Tuesday, September 28, 2010

I'm normal...but not really

So I went to my family's doctors last Friday. I got half of what I wanted.

First I found out my prolactin level drawn on July 21st was 27. This is only slightly above normal. Normal is anything less than 20. However, I told my doctor that since having my level drawn in July I've started spotting again before my period. She said that "yes, anything above 20, I would expect your cycle to be thrown off". But I reminded her that as of September-ish of last year my prolactin levels were normal, and I continued to have spotting prior to the period I had before I got pregnant with Aidan. She didn't seem to have an answer for that.

She then told me that we couldn't sort out my progesterone issue until my prolactin issue was under control. Okay. So we decided to repeat my bloodwork. I full expected it to be abnormal.

My bloodwork showed my prolactin is 18.8. Officially normal.

So, it is not the reason for the spotting. My doctor doesn't seem to think the spotting is that much of a concern. She informed me that there is no real evidence to support putting women on progesterone therapy to lengthen luteal phases. She ushered me out of her office basically saying that I'm a mystery and she has no treatment options for me. She did not put me on progesterone therapy like I wanted.

The only good news is that she agreed to my request for a referral to a reproductive endocrinologist.

Now, I'm at a loss as to what to do until then. I feel like I'm in the black hole of 'diagnosis unknown'.

I'm TERRIFIED that if we somehow wind up pregnant while not on any hormonal support, or monitoring, we'll lose the pregnancy due to placenta issues. On the other hand I have no idea how long it will be before we get into see the RE, how long it will be before they determine 'what is wrong with us...if anything' or, worst of all, if the RE looks at us and says "Why are you bothering me with your case? You are obviously fertile. What happened to your son was just bad luck...call me back in a year if you haven't gotten pregnant by then".

It would also KILL me not to try...because a baby is what I want more than anything else in the world...and you obviously don't get one without trying!

My family doctor will do no more. The placenta specialist chalked Aidan's death up to bad luck and a 'possible hormonal imbalance'...but since my periods returned on a 'almost perfect' 26 day schedule I must therefore be 'cured'. If the RE says our problems aren't 'important' enough then...WHAT THE FUCK DO WE DO?

We might be too fertile for the RE. Too infertile for the OB. And no longer the problem of my family doctor.

I cried after each appointment. I'm so ANGRY that I'm doing this again. So disappointed and sad that instead of a 6 week old, I have a baby that's been dead 5 months. So afraid we aren't going to get another chance, or that my body is going to fail me and my child again. I just want people to take me seriously. Take my son's death seriously. Agree with me that it's important that it doesn't happen again. Agree to help me.

Agree to care.

What were the medical practitioners attitudes like after your child died? Did they seem caring and willing to investigate? Did you get the answers you wanted/needed? Did it help?

Sunday, September 26, 2010

Real Life Proof

I just finished a book called "After You" by Julie Buxbaum. I picked up the book knowing it was about a woman whose best friend dies. The female protagonist decides to leave her husband and fly across the ocean to help her best friend's child and husband come to terms with her friend's sudden and violent death. I picked up the book thinking it had to do with loss and since that's something I can relate to, it was sure to be a satisfying read.

However, a short ways into the book you find out that the reason it was so easy for the protagonist to leave her husband, fly across the ocean, and spend weeks sorting out the life of her dead best friend is because the protagonist and her husband have been slowing growing apart for over two years. Ever since their son was stillborn.

Damn, that dead baby radar of mine just keeps kicking in. I pick out a random book at Chapters and whatda ya know...it features a dead baby.

It did end up being a pretty good book. Along the lines of Jodi Picoult if you like that kind of novel. It had some very accurate thoughts regarding babylostness. However, if you really want to read it for yourself and want to be surprised at the ending please stop reading now.



