Friday, July 29, 2011

What KIND of Twins are they?? II

One of the posts I wrote in the early days of the blog (barely pregnant) was What KIND of Twins are they? I thought this was a kind of amusing question at the time.  Jokes about telling people they were a boy and a girl and still being asked if they were identical.  Things like that.

Now, I feel it's still a valid question, but one with more gravity than hilarity.  What kind of twins are they?  They were in-utero together for 30 weeks.  They spent 24 of those weeks interacting with each other.  In every ultrasound, the appearance was that Aurelia was just pounding on Chiron.  She often looked to not just be kicking or moving her arms at him, but even actively pushing him.  The joke was that he was wedged transverse across the top because she acted like a singleton and took up all the real estate.  They were delivered in the same surgery, Chiron following just one minute after Aurelia.  08:15 on December 23, 2010 was the last time they were together though.

Another light thought I had during that early period, before it all changed, was that I never referred to Trajan as a singleton before being pregnant with twins.  There's a similar thought in the after-period and that is that I never really thought of the term single twin until Aurelia died.

In the NICU, Chiron was always referred to as a twin.  All of his paperwork referred to him first as "B" and then gave his name.  As we've gotten farther and farther from the time of their birth, it seems he's getting further and further from his status as a twin.  I have trouble imagining a medical scenario in which the fact that he was a twin would matter.

Is he really a twin, even a single twin, given they never existed as twins as independent entities?  Perhaps the right grammar is to say that he was a twin.  But what does that make him now?  Singleton seems categorically wrong.  Maybe that's where that odd term of "single twin" must come in.

I find myself with rationale arguments for why we really shouldn't think of him as a twin, but I have a strong emotional feeling that he is which is best summed up by an image:
They were heart and eggplant.  Or the fact that their stomachs were developing side by side:

I should give up on labels perhaps, but I doubt I will.

I do know one thing for sure and that is that he is wonderful and we are lucky to have him in our lives.  Because when it comes down to it, labels are not what determine what we feel, they are what we try to use to try to affect our feelings.

Thursday, July 28, 2011

100 Posts

I know 100 posts is almost nothing for most people, but I think this means I may have achieved a habit of some sort. So now I need to think more seriously about how I should proceed.  I think I should go ahead and move it to a domain (we own quite a few, so what's one more anyway?).  Then it's a question of should I just use blogger on there or make the move to wordpress?  Most of the people I know in real life seem to use wordpress, so I'm kind of leaning that way.  But, I'm about to start on a six week period of a whole lot of travel and a bunch of work that needs to get done too, so instead of even starting my research, I'm going to put an action item on my calendar in October to start the research.

Questions I want to find out include is how would posting from my phone work.  It looks like blogpress works for wordpress as well, so I think that the pictures and video directly from my phone would still work.

If I'm going to make the move, I think I will have to consider aesthetics as well.  And as someone who is completely non-visual, this makes me say ugh.

That's the ramble, now here's the part where I ask questions of those who might be reading this:
  • Is the change worth it?
  • Is there a helpful service to pay someone to move old content from blogger to wordpress to avoid the insane frustrations I've read about from other people with fixing links?
  • Am I right that it's a good idea to make a change earlier rather than later?
  • Can you still easily embed objects from Picasa Web Albums?
  • Would I be better off just keeping on keeping on doing the same rather than adding changes like trying to make a banner and layout or moving to wordpress?
  • Any books or tutorials or the like you recommend I consider during my research phase?

While I'm at it, I think I will ask the comment that has been plaguing me for years:

Why do people set blogs up to require me to click though to see the content? 
My typical response is to normally just click on them and move on down the line in Reader.  For the ones that show the first part of the post (like at least a paragraph), I can almost understand, but the ones who show nothing or just a few words or couple of lines, I just do not get you.  Am I unusual and most people routinely click through and so you get more reads that way? 

This choice just effects those using Reader or another RSS feed, so it seems like a really odd decision to me.

That said, is there any product or service to go through and cheet and get the feed through them and they will send me the whole post instead of just the oddly truncated part?

