Friday, December 31, 2010

Ends and Beginnings (Part 2)

December 31st. The end of the year. We have about 4 hours to go here in my time zone before this year is quits. This is the quietest New Years we have ever spent. Even last year when I was almost 8 weeks pregnant (and tired...and nauseous), we hung out with friends of ours who were due to deliver their baby in February (They did. She lived.) We spent the evening not drinking, taking photos of ourselves with the new DSLR, playing band hero, and watching the ball drop.

This year, it is just my husband, myself and the cat.

And the ashes of our dead son. Can’t forget about those.

I feel the best line to sum up this year is: “It was the best of times. It was the worst of times. Mostly the worst”. Because it was. 2010 held so much fear, grief, sadness and disappointment. I cried more often than I can remember. I often wonder if you gathered together all the tears we cried this year, could you carry them around in a cup? In a bowl? How many were there? Could they water a plant? Could they make up cloud?

But, as this year draws to a close, I don’t want to focus on the worst moments. I spent much of the year, and many of these postings doing that. No, for my last post of the year, I want to focus on the good, shining moments of 2010...because they define the year as much as the worst ones do.

In 2010...

I saw my baby kick, squirm and suck his thumb on the ultrasound.
I watched my husband get excited about, and fall in love with that little being.
I named that child the boy’s name we had been dreaming about and planning on for years.
I felt my baby kick.
I fought hard to keep him alive (mostly by lying around and doing nothing).
I birthed him. It hurt, but I survived and I would do it again.

I loved him.
It did not matter that he was about to die. He was mine. Ours.

He was perfect.

2010 contained my Aidan. And 2011 will not.

In 2010 I experienced love for my child and it was as big and as strong, and as overwhelming, and as profound as I ever thought it would be. And I loved that about this year. The tears I cried, every single one, was only because I love him, and miss him and wish that Aidan would exist in 2011, and 2012, and 2013...and on and on. I do not want to leave him behind in 2010.

That is the sad part. As much as I am hoping I get to parent a living child this year, watch him or her grow, and live and breathe and be...

I wish I could take Aidan with me into the new year too.

Instead, no matter where I go, or what I do, no matter what the coming year brings...

I carry his heart. I carry it in my heart.

I love you my boy. I miss you.

This year belongs to you.

Is any part of you sad to leave behind 2010? What are your hopes for 2011?

Ends and Beginnings (Part 1)

This is going to be a somewhat long and jumbled post and I might even make it into two posts.

Perfect cap to a somewhat long and jumbled year.

It's New Year's Eve and I finally got the results of my 2nd beta today. I tried calling the day after I had it done (December 29th) and I got put on hold for 15 minutes at my doctor's office. I had to hang up eventually because I was at work and ya' know, had stuff to do. When I texted my husband at home, he said he'd drive over and see if they would tell him. Not 20 minutes later he texted me back saying my doctor's office had CLOSED for the day!!! (Did they leave me on hold and close??)AND they were closed the next day, December 30th!!! (I'm still not sure why that's a work day...middle of the week and all that). Anyway, finally got the results today and my 18 DPO beta from Dec 28 was: 242.

First beta: 26, Second beta: 242 Time between: 118 hours. Doubling time: 36.67 hours.


Then of course I start reading stuff on the Internet about how 'late' implantation (which I assume I had), more often results in miscarriage...

I really should just move to Antarctica and the penguins and I could survive just fine without a WiFi signal to mess with our heads. New Year's resolution #1: No more checking the Internet for shit that just scares the bejezus out of me and doesn't contribute to my mental well being.

Of course, I also have a really bad cold. I've had it for a week and this morning woke up feeling as though my left ear might explode and my throat hurt so much I could barely swallow. I thought I might have an ear infection. Due to my heart, I try not to screw around when I think I might have an infection. Now this would be the perfect type of illness for my family doctor to deal with, but I didn't even bother calling her. Why you ask? Because to get an appointment with her takes days if not weeks. If I'm actually sick when I need her, I will either be better or dead by the time my appointment rolls around. I didn't have to wait long at the walk in clinic and fortunately the doctor felt it was viral related, no antibiotics required and told me to take Tylenol (but nothing else!!). I have since caved and taken an extra strength Tylenol. I have been avoiding them the last week (even though I would have loved to take one as this cold is kicking my ass) as I made one of those stupid promises to myself. You know the ones where you promise to be good and safe and do all the right things and then in the end what you want will most definitely occur because of all the sacrifices you made??? ie: "If I don't take Tylenol for this cold, my pregnancy will be fine and result in a healthy baby". Yeah, well...can't think along those lines anymore. It didn't work for it probably won't work for baby #2. But I might just Google it until midnight...

Anyway, as I was about to leave the doctor's office, he asked the question. "Is this your first pregnancy?" I told him no and what happened. He responded with "God is watching over you". Since I don't deal with many religious people in my daily existence, I was a bit taken aback with what to say. Should I shoot back that I came here for medical, not spiritual advice and that he should keep his God talk to himself? Should I say "Thanks, but we don't believe in God?" I responded with the less antagonizing response of "I hope so". The doctor then went on to say "Oh, you don't have to hope. You hope that I'm a good doctor and that your husband is a good husband...but God is always good".

Um...right....great...tell that to Aidan...but yeah, whatever....

We made a move to walk out the door and that's when the doctor said "And you never know, he might have been disabled"....


I don't think I'll be going back to that walk in clinic anytime soon. Jackass.

I have more to say but I'd like to write a post dedicated to Aidan and this year a bit later. Since I'm just staying home tonight and vegging on the couch, I'll continue with Part 2 after I choke down some dinner.

Tuesday, December 28, 2010

Favourite Christmas Present

One more thing which I forgot to mention.

Other than the biological one, my favourite present this year was from my mom.

It's a very small stocking with Aidan's name on it. I had actually bought this one (on the left) before Christmas, just because I had to buy him something and I hated the fact that he wouldn't be represented on our (theoretical) mantle. I was happy to find the smallest one I could (it's actually meant as a gift card holder)...but it was SO awesome that my mom thought of it too and managed to get one with his beautiful name on it. It will be brought out every year and hung with the matter how many other stockings are hanging.

Aidan, I miss you baby.

What was your favourite present this year?

An Update to Half an Hour Ago

Okay, I made my husband go out into the cold winter night and pick me up another pink line pregnancy test.

I am somewhat enthused by the progression shown below:

I know it's bad lighting and kind of small, but the test line is obviously getting darker compared to the control. The latest one taken about half an hour ago is darker than the control line. It's not definitive proof that all is well, I know, but it might help me to sleep tonight.

Thanks for following along on this already nail-biting journey.

First Beta

Okay, we've progressed to freaking out over here.

At my last fertility clinic visit in mid-December they said that I didn't need to take a home pregnancy test becuase "the blood test is more accurate, don't waste your money". That would be all fine and dandy except my pregnancy test was due December 24th and the clinic was CLOSED for the holidays...UNTIL JANUARY!!!!

So I'm having to do my blood tests at my family doctors office. And they do not understand early pregnancy fears and the need to IMMEDIATELY KNOW WHAT THE HELL IS GOING ON WITH MY BODY!!! Holidays be damned!

I ended up having to do my first "beta" on December 23rd, when I should have been either 12 or 13 DPO (probably 13, but if we err on the side of lowest possible DPO I'd go no lower than 12).

