Tuesday, August 31, 2010

A side of hope

I'm at work. Things are going along just fine. Kids getting better. I like my job. Colleagues are funny. Gotta hurry. Start time. Lunch time. Home time.

But then...

I see them. I can pick them out in a crowd. My senses are so tuned to them that even in the crowded elevator, or in line at Starbucks, I know they are there.

Those NICU parents.

Working with their babies for years has schooled me in exactly what they look like.

They are a younger than middle-aged couple. Both look tired, but walk with purpose. Mom has a pouchy, post-pregnancy belly, and is wearing a flowing maternity top, as she still can't fit into her old clothes. She wears little makeup, and her hair is brushed, but not styled. Dad stands especially close to mom, often carrying whatever bag needs carrying. He is alert for her every movement, ready to steady her if she stumbles. They are wearing the hospital issued badges that identify themselves as parents, but their child is absent from the space that surrounds their feet. They walk, unencumbered by stuffed toys or mini backpacks, yet they are so obviously parents it might as well be tattooed on their foreheads.

And despite, knowing how sick some of their children are, how no parent would ever wish their child's first few days, weeks or months to be spent in the NICU...

I am jealous of them. Massively, green-eyed, forked tailed, envious.

They still have hope. Their child is still breathing (even if it's done at the behest of the respiratory therapist who sets the ventilator rate that keeps their child's chest moving up and down, forcing air mixed with pure oxygen in and out). Their child might pull through. Might be okay. Might.

And mine will not.

I look at these parents and think "You are the reason that I cannot go back to my old job. You have forced me out. You with your hope...and me without".

I also wonder as I look at these parents, "Which of you will join me here in the land without hope? Which of you will fail to dodge that bullet? Do you realize you are tottering on the brink? How life will not revolve around this NICU forever? How things will move forward, one way or another?"

I stare at these parents. Quickly glance away. Look back.

Why them? Why them and not us?

I do not wish Aidan into the place of their children. Well, maybe into the place of those whose NICU stay will one day be a distant memory, whose lives will continue on happy and healthy, belying how close death sat by their bed. Into the place of the babies whose NICU stay constitutes an upwards trajectory. Sick, better, even better, healthier, heavier...home.

I do not wish Aidan those sad, dulled, old soul eyes of the sickest babies. Whose bodies are failing. Who are in pain. Who if they could talk would say "no more, please just let me go". I would never wish that for him. I am glad he never knew the pierce of the needle. Or the ache of the fever. Or the tube in his airway, gagging him, choking him.

Or, at least I'm glad he did not feel those things if the result would have been the same.

But I do envy the hope the NICU parents have.

I want Aidan back, with a side of hope.

What do you think?

Sunday, August 29, 2010

Nurse Emily

So I had my first experience this week where I had to deny Aidan's existence. I got the dreaded "so do you have any kids?" question from a parent of a patient at work. I felt bad...but I answered in the negative.

So far, I have faithfully answered this question with the true story when a colleague has asked (so far it's happened twice), but I just couldn't get into the story with a mom who was at the hospital for her daughter's induction therapy of a new drug. I just couldn't. I am all for letting my colleagues know what happened. I want them to know, because I want them to know me, and my son's death is, and probably always will be, a big part of who I am. But it's hard to just mention to a casual stranger, a woman who is already burdened with fears about her own child, that 'oh yes, I had a son and he died'.

It hurts me to deny his existence. I'm not a hugely private person. I generally like discussing my life, even the messy parts, with people who genuinely express an interest, as this woman did. I'm usually the type of person who you can ask just about anything and I'll tell you the truth, so to say "no" when asked if I have kids just feels wrong.

This, however, is the balancing act of nursing. You must strive to create connection with your patients (and their families) without overburdening them or making them feel like they 'have to take care of you'. It can be called 'boundaries', 'professionalism' or a 'therapeutic relationship', but it all means the same thing. As a nurse, you can share things about yourself, like your cats name, your husband's job, your love of roasted marshmallow gelato...but don't, under any circumstances, make your patients (or their families) feel like they have to hold you up, or worry about your life. Sharing is okay, like "Yes, my aunt also died of cancer...it is a terrible disease", or commiserating "Yes, I know when I have to wait at the doctor's office it does get frusterating and stressful"...but "Yes, my son died and it was the most awful thing that ever happened to me...*sob*...can you hold this IV bag while I go grab some tissue...thanks"...is probably overstepping.

I got asked if I had kids quite often when working in the NICU, and since at that time Aidan was firmly in the future, it was easy to answer "No". Now that he's in the past it pulls at my heart strings to do so. But in both time periods the question of having kids from a patient's parents makes me a little miffed. I know these parents are asking only out of curiosity and to see if we have common ground. I know it's me who is reading into it, but that question, from a parent whose child you are caring for, seems to have a deeper meaning. Like only if you answer "yes", could you possibly understand how awful it is to have a child who is sick. And maybe that's true...but it doesn't mean that I can't be a completely awesome nurse. My having a child does not affect how good I am at my job. Nor does it reflect how much I like my job. I know many many pediatric nurses who do not have children, who do a fantastic job. It almost feels like these parents are asking if you've joined the secret club or not.

Or maybe I just feel that way because I had to answer "No" when asked about my son from a parent who has obviously succeeded at the whole 'giving life' process . When what I really wanted to say was "Yes! His name is Aidan! He's the sweetest, most awesome baby ever and I love him so much...even though he's dead".

Aidan, please know that's really what I wanted to say.

Do you have a story about a nurse that you'd like to share with me? What did you really want to say to your nurse during your recent baby loss, that you didn't? What could she (or he?) have done to make your experience just a little less dark?

And P.S. Could someone else just join as my follower already so my Peeps list can hit 50? Seriously being stuck at 49 is like being stuck just one year shy of legal age.