Still with me? Okay, so part way through the book, the protagonist's husband flies overseas to visit her and tell her that since she hasn't returned home, and seems uninterested in continuing her marriage, he is filing for divorce. Since the death of the baby they've grown apart, blah blah blah etc. They are both sad and hurt, too much has been said or not said on either side. But, of course they go for that one last night of pity sex. The break-up sex that precedes the break-up. If you have any imagination at all, I bet you can guess what the results of that one random night of sex are...yup. A baby.

Of course.

So, I finish up with "After You" and download another book to my kindle. It's called "Sarah's Key". It's about the Holocaust...another depressing read. Death, death and more death...not a birth in site. Perfect. So the book flips back and forwards in time, partially following a young Jewish girl named Sarah in 1942, and then jumping forward to 'nowish' when a 45 year old female journalist is tracking down the details of Sarah's life. Then, all of a sudden, just like that, the 45 year old journalist is PREGNANT. A whoopsie, pregnancy to boot after she has had multiple miscarriages in her life. AND, just to cap it off, the 45 year old journalist has a sudden gush of blood at 8 weeks and is afraid she is miscarrying. It turns out NOPE, her baby is just fine after some BED REST!!!!

Did I happen to mention she was 45? And had a history of recurrent miscarriages? And experiences a giant gush of blood where she passes out and thinks she's miscarrying and THEN EVERYTHING IS FINE!!!! Oh and just to spoil the ending, no the baby doesn't have any genetic or birth defects...even though her mother is 45.

Did I miss something? Did I just not notice before Aidan that all books feature a miraculous pregnancy? I guess I should read The Bible next...(HAHAHA).

These are works of fiction of course...but seriously? Do they have to read so damn FICTIONALLY. In the real world (my world actually), the baby dies and despite trying for months afterwards, timing intercourse *just right*, the protagonist does not get pregnant. The dead baby does not magically lead to a healthy pregnancy where the couple have to face their fears, and move past it to welcome a new life in to the family. In my world the bloody gush in the 1st trimester is only a foreshadowing of things to come. It does not turn out fine. There are no rushes to the hospital where things are deemed 'okay'. Best rest is only ever just that...lost of rest. The baby still dies.

Why, oh why, is there the universally held notion in any book, movie, tv show or discussion about sex (especially with under age teenagers), that one random night of sex automatically leads to a pregnancy, and thus of course, a baby. And that 45 year olds get knocked up and have children with no genetic abnormalities after a life time history of recurrent miscarriages. I know, I know, these books are suppose to leave you with the warm fuzzy notion that "miracles do happen" and the "circle of life continues"...but I'd like to see some real life proof please.

My real life proof, to be specific.

Are you tired of reading/seeing/hearing about other people's miracles? Even fictional ones? What do you think of when you read these? Hope for the future? Or bitterness for the past?

Tuesday, September 21, 2010

The way things are

Today is 5 months since Aidan died.

Recently I was thinking back to those first few days after Wednesday, April 21st 2010. My husband and I went to visit the high-risk pregnancy psychiatrist in the week immediately following. I had already seen this woman once during my pregnancy after we found out things were likely not going to be okay. She was nice, she listened...but I haven't been back to see her since. This blog has been better therapy than anything I could say in 45 minutes or less in an office appointment once or twice a month, and I honestly haven't really felt the need.

But, one thing the psychiatrist said at that appointment has been rattling around in my brain the last few days. As I sat in her office, next to my husband, holding the box of tissues on my lap and cried about how hard things were going to be over the next while, she responded with "well, it might not always be that way. The way things are now is not how things may be next year". At the time, this statement really helped me. I've felt pain and loss and grief before (though perhaps not to the same extent), and I know from those experiences that she was right. The pain of loss does lessen over time. I did smile again after those losses. New and wonderful things did happen. Life went on...and I was okay.

I clung to that statement in the first few days and weeks after Aidan's death. Life will get better. It will. It will not always be this way. Good things will happen. They always do. You just have to keep putting one foot in front of the other. Keep going. Deep breaths.

Now that I am 5 months out, I realize that she was only half right.