I got the results back today and it was 26. Basically one number higher than what they would call "equivocal" results (which the dictionary defines as 'open to interpretion').

Super. So as of last Thursday I just barely tipped the scales into pregnancy territory.

Now since then I've had two 'pink line' tests which showed a darkening line from barely visible on December 24th to obviously positive December 26th (but not as dark as the control line). I wasn't however, able to do the second half of my blood 'beta' test until today (118 hours later to be exact) to show whether or not I'm 'doubling' at least every 48 hours.

And they won't be able to get the results of that test to me until tomorrow!

I think I might need a paper bag to breathe into until then.
In. Out. In. Out.

Monday, December 27, 2010

Que Sera Sera

Que Sera, Sera...Whatever will be will be...The future's not ours to see...Que Sera Sera.

I find myself humming this tune over the past few days. Just to keep myself calm. I cannot know what will happen. I can only do what I can. Eat well. Rest often. Take vitamins.

Did that the last time too.

It doesn't help that I'm currently working through my second cold of the season. I was sick only a month ago with something similar and now I got to cough and hack my way through the Christmas festivities. (I'm chalking it up to the snotty nosed children I look after at work...) I would LOVE to take some Tylenol, just to make the pounding in my head go away, and I know it's considered 'safe'...but I just don't want to risk it. I remember that about my last pregnancy. One day I didn't care what meds I took or what I ate, and the next day I'm checking the apple cider to make sure it's pasteurized and avoiding anything that looks remotely like a 'soft' cheese.

I hope I didn't hurt anyone's feelings with my Christmas post. I know I probably did, and I'm sorry. I know that as much as you might be 'happy' for me, it hurts to see someone else get what you want. I know because I've felt it. I considered starting a new blog, but I just can't. I like it here, in Aidan's space. I'm home when I'm here and I'm not sure I have the energy to maintain two blogs. Plus this blog chronicles my life, and this is a big step. I don't want to leave my little support system that I've built up here (all 69 of you who follow along!). I'm so grateful for all the well wishes I received on my last post. We (obviously?) aren't telling anyone we know in real life yet...but it was nice to share my good news with those in cyber space. With Aidan I didn't do enough of sharing the good moments, so I hope that soon I will be able to work up the courage to share it with our immediate family and close friends.

But don't worry, this isn't going to turn into a shiny, happy pregnancy blog. I wish it could...but it won't. The next (hopefully??!!) 9 months are going to be stressful, even if all goes well. Our life in 2009 and 2010 was such a roller coaster, I'm hoping that 2011 resembles the graceful swan ride on a clear sunny day.

So all aboard...hopefully no life jackets will be required.

Saturday, December 25, 2010

Miracle On Our Street

I woke up early this morning. It's Christmas. As you remember a few posts back I created a list for Santa.

Sadly, Aidan was not under my tree, nor was he babbling away in his room. Our house was quiet. His room is empty.

He is gone. Not coming back. Not even the magic of Christmas could counteract that.

But, I'm pleased to report that not all was lost. Santa did bring me this:
As much as I miss Aidan and wish this was his first Christmas here with us, I cannot go back. I can only hold on tight to his memory and pray that this new little life blossoms into someone healthy and happy and wonderful and alive. Keep the faith that maybe this time will be a little less scary and sad and filled with a little more hope and joy.

So, today my husband and I feel a little like this:

I hope this day was not as hard as you expected, and maybe even filled with some peace and joy.

Merry Christmas.



Tuesday, December 21, 2010

Biology is Destiny


I distinctly remember this being my response, when at age 17, I was told by my boyfriend’s sister that she was pregnant. Even if she hadn’t been a possible drug addict and definite high school dropout, my response would likely have been the same based on her age alone.

She was 17.

In my WASPy neighbourhood, it was general knowledge that getting knocked up as a teen spelled “Loser”. It was taken as an automatic given by myself and my high school friends that getting pregnant before one was finished university, had travelled, had a well paying job, and was happily married was akin to a suicide mission. Your life was over.

This is why, not 5 minutes after I found out about his sister’s pregnancy, me and my then boyfriend had a nice long heart to heart that if something similar were to happen to us, I was definitely having an abortion. Sorry, Catholic high school much as I planned to enjoy our sex life, there was NO WAY I was risking my entire future on a BABY. He agreed.

I, being one of the ‘responsible’ teens ensured that I started on birth control (for a whole month prior to commencing sexual activity to ensure that it was working) and we used condoms. I was not about to risk my future. Or his. And damn, it would have been SO embarrassing to have to tell our parents. That scene in the movie “Juno” to this day, makes me squirm.

The adults of our social spheres (other than the ones that preached abstinence of course), would have applauded both myself and my boyfriend for such responsible attitudes towards our burgeoning sexuality. They would approve of our plan to ensure that our emotional, social, educational and financial futures were not compromised by our sexual desires. They would have been glad to know that, although we were fucking, we weren’t fucking up.

But nobody warned us about our biological futures.

This seems to get missed in our world focused on achievement, self gratification, educational pursuit and the accumulation of both wealth and experience. Women (and men) are encouraged to go on to higher education, pursue careers, date, travel, save money, buy real estate, live together, get married, ‘wait’ a few years and enjoy each other’s company...AND then have a baby.

However, take a look at the following graph:

Pregnancy Rates Over the Course of One Year (Women with Normal Reproductive Function).

March of Dimes also reports that:
"The risk of miscarriage increases with age. Studies suggest that about 10 percent of recognized pregnancies for women in their 20s end in miscarriage (1). The risk rises to (1):
About 20 percent at ages 35 to 39
About 35 percent at ages 40 to 44
More than 50 percent by age 45
The age-related increased risk of miscarriage is caused, at least in part, by increases in chromosomal abnormalities."

So biologically, according to this info we would all have been much more likely to have gotten pregnant and had a healthy baby sometime around the age when we were dealing with final exams, hangovers after one (or two or three?) too many shots of Tequila, discovering the best way to ‘sell’ ourselves on a job application (without lying!), ‘finding’ ourselves in Europe, and deciding whether Jesse or Tom is better in bed.


Babies. I’ll get right on that.

But here I sit, ready and willing to have my life completely changed by a demanding offspring...and have come up short in the biological lottery. Although my views on abortion have not changed for general society (I am still resolutely pro-choice), Aidan, and his death, has made me question my previous need to so tightly control my biological ability to reproduce. What was I so worried about? That I wouldn’t have the job I always dreamed of if I had a baby too young (like at 24??). Well, I actually don’t have the job I always dreamed of now...and it’s okay. That I would show up at my wedding huge and pregnant, and that the day would somehow be less special, or somehow ruined as a result? Um, probably not. That I would not fit in with my peer group as a result of my 'youthful indiscretion'. Yeah, well, I don’t really fit in with my friends now that my kid is dead either. And there is no baby to replace the hurt I feel at not belonging. That I would never get to travel having to lug a child around? Maybe not...but as observed during my travels, other parents make it work. I’m sure Brian and I could have as well.

Sometimes I look at the current predicament that my husband and I are in and wonder “what the hell were we waiting to have a kid for??” I’m not ‘old’ by any stretch of the imagination. At 28, I’m still considered a ‘good’ age to get pregnant and have healthy babies, but as we all know there is no ‘add baby to cart’ button . Who knows how long it will be before (if?) we get another chance at a baby. It could be soon...or it might not be.