Monday, August 23, 2010

Psychic, or crazy, whichever comes first

Because it's Monday, and I'm home alone, and I have to work the rest of the week, and it's crappy weather outside, and my stupid carbon monoxide detector keeps beeping almost every minute saying "Low Battery" and I can't figure out how to turn the damn sucker off...I thought I might try to distract myself and write a fun light hearted post.

Do you believe in psychic abilities? I'm not sure I do. I certainly don't believe it works the way it does in movies where the psychic can turn the ability on and off at will, or that the psychic goes into a trace like state and 'sees' the exact thing that will help solve the mystery or the crime. But I do believe that our brains have a lot of untapped resources and some of these might include heightened awareness.

People in my mom's family believe in psychic abilities. While I was pregnant, my aunt actually visited a 'professional psychic' (yeah I know...sounds super hokey if you ask me). He told her, among many other things, that she knows a nurse...and that that nurse would have a son. A little strange, I guess...but come on...nursing is a very large profession. Pretty much all of us either know a nurse or have come into contact with one on occasion...and half the babies born these day are, ya know, boys. Still...it was kind of 'odd'. When I found this out my first thought was "did the psychic happen to mention if that nurse would have any other kids?! Like you know...soonish?" Sadly not.

My mom herself actually claims to have had some psychic experiences in her life. She doesn't go on and on about them or anything, but whenever the subject comes up she reminds us of how, as a child she possibly saved the life of her younger brother. Early one morning, when she was about 7 or 8 years old, my mom had a dream that the curtains in her bedroom were on fire. This scared her and made her get up and go downstairs. She didn't know it but, her youngest brother was already up and was making tea for their mom. Unfortunately to heat up the water he had to use the gas stove. When my mom got to the bottom of the stairs, she saw her little brother, aged 4 or 5, standing silently in the doorway of the kitchen, not speaking, not crying, just standing there...with his night shirt on fire. My mom screamed and her mother came running. My grandmother was able to grab her youngest son and put out the fire, but sustained bad burns on her hands. My uncle spent months in the hospital recovering from 2nd and 3rd degree burns to his chest and neck.

Freaky huh? Now you could explain it a million different ways, I'm sure. My mom heard him get up and that's what made her get up. She heard him use the stove and that caused her dream about fire, and it was a total coincidence that he happened to at that moment be catching his own clothes on fire. There may be a total rational explanation, but it's still a little odd.

I have never had anything quite so dramatic happen. I've never saved any one's life by any intuition (other than nurses intuition and that's a developed skill which would be a whole post unto itself), but the last couple of weeks I've had two things happen which I would consider took advantage of my 'heightened awareness'. Not grand things, or even that important really...but when both of my 'inklings' turned out to be correct, it made me pause and go 'hum...interesting'.

The first I've already mentioned in a previous post. When I met my preceptor at my new job she, in passing mentioned her kids. She referred to her eldest daughter as 'Amelia'. Amelia is the name that was the runner up for my best friend's daughter who is now 6 months old. If she had been born before noon on her due date, she would have been named Amelia. Since she was born after that, my friend got her way and her daughter's name is what it is now. I secretly wanted my friend's daughter to be named Amelia because it of course sounds like the exotic version of my name "Emily". Anyway, then my preceptor said something about her son. She referred to him only as 'my son'. When she did this I immediately thought I bet his name is Aidan. A few hours later, at lunch I asked her what her children's names were. She confirmed my intuition. I have yet to ask her how her son's name is spelt. I'm curious to see if it's the 'correct' spelling Aidan, or if she went with the Americanized version Aiden.

Okay, I know...not earth shattering...especially considering Aidan/Aiden has become super popular. But still, it was funny that I immediately thought that ahead of time as soon as I heard she had a son. My intuition was likely based on knowing her daughter's name was Amelia. Another soft name which flows nicely with Aidan. With a daughter named Amelia there was no way her son was named Hunter (too last namey) or Blake (too wishy-washy) or Justin (too rough and tumble)...those names just wouldn't flow with Amelia. Still of all the manly soft boy names that are popular right now such as William, Ethan, or Owen (or 7 years ago when she named him), it was kind of odd that his name was Aidan...and that I knew it ahead of time.

The other happened this past weekend. First some background info.

My friend, A. got married last year, (on August 15th 2009, exactly one year prior to my due date) to a guy that I don't know that well. She met him after I had moved away from the city that we grew up in together, and we currently live about two hours away from each other and don't get to spend that much time together. I hardly knew him at all before they got married last summer, but in the days leading up to the wedding I got to know him and his family a little better. I met his parents and his two sisters. His eldest sister looks just like him. His youngest doesn't at all. She is Korean and was adopted from Korea as a child.

A. and her husband came to visit us this past weekend and it was the first time I'd seen them since before my pregnancy. I was a little nervous about them coming because it would be 'the first time since the dead baby'. Would we talk about Aidan? Avoid him entirely? He's been the biggest change in my life since I last saw them, so how could we not talk about him? I was also nervous because I don't know how her husband was going to react to dead baby talk. Would he think we were odd? Would he act all uncomfortable? I was a little worried...but then I had the thought "he probably won't be weirded out at all...he has an adopted sister...I bet his parents lost a baby too." I suppose I thought that because his family mirrors my father's. Two biological children, and the third adopted, after my grandparents experienced the stillbirth of their third.

So, they arrived and we chatted and we went out for dinner and then something about death came up and I mentioned that we haven't yet put Aidan's ashes in the ground because I couldn't bear to leave him if we decided to move. My friend agreed this would be difficult and then turned to her husband and said

A: "Isn't Christopher buried somewhere near your house? Does your mom ever go see him?".

A.'s husband: "Yeah she still goes there on occasion".

And just like that I found out my friend's husband has an older brother who died when he was 5 days old. He was three years older than my friend's husband and was his parent's first baby. He suffered a lack of oxygen during delivery and his parents were told he would grow up with severe cerebral palsy. He is buried in the cemetery of their small rural town, where his parents have lived all their married lives. He was not younger than A.'s husband like in my father's family...but still a pretty good 'guess' on my part.

