Sigh

So, I've been in a medical facility at least once a week since the week of September 6, 2010. This is counting appointments for myself, for Chiron (the bulk) and Trajan.

Last week was supposed to be the first week without anything, so what happened? Turned up pregnant the Thursday and so had an appointment added that week.

So, I saw a doctor last week. But, she released me for two weeks, so no appointment this week! AND, we are out of town the entire week, so an appointment seemed very unlikely. What happened, you ask?

I was up urinating a lot last night. And then I just really kind of felt crappy. Called the OB's office and they told me to go to urgent care. Didn't even recognize that this was going to ruin my off week at the time. Went in and it's a likely UTI. I actually had a fever when they took it there which surprised me. The urinalysis actually didn't look too bad though, so we decided to delay any antibiotics until results come back from a urine culture since we are in organ formation and our antibiotic choices are limited by my anaphylactic allergies.

I'm actually already feeling a bit better, so I'm hopeful that some rest and hydration will help me kick whatever is going on.

But.... Chiron has his one-year well visit, a developmental pediatrician follow up, a gastroenterologist appointment, skin testing and an allergist appointment over the first four weeks of January and I have an obstetrician appointment next week, so this means that February is the next week I might go without a medical appointment!

Also, it's Chiron's birthday tomorrow and I was hopeful that I'd write something up, but if I'm still feeling puny, I'll likely conserve my reserves for the celebrating and hold off my documentation until next week after Christmas.

Just in case, happy Chiron's birthday and merry Christmas!




I got you this baby in a box!

Oh, and I've never had a UTI in my life, so I'm really suspicious of a conspiring universe.

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Paul's Birthday Lunch Fortune Cookie

That is all.

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No guarantees, but hope

Yesterday was the throwdown of facts, but I figure I should follow it up with a little reflection and answering of questions that I’ve gotten.

The title of this post I really think sums up where I am.  I know there are no guarantees, it is entirely possible to end up with no or one living, breathing offspring.  But that knowledge doesn’t keep me from having hope.  And I have every hope in the world that both of these babies will be able to thrive and grow and survive to be born.

Perhaps the goal of being born alive seems like pretty low standards to many, but it’s huge.  It’s the biggest thing that there can be.

Question one has been dealing with sanity.  As I have reflected on here, I endured some pretty high levels of stress and worry during the weeks between Aurelia’s death and the twins’ delivery.  I tend to internalize and keep the crazy fairly well wrapped up on the inside.  Positive: Paul, my OB and myself all realize this and have discussed this.  I think this is huge.  Being aware of the issue goes a long way.  Also, having had a easy, straight-forward pregnancy with Trajan provides some reassurance.

That said, we thought it would probably be worthwhile for me to check in with the grief counselor and talk through what I’m processing.  Have a message into him, but probably won’t actually talk to him until the new year. 

Another positive is I have an obstetrician who has had a lot of experience with demises.  Like she knew I was crazy before I did last year.

Question two is how is Paul doing.  I’d have to let him give his own official answer, but from the outside he seems to be accepting it as not the plan, but something that happens in life and so we will take it as it comes.  He’s made jokes about whether I know that they’re both boys and the need for a minivan and the like.  He’s often of the type that laughing is better than crying.  I think he’s actually made more progress towards accepting this as a reality than I have.  He made me crack up with the line, “gestating is hard work” earlier today.

Question three is what are the risks really.  We have talked about that a bit with the doctor.  Note, we have not seen the perinatologist yet and won’t for a while.  There definitely are causes for concern: multiples gestations are always a risk, pregnancies spaces less than twelve months have preterm complications, I have a fetal demise history, I have a preterm labor and preterm delivery history and the pregnancy happened with an IUD in place.  Any one of these five things apparently would classify us as high risk.  Add to it that I have had an auto-immune response to pregnancy/lactation that has consisted of my parathyroid shutting down and my multiple antibiotic anaphylactic allergies and I’m sure you can tell that I’m any doctor’s dream patient!

That said, my OB has actually been very positive.  She says that she doesn’t think I am likely to have a preterm labor problem.  She says that she thinks my cervix is competent.  She says while she has dealt with a lot of women with demises, only one who had comorbidities has had a recurrence.  She says we are unlikely to walk the same path.  She says that while she does feel confidence, we will be following very closely on the safe rather than sorry philosophy of thought. 

Area one of risk: miscarriage.  Having the IUD out helps this a LOT.  While it is in, the miscarriage risks are very high and stay high into the second trimester.  She says that the data is very limited, but it seems that the majority of the additional risk when the IUD is out is confined to the first twelve weeks.  She also seemed to think that having confirmed cardiac activity was a VERY good thing.  Another positive is how similar in size and development both babies have been, this is apparently huge.  She gave me a percentage, and knowing my math nature, you’d think I’d remember it, but I’m unsure.  It was I believe about a 15% chance of miscarriage at this point?  But don’t quote me on that.  What you can quote me on is that it is elevated from a typical pregnancy, but significantly less likely than a positive outcome.