Things will move on. Things will change. Life can be good again.

But he will always be dead.

She didn't, of course, mean that statement in a literal sense. Of course she meant that our lives wouldn't always be so broken. We both knew Aidan wasn't coming back. But I clung to her statement because it promised hope. Not for Aidan, of course, but for the future. I was reaching for anything at the time that would keep me focused, keep me from drowning. Her statement soothed me.

I did not yet understand the reality of having to cope with his death. Every. Day. Forever. I did not yet understand that while yes, things do get 'easier' and life does 'move on', I still have figure out how to live without him. Always. I did not yet know what it would be like to get up each day and live, surrounded by his 'not coming back-ness'. Did not understand how his death would seep into everything I do. That it would become just one more fact about me, about my marriage, about my family. Did not yet realize that every day would be just one more day since the last time I held him. One more day without him. That life can, and will, go on, and he will still be dead. Elizabeth McCracken said it best when she wrote "death goes on too".

Even when I laugh. Work out. Watch movies. Eat. Pee. Take out the garbage. Stand in line. Work. Make love. Stare at the sky.

I Live.

He does not.

How long did it take for you to wrap your head around the 'not coming back-ness'? Are you still working on it?

Sunday, September 19, 2010

Half Truths at the Side of the Road

It was a hard weekend. It seemed I cried more than usual, and was up late thinking when I should have been sleeping.

On Saturday I went to a nearby small town with my mom's female family members. My mom is one of 10 children. She currently has 5 living sisters, and I have many female cousins. A group of us got together for our annual 'Girl's fall outing' in a small town fairly close to where most of us live. This tradition started a couple of years ago. Generally the plan is that we meet at some coffee shop, go out for lunch and shop in those kitchy stores that sell pretty, but useless stuff no one needs. Etc.

Last year the outing occurred in November and it was during the cycle that I got pregnant with Aidan. It was hard for me to forget that here we were again, 10 months later, in a new small town, with the same people, doing the same things. But this time my son has been dead almost 5 months and we are still in the process of 'trying to have a baby'. It feels like we've come so far, yet gone nowhere. It also sucked that my cousin's wife was there and she just had a new baby in June. I was dreading having to ooh and ahh over the new bundle of joy, so I felt extremely grateful when I arrived to find that she had decided to have a 'day off' and didn't bring her daughter. *Whew*. I really felt for her, of course. Who would want to spend a lovely Saturday enjoying their new baby?? (heavy sarcasm, ha ha)

Since this was the first time I'd seen some of my cousins, I knew they would be curious as to what happened with Aidan. A big part of me wants to tell them. I want them to know how rough the pregnancy with him was. How stressful things got. How miraculous it was that he even made it as far as he did. But most of all, I want everyone to know that there was nothing wrong with him. I do not want them for a second to think that, "well, it was for the best" or any other such nonsense. I want them to know how perfectly he was formed, how the cause of his death had nothing to due with any sort of structural or genetic abnormality (that we know of), it was a placental issue and lack of amniotic fluid. Period. Dot.

So, it was because of this, I found myself standing on the side of the road in small-town Ontario lecturing 3 of my cousins about prolactin, progesterone, amniotic fluid and my uterine lining.

I know. Seriously.

To their extreme credit they were riveted. They asked appropriate questions and uttered 'aww' in the right places.

But, as I stood there telling my story, I realized I wasn't telling it right. I was telling them all the facts, but sparing them the emotional part of the experience. As I listened to myself, I couldn't believe how really little of Aidan's story I am able to convey. I cannot form words to describe looking down in the shower at 9 weeks and seeing a river of blood run down my leg. I cannot tell them how Brian and I came home from our disastrous appointment at 17 weeks and both threw up from how upset we were. I cannot fathom how to impart how much I love my son. My baby, who I would have recognized as mine out of pictures of thousands because of how much he looked like his dad. I cannot explain how I have lived through the past year, because really I don't know how I've done it either.