So my pregnancy, along with widened hips and 7 lbs weight gain, has granted me Aidan name intuition and dead baby radar.

I'm a freak of nature.

Now, if only I could figure out how to rip the batteries out of my carbon monoxide detector, life would just be peachy.

Do you believe in psychic abilities? Ever had any 'funny' experiences? Did your pregnancy grant you special powers like mine, or did all you get was stretch marks and a belly pooch?

Sunday, August 22, 2010

Just for him

Back in July, up at the cottage, Brian and I decided to drive into town because we needed a new set of knives. We were getting sick of trying to 'saw' through our bread with a dull knife, leaving it squashed and misshapen. We went to the dollar store, because really, it's the cottage, and who needs an expensive set of knives when you are at the cottage?

I was browsing up and down the aisles looking at all the cheap crap that nobody needs...and I stumbled into the baby clothing racks. Of course. I decided to take a look, just because...what the hell...why not rub salt in that wound? So I started looking at all the cheesy baby stuff that I never really would have looked at before. My taste in baby clothes tends to run to the 'what would I wear if I were a baby?' I'm not a huge fan of the 'uber-cutesy' stuff with lots of bows or funny phrases or BRIGHT colours. My tastes tend to run more to the baby Gap sort of stuff. Clean, crisp...tasteful.

I'm flicking through the racks and I see it. It's really bright. It's got a cheesy cartoon turtle on the front. It's cheap crappy material. It's a summer outfit. It's $8.

It's the most goddamn adorable outfit I have ever seen.

And, just like that, I can see in my mind's eye Aidan, my beautiful, sweet, 7 lbs, healthy, baby boy sitting in his car seat dressed in that outfit.

So, I show it to my husband and he agrees it's cute and then I put it back on the rack and we buy our $4 knife set (cutting board included!) and drive back to the cottage.

Then we have our massive fight that lasts two days. Then we made up.

Then that weekend before we left, I say: "I have to go back and get that outfit". There is no reason for it. My Aidan died. He does not need an outfit. I told myself at the time that I was buying it for 'the next baby' to show myself that I had hope that there would actually be a next baby.

But really...I bought it for Aidan.

Two and a half months after he died.
I did it because I never bought him anything at all. And I really wanted to.

In the room that would have been his I have no furniture, except a single dresser that used to be mine as a child. It is otherwise empty. In the middle drawer I have all the 'papers' and 'things' that relate to him. The ultrasound reports, and photos, the CDs from NILMDTS, the 'dead baby folder' that they give to parents who have experienced a loss at the hospital where I gave birth, the blankets we held him in and the outfit he wore. I consider this middle drawer 'Aidan's drawer'.

In the bottom drawer I have the baby socks my husband put in my stocking last year at Christmas when I was almost 7 weeks pregnant. And we have the matching daddy sized and toddler sized Superman T-shirts. My husband is WAY into superheroes and we bought the toddler sized Superman shirt at the Gap about two years ago. It was bought for 'our future child', before we were even trying to conceive. My husband used to have a Superman T-shirt just like it as a kid, and he wanted his child to have one too. In this drawer I also have my Bella band that I used to hold up my pants over my expanding pregnancy belly. I also put my pregnancy/nursing bras in there too. I have hopes we'll get to use these things again...someday. I consider it my 'next baby' drawer.
The last picture is Brian, my husband, as a superhero.

Neither the socks, nor the T-shirt, nor the Bella band or the nursing bras were bought with 'Aidan' in mind. They were bought either for my pregnancy with him, or for 'our child'...nameless, faceless and genderless.

So, I'm having a hard time deciding what drawer to put the outfit I now consider "Aidan's". Should it go in drawer #1 or drawer #2?

I guess I will consider it a hand-me-down. From Aidan to his younger brother or sister. And the next child will wear it. Even if they are born in winter, where there is no way they could wear the outfit outside. Even if it's a girl and the outfit makes her look like a boy. I will stick him or her into it and take a picture.

And my mind's eye will flash back to a figment of my imagination, to the alternative universe where Aidan is alive and sleeping in his car seat, wearing the outfit. The only outfit...

I picked just for him.

What do you plan to do with the clothes you bought for your dead child? Will they be hand-me-downs? If you didn't buy anything at all, do you regret this? Or feel grateful you don't have (expensive) reminders gathering dust?

Monday, August 16, 2010

Monday's Big Thoughts

Long, long ago, in a land far, far away....

Okay, it wasn't that long ago, maybe 3 or 4 years, a year or two before we started trying to get pregnant. And it wasn't far, far, away, it actually occurred about a 20 minute drive from here, while we were in the car on the highway in between our house and Brian's parents place....but I remember it distinctly.

The conversation went something like this:

Brian: If we won the lottery, would you want to skip getting pregnant and have a baby via surrogacy?

Me: Ummm....probably not. I want to try myself.

Now, I can probably guess what you are thinking: What? Why? What a weird question!?

Actually it's not that weird. My heart defect places me at higher risk for complications during a pregnancy. As my OB nicely explained to me when I was already 16 weeks pregnant, he felt reasonably sure that while my heart function may decrease during my pregnancy, most women with heart defects rebound after delivery. The issue becomes, does this 'rebound' last? Or do women with heart defects, who get pregnant, experience a 'faster' wearing out of their hearts?

Think of having a 5 year old and coping with heart failure.

My doctors do not know the answer to that question. I was going to be in a study to help them find out. I'm not sure that my pregnancy with Aidan fits their inclusion criteria anymore.

Anyway, I was thinking over the past few days that my answer to that question my husband nonchalantly asked would now be:

Yes, definitely, I would start the process tomorrow.

In my mind, when my husband first asked this question, pregnancy was this little dot...way in the future. Something fuzzy and sweet and wonderful to look forward to. Of course I would want to try to have my own child...I knew that my heart might be affected...but I wanted to at least TRY. Never know until you try right? I wanted that big belly and baby kicks and to be able to breastfeed. I wanted the experience of watching my body change and grow and to give birth. I wanted to watch my body do something right, something normal.