If I hadn’t been so worried about fitting all that life in before I had a kid...would I have one now?

Knowing what you know now, would you have done anything different in your reproductive past? Does your dead baby make you question any of your previous choices?

Thursday, December 16, 2010

Nobody's Perfect

I feel like another completely random post:

So, Scarlett Johansson and Ryan Reynolds are divorcing. Too bad, so sad. I liked them mostly because I like both of them as actors, but I also respected that they didn't treat their wedding or their relationship as tabloid fodder. You rarely saw them photographed together and they didn't seem to do the 'Hollywood stuff' that seems par for the course for other young actors these days.

But, the fact that they were rarely photographed together was exactly the problem, because to be photographed together you have to actually spend time together. From their released statement it sounds like that's what broke them up, a lack of togetherness. Hard to build a marriage when you never see the other person.

I'm sure I'm putting way more thought into this than is actually completely necessary. I'm in the two week wait that will actually be TWO WHOLE WEEKS this time, because I'm on daily doses of Prometrium. Damn two weeks is long. Plus I'm on holidays from work this week just to use up some vacation time, and I have a lot of time on my hands.

Anyway it struck me as kind of funny that both Ryan Reynolds, recently voted Sexiest Man Alive by People Magazine and Scarlett Johansson, who was Esquire's 2006 Sexiest Woman Alive, would each look at each other and think: "nahhh...I can do better".

I suppose perfection isn't always perfect.

Twiddling my fingers over here. Comments to pass the time away are appreciated.

Friday, December 10, 2010

Jingle all the way

I've actually been in a slightly better mood lately. I think it's because we've finally reached the time of year where Aidan was 'alive' last year. And, as much as it completely and totally sucks that he's not alive this year, and I would do anything to have him's also...well...not as awful as I was expecting. It's always going to be sad of course, but I'm okay. I'm coping.

I was really afraid that this Christmas would be absolutely horrible. That neither my husband or I would be in any type of mood to celebrate. That we would mope through the holidays and ruin it for everyone else. And maybe we're not *quite* the joyous people we could be, but we're also really trying not to be stuck in the dumps either. We have got it together enough that we are over halfway through our shopping and wrapping. We went out and bought a real tree and decorated it, just like we always do. I have done some baking for Christmas, and even spread a bit of holiday cheer by taking some cookies into work (and they were DAMN good cookies). So, all in all so far December hasn't been a total washout this year.

It has helped a lot that I went back to the RE, where, as I expected from our test results she proclaimed us as 'not having any problems that she could tell as per our testing'. But, when I told her about the spotting that I have before EVERY period, she immediately suggested that we do some cycle monitoring and that I start on progesterone therapy for the second half of my cycle. YEAH! FINALLY!!! (And cheap!!!)

In case you're keeping track, ovulation should be taking place as we speak and I will start progesterone therapy on Saturday. I'm just glad that someone is finally taking this spotting seriously, and trying to do something to stop it from happening. Although it might not be the only thing holding us back from getting pregnant, I feel it's a step in the right direction to have a luteal phase that is at least 14 days, rather than my usual 11ish days.

So that's where we are at folks. It could all come crashing down in a few days and I could be on the floor sobbing my eyes out, but I'm enjoying this little holiday high.

How are you doing this holiday season? If you've celebrated without your baby before, how is this year ranking in comparison?

Friday, December 3, 2010

A year ago...

A year ago I got my positive pregnancy test. We had been trying for 8 months and sudden there it was...two pink lines!


It was so nice to have hope. I miss that.

I miss Aidan.

Friday, November 26, 2010

Motherhood FAIL

Sometimes I find one of the worst things about being babylost, is how it preys on your deepest darkest fears about yourself.

Take for example the pregnant woman who would never admit it out loud, but who is secretly afraid she is going to be a terrible mother.

Maybe she's never been around children before: "I don't know what to do with a baby! How do you change a diaper? I'm not going to be any good at this!"

Maybe she had a difficult childhood and is afraid to repeat it with her own child: "Can I really be a good mother to a child without royally screwing it up?"

Maybe she's afraid to have the responsibility of another human being completely dependant on her: "What if something happens and I don't know what to do? What if the baby gets sick and I don't realize it?"

For whatever reason, she's pregnant and nervous about caring for the baby...

And then the baby dies.

Despite all the reassurances in the world from husbands, family, doctors, and friends that "it's not your fault" and "you didn't do anything wrong"...this woman can't help but feel her worst, deepest, darkest fears are confirmed. Something happened. The baby died. She didn't know what to do. In her mind, the baby has now been entered into evidence as "Exhibit A".

My epic fail is not those above. I had no reservations about becoming a mom. I knew both my husband and I could handle it. We are responsible people. We have good jobs. We had good childhoods. There are no skeletons in my closet ready to pop out and hit me up with the guilt of not being a good mom. I have every faith in myself that way.

No, my epic fail is of a different nature. My epic fail concerns my body, probably not a surprise if you've been keeping up with my body thoughts posts.

The whispers from the closets keep saying to me:

"See Emily...why did you think your body could handle a pregnancy? Your body is not like other women's bodies. Your body is weaker. There are things wrong with you. Your medical file is not pristine. Your health is not perfect. You are abnormal and now your imperfect body has killed Aidan".

Those goblins have also now started in on the fact that we are still, after months of perfectly timed intercourse, not pregnant.

"See Emily, there must be something wrong with you. Something not even the doctors can figure out. You are not like the other couples you know. You don't get pregnant easily. There is something wrong with you".

All the complications that led up to Aidan's death have become my "Exhibits". They have been entered into evidence and I have been convicted.

Of what I'm not sure.

I just wish I'd get a chance to appeal.

What fears does your dead baby prey upon?

Saturday, November 20, 2010

Dear Santa

My husband keeps bugging me to write a Christmas wish list. So here it is:

Dear Santa,

For this year I would like:

1. Aidan back, healthy and whole. I do not care how you accomplish this. If you need to turn back time, in the style of It's A Wonderful Life or One Magic Christmas, to late 2009 or early 2010 when his safe arrival was still possible, go ahead. It would also be okay with me if I awoke Christmas morning to find Aidan babbling away in the room that should have been his, or sitting in a bassinet under my tree wearing a tag that says "Love, Santa". Just as long as he comes back, I'm okay with however this is accomplished.

2. Okay, I realize the above is a tall order. Maybe too tall. So, if I cannot have Aidan back perhaps you could get me pregnant in time for Christmas. No, no, wait...uh...maybe you could have Brian get me pregnant in time for Christmas...yeah, sorry...kinda specific on that point. This, of course, should come with a guarantee that in 9 months we will have a healthy, take home, kind of baby.

3. Still too tall an order? Jeez...okay, well how about this...could you just use your omnipotent powers to figure out if we'll be able to conceive this next theoretical baby on our own, let say ooohhh I don't know, within the next 3-4 months? And if not, could you send me a really freaking obvious sign (my nose could light up like Rudolph's?) that we should funnel any and all Christmas funds into the pocket of my RE and see if she has better luck in the knocking me up department?

4. I know, I know, I'm getting greedy by this point...but seriously this last one's not for me. Could you help to put some Christmas cheer (that lasts all year!) in to the lives of my family. We're doing the best we can...but this year has been really hard on all of us. I really think my mom and my husband especially could use a little extra twinkle in their eyes.

Thank you.



Wait, what?