Sometimes it is this that makes me cry. That talking about my son is a draining and sad experience. That right now all I can handle is sharing the facts, and by only doing that, I sound cold and clinical. I cannot share the emotions I have for him, for us as his parents, for his birth, because it is all so intimately connected with his death. To do so would require a quiet room, hours of time, warm cups of tea and boxes of tissue.

It is too hard to explain that I cannot yet tease the joy from the sorrow. The facts are all I can convey.

Maybe some day they will get the whole truth, but right now I don't have the words.

Who has been the best listener about your birth and death experience? Why? Did it have to do with who the listener was, the setting of the telling, or your readiness to share? When asked about your dead child do you feel you are able to convey the fullness of your experience, both factual and emotional?

Wednesday, September 15, 2010

Or your money back, guaranteed

I have recently discovered Etsy.com.

I freaking LOVE this site. I could spend hours just browsing. What's really funny is I would have NO time for this in a regular mall or store. I'm not the type of person who goes shopping just to go shopping (unless it's in a bookstore). But I'm a huge fan of Internet browsing. I started off looking for a nice Aidan commemorative necklace that I would like to get. I have a few ideas in mind. Then I branched out thinking I could get some (very) early Christmas shopping done. I have a few things picked out for my sister-in-law and my friend and her daughter. I see a ton of wonderful things that I want, and at a click of a button they could be mine.

If only the rest of life could be like that.

As I'm browsing along, I'm reminded of shopping for my wedding. I spent A TON of time on-line (over the TWO YEARS I was engaged) finding ideas and things to make my day special. And it was. My day was awesome and came off without a hitch. I have nothing but wonderful memories of planning my wedding and I enjoyed the day immensely. My planning paid off in spades.

I wish planning my baby(ies?) was like that. I miss that sense of certainty about my future. I miss the idea that if I work hard enough, plan enough, save enough, am organized enough, that I can make my dreams come true.

What makes it so hard sometimes, is that I know it is that easy for some people. My cousin and his wife got married last September. It was his second marriage, her first. They had a baby in June of this year. Doing the math, I realize they must have gotten pregnant either the first or second cycle after they got married. They had the on-line equivalent of clicking "Add to Cart" and then "Proceed to Checkout".

I've never really been a jealous person. The only time in my life I've felt real envy was just after I decided not to pursue medical school. Then I would run into old friends who were in med school, or saw groups of students leaving the Medical Sciences building at my University and knew they had succeed at a dream I once held (and felt sadness giving up). But even then I was able to console myself with the fact that I COULD have been one of those students if I had wanted to keep working at it. If I had applied and kept applying until I made it. Could have done it if I had gone overseas or to the States. If I had really REALLY wanted to, I could have been a doctor. Could still be, I suppose.

But there is no consoling myself with the loss of Aidan. I did my absolute best to keep him safe. I did everything right. I rested, I ate well, I took vitamins, I drank water, I saw specialists, I prayed. And he still died.

My best wasn't good enough.

And there is no guarantee that it will ever be good enough. That my body will ever produce a living, healthy child the way I want it to. No guarantee that my heart will withstand the extra strain and grant me a long life with my (pleasepleaseplease) future child. No guarantee I will ever take my own child to the zoo, like we did last weekend with my friend's daughter. No guarantee I will ever shop on Etsy for things for my baby, and not someone else's.

I wish I could have a guarantee. Is that too much to ask?

Have you ever been jealous of anyone outside of being a babylost mama? When and why? How does the jealousy of those who aren't part of the dead baby club compare?

Wednesday, September 8, 2010

Luteal Phase Defect (or something like it?)

Okay, everyone I need your help.

Have you ever heard of a luteal phase defect? Have you ever experienced it? What did you do? What did your doctor do? Was it treatable?

Does anyone have a success story for me?

I'd really like to hear it if you do.

