestige, and property belong to our Higher Power. Whatever we have or will acquire is only temporary, at best, and can easily be lost through wrong thinking and bad actions.

Emmet Fox, whose writings guided the early A members, taught that we possess things only through "rights of consciousness." In perfectly legitimate ways, we will always possess whatever is necessary for our real work in this life. If one door closes, another will always open. We do not have to envy anything that others possess, nor should we attempt to wrestle it from them. God will always lead us to whatever we need for our highest good.