Area two of risk: fetal demise.  Having Aurelia’s death switched back to an uncertain event at the last appointment actually decreases the risk of this a lot.  Fetal demises are more common in twins, but we are aware of the possibility and will be monitoring.  I’m going with lets all agree that we have had our share of statistically improbable events and so this won’t happen.

Area three of risk: neonatal death.  No one has mentioned this and I don’t feel the need to try something new, so I’m not going there.

Now for a final light note.   Chiron and Aurelia were amazingly awesomely obvious as heart and eggplant. These two are harder to name and I've only been sent with the one picture from the two ultrasounds instead of the half-dozen from last time.  I can now completely see the alien in profile that KJ found, but I also thought I'd take a picture in a different orientation to maybe make the panda head clearer.  Not sure if it helps, but here:

Meg, those are the two eyes right, and the nose is the center?

The plan is to tell siblings and our parents over this weekend and the beginning of next week.  Luckily, we are blessed in them and so are anticipating support, love and whatever we need.

Sigh.  I just realized I left out an area of concern which is very true and very near to all of our thoughts.  That's prematurity.  From our experience and people we met in the NICU, we are painfully aware of the risks of prematurity.  I'm honestly considering trying to seek out stories of twins who didn't need NICU time, but it really does get filed into the area of what will be will be.  I am much more informed and aware of the risks of preterm labor than the average twin mother, so I think the best we can do here is remember that while there are no guarantees, there is hope. 

Update and Confessions

It was probably obvious to some of you what I was rooting for when I outlined the scenarios last week, the one option that I didn’t mention: both of them still being there.  I outlined the miscarriage and the singleton, but I didn’t actually mention the twin.  Confession: that’s because it’s what I was rooting for.  Perhaps even secretly from myself.  Because it’s crazy.  Crazy.  Three living kids in a year and a half and four born.  Crazy.  But from the moment I saw the two sacs on the ultrasound, I somehow was already attached to both of them.

Random side note, I’ve noticed that this propensity to fall in love with a sac on a black and white screen is more of a female trait.

So, what did we see?

Yup, two.  Both with confirmed cardiac activity recorded.  A is measuring 6 weeks, 2 day and B is measuring 6 weeks, 1 day, so much closer together in gestational age than last time, which is a good thing. The sacs are actually pretty similar in size, it's just the angle that makes it look different here.

No obvious names like heart and eggplant.  One friend saw panda eyes and that's all I can see now as well. 

So, the nitty gritty details, the dark and the just interesting.

First off, the experience still did a bit of a fight or flight number on me.  My blood pressure wasn't as bad, but was still 140/80.  I'm supposed to check it sometime during the two week break before my next appointment just to confirm that it is a physiological reaction to the stress of the situation.

And yes, that's a scary thought.  My mind is making my body respond physiologically to the situation.

I've apparently made a mark on even the doctor's memory.  She estimated that my risk was about 1 in 300 to get pregnant on the Mirena and then the risk of back to back twins even with the fraternal propensity is about 1 in 100.  Or 1 in around 30,000.

I'm finding some of the math and numbers as the interesting things.  Having four separate people in my body in one calendar year.  Potentially having four children born/removed within a year and a half period. 

Related to numbers, we're throwing out August 7-9 as a due date with July 26 or so as the latest allowed likely.  Didn't get too much into delivery details, but apparently having both had a successful vaginal birth and a c-section, they will let me delivery vaginally if they're both heads down but they won't induce with a previous c-section or something like that.  I really didn't push this detail since it's so far out and so much has to happen between now and then.

Speaking of which, she says the miscarriage rate with having had the Mirena is about double that of normal.

I also am contemplating that perhaps I think I'm the Easter Bunny and am not aware of it and so just toss eggs around like crazy.

Other happy news is the hormone that was in the Mirena is the same as they give to women with luteal cycle defects and so it having been in the uterus with them was not a big issue.

The doctor brought up the question of what I will do to feed these children if they do end up here alive given that I've essentially slowly killed both of my living children with breastmilk while causing my body to systematically attack and shut down my parathyroids.  My theory at the moment is to run it by the boys' gastroenterologist and see what he thinks and then just approach things cautiously.  And also maybe recognize that there's a lot of value in the first few weeks of breastmilk versus longer term.

Going to try to avoid contemplating logistics too much for now.  Like three rear-facing car seats in a safe fashion with an additional forward-facer.

We will check cervix length in two weeks because of the preterm delivery history.  I'll do the preterm labor clinic again starting at 20 weeks.  And we will just keep following.  The future's not ours to see, "Que Sera, Sera, Whatever will be, will be. The future's not ours, to see..."

Very good news to me.  She thinks that the neonatal nurse practitioner told me Aurelia's death was because of a cord compression in order to make me feel better and give me an explanation more than really thinking that it was so.  Reviewed the delivery report and there wasn't a clear knot or anything.  All it said was that there was a moderate amount of spiralling with the central hypertwisted area that was measured 0.5 cm or something like that.  This makes me feel better about the cord compression issues. So, the NNP was trying to make me feel better and instead ended up making me crazier.  So, I feel better being back to an unexplained cause of death.

Having had an interuterine demise, there is an increased risk, even if it was a singleton and so they'll just follow more closely.

