Thursday, February 13, 2014

Winter Memories

The winter Olympics are on again.  4 years ago I watched Canada win a slew of gold, silver and bronze, cheering from my couch.  I was on bed rest, pregnant with Aidan, (fairly) confident my subchorionic hemorrhage would soon be a thing of the past and our baby would arrive safe and healthy that summer.  I didn't know that it was already almost over, that my water had broken, probably (in hindsight), on the morning of the Olympic opening ceremonies.  

As exciting as the Olympics are, I'm almost glad we no longer have cable and I can't sit around and reminiscence.  The memories of that shiny hopeful time are almost too much to bear.


Last June for our anniversary, Brian and I went to the cottage for a weekend away.  It was cold and rained the entire time, but no matter, we could sit and read and drink tea, cozy under blankets with no toddler present to interrupt the quiet.  It was a nice weekend away.

On that weekend as I was feeding the wood burning fireplace more newspapers, I stopped to look at the obits, a morbid habit I had as a child which still draws me on occasion.  A name jumped out at me.  It was a beautiful Irish name that I had always considered for a girl, but which I don't know if I could actually use due to the absolute butchering it would inevitably receive here 'across the pond'.  The last name jumped out at me a second later.  It was the same last name of the Irish-accented doctor who initially saw me at the high risk pregnancy clinic at 13 weeks with Aidan.  He told me the SCH would 'likely bleed out and be fine'.  4 weeks later, in March of 2010, when it was apparent that no amniotic fluid surrounded our baby boy, he had to tell us the outcome was now 'extremely guarded'. 

I came home from the cottage and looked it up on the internet, finding a picture on the funeral's memorial page of the two of them to prove it.  

Dr. R's daughter died last spring.  She was 22.

I think of him now. It's been 4 years since that hopeful February visit when we left his office, only to leave crushed a month later. I wonder how he's doing.  Does he think of his child every day too?  Does he wish he could see her again, just one more time?  He had so much more time with her than we had with Aidan...does that make it easier? Harder?  Does his recent loss change the way he delivers bad news?  Do the sad eyes of the parents remind him of the awful feeling in his gut when they told him his daughter was dying?

I hope Dr. R. is doing okay.  Or at least, as okay as you can be 9 months after your kid dies.


Back before my recent health issues (which so far seems to have stabilized on brand spanking new meds), I was precepting a new nurse at work.  As I may have explained before, it basically means she works my shifts with me and I teach her the ropes of being an NICU nurse.

One evening on our break we were sitting over tea, and I was asking her about her family.  She is in her mid twenties and has a sister 5 years younger.

My dead baby radar started pinging, and I probed "that's quite an age difference between the two of you".

"Oh yes", she explained, "there was another daughter in between us...she was born early and died".  She went on to say "Actually I was a twin...I had a brother.  He died early too.  My parents don't talk about it, even though I've asked since starting work here.  I mean they know what I do, that I work with sick babies.  I'm sure they understand why I might be curious...  I'm not sure why they don't want to discuss it".

I felt sad for her, as she obviously wanted to know more.  I don't ever want that to be Kaia.  I'm glad at 2 and a half she already knows that I wear an "Aidan" necklace and that one of the pictures up in her room is of him.  I don't ever want her to feel like he's a secret, a sadness to be covered up, too painful or horrible to be spoken about.  I want her to know that he was part of our lives and is never forgotten, and that I am happy to be his mom.  He's not's just sad that he's not here.


This week marks 25 years since my Fontan surgery which saved my life.  It's also Congenital Cardiac Defect Awareness week.  So Happy Valentine's Day everyone.  Cherish your hearts.

Wednesday, January 29, 2014

Hearts and Stars

Things have been difficult around here.  Brian and I were both sick over the holidays and into January with colds, strep throat and a weird virus resulting in body aches, fatigue and a nasty dry cough.  I have literally not felt myself since December 16th.

In the midst of all of that I have developed SVT, a cardiac arrhythmia where your heart speeds up to high rates (mine goes to 170s) out of the blue.  My longest run was about 15-20 minutes.  I don't feel ill during them, but they are very scary. 

The results has been two calls to 911 (once while I was at work...scary and humiliating all at the same time) and multiple doctors visits over the past couple of weeks.  On the one hand good news: so far the Electrophysiologist (a specialized cardiologist who deals with irregular heart rhythms) thinks that I have a 'simple' type of SVT which responds to vagal maneuvers (coughing, bearing down, gagging) and which is less likely to result in a blood clot forming in my heart. So instead of starting TWO medications, I only have to start one: "just" a beta blocker, rather than a beta blocker AND an anticoagulant.  So far.  My cardiologist seems like she might push for the blood thinner anyway: "just in case".  The beta blocker is bad enough...I feel like I'm drunk without the fun factor, although I've been assured this feeling dissipates.  Blood thinners mean a blood test every month for life.  It's not the needles that bother me, its the hassle. 

The bad news of course is that I'm scared.  Scared like I was when I was pregnant with Kaia and I had no idea what the outcome was going to be, but knowing how bad it could get. 

Is this a small hiccup in the life of my heart, easily controlled with meds?  How much is this going to affect my life?  Will the SVT episodes stop now that I'm on meds?  What's next? I've lived with that question all my life.  It's not "If" I'm going to start to have problems with my heart but "When", made exceptionally clear to me in the summer by my new cardiologist.  Will I be able to work?  Travel?  Raise my daughter in an active way?  This last month of sitting on the couch feeling sick has been difficult with a toddler (who by the way, was healthy as a horse the whole time).  I feel weak, fragile and sad...and I'm not sure how much of that is my body and how much of it is mental.  I'm a worrier.  I worry a lot.  I've worried about my heart my whole life, and have to work very hard to 'shelve' that worry and get on with it.  It's easier to do when you're not confronted with the reality of it all as I have been this past month.

