ReCompositions

Wow. I haven't been on here in quite some time. What a crazy crazy crazy few years it's been.

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Wow, it's been a year!  And what a year!  We went to a convention in Detroit, during the summer Xerxes did a lot of swimming, We went to Pennsic for the first time in 4 years, Tauna got put on the transplant list and celebrated 4 decades on this planet.  We are looking for a house, and waiting for the transplant.  Tauna's health is really, poor, and the house hunting is very frustrating.  Xerxes is thriving in all ways except for eating.  He will taste, but not really eat.  He's very brilliant, though, and is practically reading at 2.7 years old.  He certainly recognizes corporate logos and memorizes their mottos like no one else.  "AT&T: Rethink Possible"  and "Syfy: Imagine Greater."
His vocabulary is amazing, including words like "exquisite".   And he is so sweet and kind, always giving hugs and cuddles and kind words.
Here's him from last summer:

XERXES IS OFF THE OXYGEN AS OF THIS MORNING!!!!!

His pulmonologist just called Tauna. He did very well on his sleep study. And we were both sure he'd have to repeat, since he stayed up most the night! He's been on breathing machines for 20 months, 10 days, 14 hours and 53 minutes...

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I (we) lost a dear friend and brother recently. This is for him.

Abandon
-- for Nathan "Dirk" Smiler,
Feb 21, 1972 - Feb 15, 2010

Abandoned and lost, we're abandoned to grief
This shock to our lives is beyond our belief
(lost in a darkened land)
Our brother is gone, he is not coming back
Our hearts fill to bursting with absence and lack
A lack of belief, a lack of the speech,
The words to give solace lie far beyond reach.
The words to convey what we feel in our hearts
The abject despair as our worlds fall apart.
(this was not the plan)
For Dirk was immortal, we'd swear it was true
With no hesitation -- Ubiquitous too!
Oh Dirk Omnipresent, Oh Dirk without end!
So how can it be that we don't see our friend?
(and will not ever again)
For friend he was surely to one and to all,
The New or Familiar, the Great and the Small,
Heartwarmingly welcoming into the fold,
The truest of comrades to Young and to Old.
(hail, hail to our friend!)
He shared all he had, but his gift beyond measure,
was genius oratical, Oh what a pleasure!
(the joy that his words would send)
His voice could command even angels' attention
To bend down their ears to such verbal invention
This heavenly art, this mercurial tongue
Would sound in our ears loud as churchbells are rung
(and helping our souls to mend)
The echoes reverberate long in our ears
As memories etched in indelible years.
But oh, it grows quiet, like midnight at sea,
I ask you again: Just how can this be?
(this cannot be the end)
I hear that it's brighter beyond the horizon
There're tales of a Glory they'd never set eyes on
(away in a far-off land)
They speak of a masterful Gentleman Rogue
Ablaze with outlandish notions of vogue,
With impeccable taste and a mischievous tact,
And a devilish grace that imbues every act,
With a smile on his face and a cup in his hand,
He's been charming the denizens throughout that land.
(yea! As only he can)
I say to you now that Dirk's star has not fallen!
It merely seems so in this sad land of night.
The World has moved on and rotated in orbit
Dirk's just beyond reach, and is just beyond sight.
If one listens closely, you can hear distant laughter,
And see a faint glimmer of light, and hear drums,
(off in a distant land)
And ever so faintly, the voice of the Master,
Abandoned to Revel, Abandoned to Fun!

-Voron E. Xarya. 2010/02/20::15:14

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Happy Birthday little Xuxu!  He is, by the way 27 and a half inches long, 17 and a half pounds, and can support his weight on his feet !(for maybe a minute), and is comfortable supporting himself on his arms,  
And now, the rest of the story...

(Continued from Jan 7th, 2009 posting)

The wait was interminable.  Astrology geek that I am, I was pacing back and forth, looking at my phone (with no second hand), looking at thier computer systm's time, and trying to synch those up with my pretty-but-inconvenient constellation wristwatch to try to synch up the second hand, and figuring out how I was going to get an accurate time measurement (I wanted the birth-time to the second -- ha!).  And all the while freaking out.  What was taking so long?!
At one point I realized I had a headache.  So I sat down and started giving myself a neckrub.  Then, as some of the tension started to fade, I started to feel a wave of exhaustion and sleepiness.  I realized I hadn't eaten very much, if anything all day, and I asked a nurse for something to drink, and she got me some juice, which helped some.  At some point I got a text and/or phone call...I think out friends had showed up, but I  didn't want to get stuck on the phone for obvious reasons, so I just shot a quick message back.

Eventually, one of the doctors poked her head in and said they would be ready for me soon.  I was very excited, and very anxious.  I wanted to be next to Tauna (indigo_eris ).  It felt very weird to be separated from her for so long after being constantly by her side for the past two weeks.