So, summary version.  They both look great.  They match up on size, have changed appropriate to what we'd expect over a week, and everything looks good.  And there are definitely two of them.  Big thing right now is taking it one step at a time.  Not getting ahead of ourselves and just taking things as they come with a next appointment in two weeks to check both their progress and get a baseline on my cervix.

Thanks to all of you for your support, thoughts, prayers, encouragement and sharing of your experiences.  It really helps. And sorry this is a ramble, it was an over three hour appointment and I need to go pick up the boys, but I felt I should get something up.

I heart the Internet

Rice chex!!!

And yes, I went to the grocery store this morning before everyone got up after reading the comment on the last post!

And yes, update on pregnancy/IUD/sanity tomorrow.

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Achievement to Thrive

Yes, I know that doesn't really make sense.  I was looking for the opposite of failure to thrive though and that was the best I could do.

I'd objected to the label of Failure to Thrive.  Not out loud or seriously, but just a little bit in my head, because it just seemed so mean.  Turns out it is the exact right label.

In the last two to three weeks, Chiron has gained a pound or so a week and learned all kinds of new things. Twice he has been sitting up in his crib when I went in to get him!  He officially as of this last weekend can crawl, forward and everything.  He can pull up, he can clap, he can repeat sounds and so much more.   He really is thriving.

The difference?  Well, they had us take him entirely off of solids when he went in the hospital in September for a month or so and then we had to put him on them very slowly.  In these last few weeks, he's been to eating 3-4 solid meals a day plus his prescription Neocate formula and it has made the world of difference.  He still has is supposed to consume no dairy, soy, wheat, eggs, peanuts, tree nuts, fish, shell fish or beef, but this actually still leaves a lot to eat and he loves it.

I really need to find some options for him to work on picking up little bites more, similar to puffs, but something he can eat.

Relating to the other issues, I have gone back to the idea that I posted to Facebook after Aurelia died: "no guarantees, but hope." [And yes, referring to potential children as other issues is probably wrong, but I think it's more evidence of trying to protect my own psyche than anything else]

And to finish up, two pictures.  One just to taunt Tanika as I thought of her as I took it and the other because I love the spirit of this Trajan kid:

12/8/2011

At the beginning of the week, I had three people make pregnancy jokes based on my vivid dream and a patty melt desire.  Then this morning I found myself unable to tolerate mint.  I have a Mirena  IUD, but figured a little reassurance never hurts so I dipped a pregnancy strip.  Now, I’ve done this twice before since I had the IUD and it was nice and reassuring to see that negative result.  A bit different this time, the strip showed the test line before the urine had even gotten to the control.  Unexpected would be an understatement.

Called obstetrician’s office and they called back about two hours later and scheduled me for an ultrasound about half an hour later.  Went in, checked in and was still reasonably calm.  I find it a bit prophetic that I’d set a post on the idea of Just Another Day in Wileydise to post that day, but I was approaching it all pretty calmly.  Had called and told Paul and he said to just breathe and wait until I had information.  I figured it was likely early enough that if it was ectopic (high risk with an IUD), it could probably be easily managed without too negative health implications hopefully.  I figured if it was a chemical pregnancy or otherwise miscarrying, I could deal with that and understand it as part of the risk of getting an IUD.  I figured that if it was a viable intrauterine pregnancy we could figure out making it work even though it wasn’t planned.  Really thought I was ready.

Then the tech started the scan and I saw two gestational sacs.

She measured two gestational sacs.  She said she couldn’t comment on anything or even confirm that I was seeing two separate pregnancies or whether they were in the uterus.  She did label them right side gestational sac and left side gestational sac, so between that and having previously seen an early twin ultrasound, I felt pretty sure it was two.  When she finished, I went back upstairs to see the doctor.

My blood pressure was 160/98.  It’s normally about 105/58 or so.  The tech who took it seemed a bit concerned by this, but said that they would probably just check it again.

The nurse and the doctor came in and asked how I was or something to the effect and I responded with, “my blood pressure is a bit high.”  The doctor said she thought she knew why and I for some reason thought this meant she knew something was pathologically wrong and had seen on the ultrasounds and so asked what.  Apparently, she just meant the knowledge I’d just gotten.  I then asked her if I was right in thinking I’d seen two sacs there.  She confirmed this to be the case.  Only one of them had a measurable fetal pole, but the other one could either not have one because it is not developing or not have one because it’s still too early.

Apparently knowing the days I bled or spotted doesn’t help in the least bit in dating the pregnancy as they typically have nothing to do with ovulation when you have an IUD.  The one measurable fetal pole was 5 weeks and 6 days, but apparently size is really hard to measure at this gestational age, so could be anywhere from about 4 to 7 weeks. 

It was a bit of an interesting balance as an appointment, because we were both looking to find the right point between getting me all the information that I needed for the sake of my understanding and not borrowing trouble or worrying about something that we may never get to that point.  My OB knows me well enough it seems that she gets that I have a lot of questions and like to understand as much as possible, so I’m feeling as informed as I can be in a situation that is definitely unclear.