Now. I want to live. I want my baby to live. Nothing else matters.

I know people have issues with surrogacy. Hell, I have issues with surrogacy. My university minor in Women's Studies would have me question it. Do we have a right to buy and sell a child? Is surrogacy tantamount to 'renting a womb'? Is it right to place another women's health in jeopardy to achieve your own goal? How does it impact the mother and child bond? Is this just another way that white-bread yuppies are taking over the world?

I have no answers to any of these questions. Well I do, but they would be long and complicated and would require footnotes and source material. But, I do not have any personal experience from which to draw.

Often people who oppose surrogacy will say "why don't you just adopt?"

These people have obviously never adopted before.

This 'just adopt' attitude completely overshadows the HUGE undertaking it is to adopt. It assumes that adoption is just an answer to a problem, ie: you want a baby, that baby needs a family, voilĂ , perfect situation! It negates the very real and very painful emotional scars that can result from adoption. My aunt was adopted, and although I will never know for sure, I can tell you, the emotional scars it left behind likely impacted her decision to commit suicide 45 years later.

Adopting also brings up some of the exact same questions that surrogacy does. For example, adopting costs money. Now you are not exactly 'paying' for a child...but there are many costs involved as I understand it. Lawyers, social workers, home studies, adoption agencies etc. It's like thousands-of-dollars-not-free.

We in our nice little world, also assume that we are somehow 'doing the biological mother a favour' by taking her child. Adoption is seen as a way for the biological mother to be able to go on to do 'bigger and better things' until it is her 'time' to have a child. You know, go to school, get a good job, get married, buy a house...the 'right' things to have before a baby enters the picture. This might be true in some situations. She might very lovingly and willingly give up her child. But, what if the only reason she's giving the child up is because she's living in poverty and is having problems feeding the three children she has already? What if she really would have kept it, but she lives in a country where unwed mothers are social pariahs? What if the only reason she's put her baby up for adoption, is to save the baby from the domestic abuse she suffers daily?

I don't have the answers to those questions either.

I'm not at all disparaging people who adopt...or children who are adopted. It might be an option for us some day. I'm just saying that there are often a lot more factors involved in 'just adopting' than bringing home the baby.

I'm not writing this post to say, 'hey I'm looking for a surrogate'. I'm not. I really do still have that dream of being able to carry my own baby. And I was given 23 weeks and 3 days of hope during Aidan's pregnancy that I might be able to pull it off without anything disastrous happening to me (to him is a different story). Plus it's more fun creating your own baby from scratch...and it's way cheaper.

Unfortunately, it sucks to be me and worry not only about 'hey my last pregnancy ended with a dead baby, let's hope the next one doesn't end with a dead mother'. In fact, why don't we just try to avoid the word dead or sick in all future pregnancies shall we?

I guess what I'm saying is I want a baby. And, I don't really care anymore how it happens, as long as all parties are alive and healthy at the end.

What are your thoughts on surrogacy? Adopting? Ever considered it? Ever had to consider it?

Sunday, August 15, 2010

Due Date

It's here. August 15th 2010. The day that Aidan was 'due' to be exactly 40 weeks gestation and deemed ready to be born by conventional medical wisdom. I have no illusions that Aidan would have been born on this particular day. Statistics say that only 5% of babies are actually born on their due date. My heart defect makes that even less likely. If you are to believe my OB, it would have been more likely that had everything gone according to 'plan', I would have a one month old right now. It's completely pointless, but, despite knowing I would likely not make it to this date pregnant, I was really excited that THIS day was my due date.

For the following reasons:

-My Nana, my mom's mother, was born August 15th 1921. She would have been 89 this year...but she died back in 2007. It was nice that my baby was due on her birth date. When I told my mom what my due date was, she cried. I even saw it as a good 'omen' back when I had all the initial bleeding at 9 weeks. How could anything happen to my little peanut when his/her due date was my Nana's birthday? It just wasn't possible.

-To make my due date August 15th 2010, my LMP (last menstrual period which I'm sure all of you know for your own pregnancies because you have to repeat it over and over at every doctor's appointment), was November 8th 2009. This was the day after my father's birthday last year, and the day we had a party for him at my grandmother's house. I haven't actually seen certain family members since that day.

-My parent's 30th wedding anniversary is tomorrow, August 16th 2010. Wouldn't it have been wonderful to welcome their first grandchild into the world around the time of their wedding date?

-I know exactly where I was last year on August 15th 2009. I was the maid of honour in my friend's wedding. I was wearing a short blue dress, hair curled up by a hair dresser, with a brand new necklace that my friend had given all of her attendants that she got on her 3 month Asian holiday after finishing teaching in Korea. I wore that necklace all throughout my pregnancy as a 'good luck' charm in hopes of making it to August 15th 2010. It is of course, her first anniversary today.

-My husband's birthday was last week on August 8th 2010. He was 32. I likely would have given birth before that...so his 32nd birthday would be the first he spent with his son. A wonderful birthday gift.

All of the reasons I was attached to August 15th 2010, of course, pale in comparison to the fact that I was attached to the idea of having Aidan. It wouldn't really have mattered what day he was born, as long as he came home with us (alive of course).

It actually kind of bothers me that his birth date is April 21st 2010. Not because of anything wrong with that day...but because it is obviously too soon for him to be able to live. How can I attach any significance to that day when all it represents is the day my son died...and had no hope of living. Next year, when April 21st rolls around, I can't even imagine and say "wonder what it would be like to have a one year old"...because there was (almost) no way that I could have had a one year old. Giving birth on that day, from that LMP, with that due date, meant that my was son was born at 23 weeks and 3 days gestation. It meant my son would die. All April 21st will represent forever, is that one more year has passed since I birthed Aidan and then he died 54 minutes later in his daddy's arms. April 22nd will only ever be one more year since the last time I held him. Those days did not hold any fascination for me in my pregnancy time line. April 21st and 22nd were just supposed to be a regular old Wednesday and Thursday. They were not suppose to mean anything..not the way August 15th 2010 was burned into my brain...into my heart.