Random Tidbits II

  • I live with Alf.  And she has a hard life.
  • I love the fact that our boys seem to really enjoy each other.  It's becoming more of a two-way street as Chiron has developed and it just makes me happy.  Yes, I know they will hate each other at times too, but I feel no need to think about that!
  • I have no idea how we would actually do it, but I just had the idea of someday having a birthday party for Trajan themed around Trajan (the typeface) and this made me giggle.
  • I will miss the day that my son wants to hold my hand in the movie theater.
  • Is there such a concept as "rationally paranoid"?
  • I've thought more on the argument of having three or more kids allowing them to support each other in the case of the loss of one and I think it's more than that.  I think it's more lines of support in almost everything, throughout life.
  • Before going out and buying a new pump-in-style, I luckily remembered that our local nursing store will test pumps.  So I took it in and she said it tested perfectly.  It is just not a Symphony.  So, I've made a concentrated effort to pay attention to it and experiment to find what conditions will get me the best results.  First step was I went ahead and changed out the membranes on all of my flanges (doing this every 4-6 months is just generally a good idea and as Chiron is 7 months, I was well overdue).  Second, I have found that for some reason I have more luck with the Pumpin Pals flanges than the Medela ones (I don't find this with the Symphony for some reason).  And third and probably most importantly, I take the time to make sure all connections are tight and the membranes start firmly depressed.  It's still not as good as the Symphony, but I think it is good enough to keep using.
  • I got a call this morning from the pediatricians that Chiron's brain CT was fine, but that one of the pediatricians would be calling me Monday to talk about it and what future monitoring they want to do.  Why Monday?  Well, his normal pediatrician is now almost two weeks overdue, so they are inducing her tomorrow and the other pediatrician in the office is out sick herself.  I'm guessing they are having a bad day today!
  • I love the things we learn through our kids.  I've always hated the fact that if I choose to take a bath, I still have to take a shower after to clean my hair.  Well, after almost four years of washing a child, I suddenly had to the idea to use a cup in the bathtub.  Tada!
  • We are proceeding on a multi-disciplinary front with Trajan re: Mr. Hyde.  He has an appointment with a neurologist on November 2nd, but the pediatrician called and got him on their urgent fill-in list, so hopefully he will get in there earlier.  He has an appointment with the psychologist we had been seeing for play therapy on Tuesday to continue giving her opportunities to work with him and particular in hopes that she can ferret out whether or not he actually has any awareness/memory of the episodes.  Then we are probably taking him to a psychiatrist as well for some other evaluation.  Seems like a lot to me for something that only happens about once a month, but they are of pretty severe intensity and we want to help him to make life as easy as possible, so I think it makes sense.
  • I still haven't written an actual submission for the "whole story" prompt for Hand to Hold as they requested, but I have had one more thought:  
Is this the end of our story?  No.  It's not even the end of Chiron's birth story for how and when we are born impacts all of our lives.  Is there another shoe that will drop?  I don't know, but we never know.  Life is fragile.

Wednesday, July 27, 2011

No "something"

Well, not officially no "something" yet, but I'm willing to call it.

Chiron and I successfully dropped Trajan off and headed to the hospital (I brilliantly dressed him in clothes to sleep in that he could also wear to school since he doesn't have a dress code right now).  We made it with plenty of time to wait. 
And wait.  And wait.  But, I really shouldn't complain since they did schedule all three procedures for the same day.  On the other hand, I had a baby who likes to eat regularly who wasn't allowed to eat, so maybe I can complain.  Between the wait before the brain CT and the wait between it and the stomach procedures, I walked miles with him in the pouch because that produces happier baby.

Here's evidence of that huge head we were checking for.  We went back for the brain CT first.  It was quick and easy.  Strapped him in and some combination of the swaddling, secure straps and just the new setup resulted in him not complaining at all.

I'm definitely not a brain expert, but looking at the picture in the viewing room, there was no obvious area of color change or big pool between brain and skull or anything like that.  Between that non-expert viewing and the fact that they didn't stop us right then and no one has called yet, I'm saying there was no "something" there.

Then it was back to the waiting room.  By this point he really wanted to eat, but I did successfully walk him to sleep:

And then it was back to the room where they did both the swallow study and his repeat upper GI.  Luckily, I was able to keep him asleep through the first half-hour discussion of what they would do and how to set it up, because when he did wake up, he really did want to eat.

They started with a swallow study which he was fine with as it meant eating something.  This time they mixed the barium with expressed breast milk instead of just doing the barium drink.  He seemed to like it:
Unfortunately, they only let him drink about 15 milliliters and then took the milk away to flip things to shoot the upper GI.  He was NOT amused:

He did get to eat some while he was flat for the upper GI and this improved his mood dramatically.  Then they finished and he got to go back in the eating chair to finish his bottle while they took more shots:

I also haven't gotten any official results on these digestive procedures, but did get some basic info from the speech pathologist. 
  1. Still definitely has reflux, oh lots of reflux
  2. He swallows later than is typical, so this is likely the explanation of some of his coughing/choking.  He does do a good job of protecting his airway though, so we should just support him through these episodes
  3. He is not aspirating (woot)
  4. He performs better with non-thickened milk, so we are not going to try the trial of nectar thickness expressed breast milk we were going to do this weekend
He did have one of his choking episodes after we left, so I was able to call the gastroenterologist with information on how long it had been after eating, the nature of the choking and the duration as he had wanted this information.

I'm unclear when or if I will hear anything official from either doctor, but I don't think we got any real newsflashs either positive or negative from these studies.  Slow and steady, tortoise, gradual progression from status quo, that's our boy.  And he's always been that way and it totally works.

Where do we stand now?  We are keeping him on both of medicines, Zegerid and Bethanachol.  He has an appointment August 5 to get a head measurement.  He has an appointment August 11 with the ENT.  The gastroenterologist said that the ENT will likely schedule him for some more visualization/scoping that will likely require sedation.  If she does and his head grows percentilewise again, we apparently may schedule a second MRI at the same time as the ENT imaging stuff.  And he goes back to the gastroenterologist September 6.

If he increases in frequency or severity of his choking episodes, the gastroenterologist says to call him and he will likely admit him to the hospital for more workup.  As this may end in a fundoplication, we vote to avoid that.  That said, if either of us starts to feel uncomfortable with the episodes, we will do it.

I did remember to warn daycare about the barium poops, so I haven't received a paniced call on that front!

Tuesday, July 26, 2011

Baby's Got a Big 'Ole Head

Chiron and I get to have a fun day of imaging tomorrow.  He's still having pretty severe reflux episodes with some choking, so the gastroenterologist wants us to repeat the upper GI to make sure and rule out any anatomical abnormalities as well as do a swallow study with a speech pathologist present.  The gastroenterologist also referred us to an ENT who we will be seeing the beginning of August who apparently will also want to do some scoping/studying. 