Santa doesn't do these kind of requests? He only does materialistic crap that is made foreign sweatshops? Stuff that no one has need for and could definitely do without? Stuff that will eventually end up in the garbage piles of the world?


I guess I'll just take a sweater then.

What are you asking for this Christmas?

Monday, November 15, 2010

Anthropology of Pregnancy

In university one of my favourite non-science courses was Women's History, specifically the course was called "Women in European History: Renaissance to the 20th Century". The professor for it was great. She made things interesting. I was actually sad one night when I had to miss a lecture due to illness.

What most people don't realize is that "History" as it's presented in most schools and media could be better termed "Men's History". Think about it. When you learn about history in school you learn about wars (soldiers were almost exclusively men), kings (men), country leaders (men) and policy makers (generally men). Now, granted there are often women and children in the periphery of these events. They may have looked after the wounded from the wars, and were often displaced geographically by battles. Women were married to kings and were expected to bear children for the succession, but were not really thought of as anything other than a means to secure a lineage. Country leaders and policy makers may have taken the concerns of women and children into consideration, but very few women until the last century or so were given any opportunity to direct these changes themselves.

In learning about 'history' (or men's history), you are learning about the BIG events in history. In learning about women's history you are learning about the 'every day' since women's lives WERE the every day.

While reading a bunch of babylost blogs the other day, I was thinking about how similar a lot of our experiences are. How most stories start with 'trying to get pregnant', then move on to the 'positive pregnancy test', 'first ultrasound', 'feeling the baby kick', 'preparing the baby's room' and so on and so forth. Some of us got further than others of course, but the experience of loss seems similar. The shock, the feeling of connection to the dead baby, the overwhelming sadness...

So I was wondering to myself "Do our stories and the feelings around them seem so similar because that's just how women FEEL when they are pregnant and/or lose a baby? Or, are these feelings and concerns so universal because I'm reading stories about English speaking women in a 21st century Western world?"

It got me thinking about women in centuries past (or in developing countries in the 21st century or hell, South Central LA without health insurance if you want to be really inclusive). What was/are their experience of pregnancy? And how did/do those experiences affect them when the baby died?

First of all, I just found out that the first home pregnancy test was invented in 1978! (Thanks Google) That's only as old as my husband! A good percentage of your mother's probably didn't even have the option to do one of these. So before 1978 there was no peeing on a stick, no running around the house squealing, waiting for your significant other to come through the door so you could figure out a 'special' way to tell him the good news. I can only imagine that prior to this, the realization that you were pregnant may have come more slowly. More along the lines of "Huh? I think my period is boobs have been a bit sore lately...hmmm...maybe I'm pregnant?" Someone who was smart and in tune with her body may have realized this quickly...but I bet lots didn't. Lots of woman may have brushed off a missed period due to malnutrition, stress, or for lack of having a calendar. Think of all the woman who may have miscarried and never have known they were pregnant. If you never saw two lines, or saw the ultrasound photo, what would your experience of loss be like?

Furthermore, ultrasound only started being used to view the fetus in the mid-1960s. Prior to that, the photographic evidence of children started at birth, not at the first (or second or third) ultrasound photo session. What would your experience of pregnancy and birth be like if you never 'saw' your child ahead of time? What if you lived at a time, or in a place, where you didn't really understand how human beings developed? What if you never got updates sent to your e-mail that started out "You're 6 weeks pregnant today. Your baby is starting to develop arm buds!" What if all you knew was that you felt nauseous and your boobs hurt, you were massively tired, but you still had to get up at dawn to feed the chickens, milk the cow, boil water, and then start to salt the meat and churn the butter that would help to last your family through the winter? Although, I'm sure women realized that babies develop in a 'small' to 'big' fashion(evidenced by expanding waistlines), I wonder how many of them realized that fetus' look like babies until they experienced a late miscarriage or premature birth? Would you have the same 'connection' to your child, if you didn't know it looked like a person yet?

Before pregnancy tests and ultrasounds the first time you would KNOW you were pregnant was when the baby kicked. For some women, this doesn't happen until close to 18-20 weeks. In anything other than modern times, you wouldn't know for sure you were pregnant until it was almost half way over. Think of how different your pregnancy experience would have been if it didn't really start until the mid-way point.

What would your experience of pregnancy or loss be like if you lived in a hunter-gather tribe in central Africa in 11,000 BCE? Or in a Mesopotamia under Alexander the Great? Or as a German woman at the time of the Reformation? Or as an Inuit at the end of the Little Ice Age? Or in 2010 if you lived in rural Brazil with no immediate access to medical care.

I wish I could read these people's blogs.

What do you think?

Friday, November 12, 2010

Normal, damn it!

So, encouraging news on the (in)fertility front.

1. Sonohysterogram performed this week findings: Normal cavity, patent tubes. No fibroids, polyps or adhesions.

2. SA (semen analysis): All parameters normal. Better than normal in most cases.

3. Bloodwork: Normal as far as I know (I'm basing this on my last day 3 bloodwork done back in September...where my prolactin level was 18.8. We redid it for the RE, but I have no reason to believe any of the results were abnormal since no one has called me).

I'm not exactly sure where to go from here. On the one hand, 'Great! We're normal'...too bad that doesn't equal PREGNANT. On the other hand, I almost wanted there to be SOMETHING just so that there would be something to fix! I'm tired of our reproductive history being such a head scratcher. Plus I still have no reason for the on-going spotting I'm having before each period. Do we proceed with (EXPENSIVE) IUI treatments when nothing in our history or results seems to warrant them? I know we technically got pregnant on our own the first time...but it took 8 months and was abnormal from the start. The RE said that if a normal healthy woman isn't pregnant in 3 to 6 months of properly timed intercourse then you've likely got a problem. But what that problem might be they seem to have few answers for.

I think I'll have to mull this over some more. I mean technically it's *only* been 3 months of 'properly timed' intercourse that have resulted in no pregnancy for us...but how long do we wait? And what, with medical intervention, are we trying to fix if all of our results are just fine?


Oh, and just for the extra added cherry on top today my husband got an e-mail from the friends that I referred back to in this post. They will be home from Singapore at Christmas for a visit the way...their baby is due the end of April (right around Aidan's first 'dirthday').

Super. Can't wait to see them.

How long did it take for you to get pregnant? Did it feel like forever at the time?

Wednesday, November 10, 2010

The Husband

Recently I've noticed that while I might be coping slightly *better* with Aidan's death, my husband seems to be having an increasingly rough time with it. I'm not sure exactly why this is. It could be due to many things. For example, since I now work evenings 4 days a week, my husband comes home from work, prepares his own dinner and then sits around by himself for a few hours before I get home. Moping around by yourself in the early darkness of fall is not the most uplifting thing in the world.

It could also be the often referred to idea that only one half of a partnership is *allowed* to fall apart at a time. I remember hearing this old adage when my friend's cousin died. Her parents were a mess for months and then as they started to 'feel better', their son started to have an increasingly difficult time with his sister's death. It's like he was just waiting to have his time to grieve when he knew his parents would be stronger to support him. If this is the case with my husband, I'm okay with it. I do feel stronger now. Strong enough to do more of the housework, more of the 'hey let's go out and do something fun today!' prodding, and strong enough to just let him mope if that's what he needs to do, without it totally consuming me. I'm sad still too...but I'm finding it easier to pick myself up after a day or two of wallowing and move on. If my husband is needing help with this right now, I can deal with that.