I wanted to honour his due date in some way. So my husband and I packed up our camera and went to a little church about a 20 minute drive from us. I only found out about this church on June 7th of this year. We first saw it on our 2nd wedding anniversary and I wished I had a camera at that time. I'm not a church going person as you probably know if this isn't my first post you've read...but this church is now forever special to me.

So Aidan, my dear sweet boy, this is not how I envisioned your due date all those months ago on December 3rd 2009 when I found out you were on your way. This is never how I wanted August 15th 2010 to be. I wish you were here more than anything else in the whole world.

You will never be forgotten.

I miss you. I love you.

There is nothing more to say.

P.S. I wanted to give a shout out to a few of you who have contacted me by e-mail over the past week. Thank you for your kind words. Always appreciated. I also wanted to wish a happy due date to Kristin, Andy and Stevie. Thinking of you and hoping this day was gentle to you.

Friday, August 13, 2010

Oh, one more thing.

Please see this first: Ready for # 20

Dear God,

If I am wrong and you do in fact exist, could you please make sure these people have no more freaking (living) children before I do. I would be super grateful...and it would be only fair.



Thursday, August 12, 2010

Watch your language

A few weeks ago I was talking to my mom on the phone and I referred to Aidan as my 'dead baby'. My mom kind of sucked in her breath and said something a long the lines of 'dead baby' sounding very 'harsh'.


I'm sorry, but what else am I supposed to call him?

I've never been one to use euphemisms. I find them irritating in their vagueness. Why not just say what you mean? I'm a direct person. I ask truthful questions. I expect truthful answers. I don't like evasiveness. Euphemisms muddy the waters. They cover up the truth. They hide it and attempt to make it pretty or into something it's not. The closest I will go to using one when I talk about Aidan is when I describe myself and others who have dead babies as those who are 'baby lost'. I think loss and lost are okay descriptors because that's generally how I feel. I feel an intense sense of loss. I have lost out on life with my son. Without him, some days I feel lost.

I remember feeling validated in my abhorrence for euphemisms when reading a book on child development. Many developmental specialists will tell you that the best way to handle the topic of death with a child is to be direct, clear and above all accurate. You should never tell them that the person has 'gone to sleep and won't wake up', or 'passed on' or 'gone away' or other such nonsense. You are to tell them that the person has died. The reason for this is that they can misconstrue anything else. "Gone away" turns into 'gone for a little while and therefore can come back'. "Passed on" is so ridiculous in it's vagueness and serves no descriptive purpose. And, the one that I personally HATE the most is "went to sleep and did not wake up". As a child I worried a lot about death. Can you imagine making death scarier for a vulnerable child by telling them it's something that comes and steals them away in their sleep? *shudder*

When I read this advice, from a developmental psychologist no less, I felt validated. I figure if the truth is good for children to hear then why should I have to gloss over it for adults? I found out in nursing school that the best way for medical professionals to tell people that their loved one has died is just to say that "your (insert relative) has died". Anything else is just window dressing.

I think I also somewhat LIKE the term dead baby. Not for what it is, of course, but for what it conveys. The term is a slap in the face. Horrific. Dead. Baby. Two words that just shouldn't go together but in this case must, and God damn it, it just cannot be glossed over.

Sorry mom.

Okay end of rant. I'm feeling a little ranty today. Aidan's due date is Sunday and I'm not pregnant by his due date. I wasn't really PLANNING to be...but it would have been nice. I had a five minute cry about it this morning...then moved on.

I love you Aidan. My dear, sweet, dead baby. I wish you weren't, ya know...dead.

How do you refer to your dead baby? Why?

Wednesday, August 11, 2010

The Job

Okay all. I'm done my first week of work. I know it's Wednesday night...that's the beauty of working 32 hours a week and having shifts that last 12 hours...your work week can end on a Wednesday.

So, the job. It's actually pretty good.

The unit I'm on does day procedures. Many of the kids are repeat customers (ie: kids with life long and or serious diseases that require on-going hospital visits), but they are currently well enough to be at home. They do, however, require on going treatment at the hospital. Many of these treatments consist of IV medications or blood products that require pre/post bloodwork and monitoring. Some of these kids come EVERY week for an infusion. For example, kids who have metabolic diseases and need an enzyme replacement...it will be an infusion, once a week, every week, for the rest of their lives. This means a 6 to 8 hour hospital visit every week.


No shit.

Other kids, we recover after having things done like endoscopies and colonoscopies (yes, kids get them too...fun times).

It is a MAJOR step down in terms of acuity. I'm used to having to literally JUMP out of my seat because the baby I'm looking after suddenly stops breathing and needs some encouragement to start back up (with anything ranging from a gentle pat on the bum to an all out code including resuscitation drugs, intubation and chest compressions). These kids I'm looking after are not likely to stop breathing, in fact most of them race on out of the unit as soon as they are finished their treatment, yelling "Hey mom, can we stop at McDonald's on the way home??!"

I could go into the other differences about the unit, from the staffing, to the charting, to the team nursing approach...but really it would probably be gibberish to you. Suffice it to say, it's different. Way different.

One difference that I'm surprised I'm enjoying so much is the kids themselves. These kids talk. They walk. They ask questions. They are nervous. They joke. They whine. They play. It's kind of fun actually. As much as I LOVE babies, I'm remembering how much I love kids too. I like hearing their stories, the way they describe things, the way they see life. I like trying to make life better for them.

But, I have not yet found a way to work my own child into the conversation with the other staff. A dead baby being such a buzz kill.