Let me give you some (long winded) background. Last year, about a month before we started TTC I noticed that I started spotting a few days before I got my period. The first time it happened I thought "hum, that's weird...", but wasn't terribly concerned because you read in pretty much every woman's health book, website or magazine that 'some times your period can be a bit weird...but it's nothing to worry about'...etc. etc.

But I did start to worry. I'm just that type of person. Growing up with a chronic medical condition makes you pay particular attention to your health. I grew up analyzing every twinge. Now that I'm an adult and have a greater ability to think rationally (I was definitely a bit of a hypochondriac as a kid) combined with my nursing background (and a little help from Google Scholar), it makes me pretty accurate when it comes to knowing what's going on with my inner workings.

So when the spotting started 2-4 days before EVERY PERIOD in the months of May, June, July, August, September, October and November of last year, it made me anxious...really anxious. I knew something was wrong. I thought it was pretty rational to think that "hey, if something is wrong with my baby-making-parts and we are trying to have a baby then maybe I HAVE A PROBLEM!!!"

Like, no duh.

So, just to get a jump on things, I started ovulation charting around May or June of last year. And lo and behold I noticed that my 'luteal phase', the time between ovulation and my period (also known around these parts as the 'two week wait') was, for me, NOT TWO WEEKS. Usually I would start spotting at 8 days past ovulation and then get my period around 10 to 12 days past ovulation.

When I went into see my doctor about this she immediately said "oh, your progesterone is low". She ran a few blood tests (but did not check my progesterone for some reason) and the only one that came back abnormal was my prolactin levels. I think she figured my hormonal imbalance was causing the bleeding and she figured once my prolactin level stabilized with a drug she prescribed to treat it, my progesterone levels would normalized and I would be 'cured'. My prolactin levels did in fact normalize on the drug and as far as I know my prolactin levels were normal when I conceived Aidan.

But I never stopped having spotting before my periods. There was never any evidence that my progesterone levels returned to normal. In fact I had spotting a few days before I got my positive pregnancy test. I had spotting a few days afterwards. I had bleeding 12 days after I saw those two pink lines...and well, if you've been keeping up, you know that bleeding was a sadly common thing during my pregnancy.

You also know Dr. K. told me at my "what the hell happened to Aidan" visit, that abnormal hormone levels prior to becoming pregnant may have caused a 'bad' spot in my uterus and thus did not allow a 'healthy' endometrial lining to support a baby. Resulting in blood, more blood, loss of fluid and death. He was cheered when I said that as of June when I saw him the grand total of one period I had experienced up until that point was a 'normal' 26 day cycle with no spotting prior. I'm sure they weren't his exact words, but what I felt this visit amounted to was: Too bad. So sad. Oh well...try again...blah blah blah.

So, you can imagine my dismay when coming up to cycle #4 after Aidan, I woke up at the cottage and saw spotting.

Exactly like last year.

I must make an confession at this point. I have not been able to stick to my original plan of 'neither trying nor not trying to get pregnant for one year' like I promised sometime back in May.

In fact I've even spent money on one of those Clear Blue Fertility Monitors just so I can track my cycles more accurately. (I did get a really good deal on it, if that helps my case at all).

My lovely monitor cheerfully informed me that I ovulated the weekend of August 28th or 29th. So it depressed the hell out of me see spotting September 6th. And yes, even here in Canada that is only a grand total of EIGHT days in my two week wait.


I am right back where I started. It's like the beginning of my nightmare all over again.

As you can imagine I've been a bit down the last few days. Really down.

Thrown right back into the 'it's not fair's and the 'why-us's and the 'Holy Christ, I miss Aidan so much I think I might just keel over and die's. Seriously. I thought of phoning into work today claiming I was just too depressed to get out of bed.