In addition, he's also getting a brain CT.  Why?  Because he's got a big 'ole head.  And more specifically, he has a big 'ole head that is getting relatively larger.

These are his head sizes and the percentile rankings (I couldn't find a preterm head chart, so I only have adjusted for when his adjusted age is after zero).

In case you're curious, here's what the values look like:

The likely answer is just that he has a big head.  That was the theory at his six-month appointment.  But given the growth in the month between his six-month appointment and his appointment yesterday at the gastroenterologist, they want to go ahead and look at it.

Both doctors, gastro and general pediatrician, wanted to look at it once they saw yesterday's value.  The only question was would we do an MRI or a CT.  The argument in favor of a CT is that it doesn't take as long and doesn't require sedation.  The argument in favor of an MRI is less radiation exposure and much more information.  The final decision was since he has previously had an MRI, we know most of the structural information and so a CT should be fine to look for fluid on the brain.  And he hasn't had an CTs of anything yet, so they are less worried about radiation.

Image from his last Upper GI
Image from his last brain scan
Honestly, I'm not really sure what we are hoping for.  My instinct is to hope for nothing turning up on any of three imaging studies and a continued uncertainty as to why he has such severe reflux and choking episodes.  But maybe it would be useful to turn something up?  I just generally don't like "somethings", so I think I am rooting for three clear scans showing nothing other than reflux with the upper GI.

I am in love with our local hospital, Dell Childrens, because they shuffled schedules to get him in for all three of them back-to-back even with different doctors ordering different components.  Also, they are doing the brain scan first, so we only have to cut him off from food four hours before the expected start of the first stomach imaging procedure.  Since that's at 10, he can eat until 6 and since he normally eats at 5:45, this should work great.

Trajan is currently going to Chiron's daycare for four weeks because his school is completely closed right now for four weeks (no camp, no nothing).  It's going well so far (based on his experience yesterday, his first day), so hoping today went well and we have an easy time getting him going and there in the morning because the only negative of the great scheduling is we have to have Chiron in the building at outpatient registration by 8:30.

I will update the world.  Think good thoughts our way!

Bad guys

Trajan has this odd obsession wtih bad guys.  Example comments from the other day:

Are there any places besides Mexico that have bad guys?

I know about bad guys in Mexico, on tv, commercials and movies.

They're people who decided to do bad things.

I don't want to go Mexico until all the bad guys change their minds.
Now, you may be asking yourself, why the obsession with Mexico?  Well, it happened like this.  Trajan wanted to know how all the dinosaurs died, so we started talking about the extinction and the Chicxulub crater came up. He said he wanted to go see this and my mom said she didn't want to go to Mexico currently and so somehow we were on the subject of corruption, drugs and crime in Mexico. 

I'm a little worried we've forever warped his mind by this absolute association of bad guys and Mexico.

That's my antecdote.  My real question is what should I do with this obsession?  Should I buy in and discuss it with him and ways in which people can be bad, how we make decisions and the like?  Should I try to deflect him away from the topic?  Should I just go with no attention, positive or negative, on the topic?

Bad guys. 
- Posted using BlogPress from my iPhone

Saturday, July 23, 2011

Seven months old

And he celebrated by laughing at his brother for about fifteen minutes straight. He's laughed before, but not so much!

And yes, he still doesn't like sitting. Doesn't practice it and actively goes against you, but he stands like a pro.

- Posted using BlogPress from my iPhone

Friday, July 22, 2011

Best Trajanism to Date!

"can you eat a lot of chocolate so Chiron can get chocolate milk?"

- Posted using BlogPress from my iPhone


We recently have been having some behavior problems with Trajan. Called the pediatrician to ask about it and maybe a referral for play therapy or something and they said it was developmentally normal. Called the pediatrician again after a couple months and said no, we really need to do something and they had us in for an appointment. She said she wasn't seeing any red flags, but almost begrudgingly gave us a referral to play therapy. Went to play therapy and after a few sessions she said we might be seeing some developing ADHD behavior, but he really didn't need more play therapy. She would write a letter at the start of the school year with some tips for helping him.

Called the pediatrician to see if we should see anyone else for some guidance on the possible ADHD front (the play therapist had recommended a psychologist for evaluation and since I was more familiar with behavioral pediatricians, thought I would ask his normal pediatrician). They scheduled us for an appointment.

So, so far, everyone has been pretty much indulging us, but have seemed to think we were just seeing a problem where there wasn't one (despite reporting issues in multiple settings: home, school, gymnastics).  Not quite patronizing, but the attitude seemed to be we were just expecting too much.

Is validation the right word? I don't know, but the appointment was yesterday and we didn't get any recommendations for a path or even get past his infant history (his doctor is on maternity leave and so were catching the other doctor up since she's only ever seen Chiron. And yes, the theme of the year is doctors on maternity leave.). Why did we not get past this?

My arm immediately after

My arm this morning

He had an episode. Went from this funny, sweet boy explaining the blood pressure cuff and where his heart was to the nurse to this non-verbal, grunting, hitting overwrought thing. 

The pediatrician was great about it. Talked some as I tried to work him though it, took notes and tried to help. We stopped trying to talk about anything and instead said she would call me. He didn't want to leave the room. He didn't want to get in the car. He didn't want to go for a walk. He indicated with his head that he was not mad. That he was not sad. I asked him if he wanted to go see TK (one of the front office staff). I don't know why, but this worked. Likely was just timing. He stood up, walked out and by the time he walked the twenty yards to the water jug was perfectly fine. Smiling and laughing with a nurse while going back to restock the sticker basket.