So, where do we stand? 

·         I am currently pregnant. 

·         I am pregnant enough that looking at beta HCGs won’t really give any good information as to the viability

·         There are two gestational sacs

·         The IUD is out now which improves the range of outcomes

·         I do not have an ectopic pregnancy

·         We will do another ultrasound in a week to look at the growth of the two potential fetuses

·         My cervix is closed and looks good

So right now the only directions are to start taking prenatals (I finally stopped a month ago as a great example of irony) and allow time to pass until the ultrasound and appointment next week.  My doc's nurse actually stayed in the room while we were talking so she could be up to date as I'm supposed to call with any questions at all that I have.  My doctor has said she will definitely keep answering my questions and provide as much information as is possible.  I'm supposed to call immediately if I have bleeding or cramping because while there is nothing we can do about a miscarriage, knowing is good. 

As you might can guess from my oversharing with the internet, I’m a fan of discussing and working things out through talking, so I discussed this with a couple friends more or less while it was going on (in addition to Paul who despite his wonderfulness and awesome nature is definitely male).  One of them asked me after if I was ok.  My answer: “yeah, I really am.  Still definitely a lot of stress, uncertainty, fear, worry, apprehension, anxiety and the like, but I know where we are now, I know what the plan is, and I know it will be fine even if it isn't now.”

I’m having trouble thinking of an uncertain situation I’ve been in before where I’m unclear what sending positive vibes or rooting for would mean, but I’m not sure in this case.  I definitely don’t want a miscarriage, but I can acknowledge that is would be simpler in many ways.  A singleton pregnancy would be less risky than twins, but I can’t imagine myself rooting for that either.  So I think I’ve settled on I’m accepting whatever reality will be and I will deal with it as it comes. 

I debated whether or not I should write this.  On some level it seems odd to write about a pregnancy that is more likely to result in loss than not (how’s that for some scary statistics, and I thought normal miscarriage stats were bad), but even if I do miscarry (the main reason it’s so likely is apparently because of insufficient lining due to the IUD), that won’t unmake it happen and will still affect my thoughts and the like.  My main worry for sharing is that I really don’t know if I could stomach any more sympathy from people in our lives.  I know that sounds even weirder, but it’s true.  But there are only a handful of people who I know that read this and I would definitely tell them regardless, so it seems to make more sense to document my thought process and feelings than to not.

In terms of telling people in normal life?  My thought is wait as long as possible because there are a lot of people that just don’t ever need to know if it does end in miscarriage.  We might tell our parents/siblings at Christmas if next week’s ultrasound shows progress, but it definitely isn’t a happy go lucky pregnancy and will only be telling people who are central to our lives and need to know as such rather than just for congratulations or the typical responses.

It’s been almost four hours since the ultrasound and my pulse finally feels about normal.  You know what?  Life happens.  We respond.  And that’s the beauty.

And one more last thought (and yes, the idea on one more last is funny).  Am I odd that it’s the second one that blows my mind?  I mean the idea of being pregnant on an IUD with an almost one-year-old seems like it should be pretty mind-boggling, but that seemed manageably so.  It was the presence of a second one that really just ran me over like a Mac truck.

I’ll let you know how things go either way.  Interesting fact: they don’t give you copies of the ultrasounds apparently when they anticipate you are going to miscarry.

Oh and yes, I do see great irony in this happening right after I'd basically come to the conclusion that I shouldn't be pregnant again for the sake of sanity.  And no, I'm not ready to think about the insanity aspect yet.  What's nice is for some reason my fear of babies dying doesn't extend to miscarriage.  I see that as more of an inevitability or something, so not having the obsessive thoughts of last November/December.

One positive is hopefully this will quickly get me over the fear of going to the OB by myself.  As I've said before, the appointment where the demise was found was the first time I went to the OB or the perinatologist by myself between either pregnancy.  Well, I went by myself today and since the only time the schedule worked for next week was during Trajan's winter performance, I'll be by myself again.  Luckily, Paul has been really supportive and helpful in my thinking all of this out over such a short period of time and I really think that's a large part of the reason I can say that I know that I am ok. 

Speaking of Trajan, regardless of whether we end up telling the grandparent types, I am pretty sure we will not be telling him unless it is at a point where there's basically no other option.  It may be selfish, but I don't want to hear him explaining death again.

Notice that I'm no longer even calling anything "last thought". 

And yes, I totally get that intentional termination is an option.  That said, I just can't do it and have no desire to.  I can't consciously choose to kill my child.  I know what it is like to lose a child in reality, not just as an idea, and I know that I am not strong enough for that.

Just Another Day in Wileydise

I have thought a lot about what makes us who we are in the last year.  What makes some people take adversity and become more than they were through it while some justifiably just more or less give up?  What makes some people able to stay who they are regardless of what is going on around them while some change like chameleons?  What causes some people to spend a lot of time reflecting and ruminating while others are able to move on and deal more with just the now?

I am in the former rather than the latter category for each of these and I think the reason for each comes down to two basic things: an attitude of resilience and a commitment to being what you see is what you get.  I think the title of this blog, Just Another Day in Wileydise, really conveys how central both of these ideas are to me.