Then it was time.  They explained to me that they would be starting the operation right as I was coming in, and that it would be all over in a matter of ten minutes! (WaitwaitWaitaminute!!)  Tauna was very pale, and looked more scared than I've ever seen her.  They had a big sheet up, hiding all the fun, interesting parts of the operation, which made the long tube running the the big Jar on the wall which was quickly filling with blood all the more scary.  I was realizing that my future was very uncertain -- in the next few moments, I might very well lose both Tauna and Xerxes, or one or the other, and how awful that would be, and how very different from what (thankfully) actually happened.

I snapped a picture of Tauna with her Mom's camera.  No one will ever see that pic.  The lighting was terrible, and the breathing mask was totally out of fashion.  Tauna panick-ily asked the anaesthesiologist "What's that burning smell?!"   "Oh, that's just the cauterizing chemical." (or something like that) 

We heard one of the doctors (or nurses?) ask "Did her water break?"  To which another replied, "No..."  It turns out, all the bloating she had was peritonitis....her abdomen was literally filled with water/fluids.

And then, at 5:54pm (it all happened so fast, and I couldn't see well, I could never get the exact second of first breath!) he was out, and they were whisking him away to a room across the hall.  I was little red arms flailing, and heard a soft little cry.

One of the medical staff prompted me to follow...I was torn, not wanting to leave Tauna.  But she urged me on, and I grabbed the camera and snapped the first few pics of my little guy, scrawny, and translucent, and red, surrounded by purple-gloved  hands busy putting the surfactant in his lungs.   I went back to Tauna, for a bit, to sare the moment with her as well.  The anaesthesiologist asked her if she wanted to be more out of it....she did.  Meanwhile, the doctors were stitching her back up.  I went back across the hall again, snapped a few more pix, and then came back to Tauna.  Dom sent me a text message saying he got pics as the wheeled Xerxes away (downstairs to the NICU).

Billy, Ashley, Tauna's Mom, Shari (asphyxi8ing ),Andrea (one_andrea ),and Dom ( lyfschaos ) were all outside waiting.  The exact order of  the next events may be a little off (lack of food at that point), but here goes.  I  went with Tauna  to the recovery room, though I  think I told everybody about a place to  grab food first, because it would be a little bit before they could visit Tauna. 

Tauna had really high blood pressure, and low hematocrite, so they gave her a transfusion right after the surgery.  Then she started shaking.  Really intensely, for a long time.  Apparently shaking is normal, but this was a little more intense than most.  Thankfully, we had them re-test her BP before they gave her more meds....there had been a false reading...anyway, she eventually stabilized.  Her Mom came in to be with her, and I went out to the waiting room to where our friends were waiting, and got some of the food they brought me.  Then they went in one by one to visit Tauna.

At some point I called my parents to let them know their newest grandson had been deliviered, and my father told me about when my older brother, his first, was born.  He sounded different than he usually does...younger,  it was a very neat bonding moment.   Eventually, they were ready for us to visit Xerxes.  After making sure Tauna was ok (she may have been passed out by that point) We went downstairs.  Only two of us could go at a time, and one of us had to be me.  I think the order was (though I'm not sure) Sandi (Tauna's Mom), Ashley, Shari, Andrea, Billy, and Dom. Or maybe Ashley was first.  In any case, we had our first experince with the scrubbing-up, and putting on the soon-to-be ubiquitous yellow gowns we would come to know very well in the next six months.

Poor little Xerxes.  So tiny.  His face was all taped up, bending his little nose to the side, and he looked as red as Hellboy.  1 lb, 11 and a half ounces, and only 12 and a half inches long.  "Touch, but don't stroke." sweetrn621  told us.  I took some pictures.  I talked to him, introducing him to his grandma, aunts and uncles.  It's indescribable how I was feeling.  I wished Tauna could have been down there.  Happy, proud, and worried and scared all at the same time.  Eventually it was time to go.

Everybody left, and I went back to be with Tauna...they had moved her regular room (still on the 7th floor).  Tauna's Mom was still there.
More visiting ensued, and probably some talk about middle names.  In any case, it very quickly became after 11pm (or was it 1am?), and time to go home.  Sandi was going to give me a lift back to the train station, where my car was.  But her car wouldn't start.  So I ended up walking ALL the way from U of MD back to Penn Station, through not-the-nicest part of one of the most dangerous cities in America.  I became acutely aware that I'd brought my backpack with me and that might not have been the best idea.  Finally, I banished all negative thoughts with this idea: MY SON was born today.  If I have any Cosmic Mojo, if there's any day I can walk tall and proud and happy through my city, then today was it.  And so I walked tall (well, as tall as *I* can) back to Penn Station, smiling and nodding at whoever I happened to pass.

