Veteran's Day - Life and Death

Who am I kidding, while I’ve talked about other things and claimed this to be a general blog, this has always been more about Aurelia than anything else. And specifically about me and my dealing with her life and death. And thus I'm here, not trying to fill in a missing year, or even reflect on any greater aspect of life, but just to reflect on where I am in my relationship with her and her life and death.

At first when I reflected on her, I really only saw the death. And I was angry.

I still see the death at times, and don’t get me wrong, I’m still angry, I expect I will always be, but I realized this morning that I’m seeing her life now more often than I’m seeing her death.

I’m seeing that she impacted people. From her name to her loss, she has changed the course of the world. Not in the great ways that we write epics about or that fill our history books, but in the simple ways that flow into the exquisite banalities of everyday life. From extra hugs given to children, to moment of frustration able to be delayed just a couple minutes more, she has impacted people. And the gift of her milk benefited babies whom I will never know, but whose lives may have been saved from NEC through the donation of “her milk”. The gift of my being able to connect to another mother experiencing this all too frequent happening. Trajan will never take the birth of a child as a certainty, and while I mourned for this a bit when I realized it, this also is a gift from Aurelia’s existence.

I received a number of texts and messages this morning from people who remembered that today is her day and hers alone. The day of their birth will always be both of theirs as the day of his NICU discharge will always be his. And for some reason one touched me differently and I realized that I had tears in my eyes, but they were not of sorrow, they were of joy. Joy that we are not the only ones who remember her.

The greatest gift I can be offered in Aurelia’s honor is not forgetting her.

I think part of seeing her life more means that when I woke up today, while I was acutely aware of the day as I have been in the past, my desire was to do something positive and celebrate her existence rather than just reflect on my hating Veteran’s Day. And I did.

I reached out to an acquaintance who experienced the stillbirth of a twin a year or so ago, to pass on the importance of not feeling unique, alone, and isolated in the experience. I sent a flower arrangement to my amazing OB who has spent over a continuous week with me in the last three years, and who has given of herself as not just a doctor, but as a person and as a friend with just a simple note of thanks. Not because it was needed, as I’m pretty sure she knows my appreciation of her, but just as a simple thing to make me smile in remembering Aurelia and the first person who ever touched her and did so with not just care in her movements, but true depth of emotion.

Aurelia Diane, you were named for the strongest woman from ancient history that I could think of (that Paul would agree to, he vetoed Hatshepsut, for which we should all be thankful) who impacted the course of history. While your ripples in the universe will not be known by name millennia from now, they are no less significant. You matter, my first baby girl.

Aurelia Diane, you have two sisters who both bear a first name beginning with an A in your memory and a powerful middle name we bestowed upon them in your honor. You have an oldest brother who remembers you always and has been the force in this universe who has most unabashedly kept your memory alive. And you have a twin who does not know you now, but will know you, and know the gift of time that you gave him.

Aurelia Diane, I promise to try to see your life more instead of your death. I promise to try to continue living the lessons you taught me and to continue to share them.

Aurelia Diane, I’m not sure I ever actually told you this in words, but I love you. 

We are still alive!

I've been busy and mainly using phone as computer outside of the office, so I really haven't updated.  A couple of you who are commenters/readers have found me on Facebook or emailed me (see right bar) and had me find you on Facebook and that is actually probably the best bet for right now since I don't know when I'll get back to updating in a timely fashion...

I'm sure there are lots of cute pictures and interesting anecdotes in the last three months, but it seems likey I'll never really update them.

Brief updates:

Trajan started kindergarten at the end of August at our local neighorhood school.  He has a great teacher that it turned out we already know as her son was in Chiron's infant class.  He's had some behavioral issues and adjustments, but is doing really well academically.  He has been the most amazing brother that I can conceive of.  The devotion and love he shows his siblings is absolutely amazing.  It is definitely worth getting myself to take the time to come here and write a real post to document some of it so that I never forget how he has been with all of them. 

Poppins quit, by text, when the girls were a couple weeks old for reasons relating to her being pregnant, Medicare, WIC and other factors that aren't worth my time to bring up.  We were trying to find a quick nanny from an agency, but my mother volunteered to stay with the girls for August and September rather than have us leave newborns with someone that we wouldn't have the time to really vet.  That was great and really awesome for them.   Chiron started back at the daycare he was at before on August 1 and the girls joined him at the start of October.  Seems to be going pretty well.