I started this blog back in August 2010 while pretty newly pregnant with the twins on a random whim.  It was at least the fifth blog that I’d started, but I’d never written more than a couple entries (I should perhaps move the handful of entries over here just for amusement) on any previous one.  I think part of the reason this one lasted was the attitude that went into it as reflected in the name (Aurelia’s death also probably increased the likelihood that I’d keep posting).  My first post dealt with why I picked the name Just Another Day in Wileydise and I read it today for the first time since I wrote it and I’m struck by how appropriate it is.

At the time, I wrote that “I was looking for a blog title and the two thoughts that have been most in my mind in the last couple weeks are Life Happens and Just Another Day in Paradise.”   I didn’t know how true these words were at the time.

Life happens, things will come at us.  It is what we make of them that determines our existence.

While I obviously think that our nature matters a lot, it’s also clear that the friends and family and support that we have are very important. 

One last thought.  It just struck me that the non-Texans reading this might not get the Just Another Day in Paradise reference.  It’s the title of a country song by a guy named Phil Vassar that portrays a lot of the banalities of life and celebrates them as being really the definition of paradise.  I think he’s got it right.  It’s the hustling around in the morning to get ready together and the time spent together as a family that really defines our paradise.

So I now take the title to mean two things.  First, that no matter what happens, it's always just another day and we just need to respond and react and second, life is wonderful and little things like a boy and his dog or grocery shopping really are what it is all about.

Donkey Terrors

I had the most vivid and disturbing dream of my life last night.  It’s pretty twisted, so you might should stop reading.

The dream started with grass with some sort of pathway through it and an occasional donkey.  There was a sign or something that indicated that “they were doing good” and the sentiment was that we should appreciate the positiveness of the use of donkeys to maintain the roadside and eat the grass.

Then there started to be an occasional poop.  We were stepping around them.  Then it got harder and harder to step around the poop as the pathway became more cluttered.  Then there was a donkey who had succumbed to the environment and so was lying on the ground with open bowels.  And there was so much poop you could not avoid it now.  It was more or less wading through poop now.  Then there started to be people who had fallen to the poop or the donkeys or something else along the pathway and they were reaching out and trying to grab us. 

I woke up and I was legitimately distressed.  Like I was nauseous, that’s how distressed I was.  Was so disturbed and impacted by the vividness and detail of this dream that I felt the need to tell Facebook.  The post from 12:33 am was:

Worst, most vivid dream ever.  Let’s just say donkey poop leading to donkey carnage and zombie destructive forces and just fields of destruction, poop and carnage of the living dead donkeys.

Those of us who were walking the trail I believe may have been some sort of civic servants or otherwise supposed to be involved in identifying innovative and positive projects.  And there was no way out of the trail once you got into it.  And there was color and detail and I'm shuddering right now.

A couple of friends at work actually remembered that we had discussed donkey poop at lunch on Friday, so perhaps this is where it came from?

But seriously, I do not approve.

[And Lesley, I told you to stop reading.]

A good weekend

Simple title, but true.  The two boys and I headed up to Dallas for the weekend and spent time with my parents, brother, sister-in-law and their kids (plus one of my aunts) and it was good.  I always worry that with running up for just the weekend the drive there and back are going to make the trip not really worth it, but totally not the case this time.

We went to the Dallas Children's Parade and despite some borderline rain, the sky was "spitting", it was a great time.

Much playing and joy was had during the parade and after.  We then finished the day up with a trip to visit Santa Claus!

All the kids were great and Santa was great, so it was just good.

And Trajan got to be a sheep in a Christmas pageant at church in Dallas which he liked.  Then we ate again and headed home.  We got to the house in time to change Chiron's clothes, run to the bathroom and then go to a baby shower for the boy's third cousin who should be born in the next month!

And to add one more bit of awesomeness to a great weekend, Chiron had an appointment with the allergist this morning to discuss food allergies/sensitivities and guess who weighed 17 lb?

It is amazing the changes that Chiron has had over the last few weeks as we've finally got his nutritional status improved to the level it needs to be.  He finally has mastered rolling back to stomach, can clap, can pull himself up, can repeat some sounds you say at him and more.  I objected to the label Failure to Thrive before, but now I think it really makes sense, he didn't have the nutritional status that he needed to even grow, so he really couldn't develop as he needed to.  Hoping this improved trend keeps continuing on!

Happiness and Fear

I've shown it before, but Chiron really likes riding:

I don't know if it's the time of year and I'm reflecting back to last year or just being the end of the year, but I'm finding myself contemplating a lot of the darker, less cheery baby parts of life, so I thought I'd send out shots of the happiest human I've ever known.  Trajan has always been happy and pretty easy-going, but Chiron has really redefined the definition of happy in my mind.  His joy has taught me so much about appreciating and stopping and taking a second look at the way the world works.

Now, darker thought number one: pregnancy and loss. 

A year ago, I lived in this weird in-between state.  I actually dealt better with Aurelia's death because it was clear.  I knew what there was and I had to deal with it.  Chiron, there was no clarity of what was or would be.  They told us at 24 weeks that we were almost certainly going to deliver him before we made it to 25 weeks.  But the question of when he was going to be born wasn't the real question to me, it was is he going to die before he can be born.