It's something I think I want these nurses to know about me...it's hard not to feel like I'm hiding something HUGE unless I confess to one or two people and let word spread from there. But on the other hand, I'm thinking it's been good that they are getting to know me without the 'dead baby baggage' yet. Because I want to be more than just that in their eyes. I want them to trust me and count on me and see me as an equal...not someone to be pitied or avoided. I know I can do a good job there, and I want them to know it too, before I bring up Aidan.

But he's never far from my mind. I'm not into 'signs' but these were a few odd things that happened my first day.

First of all, I woke up from a dream Monday morning where I had a premature baby. One that was quite tiny, although bigger than Aidan...maybe 2 to 3 lbs. In it, this baby had started off small but 'well'. I had brought him home from the hospital...but he started to go down hill...he started to sleep a lot and not wake up for feeds, so me being the awesome mom, FORGOT TO FEED HIM!!!! I just kept letting more and more time elapse between feeds, which made him weaker, which spaced his feeds out even more. My dream ended with me resolving to feed him more and more frequently to hopefully get him stronger.

I know what you're thinking: Paging Dr. Freud!

Second, I arrive at my new job and within an hour, find out that one of the nurses has not arrived for her shift. The reason: she gave birth to her baby hours before via C-section. Two months early. She wasn't due until early October. Everyone was all shocked and concerned. The little guy was 3 lbs and had to be intubated for a short period of time after birth. (Dead baby mother me agrees with former NICU nurse me. Verdict: no biggie). But it made me think...MAN...am I ever LUCKY that there wasn't a 7 month pregnant woman walking around here today. And, of course, felt guilty (yes, terrible that her son was early, yada, yada, yada)...but not that guilty. Because that would have SUCKED big time on my first day. Hello hugely pregnant woman! Nice to meet you! Why am I crying every time I look at you? No reason!

Third, my preceptor (the nurse that I follow around for the next few weeks to get used to the job) was telling me about her family. She has two daughters and a son. Can you guess what her son's name is? I'll give you one guess.


He's 7.

Then the woman in the NICU who I used to work closely with on a committee delivered her baby Monday. I didn't know she was pregnant until after I was off work on bed rest, so I never actually commiserated with her on 'our' pregnancies. She was due August 21st, six days after me. I was dreading hearing the news as I knew it was a boy, but it honestly wasn't that bad. I might have, however, had to delete her from Facebook if she had delivered on August 15th. At least that birth is out of the way.

Just weird little things that kept popping up. Nothing too horrible, but mini reminders everywhere. Good news was I slept the night before. I worked hard (VERY hard...my legs, feet and back were killing me afterwards) and I actually enjoyed it. I think I'll like my 10 month 'break' away from the NICU. This will be good for me. I'm happy.

But I still miss him.

Every. Day.

Saturday, August 7, 2010


Okay, some of you may have read it. I know Annette commented on it. I'm referring to that blog posting written by a young woman who thinks us babylost mothers are not being respectful by posting photos of our dead babies and can't understand why we create 'online shrines' to their memory. I'm not going to post the link to it because I know it upset a lot of babylost bloggers.

However, I bet that woman's opinions are not all that original. I bet there are lots of people out there who would not understand the desire we have to connect with one another over our lost children. They would not understand the need to 'cling' as they say, to our babies. They wonder why we don't 'move on', 'try again' and wonder if 'continuing to focus' on the loss is really in our best interests. I've been thinking a lot over the past little while about how other people see us babylost moms.

Perhaps it's because I'm about to go back to work with sick children, including babies. Maybe not the same type of sick children I was used to to looking after, as these ones will weigh more than a honey dew melon, but still, not the type of children that make it into theme park ads, or commercials for frosted cereal. And really, those are the types of children people are familiar with. Children that run, jump, play, pretend. Children that don't have needles stuck in them, whose youthful bodies are not giving out on them, children who don't know what a blood transfusion or a lumbar puncture is. Babies who eat with their mouths, and not via a tube through a hole in their stomach.

Those who do not live in the land of the sick and the lost see baby and childhood death as a very foreign concept. One that does not get brought up in polite society. Even the Foundation website (where you go to donate money) of the hospital I work at glosses over the struggles children must endure to 'overcome' their illnesses. There is NO mention that sometimes no matter how good the care, no matter how much money, time and effort or prayer is put in, babies and children still die. There is no mention on this website that these babies and children have undergone more invasive tests, surgeries and medical procedures and spent more time in the hospital than your average 90 year old. That they have been brought back from the brink many, many times. Maybe more times than they should have. Death and illness are portrayed as the enemy, not a natural event that will happen to us all...some of us sooner than others.

To avoid thinking about baby or child death, people like to shut it away, not see it, pretend it doesn't exist...that it is too "precious" to view or talk about. That it should only be mentioned in the most reverential tones at a funeral and even then, done in euphemisms and innuendo. Soften it, smooth it out, gloss over it.

I remember, over a year ago, when my husband and our two best friends were on our European vacation and I was describing to them the recent events of a shift I had worked prior to going away. I had arrived at work to find that my patient had already died, and all that was left to do was to wash and dress the baby, finish up some paperwork, and then take him down to the morgue. I would have to wait awhile though because his parents were still holding him. So I waited. I checked in on them, and waited some more. Then, when they were ready, I took their son and did his bath and dressed him in the outfit they had chosen. I packed up his foot and hand molds, and his other special mementos. I showed his parents the folder of information that is given to the babylost. Got assurances from them that they had a ride home. Then they said goodbye to their son. Mom cried. Dad held her. Afterwards I wrapped him up in baby blankets, nicely positioned his arms and head so it would look natural for his funeral, put the identification tags on him, wrapped his little body in a baby sized body bag and took him down to the morgue.

As I was describing this, my friend was looking at me in horror. He said "I could never do that...I would be a mess". Now I've had many versions of this comment over the years I worked in the NICU. I appreciate that people were trying to tell me that I was 'strong' and 'brave' for what I faced in the NICU...but I always felt a little like it was a backhanded compliment. More like what they were really saying was "I'm much more sensitive and caring than you are. I could never watch babies die and then go back to my regular activities", or more likely "I'm glad it's you and not me". Really, there were very very few people that could listen to a full account of what I did on a regular basis. They did not like to hear about it. They did not like to face baby sickness and death. Most people pretend it does not happen...and they like it that way.