Chiron is really blossoming into himself and starting to communicate with more words in the last few months.  His brother is still his favorite person in the world and it is really cool watching Chiron imitate Trajan (well, at least in most things).  Yesterday, I was running late and so I had Paul go pick up Trajan and I just went and got the littles.  Normally I pick up Trajan first and he helps me pick them up including rocking and kissing each sister as we put our shoes back on in the front room.  Chiron did this yesterday, I guess becuase Trajan wasn't there! 

The girls are doing well.  At the beginning of September, we got Ari in for a swallow study after the gastroenterologist agreed with me that something wasn't right about how she swallows and we found that she was aspirating with each swallow.  So she is on thickened expressed milk and should be in speech therapy, but getting all the ducks in a row with the hospital has been insane.  The GI nurse says that I should hear with her first appointment by Thursday at the latest, but since we have been working at this for a month, I'll believe it when I hear it.  Allie is following in the boys fine footsteps with extremely severe reflux, but so far no indicators of either milk soy protein intolerance or congenital lactase deficiency.

I was talking to a friend earlier today and realized how much has happened in such a short period of time.  Two years ago today, I was almost 20 weeks pregnant with Chiron and Aurelia with no idea of any problems on the horizon.  Since then, either Chiron or I has been in the hospital for six months and three children have been added to our family.

I still think of Aurelia often.  She is real to me even though she isn't to the rest of the world.  I held her in my arms, she was formed and perfect and complete.  She may have never breathed a breath, but she still was to me.  I don't know if it should matter when she died, but it does for some reason in my head.  She was very potentially viable had she been born instead of died on November 11, 2011.

That said, I think I've come much more to terms with her life and death.  I can mention her without sounding as awkward and don't avoid her when her inclusion makes an answer stronger or better.  I have had some odd thoughts relating to her and the girls.  They look so much alike that it leaves my wondering more of how she would have looked.  You may have noticed that all of their names start with an A.  Aletheia was actually the second name we had identified before we knew Chiron and Aurelia's genders and after a lot of discussion and research, I came back to it this time.  At that point Paul suggested that we make both of their names start with an A.  So all three girls are A's, and I like this.  I still mourn not getting to use and hear Aurelia's name though independently of mourning her, as odd as that may sound.

I've come to the conclusion that you should never make a comment on someone's gravid status, their children's spacing or their genders.  Because I can not count the number of times someone has volunteered that our family is perfect since we have two boys and two girls.

Paul is doing well.  He's always been good, but having the two littles has really resulted in him stepping up to amazing.  He gets the girls down each night while I put the boys down and actually takes and drops off all three littles at daycare on his own.  And he keeps us all fed in addition to all the normal household tasks of laundry, dishes and cleaning.  I've been overwhelmed a couple times by the situation in which I find myself that is my life, but he's plugged through like a pro this whole time.  I'm lucky and blessed and should probably remember to tell him that more often.  And to find the time to just sit and listen and talk instead of feeling like I always need to be running and doing.

Thank you all for caring about me and my whole family.  Here's a couple random shots:

Very random assortment, but I figure I'm unlikely to ever go fill in unless I get smart and use my Facebook to provide structure, so here's for now!

Oh, and I figure since so much of my life is filled with breastmilk that I should add something here.  Ari went up to the NICU for apnea which was probably related to her swallowing disorder, so she had a slower start to breast feeding, but I had both of them feeding pretty well as long as I tandemed at the time Ari was moved to the thickened milk.  Now all of her milk has to be expressed so it can be thickened.  And these girls drink a ton.  I was having to thaw some for a bit a couple weeks ago, but I think I'm back to keeping up with them.  Since Allie direct feeds in the evenings and nights, it's hard to know exactly how much they are going through, but it is dang close to two liters a day if it's not over. Part of my stress came because I gave away the vast majority of our freezer stash early on because until Ari stopped direct feeding I was staying well ahead of them.  But things are looking alright now.

And I lost it...

So, I've held it together very well.  Hell, I'm not even sure I'd say I've been holding it together, because it's been pretty easy.  I'm rational.  I understand things happen.  And that doesn't mean it will happen again.  So, I've been very fine.  I've taken to thinking of these two as going to be here at some point.  I've entertained the idea that it will be via the NICU possibly, but really expecting them by 37-40 weeks as a part of our day-to-day life.



Then I lost it.



I don't know if it's being at the same gestational age or realizing that I'm going to have to go for the longest stretch in the history of this entire pregnancy without an ultrasound or the preterm labor nurse upsetting me, but I've lost it.  It was definitely the preterm labor nurse as the trigger, but I don't want to put it all on her.