Now Google claims that luteal phase defects are often solved with added doses of progesterone and/or possibly Clomid. I'm all for that if it means the next baby (pleasepleaseplease) will have a better shot. But, as much as it cheers me that there might be an 'easy' solution to my problem, it also kind of kills me if it's true because:


I want to get in to see my doctor ASAP to figure out my next step. My appointment is booked for September 28th, an agonizing 3 weeks away. I'm hoping the time that I have to wait to see her might allow me to begin composing myself enough to enter her examining room with a rational way to explain my concerns, instead of dissolving into tears and stamping my feet and wailing "IT'S ALL YOUR FAULT!!!" I'm just wondering how aggressive I should be at this appointment? Should I play the 'dead baby card' and demand to see a specialist? What have other luteal phase defect mommies done? Have you seen an RE? Did a simple tablet of progesterone fix the problem? Did you need Clomid or other hormone modifying drugs? Did it work?

Also, if you live in Canada and you've been to see an RE did you self refer? Or did you need your family doctor to refer you?

So that is my life at this point. Feeling sad and depressed about my damn lady parts, just like last year, only this time I'm dragging around the knowledge that they not only failed me, but my poor baby son.

If you know nothing constructive about luteal phase defects, could I please just have some tea and sympathy from you. My poor sad heart would really appreciate it.

Wednesday, September 1, 2010

It could be worse

Last night we got a call from my mother-in-law. My in-laws are about to embark on their trip south to Florida and called to say good-bye and give last minute instructions regarding watering their plants, taking in the mail etc. etc. etc.

My mother-in-law sounded sad on the phone and immediately told me that her good friend's son died a few days ago, completely unexpectedly. This man was 32 years old, apparently healthy and woke up with chest pains. He then keeled over and died. Heart attack? Heart arrhythmia? Who knows. It's terribly sad.

What socked me in the gut however, was my mother-in-law telling me that this man and his wife have a four month old. Their son was born healthy and full term one week after Aidan. This is a couple, who only a few days ago I would have been massively jealous of. Why did they have a healthy full term baby, and I didn't? Why is life so unfair? What did they do to deserve a healthy baby and not me? And now...well this man's mother has lost her son. His wife has lost her husband. His son has lost a father.

His wife could now look at me and Brian and wonder "Why did my husband die? He was fine and healthy. He had a good life. He had everything to live for. Why my husband and not hers?"

"Them" have suddenly become "us". A family missing a member. A heart no longer whole.

I remember reading in the paper, maybe a year ago, an article about a young girl who suffered with a genetic disorder. The mother of this young girl talked about how she was organizing a fund-raiser to garner money to support research into her daughter's condition. She made an interesting point that has always stuck with me. She said, that while her daughter deals with a lot, she is actually on the mild end of a spectrum of her disorder. The family considers themselves lucky. The mother understood that the hand they were dealt, while not perfect, could be worse. The mother stated, "If you had 1,000 people throw their problems into a pile, you would end up going and grabbing yours back."

This is true for so many things in life. I'm a congenital cardiac patient and have one of the more severe types of heart malformations...yet I function very well and am a 'good' cardiac patient. Most people who don't know me are amazed when I tell them what I've lived with...yet I know I'm lucky. It could be so much worse.

Same with the kids I saw at work today. They all are regulars at the hospital, needing specialized medical care to cope with their illnesses...yet they do as well as they can, and are glad to be there. Our treatments, while inconvenient or painful, make their overall quality of life better and may even prolong or sustain their lives. They are lucky.

That woman who just lost her husband may be taking solace in her baby son right now. She may hold him and snuggle him and think to herself "At least I have my son. A piece of my husband is still with me".

Now, I know, I know, there are not many things worse than losing your child. I might gladly rush to grab someone else's disaster out of that pile of 1000. But, I also realize, I am learning to live with this sadness. I am learning to live with the loss of my son, while also finding contentment and even joy in my life. I am grateful for many things. My husband remarked last night that while he might have been willing to sacrifice himself to save Aidan...he wouldn't be willing to trade Aidan for me.

So people, moral of the post is...life sucks all over. Love the ones you have. Be grateful.

It could be worse.

Do you think it could be worse?