He was fine. I took him to run an errand with me to have a pump tested (it tests fine, but still isn't working for me, but that's anther story.) Helped pick up his brother. Ate dinner. Got ready for bed. Went to sleep. All while being a sweet, communicative helpful boy.

The pediatrician said she would call me so we could discuss more of what he is doing, what the path is and really what is going on.  She did ask that we try to catch one on video if it is at all possible (recognizing that they aren't that frequent, but saying a cell phone video would be fine), because it is really hard to convey the extent of what was going on.  Similarly, she was really glad that she got to see it.  She said that she actually thought the first step might be the neurologist rather than either a psychologist or behavioral/developmental pediatrician.  We are supposed to pay particular attention to the correlation of nose bleeds with any of these behaviors.  She said she would write up a note and send it to the play therapist and the neurologist as well.

She hasn't called me yet, but I do feel like we are on a path to help him.  And that is good, because this has to be hardest on him.

I just realized I never really wrote a description of what he was doing.  This is hard for several reasons.  First off, some deficits in me.  I am not a very visual person and don't store information about how things looked.  Second, my memory seems to be short for negative events (Paul says this is a feature!).  Third, I was trying to help him and deal with it while still communicating with the pediatrician.  But here's my best attempt.  With no trigger, he started yelling.  Not words, but sounds.  Short, staccato-type noises without language in them.  Flailing and hitting and perhaps best described as a look of intent as he appears to set out with the goal of causing harm.  Of scratching, hitting, slamming, headbutting, whatever necessary to lash out in what appears to be rage.  There is crying throughout and blood running out of what I think was his left nostril.  Wrapping arms around him to hold him against the rage just makes him appear to add frustration to the rage.  Ignoring repeated hitting doesn't seem to be noticed by him.  He doesn't seem to have awareness or respond to his surroundings or the doctor or anything I say.  He seems to calm down.  I crouch in front of him as he seems like he may be able to communicate.  He doesn't lash out.  He doesn't attempt to hit or kick.  He just sits there befuddled, crying.  He doesn't want to leave the room.  Then suddenly he nods to the idea of going and seeing TK.  He reaches out and takes me hand, picks up his water cup (which had gotten knocked over, the doctor tells me to not worry about the spilled water and just leave it) and we walk into the hall.  He looks up, smiles and walks to the water jug and refills his cup.  Then he's the laughing, fun boy.

I didn't get a picture of it, but he also raked his own arm with what I assume was a nail.  And while we were standing at the front desk, I noticed red up and down my arm.

On the question of trigger, I say there was no trigger because we really couldn't identify one.  The best I could come up with is we were talking about him, but as the pediatrician pointed out, we were talking about his jaundice as a baby, not really something that should upset him.  The only behavior we had gotten into was to praise him for having stayed in the green (behavior system at school) for both of the last two days and getting a special note the day before complementing his behavior!

I'm not sure why I'm writing this, except perhaps to document it.  I can not imagine what it must be like to be inside his mind at the time.  The pediatrician mentioned the idea of prefrontal cortex seizures.  Whether it's medical, psychological, behavioral or even produced by us as parents, I really hope this is a good step towards us finding a path where we can help him so he doesn't have to experience this.

- Posted using BlogPress from my iPhone


I was talking to a friend yesterday morning on google talk.  She's in Africa, so was around for an early morning chat.  She asked something to the effect of how am I and said she had been thinking about me and my family.  My response was:

I've got a good life.. things happen and while I don't have to like them, I've gotta accept 'em
It didn't really strike me at the time, but I noticed later that she had changed her status to this line.  That made me think about it and I think it's true and I think I like it.

I've been bothered recently by something that might seem odd, I've been bothered that I'm not too upset, that I am able to laugh, love, enjoy and even do the day to day banalities of keeping life moving.  But as I think about it, I don't think this is a problem.  I don't think there is anything lacking in me.  It's that rather than being the plot of the movie of my life, Aurelia forms part of the soundtrack.  She's there and will always be there, but as something that has helped to shape me rather than something that has in anyway broken me.  I am more than I was before her.

In the last week or so, four friends have independently either talked about her, written me a note about her or just asked me about her.  I like this.  I think it means that I am strong enough that others can tell that I have her as a part of my life and acknowledging her doesn't hurt me, it just is a part of me.

This is a ramble, so I think I need a conclusion.  She wasn't created and then died to be my angel, to absolve for my sins or in any other way rise above the plane of existence.  She did exist though and she did impact not just myself and my family, but others that connect to us in rings like the currents that spread out from a tsunami.  She mattered and like our family, her story isn't complete, even if she never breathed a breath.

I do have a good life.  I am blessed.  It's not just a question of resiliency, I think it's taking the effort to really appreciate.

Toes are evidence that the world is a wonderful place

Thursday, July 21, 2011

Trajan on Growing Up

Growing up is possible. And it takes a long time to grow up.  And when I do, I can go to En-gland.

- Posted using BlogPress from my iPhone

Wednesday, July 20, 2011

Dagnabit and Decisions

This is the trend of my total milk production (I lost the first two weeks of data so this is 1/5/11 to now.  Also, the dip at the beginning is dual mastitis that earned me my six-day readmit):

I thought it was because of the passage of time since he was born plus the evidence from this graph of my total daily pumping time:

(odd trivia fact: I always subtract three minutes from my pumping time... originally I think I had some theory about it being letdown time, but now I just do it to seem consistent with other weeks.  Well, and the real reason is to probably make it seem like less time.)