I've confessed this once before, but there were four weeks during which it wasn't that I was worried about a loss, I honestly expected him to be dead every time that they came to get fetal heart tones.  I know everyone has some time when they worry about losing a pregnancy or a child and that's normal, but I don't think it is at that level.  Basically, I was crazy.

What's the point of this ramble?  It's that I think I've come to a realization.  And it's that I just can't really risk playing that game again.  I know describing pregnancy as a game seems off and wrong, but that's just how my mind works!  I've been getting closer and closer to coming to this conclusion, but I didn't realize it until it just hit me the other day in the car that I just can't imagine existing in that reality of uncertainty again.  I wouldn't be watching an ultrasound to see how he or she moved, whether they were sucking their right thumb or their left, but to see if there is a heartbeat.

Chiron has really made me appreciate happiness and enjoyment of existence even more than I already did with his amazingly happy nature and I just can't see taking myself back to a place of such uncertainty and honestly, fear.

Multiple Realities

There's a psychological concept called theory of mind that is basically the ability to recognize that someone else might know a different reality than you do, that people's knowledge, thoughts, emotions can deviate from our own.  This is a vast simplification, but the basic idea.

I knew this from psychology and child development, but the last year has made me realize the degree to which different realities can exist.

Chiron was written up in a local weekly newspaper for his wins in the Preemie Power competition with an emphasis on it being Thanksgiving. A coworker made a copy of the article and put it in the copy room.  I then received an email from another coworker that was congratulating us.  The crux of it was:

I read the article and just kept forgetting to shoot you and email and say: WELL DONE!!!!!

With the exception of the loss of Aurelia, this year's holidays should be a HUGE night and day for your family and household than last year's at this time!"

Our realities are so different that I just didn't know what to say, how to respond or even to think.  First off, the ability to say "with the exception of the loss of Aurelia" like it was just some small bump in the road that was worked through completely blows my mind.  Seriously?  I may need an outside perspective to see if this is as odd a statement as I think it was.  "With the exception of the death of your husband, wasn't this last year great?" 

Then I started thinking about this idea of theory of mind and realized that our realities are even farther apart.  What exactly was she praising me for? The subject was "Kudos to You & Chiron".  For his prematurity?  For having written him up?  I think the honest answer is probably the fact that he won and then the fact that there was an article written on it, but praise for it kinda strikes me as odd.

I know that she never "lived" in the technical definition of surviving unattached to anyone else, but she definitely was alive.  It just blows my mind that someone who knows what happened and not just the basic details could think that Aurelia's death would ever make sense as an aside. And this is someone who is a good and kind person who does care about us.  It's not like she said it with intentionality.  I think that's really what blows my mind.  That it didn't cross her mind at all that I would feel oddly about that statement.

My reality sometimes makes me think I may be slightly crazy.

Lactase Deficient

"If I've gotta give my kid an autosomal recessive condition, I'm thankful for what it is. "
       -This was one of my thoughts on Thanksgiving. 


The Tuesday before Thanksgiving, I took Chiron in for an appointment with the pediatric gastroenterologist.  He agreed with me that Chiron really was looking great and seemed to have turned a corner.  I told him that we were five days into a trial of not having Chiron take his GERD meds and we jointly celebrated.  Then we discussed that nothing had turned up from his scoping the week before.  We agreed that we were both comfortable with waiting two months until his next appointment, which is huge for a kid who had been in the 2-4 week schedule and then I started packing him up to go.  Then the doctor popped up that he just realized that he hadn't seen the results for one test and so he wanted to go see if they had it yet so we could be completely done.

I followed him out into the hall as I was having him grab the results of the lead test that I'd had him order with a previous blood workup (I refused to take a kid who was getting blood draws every two weeks for an extra blood draw just to test lead and thus his GI ordered it even though it was his primary that wanted it). 

Then his face suddenly screwed up and there was a look of complete surprise.  He turned and asked us to go back into the room.  He told me that this was not the result he anticipated, but the disaccharidase panel showed that he was seriously lactase deficient.

Basically, he's lactose intolerant.  But not like normal people.  The normal condition is for lactase levels to drop in humans as they get older and need a less milk-based diet.  And this includes some people whose levels drop so low that they are lactose intolerant.  Babies, not so much.

Being able to digest lactose is really imperative to survival.  All mammals produce lactose as the sugar in their milk, so it's not just a case of the mother obstaining from dairy.  The only treatment is to provide a food source that doesn't include lactose.  In our case, the Neocate that he was already eating along with his restricted diet fits the bill.

Apparently this condition of lactose intolerance as an infant is called congenital lactase deficiency and is a genetically controlled condition that he said is believed to be autosomally recessive.