It could be that as we wade back into the 'trying for another baby' drama, (up to and possibly including medical assistance) Brian is finding it difficult to face another pregnancy. Aidan's pregnancy was HARD on my poor hubby. Possibly harder on him than me. While I was the one laying on the bathroom floor bleeding, he was the one who had to stand by, watch and worry. He was the one who had to rush me to Emerg multiple times. He was the one who had to continue cooking, cleaning, shopping and generally 'keeping it together' while working 45+ hours a week. All while also worrying about what was going on with me and the baby at home. It would not be unreasonable to think that he might have a little Post Traumatic Stress after dealing with that for months.

I do feel lucky that my husband confides in me and tells me what he's feeling for the most part. We know each other well enough that I can instantly tell just by the way he moves or the tone of his voice if he's sad or not, so he can't really fool me. Plus, Brian pretty much blocks out his family or friends regarding anything that's bothering if he's going to talk, I'm it. He's not always forth coming with me, but he will admit when he's had a rough day and will sometimes admit what triggered it. I know a lot of men out there won't share this with anyone. I'm not sure why, or what methods someone could use to draw this out. I wonder if counsellors stock up on brain teasers or other mental puzzles to keep themselves occupied during those initial sessions with a grieving man. I'm pretty sure those 'talks' must be pretty damn quiet.

I wish I could make things easier for him. I wish I could promise him that things will be better in the future. I wish I could make it so he didn't have to hurt. But I can't. I just have to wait until easier, better and less painful arrive.

We'll just have to hold hands and wait together.

How do you hold each other up? Is it working? Do you find it difficult to be what your partner needs?

Sunday, November 7, 2010

Remember, Remember, The Eighth of November

Tomorrow is the 8th of November. Besides being the day after my dad's birthday (Happy Birthday Dad)...the 8th of November 2010 is exactly one year from my LMP with Aidan. This is the date that the medical professional is referring to when he or she asks "so when was your last menstrual period" during those early pregnancy appointments. It's the date that is usually used to calculate your due date (assuming you have a 28 day cycle and ovulate on day 14...) My due date was special to me because it was my deceased grandmother's birthday (August 15th) and although I knew Aidan wouldn't likely arrive on that was nice having that little extra specialness attached to the date he was SUPPOSED to be here.

So, as we hit November 8th and approach the holiday season I know I will now start the dreaded comparison of 2009 to 2010. You know "last year at this time..."

I hate that I'm not pregnant by this date. I really wanted to be. I really wanted something else to focus on rather than the heartbreaking comparisons between 2009 and 2010. Comparisons are the bane of my existence right now and I'm trying so hard not to focus on them...but it's hard not to. Comparing my life with the lives of our friends who have children (their lives seem like way more fun). Comparing our lives with the lives we had last year (still in the same place, double income, no kids). Comparing the amount of time we've been TTC with the amount of time other people have been TTC (often way, way longer).

This weekend was a pretty down one for both my husband and I. I'm starting to notice the sadness affecting my husband more. I think he's starting to do more of the 'comparison' between ourselves and others. When we first lost Aidan, and I would gripe about seeing babies and small children all around us he would say "It doesn't bother me. Those babies aren't Aidan. I miss our baby and those babies aren't ours". As much as I could see his point...seeing those babies bothered me. Now, seeing babies is starting to bother him as much or more than it bothers me. He was a little upset last weekend when our friend came by to show off her 9 month old daughter in her costume. He seemed more down after hearing from his friend who told him they have joined the Y to take their baby swimming in the kiddie pool. Brian said to me this weekend "it's just that it's been awhile now and nothing has changed".

I get exactly what he means. It has been awhile and it does feel sometimes like we are stuck in the same mire we've been in since April, while everyone else is speeding on ahead. We are tired of the mire...can we just get on to something ELSE already? Something hopefully involving a positive pregnancy test and a healthy (living, born at the appropriate gestational age) baby? I mean, I know another baby will not make us any less sad about Aidan's death...but it would help us to feel less like failures, more like we belong and heal our hearts a little. Is that too much to ask?

Of course when I start feeling like "Damn we're in the exact same place as we were last year. Life has lost all forward momentum." I have to remind myself that No, actually lots of things have changed. We have moved this year. We moved to places we didn't necessarily want to go...but we are not the same people we were last year on November 8th. I had my first pregnancy this year. For the first time we saw our little baby kick and squirm on the ultrasound images. We fell in love with him. We went through hell knowing that we were likely going to lose this precious little being. We had to make serious medical choices that nobody should ever have to make. I birthed my child. My husband held his first baby. We had to cremate him and decide what to do with his urn. We have spent time creating a legacy for him through pictures, music, this blog, my necklace and trying to incorporate his name and his memory into our lives. We bought a treadmill and both of us have become better at running. My husband lost almost 25 lbs and has committed to a healthier lifestyle. We spent more time at the cottage this year than we have in many years. We've spent more time together this year, and have learned how strong we are. I got a new job where I'm learning things I never thought I'd know. We've both met and come to like new colleagues. We have needed and received the support of our families and friends. We are committed to doing whatever we can to ensure the eventual being and health of our next child.

I have to keep reminding myself, it's actually been a very big year.

One that was, probably the saddest and most heartbreaking of my life, but that I wouldn't trade for the world.

Do you find yourself stuck in the mire and questioning life's forward momentum? What do you do to pull yourself out and to keep putting one foot in front of the other?

Wednesday, November 3, 2010

I (use to) love babies

I (use to) love babies. I mean really love them. I was never one of those people who would oooo and ahhh over them like your annoying aunt who pinches cheeks and exclaims "isn't she just the most PRECIOUS thing!!!" (Which I actually find embarassing and irritating and kind of demeaning to the baby. Can you tell I'm not a gusher?) But, I was interested in babies and children in a way I wasn't interested in a lot of other things.

This interest goes back many many years. At age 12 I was signing books out at the library about pregnancy and early child rearing. I was interested in how babies develop in the womb, the changes a woman's body undergoes during pregnancy and facinated by the birth process. I wanted to learn about how parents begin to respond to invidividual baby cues, when babies can be expected to reach certain milestones, and how important early bonding with a parental figure is. I learned all about stretch marks, lochia, and breastfeeding years before I even hit high school.

In grade 8 I was so excited to take infant and child CPR lessons as part of my babysitting course. I fell in love with the children I babysat, took very good care of them and developed a really good relationship. I miss those kids to this day and wonder if they ever think of me. I took a course in high school on infant and child development. In university I started reading the paper and was always interested in news articles that concerned babies and young children. Whether it was reports about new research into autism, the 'back to sleep' campaign or the best diet for children, I read it. My absolute favourite course in university (and my highest mark) was in Embrology...the study of the developing embryo into a fetus.

As you can imagine, it was no accident that I became an NICU nurse. I did not go to nursing school to become a nurse...I went to nursing school to become an NICU nurse. Pediatrics would have been my second choice.

And's all gone.

I no longer really care to read the articles in the paper about childhood obesity or what the hottest toys will be this holiday season. I no longer want to hear all about your 5 year old's ballet classes, or your 1o year old's struggle with homework. I especially do not want to hear about your granddaughter's pregnancy and how she is suffering with nausea into her 5th month. I whiz past the baby clothes at the mall. I don't make funny faces to entertain the little girl on the subway anymore. I only glance at the pregnancy and early childhood development books in the bookstore and at the library. They used to be so interesting and contain so much that I wanted to, I just want to avoid it all.