How do I know I lost it?  I called my OB's nurse this morning to confirm that something the preterm labor nurse said I didn't need to worry about and I ended up where I could barely (if that) talk because I was crying and just had lost control.  I'm sitting here typing with tears running down my face.  Thus, I say I've lost it.



To backtrack: yesterday I had an appointment with the preterm labor nurse and then an OB appointment.  The preterm labor appointment was in the morning and went great in terms of the babies and my status as a pregnant person.  Both had good heartbeats.  Blood pressure was good.  Cervix is long and closed, yeah!  OB appointment also went well with both looking good on the quickie ultrasound and she also checked out my cervix and agreed it looked great.  Four cervical checks in 88 hours, I declare my cervix to be pageant queen popular.  Everything medical and related to this pregnancy at both appointments could not have been improved upon.



So, why the crazy?  Well, the preterm nurse took me back to last time.  I had an appointment with the perinatologist and her scheduled for a Thursday, but after feeling jumangi drums and just so much absurd amounts of motion that it distressed me, they had me come in Wednesday to check them out.  They did the 24 week anatomy growth scan (24 weeks would be Friday) and everything looked great.  Viable and perfect were words used.  Yeah, ain't that almost funny?



She brought up this appointment and what I had felt and brought up that this was likely Aurelia doing her best to try to get oxygen.  The nurse even said to communicate "hey mom, I'm not getting air."  Yup, said that to me. 



Yeah, that's a kick in the ass.  But you know what, there's nothing we could have done differently.  There's nothing we could have done to help her.  And if I'm being completely honest, the outcome of two 24&0 weekers one of whom has been experiencing oxygen deprivation likely would not have been a better outcome than where we have ended up.  But still, having someone say that yes, that meant something was wrong and I was the only one capable of getting the message makes me sick.  And now I'm supposed to be watching for fetal thrashing?



I meant to ask the OB about it yesterday and we got to the point of saying that the preterm labor nurse had upset me (though I kept it completely together with her oddly), but got distracted and never got into why.  Go attention deficit.



Also, the OB had convinced me early on this pregnancy that we weren't certain this was a cord accident.  And this I think helped with my piece, because cord accidents are one of the causes of stillbirth that has recurrence where many stillbirth causes are flukes.  So, now I'm back to that worry about the recurrence rate. 



Oddly, I just realized that I never changed the little summary box of "our world" that's in the border of the blog page to not say cord accident when the OB convinced me that the neonatal nurse practitioner told me it as a certain cause to make me feel better, but they couldn't be certain.  I will say that cord compressions definitely fit well with the symptoms and the experience of her motion.



And I'm feeling much better post this rant/ramble and a conversation with my OB's nurse, who is an amazingly patient and kind soul, this morning. 



I have the 24 week anatomy/growth scan with these two on Monday and then I will see the preterm lady again.  And then I enter my new distress as the OB set my next appointment for four weeks and the perinatologist will set my next appointment for four weeks, so I will have to go almost four weeks without seeing them on an ultrasound when I haven't gone even two weeks so far this pregnancy.  The preterm labor clinic will do the Doppler, but even she has said that she's not 100% certain she's identifying them separately.  It may seem odd, but the idea of possibly not knowing one is dead for weeks is almost more upsetting than the idea of one being dead.  So, I anticipate some basketcaseness for the next four weeks.



I'm not ok, but I'll make it.

Afterthought: I am very lucky that I'm signed up to work pizza Friday at Trajan's school today. Two hours of serving up pizza and fruit and talking and playing with three lunches of kids and the world is always a better place. I'm still convinced I'm pretty blessed and lucky, even if I'm a bit crazy today.

Guilt, Superstition and Turkey

The first thing out of the doctor’s mouth after “I’m afraid something catastrophic has happened, baby A no longer has a heartbeat” was “it’s nothing you did, it isn’t your fault.”

Immediate thought 1: How do you know, we’ve never met before today.

Immediate thought 2: Thou doest protest too much.

Hearing those same words from a doctor I’d known for years and knew more about my choices and lifestyle decisions and the like might have been different, but coming from someone I didn’t know at all, it seemed like just a blanket statement that they say to absolve your sins rather than a medical fact.

                                                                    

I hadn’t jumped to assuming responsibility until she said those words.  Obviously if there’s a case where it isn’t my fault, then there must be a case where it is.  And so rather than absolving my sins, she left me wrestling with guilt.