It's really not a big deal now, but he did mention that even twenty or thirty years ago this likely would have been fatal, so I'm very thankful we live in this modern era (again and again). At this point, we will just continue his restricted diet (no dairy, soy, wheat, eggs, peanuts, nuts, fish, shellfish or beef) as the primary way to manage it.  His GI doc does think that even with this diagnosis (which is a clear diagnosis of medical fact/measurement rather than surmise) that Chiron likely has protein intolerance as well and feels strongly that Trajan definitely had protein intolerance, so Chiron is scheduled to see the allergist December 5.  They will likely schedule the blood food allergy tests (RAST if I remember right from Trajan) at that point to help rule out major reactions before we try any of the currently restricted food groups.

Apparently his already low levels of lactase will likely continue to drop off.  It is possible that he will be able to tolaterate small amounts of hard cheese and yogurt when he is older.

All and all I would say this is good news.  It's a diagnosis that is very easy for us to work with and gives us clear and easy things to work with in order to gain some weight.  And it makes me feel that causing this sad face was more worth it:

Though I do know some friends that would argue that a lifetime of being unable to eat ice cream is deserving of a face much more sad than this!

Weekend Reflection

The weekend of November 11-12 was obviously a busy and fun weekend for our family, as you can probably tell from the last few posts, and this has led me to a bit of reflection.

There may be something wrong with me, but I didn't shed a tear the entire weekend.  I laughed, I celebrated and even the mourning was with a smile.  I mentioned her to others and we honored her as part of our fundraising team for Hand to Hold. 

I smiled for what she was, for what she could have been and what we dreamed for her.

I smiled as I listened to Chiron laugh for 15 straight minutes to his big brother in the back seat.

I smiled as we had one Preemie of the Year recognized rather than two.

I smiled as Trajan explained to me that he was looking at a cloudset which is when there's a cloud and the color change of the sky with the sun going down is behind it and then proceeded to make up a song about cloudsets.

I smiled as friends remembered us with cards, flowers, comments and just mentioning her name.  I smiled as we celebrated all that he have to be thankful for.  I smiled as I discussed her brief life with a reporter who was wanting to know more about Chiron for a story on the Preemie Power event.

Will I always miss her?  Yes, but I'm to a point of celebrating and I'm grateful for that.

And for all of you.

Someone I only know virtually made this in honor of Aurelia and really made me smile. I think it's the same as when her name was written in the sand, this enhanced my feeling of her "realness".

And I also think it's fitting that I'm setting this to publish on Thanksgiving.  Several people have mentioned Chiron as something I'm thankful for this year, and while they are correct, I'm also thankful for Aurelia's existence.  She was.  She mattered.  And I am thankful.

Tastiness and Preemie Superheroes!

Continuing our weekend of fun and service, we met friends at Fonda San Miguel on Sunday for brunch and followed it up with attending the Preemie Power event!

Fonda San Miguel is a fantastic mexican restaurant in town that is also special to us as it is where we had our rehearsal dinner.  They've got a great Sunday brunch, but it's pretty pricey, so we don't go often.  So, when friends who love Fonda San Miguel were in town for the weekend and asked us if we wanted to go to it with them, we jumped at the option.

Our friends were running late, so we got to spend some fun time playing with Paco, the parakeet.  And the boys played with each other.  It was great food, thoroughly enjoyed by everyone.  They even had some corn tortillas that our waiter was able to assure us were wheat/dairy/egg/soy free and so Chiron even got to snack!  He probably would have liked some of the other foods, but we would have needed to get confirmation on allergens and he seemed happy with the tortilla, so we didn't worry about it.

From there, we left and drove around to give Chiron an opportunity to get a nap in before the party.  Filling up on gas, running little errands, more or less making up things just to pass time while he slept.  Then we headed to the Preemie Power Family Celebration!

I had gotten capes made on Etsy.  I had started just wanting a cape for Chiron that complimented the dogtag on his Scrappy Doo costume, but decided Trajan might want a cape of his own and then decided to just order them for all four of us!  Chiron's costume had an SD on it like the dogtag and the other three had X's as we were his X-men (get it, Greek Chi?).

We knew Chiron was one of the finalists for his age group, but we also found out that he had won the Thundering Thurston Award for receiving the most online votes (4,162!) as well as the award for raising the most money in our fundraising campaign. And, he was selected by the judges as the Preemie of the Year in the 0-12 month category!

It was a great time for all of us, with a fun play area that was appropriate to Chiron, bounce castle and slide for Trajan, a balloon artist, music, cake, pinatas and more!  One funny bit is that I actually learned that Chiron had won his division after pretty much everyone else in the room.  They had been announcing the finalists and I got distracted when they announced him with the wrong last name and so was talking to someone and didn't notice that he had won!

Touch-at-truck!

After the Little Helping Hands service project, we headed out to get a bite to eat and then headed to a charity fundraiser called Touch-a-Truck.

Chiron had a great time sitting in a high chair and eating some shredded mexican chicken at the restaurant before we went to touch the trucks:

Trajan was so excited that eating was harder for him, but he at least ate tortillas and queso.  Not particularly healthy, but sufficient to stave off hunger.

There were so many different kinds of vehicles!  A whole section of military vehicles down from Fort Hood, fire trucks and ambulances, police vehicles, garbage trucks of various types, construction vehicles, a party bus, a limo and more!