I should have been suspicious that the drop was too much to be explained by just the pumping time because after an initial drop, the number of times I have pumped a day has stayed pretty even:

Today I finally figured out what is going on.  I use two pumps: a Medela Symphony at the house and a pump in style at the office.  The pump in style seems to have reached it's last leg.  I had thought this a few times in the last months, but I convinced myself I was crazy.  Today it was obvious that it just ain't cutting it.  Pumped twice so far today and under 50 mL total each time.  And after the second time I experimented with hand expressing.  With a good pump with the Symphony, I can then remove maybe 5 mL per breast.  I got over 30 mL from each breast working less than three minutes per side.

I think I should have been suspicious based on the change in the ratio between the two sides (this is right divided by left):

When I was falling off more naturally, it seemed like the right deteriorated my quickly, but despite the serious decrease in each breast over the last two months, the ratio stayed pretty constant.

So Decisions....

  • Do I cart the symphony back and forth?  This is one I bought myself, so it doesn't have a hard case, so I worry about damage to it.  Also it would be huge, I really don't want to do that.
  • Do I try just pumping once or twice during the work day and running home?
  • Do I rent a second symphony and leave it here?
  • Do I just buy a new pump in style as it's handy... Also, I have a trip to Canada coming up that I was considering taking the pump in style instead of the symphony just due to size anyway.
  • Do I declare myself done/incompetent and just quit?
Seriously, how did I not notice earlier?  Despite an average of less pumps on the weekends, the production is better... Argh.

I'm leaning towards just buying another pump in style.  If I remember right, that's around $300?  I feel like I've tried everything.  Replacing all the membranes has seemed to improve the performance of the Symphony, but the PIS is just getting worse and worse.

I went home and pumped (just finished) and got more than double what I had gotten from the two pumps I had done at work today!

For the sake of visual completeness, here's total broken down by left and right to make the problem a bit more obvious (yes, I know I should make more useful graphics given the data, but these are fast to autogenerate):

I really do need to take some sort of action, like today.  Thoughts?

Tuesday, July 19, 2011

Where's the Other Shoe?

This little guy is doing so well, but I find myself looking for another shoe to drop.

Even before he was born, from the first conversation with a neonatal nurse practitioner while they were stopping labor at 24 weeks, we were told to expect a roller coaster. Ups and downs. Rises and falls. Two steps forward and one step back. With the possible exception of going on a ventilator for six to eight hours when he was 12 hours old, he hasn't. And really, can you call a 6-8 break on an ET tube a step back at that point?

At his six-month-old appointment, his pediatrician said he was on track for his actual age, not adjusted. I was tempted to argue that he still had six more months before we drop adjusted. The only thing he wasn't doing was showing signs of readiness for food, but given his reflux, we would be waiting a bit anyway probably.

The reflux isn't the other shoe, at least not for me, because his full-term brother had the same issues plus protein intolerances in his case.

I found myself hunting for things wrong with him in the first few months home. We actually ended up at a physical therapist because I noticed him turning his head to the right more than to the left. The physical therapist said that yes this was true, but I had caught it so absurdly early that with just a few stretching exercises we were able to nip it in the bud.

When he had been home a bit we saw the other pediatician at our practice and she thought the grade of his murmur had increased (comparing versus written notes since she hadn't seen it before), so we got referred to a cardiologist with an immediate appointment. The murmur was shown to be a benign increased flow outside the aorta. Not only that, but as of about two months ago, they can't even hear that.

He hasn't had an eye appointment in months, and so I wonder if the shoe is going to be at his appointment in October. But when I think honestly, I don't think that would be a shoe. Based on what they said at his last appointment, the worst we are looking at is glasses. Not a shoe in my book.

From talking to other parents of preemies, it seems that there is always a shoe. Some either short-term high-magnitude event or some life-long issue that has to be dealt with. Maybe it's eating issues and problems with textures. Maybe it's cerebral palsy. Maybe it's poor muscle tone. Maybe it's cardiac issues. But I haven't found anyone without another "shoe".

Is it possible that there's not a shoe? What age should I really stop looking for a shoe because most of them will have landed? Is it an age? Is it meeting milestones like walking and talking? Is it possible that developing the last ten weeks in change out of the uterus and six weeks before that in a still status without really working the vestibular system could really not matter?

In case it isn't clear, the first shoe was the event of the premature birth.

Last thought, I don't want to credit a shoe improperly. Like the reflux, that's not a product of his premature birth. I do know from friends and acquaintances that there can be a tendency to attribute anything that turns up to the premature birth. So, while I may be looking for a shoe, I'm going to continue doing my dangedest to know Chiron for Chiron and not for his premature birth, because it seems the most likely shoe would be me handicapping him by continuing to see him for his prematurity and crediting him for his survival rather than demanding things of him that I would otherwise.

I'm not sure that made sense...

Gratuitous Nursemaid Puppy Picture One - Chiron

Gratuitous Nursemaid Puppy Picture Two - Trajan

Gratuitous Nursemaid Puppy Picture Three

Monday, July 18, 2011

Etsy for Dummies

Is there such a thing?  A good tutorial in how to dig through and use it? 