Now, to be clear, intellectually I know that it was not my fault.  I even have the added support of Chiron’s amazing size and health for his gestational age.  My purpose in writing this is not to question whether or not it is my fault.  It is to share where my mind is and hopefully explain some other thoughts.  So, while I intellectually know it was nothing I did, I also live with a feeling of “yeah, but she died on my watch.” 

That’s the context of guilt.  Leading us into superstition.

If you’ve ever spend much time around a maternity floor or a NICU, you know that both of these arenas are teeming with superstition.  Sometimes it’s true though!  There was one nurse on the L&D side that I would always either start contracting or step up the intensity and frequency of the contractions when she was around.  After the third time this happened, it was declared (by them) that they just would always switch her out with someone else rather than treat me.  I tell this story because I think it’s an example of a principle: while it may not be certain, anecdotal and circumstantial evidence is enough to make a decision on when there isn’t a great cost.

I think I now live that principle.  It may seem weird, but I just feel like I should do things differently this time.  Not everything, but spice up the mix.  Downplay the déjà vu sense.  Err on the side of caution.

I did Pilates several times a week last time until the week Aurelia died and walked a few miles every day with the dogs and sometimes Trajan.  Now? None.

Last time I didn’t do the Boost Plus drinks and just tried to eat more and well.  This time?  I do them.  Plus every vitamin suggested at all.  Fistfuls of them with glee.  And I’m already paying attention to getting in a position at my desk that has my legs partway up.

Some things might be less benign.  I’ve refused to take even Tylenol this time under the theory of why introduce anything that is uncertain that I can avoid.  Until today when I realized that whenever I moved my head, I was distracted by pain.  That I was really quite uncomfortable.  And something clicked and I decided to go ahead and do it.  And I took two Tylenol.  Mark it: 08:45 Central time on 2/7/2012 (disturbing confession: the marking it is against a negative outcome so I can come back and point rather than as a celebration of my progress).

I have done a couple positive things such as my breaking my avoiding of a certain coffee spot and their rooibos lattes as well. 

And that leads us into the last topic, turkey sandwiches.

I would like a turkey sandwich.  Turkey and provolone to be exact.  But I won’t eat one.  Why?  Because it is recommended due to Listeria.  Now, having read way too much about Listeria, not eating a turkey sandwich actually doesn’t provide much protection at all.  The odds from all sources of Listeria are such that I’m actually endangering the babies less having a turkey sandwich than if I drive somewhere to pick up something else.  And the foods that they recommend not eating are only those that have been implicated in Listeria outbreaks despite the fact that the vast majority of cases of Listeria in pregnant women are from single cases rather than outbreaks.

However, the flip side is the case where I am again the winner of extreme odds and contract a case of Listeria.  Had I eaten a turkey sandwich, I think this would make the guilt situation much, much worse.  And so I don’t.

Don’t get me wrong, I know there are much worse things than wanting a turkey sandwich and I would gladly trade the entire rest of my life’s right to eat turkey sandwiches for some sort of guarantee of health or even an increased likelihood.  But it doesn’t work that way.  There is no bartering with death.

No guarantees, but hope.

Trajan stopped my heart for a beat...

"I hope my next sister doesn't die."

Pause

"I never got to see Aurelia, so I don't even know what she looked like."

Questions about what she looked like and whether we got to meet her.  Answers and telling him about the time we spent with her and our description of what she looked like.

"Even if she was dead, she's still my sister and I wish I'd gotten to see her."

<end scene>


Trajan doesn't actually know that I am pregnant yet.  We haven't really discussed it with him and I think it will make sense to wait until we know genders just to make it an easier conversation.  The above conversation arose from him discussing his desire for one more brother, PLUS another sister.


This was at dinner time and you can imagine my apprehension when he turned to me last night after we finished reading in bed and said, "let's talk about stuff."

What did he proceed to talk about?

"Like why we only have doughnuts on the weekend and only sometimes then?"

I love this kid's mind.  The discussions with him that we have every day just make my world a better place.  And you know what, bubba?  I hope no more of your siblings die too (well, I'm an actuary so I know mortality will occur, but lets say none die prematurely).

And I've said it before, but I really think discussing Aurelia's life and death with Trajan has likely helped me more than anyone else.  He's not plagued by taboos or trying to say the right thing, he's just trying to understand the world and so am I.  I'm very lucky.

Innocent and wise.  Sleeps with a fish and prefers the floor.

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.

Remembrance Day

It's amazing how one little comment can change your attitude and realign your relationship with the world.