We were out last night with these same friends for my husband's birthday dinner. They had their 6 month old with them. They were telling us about a joke that involved labour, midwives and musing about a funny things to say during the delivery of their next kid. I'm sitting there smiling and going along with the joke...but I just couldn't stop the following from running through my head: "Wow. They assume that their next delivery will be peppered with funny moments. Stressful ones, painful ones, too...but also a celebration...a cause for joy. They are assuming they will have a midwife deliver their baby and not a high risk OB, and that it will be a vaginal delivery. And...they are already assuming there will be another child".

I no longer make assumptions about these things. I hope for them. I wish for them. But I do not assume. The only reference point I have is my own labour and delivery, and it was not full of joy, or cause for celebration, and definitely had no funny moments. It was painful in away that did not end when the baby was delivered, the muscles healed and the uterus shrunk back to normal.

So, I'm thinking all these thoughts about my own baby and baby death.

Then I see this on Esty:
It's a post mortem photograph of a baby named Willard who has died at age 4 days in the summer of 1911 of 'innard spasms' (whatever that is). This photo is selling for $60 US ($63.32 CAN).

And, at first glance, I am creeped out.

Here I am, immersed every day in baby death and I cannot fathom why someone would want to have a 99 year old photo of a baby who they never knew and had no relation to (for over $60 no less). But then I think, Emily, who are you to judge? Why be creeped out? That was someone's loved little baby and wouldn't you be impressed if one day someone thought Aidan was so cute and beautiful that they would pay $60 for a picture of him? Hell, I would save the one perfect photo we have of him in a fire over any other possession, even over his urn. So, who am I to judge an antique enthusiast who finds joy in collecting old photos. Some day all our photos will be old.

So, while I cannot and do not agree with the website I mentioned at the beginning of this post or its view of us babylost, I also can understand why the writer would feel that way. Why she wouldn't get a blog devoted to a lost baby, or why photos of dead babies would fall under the definition of 'freaky'. Really, her opinions probably fall with those of the majority of humans out there, she just expressed it in an offensive manner. Same with my friends...who view pregnancy and birth as a time for stress surely...but ultimately of happiness and joy. They have never experienced anything else. Just like those people who view the NICU as a foreign world, full of things they do not understand and cannot imagine...and like it that way.

But I can understand, and imagine, and accept. And I hope, in time to view it as a gift, rather than a curse.

Have your views of illness and death been affected since the event? Do you find yourself more accepting of others and their world view? Does baby Willard freak you out? Or can you see past his dead-ness to the cute little guy he would have been?

Friday, August 6, 2010


It's my husband's birthday this weekend. On August 8th he will be 32 years old.

I wish I had a way to make it special for him. I wish Aidan were here or about to be born. I wish I could pull something out of my hat (or out of my uterus) to make him happy, to make this day special for him. I wish the entire weekend was filled with joy, rather than tinged with sadness.

We got him a cookies and cream gelato cake. It better be damn good.

But no cake will be good enough.

On the other hand, thank you my babylost friends for responding with such love and acceptance to my last post. It is hard for me to admit how much of a failure I feel like. I *know* I'm not, but there is always those niggling feelings of 'what if'...but I did feel a little better after my last post.

So happy weekend all. Next week I join the 'land of the living'. I'll try to keep my thoughts on positive and happy things. Maybe, just maybe it will be okay.

How have you made birthdays and other occasions special for each other since the loss of your baby? Can you get through the day without thinking, "If only..."

Wednesday, August 4, 2010

Ready or Not

I go back to work in less than 5 days. I'm nervous. Really nervous.

I'm nervous because I'm going back to a job where no one knows what happened. No one will walk on eggshells around me, no one will know that if I seem distant and sad, it's not because I'm a bitch or normally that way, it's because my baby died and that's just how I am these days. I'm going back to a new job and it's a job with a lot of responsibility. I'm afraid I'm going to do something crazy or stupid or forget something that just cannot be forgotten. It's hard being a nurse. You have so many lives hanging in the balance. You fear doing and saying the wrong thing all the time. I've read a lot of blogs and every time someone mentions the uncaring or stupid or thoughtless things one of the medical personnel said or did, I cringe inside...because what if that's me? What if I do something that makes life worse for someone else? I know as a nurse people count on you to be strong, to hold them up, to make things better, to say and do the right thing. But what if I'm the one that needs holding up? What if I can't take it?

I have this big secret that I'm carrying around. I haven't really talked about it much on my blog. No one really knows how bad it is, except maybe my husband and my mom, but I think I need to get it off my chest. Maybe I really will feel better.

In the 9 months or so before I got pregnant, I wasn't doing very well. I was stressed. I was stressed all the time. I was worried about getting pregnant and how it would affect my health. I was worried about having to continue to work while pregnant and how was I going to manage feeling even MORE tired and dragged out doing shift work? My heart functions well on a day to day basis...but I'm pretty sure I live with a *teeny* touch more breathlessness than other people. Would that get worse? Would I get worse? I was worried about something bad happening to my baby because of my heart. I was worried about dying if I put my body through a pregnancy. What would my husband do? Would he feel like he killed me? Would my family ever forgive me if something bad happened to me because I wanted a baby so badly? I was worried I wouldn't get pregnant. That I would have to spend time, money, and energy in fertility treatments. I was worried it would never happen. I was worried that it would.

I worried so much, I couldn't sleep before I had to go to work. Now when you work shift work sleep is VERY important. I ended up calling in 'sick' quite a few times just because I couldn't sleep and I was worried that if I went into work on only an hour or two of sleep that I would screw up and end up making mistakes. You can't make mistakes in the NICU. You just can't. I don't know why my worrying seemed to come out at these times, as I would lay there and toss and turn for hours, but it's probably because I just couldn't cope with the stress of work on top of my already stressed out background thoughts.

