ReCompositions

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

The surgery went well, and Xerxes was doing pretty good immediately afterward, but later that night and the next morning he started to have problems. He had an episode yesterday morning where he had bronchial spasms and his body clamped down and forced his airways and lungs shut. He de-satted into the 30s briefly. He had to be hand-pumped and even (I think they said) given CPR briefly. He had another similar yet less severe episode while I was there. He didn't look the best. There's also a red area near his surgery wound that they are keeping an eye on to make sure it doesn't get worse (they outlined it in pen). He was looking very pale, so they were going to check his hematocrit and give him a transfusion if it was low, but I left before that. Poor little guy. At least he's on the best painkiller in the world (Fentanyl) and they gave him some Ativan (like xanax or valium) to calm him.

( four more pics under cut... )


Pics:
1. Right before his breathing attack.
2. Nurse K. bagging him.
3. Doctor's rush to his side.
4. CLose up of his scar and the area of redness.
5. His Royal Cuteness.
6. Looking a little pale...

Xerxes has surgery today.  They're probably going to start in less than an hour.  He's gettting a Nissen fundoplication, which should cure his reflux.  He'll have a gastric feeding tube ("g-tube"), by which he'll be fed, though he will also be able to eat normally, eventually switching over to that full time (though that may take months or even years, depending on how he responds.  They are going to try it laparoscopically, but he may have an incision from his belly button to his ribcage.

Your prayers, mojo, and best wishes. 

btw...there's some pictures on indigo_eris ' journal.  He was 7 lbs, 10 & 3/4 oz yesterday!  He's bigger than I was when I was born (7 lbs 7 oz).

And in case you lost count, X. is 19 weeks old today.

Happy Halloween/Samhain everyone! 

I found this great article: "Why bother to save Halloween?"

Why bother to save Halloween?
by Richard Seltzer

Halloween is in trouble. Each year editorials in magazines and newspapers and on television warn of dangers to children. And each year more communities "ban" Halloween.

 

So what? Who needs it? What is Halloween anyway? It's just an excuse for big kids to make trouble, little kids to eat too much candy, and candy companies to peddle their wares. Bah, goblin-bug!

( read the full article... )

So when you hear all those warnings about pins and poison, use caution and common sense. But don't just abandon a tradition that you yourself loved as a child, that your own children look forward to months in advance, and that helps preserve our sense of fellowship and community with our neighbors in the midst of all this madness.

So, here I am, hanging at the NICU. Tauna and I just had a wonderful French tasting birthday dinner with srprs  -- maybe the best meal I've ever had -- and now he and Tauna are visiting with our almost  six pound baby.

A little update:  After being back on the CPAP and swithing out on the nasal cannula, he went to the CPAP full time, but his little alveoli deflated and they started getting  deflated.   Now he's on it full time.  I can't use this computer here apparently.   more later.

Psilocybin gets treated to a Class A study. Go Johns Hopkins!

( Copied for preservation from the link-eating monster... )

They're switching him betweenthe CPAP (seen in icon) and the nasal cannula. (seen here).

I've never seenhim so wide-eyed and alert.  He was really going to townonthe pacifier.  I think the CPAP makes him breathe out his mouth, and then he can't really deal with the pacifier well.  He even seemed to be swallowing pretty decently, though it did seem to go down the his trachea once, causing him to cough/gag.  But that reflex is actually good.

Yes, today Xerxes turns 93 days old, also known as (in this case) Three Months and a Day.  In fact, yesterday was his official due date.  He is over 5 lbs now...I think he was almost 5 lbs, 1 oz on Monday. 

He is back on the CPAP, and has been there a while now, at plus five or plus six....he goes up and down.

He is so adorable and cute, and we've been able to see him every night now for a while, even with my parents in town and our kitchen and bathroom being remodeled/fixed.

Unfortunately, his lungs aren't progressing, and they think it's because he's refluxing from his stomach and then aspirating it.  They think he will probably need a surgery where they take part of his stomach and use it to reinforce his esophageal sphincter.  While he was healing, he would be fed through a tube in his chest going into his stomach.