A good friend moved to the UK after meeting, marrying and loving an amazing man who happened to be from Manchester.  She posted a message on my wall this morning that simply stated: "Did you know that in the UK, today is referred to as "Remembrance Day"?"

Basically the same idea as Veterans Day, but with a different label.  And that label got me thinking.  Mourning, while perhaps valid, doesn't really do anything good for anyone.  Remembering and celebrating just seems so much better.

Remembrance Day also fits with what I've been thinking over the last few days.  I at first thought it was very odd that I've been thinking about this recurrence of certain dates when the due date didn't phase me at all.  I think it's because they are different.  The due date was an arbitrary date.  Now there are clues and reminders that take me back.  From Halloween to Veteran's Day (going with the US name) with the coming of cool air and the time change.  I'm remembering who we were, what we dreamed of and what we experienced.

We return back to the same place around the sun, but I am not the same.

Remembrance to me conveys celebrating the happy, the hopes and the significance that she had.  Because while she may never have breathed, she did impact the world.  So today is a day of celebration to our daughter.  Remembering every single ultrasound resulting in some sort of comment about her beating the heck out of her brother.  Remembering laughing about how she was in a typical singleton positioning in the uterus with her brother showed transverse across the top in a position more typically seen in triplet pregnancies.  Remembering the dreams and hopes that we dreamed for her.

We sent popcorn to the antepartum and L&D part of the hospital today as part of our remembrance.  It's amazing how long it took me to decide what to say on the quick little card.  It's easy with the NICU because it's really just about Chiron, but this group of people includes those who cared for Aurelia and all of us while they were still in utero.

I went simply with "thank you for the care you showed Aurelia, Chiron, Trajan, Paul and myself during our time there" and signed it.

So if you have a moment this Remembrance Day, take a second to think of our daughter and join me in a smile for her.  I'm glad she existed.

Truths I have learned in the last year:

There are no right words.  But no words is definitely wrong.  Just an “I’m sorry” or “that sucks (perhaps with a bit of profanity thrown in)” goes a long way to making the individual still feel connected to the world.

Perhaps the worst aspect of grief or catastrophe is the sensation of being alone in the experience.  The power of making a connection with someone else who has experienced something similar really amazed me.

Joy and sorrow can go completely hand in hand.  I found a flip camera recently and there were some videos from the NICU in Chiron’s first week were Paul and I are laughing and joking.  In retrospect, it amazes me that we experienced anything other than anxiety, grief or just plain being overwhelmed.  But in the moment, the entire range of emotions can occur.

Macabre humor can be one of the strongest weapons in the arsenal to deal and continue functioning.

People are greater and stronger than I knew.  The strength and compassion of our friends and family in supporting us has floored us and continues to do so.  Humanity and our connections to each other I now am convinced is the main source of our strength as a species.

There’s a catch-22 in the loss of a child: others don’t want to bring them up because they fear it will make you sad, but it is much easier to discuss them when the other party is the one who “remembers” their existence.  I think this was particularly pronounced in my case as I have had so much trouble with vocalizing her actual name instead of just using pronouns.  Did it right there, see?  Aurelia.

There’s an Elizabeth Edwards quotation from a speech she gave in Cleveland that I think communicates the truth about discussing a dead child amazingly well: “If you know someone who has lost a child, and you’re afraid to mention them because you think you might make them sad by reminding them that they died—you’re not reminding them.  They don’t forget they died.  What you’re reminding them of is that you remembered that they lived, and … that is a great gift.”  In our case, Aurelia never lived, but I still think this is true.  And based on some friends I have known with miscarriages, I think it remains true there as well.

On the Elizabeth Edwards train of thought, I think she is on to something with her quote on resilience.  It was going around the internet about the time the twins were born and stuck with me: “Resilience is accepting your new reality, even if it’s less good than the one you had before.  You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”  I believe this is what we have done and our family is stronger for it.  I didn’t notice it at the time, but my philosophy I wrote about really is the same idea as what she said.

Seeing the flipside has only resulted in positive outcomes.

Someone connecting with what you are thinking can be incredibly powerful.  When Chiron was born, the most common statement was "Congratulations!," even from the nurses in the antepartum area.  While based on the very first truth, say some words, this was appreciated, it always felt a little awkward to me.  Were they congratulating me for delivering my son over ten weeks early?  This seemed odd to me.  One person said the exact opposite, "I'm sorry."  And she said this in the context of Chiron's birth, and I remember being so struck by her ability to acknowledge what I was actually feeling.  I don't think it is chance that this is a friend who has struggled with infertility.