So I drove back to get Sandi and to give her car a jumpstart.  She was in a tow-away zone and needed to get her car out of there by like 4 or 5  in the morning.  It wouldn start with a jump either.  So we went back up to Tauna's room at about 3 in the morning, and luckily she had her laptop, and we searched for an all-night towing company to come get her car.  Eventually we found one, got moved from the tow zone with not a whole lot of time to spare, and I drove her back from where they dropped her car off (incidentally it was all because of a bad battery terminal), and headed back home.  I broke out the good Scotch and we had a drink in Xerxes' honor, and (I, at least) went to sleep.

Our little Xuxu at 9 Months, 11 days.


(Who happens to be 11 months, 10 days today...)

Oh, and I may soon officially be Baltimore's Best Dad!

Xerxes came home on the 30th at 3:30pm, actually, not the 29th, and boy has it been hard.  More about that later.   I just found out that he and Tauna had to go to the emergency room  (Johns Hopkins, this time) so they could suction out his sinuses -- he was having trouble breathing, and was very distressed.  She said he's fine and happy now, but they don't know whether they'll admit him or not.  Apparently we need another machine to care for him properly at home.  (We already have five.)

Six Months ago, indigo_eris  had just settled into the Hospital for the long stretch.  She knew she would be there until the baby was delivered, which would hopefully be at least a few weeks away still.  It was a Monday, and I had pspent the weekend with her, slept at the hospital, used their shower facilities, and left for work.  I parked at Penn Station, and caught the 8:10 MARC train to Washington DC, as usual.  I met Shari in our usual spot in the lower level of the third car, and the train departed.  I was telling her about this new Tarot deck under development (by shatterstripes ) I was interested in, when my cell phone rang.  It was Tauna.  The Doctors had decided they'd pushed Tauna's body as far as possible, and I needed to get back to the hospital as soon as possible, because "they were delivering Xerxes today". 

We were just pulling up the West Baltimore train station -- I quickly told the very concerned-looking Shari what was going on, said goodbye, and and got off the train.

West Baltimore isn't exactly nice.  It was very warm out, and in that tree-less area, the morning sun was really starting to bake me.  I quickly set out walking toward the University of Maryland, whose towering parking garage I could see in the distance.  Eventually, I saw a cab, which I had no trouble hailing.  I proceded back to the 7th Floor IMC unit.  Tauna was surprised at how fast I returned. 

The doctors were worried that Tauna's diminishing health (she had pre-eclampsia and later we found out was beginning to develop HELLP syndrome) might cause spontaneous fetal death (like SIDS in the womb) so they were going to deliver by C-Section that day.  Bam! Just like that.  It was happening.  They had another delivery beforem but they were thinking they would have the surgery around three o clock.   I started emailing and messaging and calling people.  I even posted briefly on here.  I was rather freaking out.

What followed was visit after visit by a flurry of doctors and nurses and surgeons, in and out  like a revolving door as they briefed her, and began to prep her for surgery.  One doctor came in and explained to us all the problems that extreme preemie babies could develop, like brain bleeds, hydrocephalous, PDAs, and, of course, Bad Lungs(tm). 

It all proceeded at an odd combination of relatively fast, yet agonizingly slow.  Three o clock came and went, and poor Tauna was getting very hungry.  I was getting all our stuff packed up and ready, and fielding all the phone calls to keep everybody informed.  Eventually they wheeled her off  to give her the epidural and made me go into a separate room to dress in the blue scrub overalls and wait. 

To be continued...

The Doctors at Mount Washingotn told us yesterday.
He will be 175 Days old, which is 25 Weeks, which is 5 months 22 days.

Baby New Year!

Xerxes turned Five Months Old Yesterday!!

And So much has been happening!!!

A week ago Sunday Xerxes was moved to Satellite Care! It's a different room from where he's been his whole life (except for surgery), and was a major step to going home.

Five days later, he leaves the NICU after 151 days total! He was transferred to Mt. Washington last Friday! They made an announcement over the loud speaker the night before and the morning of so all his girlfriends nurses could come to say goodbye.

He was a bit freaked at first after getting to his new digs, but intensely curious, and settled in pretty well, with Mommy and Daddy's help.

But then the big shocker: They said he was probably going home in Two Weeks!

This was great news for all to hear! (I heard the Ravens celebrated by stomping the Redskins...) A great deal scary, considering how much work there is still to do on the house, but wonderful nonetheless! We are so proud of him! He looks so good now that he's recovered from his surgery.

Oh, and at last check, he was 8 lbs 12 oz. and 22 inches long!

And Now, Pictures!

1. The funniest X-face, EVAR!, Satellite, 12/3(?)/2008
2. Relieving Tummy pressure with the G-tube, early AM, 12/7/2008
3. X shortly after his transfer to Mt. Washington, 12/5/2008
4. All tucked in (with matching G'ragon binky!), early AM, 12/7/2008