I have seen blog posts that show getting birthday packs and things from Etsy to create a theme and this sounded like a great idea to me, but when I go and search, there's no real way I'm seeing to dig into the thousands of results well.

We are having Trajan's 4th birthday party at the Austin Children's Museum and he has said he wants a pirate party.  We are having the party after hours on a Saturday, so we can decorate the party room as well as some minor entry stuff. 

I'm thinking a pirate themed happy birthday banner, maybe some stickers for water bottles, pirate-themed gift sacks... In my mind I was open to seeing great things and finding perhaps even more when I searched Etsy, but instead I'm feeling lost.

Any thoughts on how to more competently find stuff or should I resort to my more natural state of barely getting an evite out (still going to evite regardless) and getting a basic birthday cake?


Trajan had his first introduction to chess this weekend by our friend Scott. I feel his opening move of h4 was a portend for how the game would end, but he seemed to like it.

Scott used a whole board setup, but I was thinking teaching him the movements of pieces individually might work better. Now that I've said that, I think a more rational thought would be to start with checkers!

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Thursday, July 14, 2011


We made it to the theater about 3:20 and I was really amazed by how many people were ahead of us. We have awesome seats though because there were two seats left in the middle and people assumed they were reserved or something and I asked!

We are taking bets on how much our tab will be at the end of the day.

1,178 minutes of Harry Potter to start in three minutes.

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Tuesday, July 12, 2011

"Our Whole Story"

The prompt was tell your whole story.

How can I write a whole story?  Because a story of a person, or a family, doesn’t have a beginning and it doesn’t have an end.  If you think about it, we existed in our parents who existed in their parents.  We have no beginning.  And while we are alive, we definitely don’t have an end.  And I think even when we’re dead, we don’t really have an end, because we still impact people.  So, how do I write “our whole story”?

Five Week Ultrasound

Do I begin at meeting my spouse, or do I begin at marrying him?  Do I begin with the birth of our first son?  In this case, I think “our whole story” is confined to one pregnancy and its aftermath.  In the spring of 2009, we decided we were ready to have another child.  Went to the OB, started trying and luckily were very quickly pregnant.  Five weeks into that pregnancy, had an ultrasound and it looked like it was probably twins. 

Seven weeks, definitely twins.  And I guess that’s the beginning of our story.
Seven Week Ultrasound - "Heart" & "Eggplant"

I have about as easy a pregnancy and birth story with our older son as it is possible to have.  37 weeks without even a cold, working full-time happily and both happy and healthy.  Blood pressure started to go up then, so he was induced at 38 weeks.  Watched TV for 12 hours, put in three minutes of work and got a kid and a large pizza.  He was 8 pounds, 1 ounce and healthy except for some jaundice issues.

This second pregnancy?  Nothing like that.  I had a pretty bad sinus infection early in the first trimester followed by bronchitis later in the first trimester with an extra cold in the middle. 
Aurelia @ 12 Weeks

Chiron @ 12 Weeks

Then I had two separate back-to-back GI bugs in the second trimester that caused me to lose 16 pounds over two weeks.  By week 20 things were looking good and easy. 
Aurelia @ 20 weeks

Chiron @ 20 Weeks

 Both babies checked out beautifully at their 20 and 24 week anatomical scans and my cervix was praised as gorgeous at 24 weeks.  I was definitely growing and at 24 weeks was about the size when my older son was born!
Together at 20 Weeks

Then it all changed

I experienced some weird sensations at 23.5 weeks and so the perinatologist moved my appointment up one day to check me the next day and perform the 24 week scans.  Both babies were fantastic and he labeled them viable.  Unfortunately, I don't know who is who in these last 4 ultrasound pictures that I have from the 24 week ultrasound.

A day and a half later, I went in for a routine OB appointment.  My OB was actually out on maternity leave, but was only supposed to be missing one appointment, so I had been scheduled with a random OB that had an appointment.  She came in, with a resident or whatever you call the student doctors, following her.  I impressed them with my ability to sit up on my own and they started passing out the glucose tolerance drink.  The resident was chatting about her twins while the OB grabbed the ultrasound.  Since there were two babies, they always checked the heartbeats with an ultrasound.  She started with baby A and asked if we knew the genders. 

She grumbled something to the effect of “it’s not cooperating” and moved up to baby B.  I thought she meant to see the genders.  Baby B checked out great.  Something in the attitude of the room had changed though and I looked closer and somehow I knew that A, our girl, our daughter Aurelia, was dead.  I was by myself at the OB’s office for the first time ever with a doctor I had never met before and a resident.  She went back to A, but there was no heartbeat.  “I’m afraid something catastrophic has happened.” 

I still don’t like the word catastrophic.

I was sent over to the perinatologist’s office.  The wonderful nurse of my normal doctor actually drove me over.  My husband met us there and we were taken back.  They confirmed a fetal demise in baby A.  Sometime in the day and a half between checking out as perfect and viable, she had died.

We were sent home with instructions to follow strict bedrest and to call if anything unusual was felt.  I had gone from a Facebook status of “can’t decide if she has a gyro problem or if the guy at Pars Deli is just that friendly” to “is processing.  Sometime after Wednesday morning and before this morning, the girl twin died.  No abnormalities or infections to give an idea of why, so focusing now on giving the boy twin as long as possible to grow and develop.  This was just past 24 weeks.  No guarantees obviously, but hopeful thoughts.”  It had all changed.