Once we had wrapped around to the end, we stopped for Trajan and Paul to have some ice cream and I told Trajan that Chiron wanted to know what his favorite was.  He responded with, "the ice cream truck!"

I talk "for" Chiron to Trajan reasonably often.  Is this weird or do others of you do this as well?

One of the military trucks was a digger type thing (you'd think I'd have the names of construction vehicles down by now, but sadly I don't) and we took a picture of Chiron in the scoop.  I put it on Facebook and a friend captioned it as looking like the soldier had pooped him out, but in a cute way.  See for yourself:

Doesn't he look tiny?

The firetruck was perhaps Trajan's favorite to climb in and he was further amused when he got out and saw that the front had a mustache!

It was a great time and for a good cause as all proceeds went to the Austin Children's Shelter!

Little Helping Hands

Austin has an organization called Little Helping Hands that puts on service projects that preschool and elementary school aged kids can participate in.  It's a great program that I'd heard, but had never coordinated figuring out the pretty competitive registration process.  Then I received an email that Trajan's school was sponsoring a project for the families at the school and knew that we had to do this!

This project was cleaning up a local playground.  This included picking up litter, doing some planting and wiping down the playground equipment.  Trajan and his best friend decided they wanted to wipe down the equipment and so that's what we did.

I also tried Chiron in a hip carry with a pocket sling for the first time and he did great and really enjoyed himself until he passed out.  Then the advantage of the kangaroo carry was obvious as he was then slumped over!

Seeing those pictures drives home that I really did cut off eight inches of hair that Thursday!

Thoughts on cord compressions

So, I got started thinking about cord accidents more by reading a blog post that put the risk of a stillbirth due to a cord accident at 1 in 7 for those who have had one before.  How did I get there?  By the completely normal action of googling the approximate phrase "stillbirth recurrence cord accident."

Wow. 

I'd somehow gotten it into my head from the various doctors that cord accidents were really more or less fluke incidents and not something to really think about recurrence on.  That said, I had been told that if I am ever pregnant again, I would have additional cord monitoring weekly from around 20 weeks including measurements, doppler, and some monitoring of heart rates over a few-minute period, so I probably should have gotten that it was a risk from that. 

I have found myself second guessing was she really a cord accident.  To review the history, we were told at the time of the demise that it was likely that we would never know a cause of death.  We were able to rule out some causes because of having an ultrasound within a day of the death, but there was nothing that gave a clear cause.  Not only that, but we were told that the longer we were able to make it without delivering them, the less likely it was they would be able to identify the cause.  So, delivering almost six weeks later we were not expecting an answer and so were surprised when the neonatal nurse practitioner who attended the birth told us that it was a cord accident and then brought her over and showed us.  It just looked like if you had taken a garden hose and folded it to completely stop the flow.  It was very close to her body on the part of the cord that they left attached to her (longer than what I saw with either of the two boys and so I'm guessing longer than is typical with a live birth). 

My worry is that I was so desperate to have an answer that I just took this.  No, I have no reason in the world to question this NNP's judgement (she proved herself to be one of the most competent over the next few months), but I still do.  When my OB came to talk to us a few hours later, we discussed what there had been and whether this meant that it was unnecessary to do an autopsy and agreed that we had our answer and nothing would come of it.  So, really, I think I should feel comfortable with it being a cord accident, but the image that is forever burned in my head of that white folded cord doesn't seem to match with some of the images I've seen in medical journals.  I think my real reason for doubt is wanting to know how they know that that was the CAUSE of the death and not just something that happened after she died.

Assuming that Aurelia's death was due to a cord accident, this risk of recurrence is enough to probably make me chose to not risk another pregnancy.  It might be different if we didn't have the boys, but taking on that level of risk just doesn't seem fair to them.

In addition to my reading on cord accidents making me question the certainty that this was the cause of death and making me consider the risk of any further pregnancy, it also has me questioning whether I did enough.  On the night of 11/9, I felt such a weird sensation of Jumanji drums and pulling that I went into the perinatologist a day early on 11/10 instead of my scheduled weekly appointment of 11/11.  This was the only time I had called them alarmed.  Having read that fetuses respond to cord compression with fetal jerking and they are less able to do this in multiples pregnancies, should I somehow have recognized this as more significant?  I don't think there is anything that could have been done other than delivering two 24 and change weekers, but I can't stop myself from thinking about it.

I also want to know when and how do fetuses die.  Apparently they can survive five minute complete compressions with no ill effects, so what is necessary to result in death?  Is it frequent recurrence that doesn't allow the fetus to rebuild up resources in their body?  Is it a longer duration?  What makes them go to the state of dead?

There was also a sentence in one of the medical journals that I read which struck me "the important point here is these infants are normal; they are normal, but they are dead."  Not sure why that seems so powerful to me, but it does.

Last rambling thought relates to further pregnancy.  I really think that if the literature and the anecdotal experience of my doctors support the idea that there's a significant risk of recurrence I just wouldn't do it, but if I did, I feel like I would want to know where the balance point is between identifying a potential issue so you know to watch for it and study it and just giving you something to worry about that you can't do anything about.