I worried so much that I think I may have actually caused the hormonal imbalance that MAY have contributed to Aidan's death. Now, now, I know you're thinking "Oh Emily, of course you didn't have anything to do with your son's death...etc, etc." But hear me out.

Prior to getting pregnant, right around the time that I started having these major anxiety attacks my periods started becoming weird. I started spotting for 3 to 4 days prior to EVERY period. The first few times it happened I just kind of blew it off, no biggie, just an odd cycle. But then it happened prior to EVERY period...and we weren't getting pregnant. I finally had my hormone levels drawn and my prolactin came back at 40. Normal for a non-pregnant female is 0-20.

My family doctor suggested that I may have a small tumor on my pituitary. These benign tumors can cause increased prolactin levels. Prolactin, in case you can't guess, is the hormone that causes lactation...and generally stops a woman from menstruating and hence from ovulating. My prolactin levels were not nearly THAT high, but they were abnormal. My doctor said that while we could do an MRI to confirm the pituitary tumor, the blood test was actually more sensitive and she suggested that I just start taking the medication to bring my levels back down to normal. My doctor told me at the time, that these tumors are generally for life, so I might need to take this medication indefinitely when not pregnant. So I started the meds in August or September of last year and was pregnant by November. But my periods never really evened themselves out. I was still getting pre-menstrual spotting even up until the day that I got my BFP.

I thought at the time: oh well, problem solved! Take that, pituitary tumor!

But then my placenta was weird, my blood work was weird, I had a lot of bleeding, I had no fluid.

Then he died.

Dr. K. at my follow up appointment suggested that it could have been the pituitary tumor that caused the hormonal imbalance and led to a build up of 'endometriotic tissue' in my uterus. Not the best place for an embryo to grow. He says I should follow up with my family doc about restarting the medication to ensure that I'm back on track.

Flash forward three months from Aidan's death and I'm at my family doctor's office. She redraws my prolactin levels and both of us are fully expecting a high level and a need to restart the meds.

Only now my levels are normal.

There may have never been a tumor at all.

The only difference in my body between now and last fall is that I'm not stressed, so I'm sleeping. I'm sad, I'm grieving, but I'm sleeping. I'm sleeping well, because I'm not under the pressure of work.

So now I have to wonder...did worrying kill my son? Did the fact that I stressed myself out so much cause me not to sleep, which threw off my hormones terribly, which caused a build up of crappy tissue in my uterus, where my son's little embryo implanted and got chewed up, that caused all the bleeding, that caused the preterm premature rupture of membranes, that caused his death?

Would it really have been all okay if I could have just stopped stressing? Would I instead of being 15 weeks past Aidan, be anticipating his arrival in just a matter of days?

Could the 'power of positive thinking' really be that powerful?

This really started out as a post about how stressed I am about going back to work. And I am...I'm afraid of slipping back into that routine. Of being nervous and stressed and not sleeping and trying to keep it all together. I can't go back to being that person. I can't. It will kill me.

It may have already killed my son.

Tuesday, August 3, 2010


We spent the Labour Day long weekend at the cottage with my parents and my grandmother. We had a good time, although the weather was not as good as it could have been. I like hot and sunny...it was more like "warm and hazy, with the occasional cloudy period". Still...the cottage is the cottage no matter what the weather.

Spending time with my grandmother can be difficult. I feel like I don't know her anymore. She is 84 years old and has Alzheimer's. She does quite well physically (other than being legally blind and deaf without her hearing aids), but mentally she is no longer there. She has retained some of funny phrases and is generally quite good natured, especially when surrounded by company and good food. She doesn't wander and she still likes to be of help and can contribute by doing things like sweeping and drying dishes. She remembers some things...but most are lost in the fog of her brain. I think she knows we are her family...but if you asked her my name she probably wouldn't remember. She repeats her self a lot. She worries about things that are small and seemingly insignificant. She is no longer the person I knew growing up.

This is hard, because there are some things I would like to ask her. One of which is about how she survived, and carried on with her life after the birth of her stillborn child over fifty years ago. I don't even know if this child was male or female. I don't know if she had a name picked out, or what the circumstances of the pregnancy, death and birth were. I don't know how far along she was, only that she was 'quite large' and had to birth the dead child. She told my mom about it many years ago...but shared only that it had happened and not any feelings or thoughts she had about the event.

Did she get to hold the baby? Did she think of the baby constantly for months afterwards? What did she tell my dad and my uncle when she came home from the hospital without their sibling? Is the dead baby the reason they adopted my aunt afterwards? Did my grandmother and my grandfather not want to risk another dead baby? Or were they told not to have anymore? Did they have a funeral for the baby? What day was the baby's birth? Were they told by the doctors, by friends, by family to just move on? Did she cry? Did she miss her baby?

Does she still miss her baby?

The two of us were sitting on the deck, looking out over the lake on Sunday morning. No one else was around and we got to talking about children. I reminded her that she had children, two boys and an adopted daughter. And then I said "you also had a baby that died". I wanted to see if she could tell me anything about this lost aunt or uncle of mine.

Her response: "Did I? I don't remember that".

She doesn't remember the baby that died. She doesn't even remember the births of her sons, and as far as I know, never asks about her adopted daughter, who died almost three years ago. Her mind has swallowed up the pregnancy, the death and the birth of the baby who died. It vaguely remembers the daughter who she adopted and called her own for 45 years. She can only remember the living because they are constantly around. If she didn't see us on a regular basis, we would be gone too.

I wish I had known to ask her about her babies, the living and the dead, when she was still well. I wish I had known that it would be important. I wish she had the ability and the desire to share with me the things she had experienced and how they had shaped her. I wonder if she would have shared those memories with me? I want to ask her so many things, but I can't. Maybe there is so much she wants to tell me. But she can't. And never will.