Awareness

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

I went back to my FertiltyFriend.com 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...what 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?

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.

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?

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.

Attempting to feel grateful

So....I got the job....I start August 9th....6 days before "Baby B. due!" is marked on my calender.


I'm attempting to dredge up some excitement here. I really am.


I really hope I can fake it until I make it.


Keep repeating phrase: be grateful you don't have to go back to the NICU...be grateful you have a job to go back to....be grateful you had this time off to grieve for Aidan and for yourself...must move forward...move forward....move...


So in honour of my attempts to 'feel grateful' I decided to write down what I am grateful for about our time with Aidan. Please be warned...some of these are things that you my fellow readers, did not get to experience. By making a list of the things that I am grateful for, I don't in anyway mean to hurt you or put you down, or make it seem like my experience was 'better'. But today, I just feel I have to catalogue the few remaining scraps that I can call my own.

1. I am grateful he was born alive. I cling to the 54 minutes between the time he left my body, to the time the nurse said she could no longer hear his heartbeat. While he was alive, he made only the barest attempt to gasp according to the nurses who assessed him. We never saw this. My poor son's lungs were like dried up raisins...unable to expand to pull in any air. (Amniotic fluid people...it's important for more than just 'the black' on those cute ultrasound pictures...it's essential for lung development!). Although he was alive, I never saw him move. He never opened his eyes (one was still fused according to his autopsy). He might as well have been born dead...but I love that he wasn't. That he was alive for even just a few minutes is important to me because of the WEEKS of my pregnancy that I spent so worried I was killing him slowly with every move I made. Every bit of blood I passed. Every tiny twinge of my uterus. I kept wondering "is this what finally cuts off your blood flow?" I was so worried since the time we were told my placenta did not look 'right' at 17 weeks that it would slowly starve him to death. I checked every two days for a heartbeat with my doppler, lying on my couch at home. I did this away from my husband so that if I didn't find one he wouldn't have to 'not hear it' too. I was so glad when Dr. K. told us at 21 weeks and 5 days that the blood flow to Aidan was uncompromised and that he was growing appropriately. I remember clearly Dr. K. saying "well he won't die in your body". It provides me so much relief that just ONE thing went right. I had a son. He was born. He lived. He died.

I cannot remember what I said when he was placed on my chest during those few minutes after birth. I was in pain. My blood pressure was low. I hope it was "I love you".

2. I delivered him without assistance or pain meds and my heart didn't give out. This is one very personal to me. Most women worry during pregnancy about the pain of labour. Some even come out of it saying "Oh I was in so much pain...I thought I might die!!" And while I appreciate that...I actually thought I might die. I had been told I would *need* an epidural, I was not to push, things should be very controlled and supervised. Ha. I remember being rushed down the hall to the delivery room from triage and someone yelling at someone else "go and get an RT (respiratory therapist)". My thought "is that for my baby? Or are they worried I'm going to code and need to be resuscitated?" I am SO grateful that my heart didn't give out on me or Aidan. Thanks heart.

3. I am grateful Aidan looked like my husband. This is not because my husband is so good looking I'm glad our child resembled him (although he is)...I'm just glad it was SO obvious that Aidan belonged to US. Some of the babies I have looked after in the NICU don't really resemble their parents all that much (at least not that I can tell), and I must say I have (white) lied on occasion when I fully agreed with a patient's parents, "Yes...your son looks JUST like you! You can totally tell!" Now maybe a stranger looking at Aidan wouldn't be able to tell, and would lie to me and say they could see the resemblance...but I can, and that's all that matters.

4. I am grateful for the one completely beautiful picture we have of Aidan before he started to look dead. It is the one posted above. He looks perfect. You can't even completely tell that he is dead in that photo or really even how small he was. I love looking at that photo. I love that he looks peaceful and content. I worried during my pregnancy that the lack of fluid was deforming him so awfully he wouldn't look normal or even recognizably human. He did have club feet in the end...but even that was kind of darling and barely noticeable. If he hadn't looked 'normal' I would have loved him anyway...but it gives me such pleasure that he was cute!

5. Aidan proved we are fertile. I had fears last year when all the couples we knew got pregnant on the first or second try that "oh my God...is there something wrong with us?" We even had a few medical tests done which pointed in that direction. I was preparing to go to my doctor's to demand a further work up and was counting down the months until we could be referred to a Reproductive Endocrinologist. (You're supposed to wait for a year of trying). It never came to that. Maybe if it had, they would have seen what was wrong with my uterus and could have prevented my first pregnancy ending up the way it did...but maybe not. I know of course we could have 'secondary infertility'. I know it's something we all worry about...but I'm trying just to let go of that. I can't change it or prevent it. If it comes to that, we'll deal with it. So, thanks Aidan for showing mommy and daddy that our reproductive organs aren't a complete let down.

6. I suppose I am perversely glad I had a really rocky pregnancy with him. This one is the most bittersweet for me and the most complicated. I am glad because in the next pregnancy (as always...assuming there is one), if it starts out with better HcG levels and no bleeding by week 5 I will already feel somewhat more hopeful about it. The pregnancies I hear about that are perfect and end in a still birth at 37 + weeks always just make me so sad for that family's next pregnancy...because you know they are going to spend 9 months fearing history will repeat itself. If I could avoid rushing to the ER with dried blood streaks down my leg in my first trimester then hey...that's already an improvement from pregnancy #1. Of course, we all think the SAME bad thing is going to happen to us. The woman who miscarries all previous pregnancies prior to week 8, breathes a sigh of relief when she reaches week 9. The woman whose baby is delivered prior to 24 weeks, celebrates when she passes the viability mark. The family whose full term baby is born still, cries with joy when they hear a wail emerge out of the next. The family whose baby dies of SIDS holds their breathe until the first year is over...praying their child wakes up every morning. I know that something totally new and equally awful could happen to us and our (theoretical) baby # 2...but it gives me some measure of comfort to know that things were abnormal for me very early on in Aidan's pregnancy. So if things initially look okay the (hopefully) next time, there is no reason to think they won't continue that way.

Aidan's pregnancy...well it sucked. It was scary from beginning to end. There was only maybe a few weeks in that whole time where I felt that we might actually get a baby out of it. A part of me grieves this too. As an NICU nurse I knew what could go wrong during a pregnancy. I was not unaware that babies died...but I had hope that maybe, once I was pregnant and things were fine, I might relax...go with the flow. It never happened. And now it never will. I will never be a carefree pregnant woman. I will never reside in the land of "when". I will forever be stuck in "if". But I am grateful that now even that doesn't seem so bad. Yes, I have never and will never be the happy naive pregnant lady, but that's okay. I got Aidan instead.

Can you think of anything, even one teeny tiny thing you are grateful for about your pregnancy or birth or what happened afterward? I know, I know, the baby being dead totally overshadows all the rest...but work with me here people. We're being *positive!* today.