I can fake it for work...and when I'm in the moment, I do enjoy the kids. They are funny and cute, and most are very smart...but somehow (and this sounds awful) it makes it easier that they are sick. I'm not sure I could take being around healthy normal children all day long.

It's sad. A huge part of my personality and interest was babies and children. It's what I built my career on. Now I just generally just wish to avoid them as much as possible. Not because they no longer interest me...but because they remind me of what I have lost, and what I'm afraid I will never have.

Have any of your interests changed in the wake of your loss? Does this surprise you?

Sunday, October 31, 2010

Oh October!

Oh October...I had such plans for you.

These 'plans' hark back to February when we thought "things might be okay" with our little baby. At the time, I knew the baby would be early and was likely to be born in July due to my heart condition...I had hoped no earlier than mid-July-ish (HA!). I thought we might spend the rest of the summer and maybe into September getting used to middle of the night feedings, possible colic, lack of sleep, and recovering my strength after giving birth.

But I had plans for October. By October I thought, I should be feeling more myself. I should be used to breastfeeding. The baby will hopefully be into a routine and might even be sleeping better by then.

October was going to be our month. Our month to take long stroller rides through the falling leaves. To visit Brian's family out of town and introduce them all to the new baby. To take pictures at the apple orchard and the pumpkin patch, surrounded by all the other families with kids. To shop at ridiculously high priced farmers markets with my baby sleeping in a sling. To have Thanksgiving and my Birthday all rolled into one day of happiness and family and love. To dress my baby in a ridiculously cute costume to enhance his (or her, in February I didn't know Aidan was a he) already legendary cuteness.

God damn it...I want that October back.

I want my baby back.

I miss you little pumpkin. Know that I had plans for you. Wish we could be together, enjoying them.

Thursday, October 28, 2010


I had my first visit with the RE yesterday (RE=reproductive endocrinologist for all of you out there who have not needed help getting knocked up).

It was...somewhat better than I expected, but still kind of a disturbing experience.

I arrived at the building almost half an hour early. I went by myself since Brian didn't want to take a day off work just to go to a consult appointment. I was okay with this...but still it would have been nice to have some company.

So, I get off the elevator and walk up to the check-in desk and immediately my Canadian nursing brain is thinking "so this is what paying for your medical care looks like". Things are all white and chrome and leather and glass and expensive looking. Humm.... I'm a staunch supporter of publicly supported medical care so my inner voice is balking at all this extravagance. But whatever...I'm here to get pregnant and at this point I would mortgage my soul to have a healthy baby, so I suck it up and get on with it.

So, I find myself sitting in their waiting room on one of their (completely unnecessary) posh leather couches (which aren't nearly as comfortable as their price tag would appear), and as I look around at the other patients I'm having a few thoughts.

Thought # 1) Wow...I must be the youngest person here by a good 7 or 8 years...I feel so out of place and my grubby work running shoes aren't helping.

Thought #2) I wonder if any of these people have a dead baby (or two or three) in their past?

Thought # 3) Huh...all of these people are having trouble getting what they want out of sex. How sad.

Thought #4) All of these people are paying to have children...something so many other people do for FREE...damn this world is unfair....

Thought # 5) What's the protocol in these waiting rooms? Is striking up a conversation with someone else while waiting a No-No? "So...why are you here? Oh your husband has a sperm count just shy of zero and your eggs are aging by the nice...want to see pictures of my dead son? He was my first and only fertility failure so far. Nice weather we've been having, isn't it?"

And then my name was called...

The appointment itself was pretty standard. The fellow (the doctor in training who does all the grunt work of interviewing the patient and taking the medical history) goes over all my gynecological history (yawn) and fertility history (action packed, with a side of drama and gore). She was REALLY compassionate and nice about my poor little dead Aidan which I was extremely grateful for. I was easily able to answer all the questions she asked (probably in more detail than she wanted), since I'm kind of anal retentive about my health that way (yes the first time the subchorionic hemorrhage was discovered it measured 2.1cm x 1.7cm x 0.9cm...would you care for a diagram?)

Then she states that based on my medical history she doesn't see us having any problems getting pregnant again, and if we want to do so quickly she would be happy to offer us IUI (Intrauterine insemination, AKA artificial insemination) anytime we want (to the tune of $675 a pop!). She discounts all of the spotting that I have prior to my periods and says that "oh, we don't usually worry about spotting" (I think I will bring this up again at my next appointment because it's what REALLY REALLY concerns me). Any this point we are going to run some tests and get blood work from me and hubby and proceed from there. If things come back normal, we'll try on our own for awhile. If they come back wonky then we'll have to re-evaluate. One of those tests will be the Sonohysterogram for me (yeah! Pictures of my insides...can I get one framed??!) and the ole' sperm in a jar for the hubby (his test sounds like a hell of a lot more fun...mine involves antibiotics and Advil).

But...on the serious side...the RE did tell me that she doesn't think any added Progesterone would have saved Aidan. On the one hand, I REALLY REALLY want to believe this. It would mean that I couldn't have done anything different, it was a fluke, a terrible tragedy that no one could have for seen. His placenta was defective, causing bleeding, causing pPROM, causing lack of lung development, causing death. The end. On the other hand, I wish there was something new and different that could be added 'the next time'. I'm so terrified that there is something wrong with me that will screw up the next baby attempt.

Her parting words to me were "We'll get these tests done, and then we'll get you pregnant".

Thought # 1) Ha! I bet you say that to all the girls. I'll believe it when I see it, thanks.

Thought # 2) Um...I'd really prefer that my husband get me pregnant...but thanks for the offer.

Thought # 3) Great...but what I really want is a baby. Pregnant is only the first step in a long, long process. *Sigh*.

Oh, Aidan...if only you were would be so different.

Have you had to consider (or tried) medical intervention to get pregnant? Is it as uphill as it looks from the start? Did it make you feel hopeful or depressed? Is it weird that it's making me feel like more of a failure?

Tuesday, October 26, 2010

Reflecting on dead baby math

Um (peaks around the corner), hi...


I'm at 25 comments and counting on my last post.

Apparently dead baby math evokes some strong feelings in people since it's my highest commented post ever (by a lot).

Thanks for not flaming me.

By my previous post I did not at all mean to imply that if you have older children or have subsequent children, that somehow the dead baby is rendered irrelevant. He or she is never irrelevant. Ever. No matter what. I think I will struggle with this within my only family when (if?) Brian and I ever have another child. I think our families will be so 'thrilled!' and 'stoked!' to find out we are pregnant again, that they will want to seem overly positive. We will likely get comments to the tune of "this one is going to turn out okay, I can just feel it" or "see, I knew it would happen for you!" or some other irritatingly cheerful bullshit. I will nod and smile, because really, I hope those things too.

But inside I will be FUMING for Aidan. The next baby is just that...the NEXT is not an Aidan replacement. Another child does not make his loss "okay"...but it would make us parents, and not *just* a (babylost) Mom and Dad.

If I cannot have Aidan I will be eternally grateful for any subsequent living healthy children, but it will not mean I miss him any less.

My anger and resentment to those who have other children or an easy time getting pregnant is completely a reflection of where I'm at right now. As we are nearing Halloween and cute costumed baby and child pictures are cropping up, I wonder if I will ever get to do that with my child. As pregnancy after pregnancy, after healthy baby delivery gets announced at work, within my family, on facebook, in the media, and between friends...I ache to know that feels like...even if it can't be with Aidan. I want to be a participant and not just a spectator.