By the next morning, I was feeling regular contractions.  We were sent to the hospital and I was put on magnesium to try to stop the contractions.  One of the neonatal nurse practitioners from the NICU came down to talk to us about what would happen if we delivered them at 24 weeks and change.

The mag worked.  I stopped dilating.  I was moved over to the stable antepartum side where I stayed for the next six weeks with some trips back and forth to L&D.

I would like to claim that I handled everything well.  I did on some levels.  I actually worked full-time while in the hospital and did a good job of it.  I communicated with friends and family and honestly enjoyed the very frequent visits.  But I was also a little crazy.  My OB was on call early in my stay (despite being on maternity leave!) and I did not recognize her, that’s how disoriented I was.  For the first probably four weeks, I on some level expected my son, Baby B, to be dead whenever they hooked me up for a nonstress test of fetal heart tones.  For some reason I didn’t tell anyone this though.  Like I said, I was crazy.

Then three days before Christmas, I started feeling some odd contractions.  They weren’t like what I had been having on and off.  They were confined to my back.  L&D was full, but they started terbutaline protocol in my stable room.  The contractions stopped.  Then a couple hours later, they started again.  At this point one of the doctor’s actually checked me and I was five centimeters.  Her statement, “Happy Birthday.” 

While I liked this doctor, it was close enough to the start of a normal day that she texted my normal OB (who was back from maternity leave) who came in to deliver them.  May seem like a small thing, but this meant the world to us.   The doctor who was on call and the nurses worked to get us all prepped and said we would wait for my doctor as long as I didn’t rupture.  Despite a “poop event”, which I never got defined, my doctor made it and we went back for the c-section.

My memories of the c-section are very vague.  I know I got a spinal at some point, but I can’t remember it sticking.  Just being rolled on my side.  I remember being very, VERY bothered by the drape.  In my mind, it was going to be a vertical curtain.  It wasn’t.  It was on an angle, billowing in my mouth and nose.  Gave Paul, my husband, something to do though in keeping it out of my mouth.  I hated that drape.  Hated.

My clear memory is the OB calling out, “Good grief!” and seeming to jump.  Turned out when his water broke, it did it rather violently.  Our daughter was born at 08:15 and her brother followed quickly at 08:16.  No one mentioned her.  We heard him and were glad to hear his protests.  He was spirited off to get into the warmed transport unit.  We asked if they were going to deliver her now and that’s when we found out they already had.  I wish I had known at the time.  It just made her seem like more of a footnote that we weren’t told.

Chiron got APGARs of 7 and then 9.  We saw him briefly in the transport unit on his way out and up to the NICU and I even got to touch his hand.  He was a scrappy 3 pounds, 1.4 ounces or 1402 grams.

Paul went up with him as soon as I was moved to the recovery room.  I was given a diaper that was Chiron’s size to hold.

I really didn’t know what to do with myself as bored might be the best descriptor.  Paul had luckily left my phone, so I busied myself updating Facebook and even took a call from work and talked a coworker through how to do something for about ten minutes before telling her what had happened.  This motivated me to follow up with my boss. 

My doctor had told me that I could go up as soon as I could transfer to a wheelchair, so from the time I hit the recovery room I was working on moving my legs.  At the time I was moved to a real room two hours later, I knew I could do it.  But I met a roadblock.  The nurse I had was one I didn’t know and I for some reason didn’t have my thoughts together enough to ask her to send one of the others or call down to the nurse’s station and talk to one of the ones I knew.  And she said no.  She said I couldn’t go for like 24 hours.  I should have protested, but I didn’t.  I knew my doctor had said she would be over at lunch and so I waited.

I really almost killed this nurse because despite the OB having said I could eat as I desired, she wouldn’t let me eat ANYTHING.  And she wouldn’t get me a breast pump.  It wasn’t until I was going to send my husband down the street to rent a pump that she got one!

My OB rocks and when she got there she said not only could I go up, but I could eat whatever I wanted.  Our streak of being blessed continued as not two minutes after this declaration a friend walked in.  This friend actually is a NICU nurse who works at another NICU in town.  She went up with us to meet the man.

I really only feared for Chiron once the entire time he was in the NICU and that was late that first night, but they intubated him for about eight hours after his second dose of surfactant and this allowed him to get enough rest in that he did great.  They warn you about a rollercoaster, but we never experienced this.  Chiron was a glider.  Slow and steady, he progressed until after 53 days, he was discharged.

The flipside of the story was Aurelia.  She was brought to me in the recovery room and then again when I got to a real room (another reason I threw less of a fit about going to the NICU).  She was just wrapped in a blanket originally and then dressed in the smallest knit gown ever when they brought her again.  I regret that we took no pictures.  We just have the six pictures that were taken by my recovery nurse of her.  I regret that I have no images other than my mind of holding her.  I regret not having her brought back one time.  But I don’t mourn these decisions.  They were fine, just that I would do them again if I had it to do over.

They were born on December 23, so coordinating getting her to the funeral home was oddly complicated.  She qualified by six grams for group burial, but we decided to go ahead with our plan to have her cremated.  And she was.  One funny memory is that when we were taken in to look at the urns, both Paul and I instantly knew what one was right.  It’s a brushed nickel looking one and like all infant urns, is tiny.

Her cremation and his discharge aren’t the end of story though really.  The story is still going on.