The effect of someone including your dead child's existence as a part of their universe is powerful.  I'm pretty sure the passing comments, texts and messages that acknowledge Aurelia either directly or indirectly, through recognition that I have been pregnant with a girl child or with twins for example were made with no idea how much they could make me smile.  Thank you.

There's a semi-secret community of people who have lost children.  And whether through miscarriage, stillbirth or death as a child or an adult, everyone apparently belongs and that is nice.

There is no way to quantify grief.  I still try to think about whether one type of loss is better or worse than another, but I should know by now that you just can't rank these things.

Labels will always be hard.  The one in particular that I really have trouble with is whether I'm cheating somehow to count Aurelia as a stillborn child.  The strictest definition typically seen is at least 24 weeks and 500 grams.  She died just past 24 weeks and was born at 30 weeks.  When she was born, she only weighed 397 grams (though for some reason, this is the only number I don't feel completely certain on).  However, she weighed less because she had been dead for six weeks than she did at the time of death.  So, I think she probably does count.  And I know multiple babies who were born at the gestation she died who are alive and even developmentally normal.  I just feel like I'm cheating calling her a stillborn next to those who deliver full-term stillborn children.

The mind of a child enhances existence, even the hard things.  Trajan's understanding and processing of the last year has strengthened me and helped me in my own processing.  He and his mind remain the thing in the world that most amazes me (just starting to see this in Chiron as well). 

I am blessed.  And lucky.

Day of Significance

I've been trying to write a post and it's just not happening.  I'm not sure why I want to write it, because I really already did, but I still feel like I need to write something.

I guess the difference is that was about what I think and right now I'm thinking more about everyone else.  Our friends and our family.  Our network who has been amazing throughout the last year.  I guess I just wish that there was a day that I knew that she would cross their minds.  A day of some significance.  But I don't expect there would.

The typical choice for a stillborn child is their birthday, the day that they gained a physical independent presence in the world.  But that is also the day that Chiron was born.  And it may not seem fair, but that day is more about him and the start of his journey.  And that's even to me who carried both of them.  I really can't expect anyone to think of her on their birthday.  And is it really even her birthday?  Technically, I don't think she was born.  We didn't get a birth certificate.  Medically, I think she was just removed.

And it's not just because it is also Chiron's birthday that this date doesn't make sense.  Perhaps even more important is the fact that she had been dead for almost six weeks.  We had all come to terms with a reality in which she was not living by then.  All that remained were our physical goodbyes.

I really think that November 11 is the day that will always be specially hers in my mind.  But as this is essentially a construct of my own mind, it will not have significance to others.  Why do I say it's a construct?  Because we know she was alive the afternoon of November 10 and we know she was dead by 8:00 am November 12.  The perinatologist made a guesstimate that it had probably been the night before and so I've run with November 11.  Since I've since read that fatalities due to cord compressions most likely occur during 2-5 am, it seems likely it was actually November 12.  But I'm sticking with November 11 in my mind regardless.

Facebook doesn't give you a slot to input "date I delusionally credit as the anniversary of the death of my stillborn daughter" though.

So, what is the purpose of this post?  I really don't know.  I guess it's mainly to sort out in my own mind that I haven't worked through everything yet.  I find myself thinking that I've really come to terms with everything, but this is not true.  And probably never will be.

And the real reason I'm writing this?  Probably that I need to send something out there to the universe every so often as a sanity check to make sure that she was not just a figment of my imagination.  That she existed.  That she was Heart.  That she abused her brother in every ultrasound we ever saw.  That her name was Aurelia.  That she had a middle name despite the fact that I was asked what it was for the first time within the last couple weeks.

All that long ramble aside, I have gotten amazing evidence of her significance in the last few weeks.  In addition to the Scrappy Doo Preemie super hero entry, which he came in first place and is going to judging on (!), we also created a fundraising team for Hand to Hold based on both Chiron and Aurelia, http://goo.gl/QUmZo.  We did share this with a few people and I stuck it on facebook twice, but we really didn't work to try to get people to support them.  We just made it available.  And as you can see if you clickthrough, people were amazing.  The number of separate family units that added their resources to ours has floored me. So, while there may not be a certain date that they all will think of her, I know there are dozens of people out there who have Aurelia cross their minds at times.  And that makes me smile (and perhaps cry).

Heart & Eggplant

Philosophy

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

"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.