We are nearing the end of cycle 5 after Aidan and while my boobs are slightly sore and I *might* have had a slight twinge of nausea...I find it trying to keep up the constant hope that "maybe this cycle will be it!" and expect to get a healthy baby in 9 months. Having had no experience with a healthy, normal pregnancy I flash to miscarriages, pPROM, prolapsed cords, genetic defects, asphyxiated deliveries and all the other multiple horrors that can occur. To actually get a healthy, living baby seems like the miracle, not the norm.

I just wish my dead baby math stood at zero.

Saturday, October 23, 2010

Dead baby math

Okay, I hope people don't hate me for this post.

As much as I love connecting with other babylost moms on the internet, (and don't for one moment take this post to mean I don't want to hear from you), sometimes hearing all those stories of death and sadness...well it just gets me down. I'm also starting to really get upset at myself for a reaction that I have to each and every story...

My reaction after reading about each baby death now seems to include a rating system. The story is either "worse than mine", "better than mine" or "about equal". In math terms this looks like ">", "<" or "=".

I KNOW! I KNOW! No baby death, no matter how early, no matter how many living healthy children you have, is any less sad. All are equally loved and wanted and it's always tragic no matter what. My heart knows this...but my brain still wants to assign <,> or = to each one.

I feel weighed down by the story of the mom who has had multiple miscarriages and one still birth. I mean really? No one deserves that kind of pain. How the hell does she get up every morning? I feel so much sadness and empathy for this family whose heart has been broken over and over...but mostly I'm terrified that my life could become hers. One baby death is enough for a lifetime...I'm literally crushed under the thought of more. The losses this type of woman has faced always rates a > sign in my dead baby math.

More losses + more heartbreak spaced out over many years > than my one loss.

But then I read the story of the mom who has two living healthy children, then has a miscarriage at 6 weeks, then goes on to have another healthy pregnancy 3 months later. And I hate that I do this, but the whole time she's pouring out her pain into cyberspace I'm thinking "I would trade places with you in an instant".

Early loss + living healthy children + healthy subsequent pregnancy < my loss.

Other types of losses that are similar to mine, either gestationally, or because the person took awhile to get pregnant and is afraid another one won't come along, or because it was their first child tend to get an = sign. These are the mommies I generally feel closest to.

So, there you have it. Am I complete and utter bitch? Is my dead baby rating system a sign that I'm really starting to lose it? Do other people do this?

Do other people do this?

Thursday, October 21, 2010

6 months and a sliver of hope

Today is 6 months since Aidan left my body and died 54 minutes later in my husband's arms.

Half a year.

Sometimes it feels so long ago...other times it feels like yesterday. I was going to try to finish off Aidan's birth story in honour of his 6 months 'dirthday'...but I just have been too sad lately. It will take a lot of effort to write down what those last few weeks with Aidan were like. They were so full of anxiety, fear and sadness, mixed with the knowledge that every day was one day closer to the possiblity that he *might* be okay. If he stayed in long enough...if we could just keep hanging on. If I just lay still enough, drank enough water and didn't do anything to upset this razor thin balance we were on, maybe I could keep him in long enough. Maybe long enough for a miracle to occur.

It didn't.

I'll get to that story, one day soon. I promise. I need a good few hours to sit down and write it all out.

But here, on October 21st, a teeny tiny stroke of good luck did ocur. I finally got the call to schedule my RE appointment. AND...even better, my appointment is only 6 days away!!!

I was afraid they were going to say something like "oh, we're booking into next year..." but the doctor happened to have a few extra slots for next week and someone must have picked me to get one (possibly the words DEAD BABY on my chart DID help me in this one instance). My appointment is for October 27th. Coincidentally, it will also be the earliest day that I could possible test to see if I'm pregnant already. I'm not holding out much hope of that (too good to be true)...but I suppose anything is possible. (Well...not anything...but you know what I mean).

Anyway, let's hope things go well. Let's hope Dr. Wonderful has some miraculous strokes of intuition into our problem. Let's hope she's positive and says good things about our chances for another (healthy) baby. Let's hope whatever treatment she thinks we might need isn't too terribly costly. Let's hope she doesn't make me feel bad about coming to see her well short of the one year of TTC that all REs seem to hold to. Let's just keep up hope shall we.

6 months later and we're still trying to keep hope alive.

How are you keeping hope alive? Does it elude you often? What makes you feel hopeful?

Sunday, October 17, 2010

Half a Miracle

The unit that I am working on is a day procedure unit. I'm sure I've mentioned this before. Basically we function as a souped up doctor's office where kids (ages 0-18) come for procedures, treatments, IV medications, blood work and/or to be seen by the service they are covered under in the hospital (GI, Neurology, Rheumatology, Immunology, etc. etc.)

It covers a lot of areas of medicine I'm completely unfamiliar with. I could tell you all about premature baby physiology, how to care for a pre-op gastroschisis patient or how to set up for a nurse to insert a PICC line, but none of that is useful where I'm working. At times, it's frustrating to be so out of my element. On the other hand, I'm learning and seeing new things.

One of the more interesting patient populations that come to our unit is those who have had, or who might need, transplants. I think the general population has the idea that once someone receives a transplant then *poof* you are cured, and can get back to being 'healthy'. In reality, transplant patients have just traded one fatal condition for another condition that must be managed for the rest of their lives. Don't get me wrong, these patients are very grateful and happy about their new organs. One nurse I work with told me transplant patients often consider themselves to have two 'birthdays'. Their actual one, and the day they got their transplant.

But things don't always work out with the new organ. Sometimes, even with good matching and all the drug therapy available, the newly transplanted organs fail to work in the 'host' body and get rejected. I met one 8 month old baby the other day who has had not one, but TWO liver transplants. The first organ failed within a week and she ended up getting another organ which 'took'. She is really cute and looks almost completely normal. Probably most amazingly of all, I met a family the other day whose son has received a bowel, liver AND kidney transplant. That's most of his major organs. It kind of boggles the mind.

However, the follow up care for these patients is no joke. These patients will be medicated daily for life with anti-rejection drugs. In our unit we also often give these kids an IV infusion of immunoglobulin which helps to block the patient's own immune response to the new organ. All this immune suppressing can of course be a issue with the patient trying to fight off the pesky flus, colds and other bugs that our bodies deal with on a daily basis. It can also have other major consequences, such as the patient developing cancer. That's right, cancer. Cancer is an overgrowth of abnormal cells within the body, and the immune system plays a role in preventing their growth. Suppress the immune system and you've just upped your cancer risk. We have kids in the hospital who have died, not from the disease that was originally killing them that required them to get a new organ...but from the cancer that they got post-transplant from taking all the immune suppressing drugs that were keeping them from rejecting that lovely new organ.

Seems completely unfair doesn't it?

I've always been somewhat interested in transplant patients, not because I think they are medically interesting (although they are)...but because someday I'm afraid I'll need to be one. Although my heart is coping well, and has been since my 'major' surgery at the age of 6...I'm always afraid one day it will stop doing what I ask of it. Now my parents, my family, even my doctors have never really wanted to play the 'what if' game with me when it comes to my heart. I've always felt they have stuck with the opinion of 'you're doing really well right now...why worry about it?' (HAHAHAHA...have you MET ME??!! I am a WORLD CLASS worrier.)

