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.

The wee fella with his Stuffie

2nd place cheer

 I am a freaking tired Nana.  *sigh*

I won't do less than I can, but I fear I'll burn myself out before we end this race.  LOL. Mostly cuz this bird ain't a chick, dontcha know.

This weekend was, as is every weekend, Bug time.  And I like to DO during my off time.  Why would it surprise me that Bug is the same way?!  We cut back plants that froze in the 27° autumn morning (it IS autumn!).  We bagged up 175 treat bags for the annual trick or treat night, and me made a ghostie tree house decoration...which I've yet to make room for.  Ummm...mostly cuz I just returned home.  Bug and I spent the night at a hotel so we could arrive bright and early to get ready for her "cheer" competition.  I wasn't about to try to load her into the car so we could drive an hour and a quarter....and arrive at 6am to get hair done and make-up applied (6.5 years old and she needs make-up to bounce around and tumble and wave pom-poms?!).  *ahem*  Yes....well...we stayed at a hotel and had a girl's night out while grandad stayed home and peacefully watched the baseball game.  LOL. 

And Nana took her where she needed to be so they could take 2nd prize.  Not bad for a bunch of ADHD kiddos.  LOL. OMG those ladies that coach those kiddos deserve a medal, I swear!

And next week...we'll be in Philadelphia for a long weekend, the Bug and me.  The mom wants to see her kiddo-she's not seen her for 5 weeks.  And she "Needs to see my mom".  Which is probably true after her week.  *sigh*  It's not been a very 'happy' week.  But we'll just keep trudging.  What else is there to do?  Pray and keep doing whatever gets placed in front of us.  That's all we can do right now....

I'm looking forward to seeing the wee fella and his mom...and I'm looking forward to the 4 hour layover in Chicago with the 6 1/2 year old.

...k....one of those 3 things is a lie.  LOLOL!

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.....