Friday, July 8, 2011

What does XXX mean

Well, no, not xxx. I mean blank by XXX!  This is the current theme of the majority of our conversations with Trajan these days.  No matter what you are talking about, there is going to be a word that he wants defined.  I love this because it shows he is becoming conscious in his word choice.  I also loves that he seems to have really grasped the concept of which words are in English, which are in Spanish and which are in French.

That said, occasionally I just want to scream ARGH rather than define another word.

Those with older kids, is this one of those things that will pass or is this what we will be doing between now and say 16?  I bought dictionaries for the kids I tutored pretty regularly, so I know definitions continue to be useful, but do they stay so verbal?

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Harry Potter

Harry Potter 7.1 was in the theaters during the time I was in the hospital.  While a friend volunteered to bring a bootleg copy, Paul declared that instead we would just wait because surely the Alamo would have showings of 7.1 before 7.2.  His theory was that it was much better on the big screen and we should do it together.  Collective awwww.

Well, they aren't. Instead, they are doing this. Yes, 21-some-odd hours of back-to-back Harry Potter.  While they have said they didn't sell the whole theater, I still think it makes sense to get there early to get good seats as long as we're going to be there all day, what's another hour?  So going to shoot to be at the South Lamar theater about 3:30. 

You ask, what about the boys, you crazy woman?  Well, Paul is such a super hero that he is getting his dad to come in and watch the boys so he can follow through on my promised, admittedly now much enhanced, Deathly Hallows experience.  I feel pretty and loved and all that.

So, now is the time for scheming.  What to bring?

  • Wear into the theater comfortable clothing: perhaps athletic type pants, tshirt and flip flops?  Yes, a Harry Potter costume might be more appropriate, but less comfortable and who really is going to be caring at 3:30 am?
  • Socks (for cold moments in theater)
  • Sweatshirt
  • Small blanket?
  • Pillow (i thought this was crazy, but they sent out an email explicitly telling people they could) - we are at the location where the arm rests can be lifted up, so hopefully can work with this
  • Medela symphony in car (need to see if it's easiest to run it off the power plug in back or just bring an invertor)
  • Bottles and flanges
  • Cooler?  I'm wondering if I can keep it cool enough in a cooler with ice packs for 24 hours or if I should just throw away the expressed milk
  • Possibly a manual pump and a breastfeeding cover?  I've experimented with them and they seem loud in a quiet room, but maybe in a theater it would be fine?  Not sure if I could do this, but if so it would be much easier.
  • Tennis ball?  Labor never bothered me, so I've never tried them for that, but they do seem like they would be useful to work the kinks out.
I'm going to be sure and do a good solid pump before we leave (so say 2:30 to 3:00 am?) and then hope to only do it every 4-6 hours after that?  I have off work the next day as well, so hopefully can do some intense pumping to make up.  I've had to only pump three times a day for a couple days at a time for work conferences, so I think it will work, but I don't want to do anything stupid.

Anything else I should bring?  I'm assuming I can get enough charge on my phone during the times I'll be pumping given I won't be using it in the movie theater.

Definitely need to write out information for Paul's dad the superhero who is allowing this event to take place.

(I'm actually really excited!)

Master of His Universe

Scrappy Doo was his NICU nickname and it still seems appropriate.  Under thirteen pounds, but can totally work an exersaucer.  Under thirteen pounds, but can take four people to hold still once they put the rubber around his arm for a blood draw (I know I've heard they can't have traumatic memories, but based on Chiron, yes they can).

And he sleeps now!

Intense ball spinning.

It's you, milk lady!

Ahhh, to be young and milk drunk.

And a bonus picture of big brother (who typically does NOT want his picture taken when he's awake, except for the occasional picture he picks.  He does ask to see his sleeping picture most mornings though, so I have a lot of these (actually two facebook albums):

Thursday, July 7, 2011

Labels II - An Achievement

I've noticed labels seem to be a theme in lots of blogs.  Stillbirth blogs, NICU blogs, autism blogs.... This concept just seems to plague people across the spectrum of existence.

While I still get bothered by labels, I believe I took a big step the other day.  Ever since Aurelia died, I haven't liked the phrase we lost her.  As in, we lost her to a cord accident at 24 weeks.  We NEVER lost her.  We knew exactly where she was.  When we ultrasounded Chiron, she was there.  When he was born, she was removed first.  I can't really say she was born first since born implies life (see, the dang labels), and I still haven't seen any official sheet of paper showing it, but she was removed from my body at 08:15 and he was at 08:16.

Losing her somehow makes it sound to me like it was an act of negligence.  Like we didn't care enough to keep track of her.  Like I didn't love her enough to keep sending her oxygen through her cord.  Like there is action I could have taken that would have kept her alive.  Similar to how hostile interuterine environment bothered me because hostile sounds like it is the product of intent.

Despite this, I've kept using the phrase.  It seems to roll over people well and not upset them.  Losing her somehow makes her less real.  Real things die.

At Trajan's first play therapy session, I departed from this practice.  I said, "his sister died due to a cord accident at 24 weeks."  I want to add in likely cord accident, but I think it's cleaner this way.

I've tried it a couple of times now and I would say that saying your child died is a little harder on others than saying you lost them, but I just don't think it's about them, so I'm going to stick wtih it.

Next step would be for me to use her name.  I still have trouble doing that.  As a final funny thought, my main problem with the name Aurelia was I wasn't sure about the pronunciation.  Turns out that was a total non-issue. ..  So, for practice: Aurelia died in utero at 24 weeks gestation.  I think I've got this! :-)