It sounds scary, but apparently it's a pretty common procedure.  They're going to arrange a "family meeting" where his main nurses, and all the doctors who handle his case meet with us and we discuss options.

Oh, btw, Jesus, his long-time neighbor went to Satellite, and I found out there's an older baby in the his room (the VLBW* NICU).  The nurses said he'll be there after Xerxes has gone.  His name?
James Brown. 

That is just too perfect!  I leave it up to you all to finish: "James Brown, Jesus, and Xerxes walk into a bar...."
____________________________________
And now, pix! (9/25/2008) -- (more available here!)

*--- VLBW = Very Low Birth Weight

So I just learned yesterday, a little after 6pm, that the Trans-Neptunian Object (TNO) and official Dwarf Planet formerly designated 2003 EL61 (one of three announced by Mike Brown's team at the same time as 2005 FY9 aka MakeMake and 2003 UB313 aka Eris )  had finally received the official name Haumea (on Sep 17th or so, after over three years) on at the exact day and time that the Sun was transitting it's position in the Zodiac.  (15 Libra 01 as of 10/9/2008 00:00 GMT)).  

But wait, there's more.  There was a big controversy over who discovered it first, because some Spanish astronomers announced it first, and it was discovered they' been accessing observatory tracking data from Brown's team (it seems likely they kifed his data and passed the discovery off as their own though they won't admit it.)  So, why did Mike Brown not announce his discovery right away?  Well, he was about to publish a paper on Haumea, except that his daughter, Lilah, was born on July 7th, 2005.  Haumea, incidentally, is a goddess of childbirth, with lots of gods and goddesses pulled off of her.  The newest Dwarf Planet, in addition to having two moons, is apparently in the center of a cloud of TNO debris which they think were originally pieces of Haumea.

How weird is that?

Xerxes has moved out of his isolette and into a crib! More pictures on indigo_eris 's most recent post here: Xerxes' Crib.



AND he is 11 weeks old today as of about 24 minutes from now!

Xerxes has graduated to a nasal cannula (those clear breathing tubes old people and people going into surgery wear) as of Wednesday afternoon!!  We just found out when we went in last night!  He seems so much calmer without all the headgear!   His neighbor Cash has already gone to the satellite ward, and he has a new 32-weeker  neighbor named Ryan. One of his stomach tubes now goes up his nose, and he seems to like that better.

Tauna was in tears when we found out the good news!

Sorry I haven't updated in a while. Xerxes is doing pretty good. I don't know where we left off, but he's been extibated, moved to a SiPAP, then to a CPAP (currently at +5 setting, O2 running around 38% or so, but it varies). We got to hold him for the first time on September 1st -- Tauna did kangaroo care. He had his first bath (from a nurse) on September 8th, and T & I gave him his next bath on the 11th. He was 3 lbs 13.1 inches long on Sep 12th, and just Tuesday, he was 3 lbs 15 oz, so I'm sure he's broken 4 lbs by now. I've seen him independently turn his body and his head, but not together.....but there's all those tubes....

His lungs are still relatively weak (a baby born a month or more after him but about the same gestationally is already on the nasal cannula -- the next breathing step.) His stomach is really the problem. They feed him into his large intestine, because his tummy likes to puke up anything in it, including stuff that comes up through the pyloric sphincter. He puked on Mommy on the 14th, in fact. He needs to get feeds in his stomach, and then get feeds grouped together, and then transition to a nipple-based feeding form, so he has a long way to go in that regard. His other neighbor, Jesus (the only other baby whose been there longer than him) cries a lot.

Pix!

John Stewart is so The Man! This is beautiful.



Remember people, there are options, and there are Options....

Palin facts versus fiction:
http://www.samefacts.com/archives/campaign_2008_/2008/09/palin_v_reality.php

(borrowed from a friend's Facebook)

Physics is Phat!

OMG this SO is the Bomb!

Thank you creatrixx for finding this!



Didn't I just read a book about white chicks searching for Dark Matter?