Still. I do worry. Every day. It's always at the back of my mind. One time I tried to explain it to my husband. I told him it's like this:

Every day when I get off the subway at my stop there are two large flights of stairs that I have to climb. Probably about 50 stairs in total. Every time I'm at the bottom and look up, the thought goes through my head what if this is the time that I can't make it to the top without stopping to catch my breath? I think it every time. It's not even a clear thought anymore after all these years. It's just a single small stab of dread. And then I climb the stairs and continue on with my day. But I know, if the day comes when I cannot climb those stairs without stopping, then it's the beginning of the end for my heart. And what comes after, I do not know.

This all sounds incredibly ominous...but that's what it is to live with an organ that is not 'perfect'. I cannot escape that fact.

This all brings me to the real point of my story.

Last week, I was looking after a little girl who needed IV antibiotics for a fairly minor infection. Something any kid could end up with...but this girl wasn't a regular kid. She has, what probably I, and most cardiologist would agree, is the 'worst' kind of heart condition. Hypoplastic Left Heart Syndrome (HLHS). It is basically the mirror image of what my heart defect is. I am missing the right ventricle of the heart...she is missing the left. The left ventricle being 'more important' because it's the pump that circulates blood to your body, while the right is responsible for pumping the blood to your lungs. Surgeons have constructed my heart so that the blood is pumped all the way around my body AND to my lungs by only my single left ventricle. This, obviously for me works well. For a person who has to rely on the inherently weaker right ventricle to do the same job,'s a less than completely satisfactory situation.

I have been told by my former NICU veteran colleagues that if I had been born in the same year that I was, (1982) with HLHS...the doctors would have had a completely different plan for me. Their plan would have been no plan at all. They would have handed me back to my parents and said "take her home and enjoy her for as long as she lasts". There was no saving HLHS patients back in 1982.

So, to see this little girl running down the hallway the other day was pretty amazing. She was not however, completely 'well' looking. Her lips were blue-ish and her fingers were clubbed (a deformity of the fingers often associated with low oxygen saturation). For pictures see here. She has been admitted to hospital for issues in the past, and I'm sure she will be again.

She was however, smart, cute, funny and in school. She was as totally 'normal' as you could get while missing half a heart.

This (along with pretty much everything else these days), makes me think of Aidan. Before I got pregnant, I knew that due my own heart defect, my child has a slightly higher risk of having a heart defect too. The generally population averages about 1-2% of having a child with a heart defect. I, apparently have a 3-5%. The defect my child may have would not necessarily be the same as mine.

I remember thinking...okay, I could deal with that...just as long as it's not HLHS. Honestly, I'm not sure I would have continued with a pregnancy if it meant having a child with HLHS. Not because I wouldn't want to care for a child with that defect, or would be afraid of losing them due to it (which of course I would be)...but because I would not want them to have to cope with seeing that set of stairs and knowing they will not be able to climb it without stopping.

But seeing that little girl the other day made me think. She is happy, laughing, playing, goes to school, is loved by her family...but one day may face her heart wearing out, and a transplant, and maybe rejection of the organ or possible cancer related to the drugs...and the constant knowledge and fear that she will not make it to old age, or to having kids, or to graduating university, or to have a boyfriend (or girlfriend), and may never live away from home.

But my son, with his perfect heart, died. And she, with her damaged heart, runs down the hallway yelling 'Daddy, Mommy, watch me!'

It's like watching half a miracle.

Have you, or someone you are close to, ever coped with a 'life limiting' disease? How has it shaped your perceptions? Does modern medicine ever feel to you like 'half a miracle', where some are saved, but at what cost?

Friday, October 15, 2010


It's October 15th. Pregnancy and Infant Loss Awareness Day. Coincidentally my due date was 2 months ago, exactly.

I went back to my August 2010 mommies board today, just to see what life 'could have been' like. They are all posting about not sleeping, breastfeeding, cloth diapering vs. disposables, etc etc. I fell off the wagon when it was back at the "What are you having?? and "How many kicks are you feeling each day?" postings. It feels like a lifetime ago.

Things have diverged so much from what we had hoped. It is hard to even imagine what life would have been like had Aidan lived. What would his room look like? Right now it's almost completely empty. How much sleep would I be getting? Last night I slept for 7 hours straight. What size clothes would I be in? Currently still fit in the same size I've been for years. Most wistfully of all...w
hat would Aidan feel like in my arms?

I can only imagine it would feel like heaven.

I miss you my baby boy. I don't need a special day to remember you. You are with me always.

How are you 'celebrating' today?

Tuesday, October 12, 2010

Birthday present for myself

This is what I got myself for my birthday. Thanks to Dreaming Tree Creations.

Have you bought anything to carry with you that reminds you of your dead baby? Have others commented? What do you tell them about this special token?

Monday, October 11, 2010


It's after midnight. It's October 11th. I'm offically 28 years old, although I actually didn't slide through the birth canal until 12:35am.

It's also Thanksgiving here in Canada. For all you Americans out there, Canadian Thanksgiving falls on the 2nd Monday of October. I was actually born on Thanksgiving day (Monday) in 1982. So this year, my birthday being a Monday falls on Thanksgiving day.

I wish I felt more thankful this year.

I wish I had my beautiful, healthy, alive, 2 month old son to be thankful for.

I wish I wasn't so sad.

I wish, I wish, I wish...

Tuesday, October 5, 2010

Just holding on

Nothing new happening around here. Still not pregnant. Still waiting for the hopefully fruitful RE consult. (Where we get to discuss Aidan and his tragic circumstances with yet a new set of doctors...oh joy!). The date for this appointment is still not set.

But, in the meantime, I'm starting to feel more beaten. More broken. More sad. More hopeless.

When I think about all that my husband and I have had to live through in the last year and a half, I cry. I cry for us. I want to pat myself and my husband on the head and whisper "oh you poor, poor dears" like some old English granny. Really, I cannot quite convey how really awful it's been.

April 2009 until now looked like this: Stressing about getting pregnant. Taking longer than anticipated to get pregnant. Dealing with abnormal test results on both our parts. Then pregnant. Then possibly miscarrying. Then seeing a heartbeat. Then blood, blood and more blood. Then reassurances that things will be okay. Then bed rest and off work, and financial stress from that. Then bad news. Then really bad news. Then trying to hold on to hope for our baby. Then just living day to day, knowing it wouldn't end well. Then Aidan dies and it's all darkness and pain and sadness for weeks and months... Then feeling like I'm stuck back at the beginning of this paragraph all over again.

I'm sad that life has not been easy for us in the last year and a half. I know we have life a thousand times better than most people. I know that. I am grateful for that. But, that does not take away from the pain of knowing we have it a thousand times worse than others.

I try to be one of those "happiness is what you make it" kind of people. I do my best to adhere to the policy of "when life hands you lemons, make lemon aid"...but honestly, I'm too tired, too broken to do it right now. I don't want to make anything good out of this devastation. I don't want to have to work hard to overcome anything. I would trade all the life lessons in the world for my son back.

I just would like something GOOD to happen, you know? Something easy and wonderful. I'm tired. I'm tired of trying to hold it together, trying to keep my focus on the future. When things will be 'better'. I want 'better' to be be right now.

Just wake me when it's over.

How do you hold on to hope? What keeps you getting out of bed each day? Is it working?