Right now I'm off work pending a meeting with my cardiologist on the day before Valentine's Day.  Coincidentally Valentine's Day is also Congenital Cardiac Defect Awareness Day (get it: hearts!), and also marks the week that I'll have been 25 years post Fontan (the major surgery I had at age 6 to improve my cardiac function and make it possible for me to live.  Apparently only 60% of Fontan patients are alive 25 years post Fontan, so go me!).  I'm hoping between now and then, with a few weeks off work, getting settled on this new med, and (hopefully) not having any SVTs, will help my mental state (if not our bank account).  I just want to feel better again.


In the midst of all of this, Kaia has been our shining star.  She's a toddler and as such throws daily tantrums and freak outs...but in minutes she is back to hugging and giving kisses.  She's talking a lot more (and giving more commands including: "Mommy, Daddy, Kaia go play, then watch Mickey Mouse!"  Okay!").  Mickey Mouse is her new favourite.  She's into the Play-Doh, Lego and loves throwing and kicking balls around our house.  She loves baths, although mainly the splashing part, not the hair washing.  She loves "pushing buttons", where we sit at the computer with her and open a Word Document file and allow her to push all the computer keys.  Kaia loves games involving numbers and letters. She knows all the letters and counts up to 13, misses 14 and 15, and then says 16. She loves puzzles and music and dancing.  She can now sing parts of "Jingle Bells", "Twinkle, Twinkle Little Star" and "The ABC song". She still (in almost February) says "Merry Christmas" to people upon leaving and points out any Christmas lights that are still up around the city.  Kaia started to potty train, which due to the above mentioned circumstances, we are being pretty lax about.  She wears a pull-up when we go out and during naps and a diaper to bed, but while at home she goes diaper free and has been very good about using the potty.  I think by the spring she'll be in underwear during the day even during outings.  

Kaia goes to gymnastics once per week and although she seems to enjoy it, her lack of flexibility and balance is noticeable.  She's a very cautious kid too, so that doesn't help her push her limits. She still likes to hold my hand when jumping down from any height beyond 2 inches, whereas other kids her age are literally leaping off things a foot high or more.  However, one aspect of Kaia's personality seems years beyond her age.  She is incredibly sensitive to anyone's sadness or pain.  In gymnastics there are 'stations' and groups of kids rotate during the hour long class.  If another kid, anywhere in the room is crying, Kaia immediately stops what she's doing and wants to go over and investigate, inching her way closer to the one who is crying saying "Mommy, baby crying!" (anyone who is crying is "baby").  It's really noticeable in a room of 30 or 40 other kids who don't even flinch when they hear someone wailing.  I'm pretty sure if the crying kid's parent weren't there, she'd go over and pat him or her on the back.  It's a very sweet, sensitive and loveable trait and makes me very proud of her for being so caring.  

She would make an awesome big sister.  

If only things were different. 

Tuesday, December 10, 2013

Missing You

So it's December.

I spent the month of November getting together all of the things I need in order to apply for my Master's program for the Fall of 2014.  Writing letters of intent, asking for references, getting transcripts, updating my CV, busy, busy, busy...  

Sometimes if I think really hard about it, I can get excited about the idea of moving on (up?) in my career, working towards a plan that I've had since I was in nursing school...

...but, lately I can't get the sad, unhappy, disappointing parts of my life out of my head.  I think about Aidan a lot.  I think about Kaia's pregnancy.  I worry about my heart.  I'm sad it's looking less and less likely that there will ever be another baby in our house.  In my head, school looms as the end point. Time to move on.  I feel I'm being dragged, kicking and screaming.

Friends, family and colleagues have asked if we are ever going to have another baby, and I give them all the same answer of "well, after two difficult pregnancies, and one loss we aren't sure it's a good idea..."  Everyone always nods knowingly and agrees it's a big decision and perhaps not in our best interest.

I almost never tell anyone that we've tried....for over year...and failed...  At this point, I find our (mine? his? our?) fertility, or lack thereof harder to talk about than my dead child.  I could chat about Aidan almost any old time, and do to anyone who asks.  Because that sadness, that failure, is old.  His death has  healed over somewhat.  The (likely) loss of Third baby is a new sadness, a new disappointment.  It's still happening.  

Every. Goddamn. Month.


What also screws with my emotions on the subject is that every month, along with the feelings of sadness and disappointment, is, well...


Relief that this isn't the month that I have to start to worry.  About every little twinge.  Any speck of blood.  Any more strain on my heart.  Both literally and figuratively. 

I also feel sad about the relief.  Because maybe it means I really don't want another baby THAT badly.  If I feel relief about not being pregnant, maybe it's only the newness, the wonder, the excitement that a new baby provides that I crave, and not really the baby itself.  There is also relief in the relief...because maybe if I'm relieved now, in 10 years when the possibility of ever having another child is long since past, maybe I won't feel so sad.

Then the guilt comes.  Guilt for not trying harder to fix whatever it is that's wrong.  For denying Kaia the chance at a (living) sibling.  For denying the grandparents the possibility of another grandchild.  For failing both Brian and myself.  We both want why can't we just suck it up and forge ahead. Tons of people do.  Make that RE appointment Emily...just do it.

Then the niggling doubt.

Maybe it's not happening because it's not suppose to.  Maybe your heart wouldn't tolerate it this time.  Maybe it wouldn't be the redemptive pregnancy you dream of.  Maybe it would be a new kind of awful? Or maybe the Breus mole and pPROM (TWICE) isn't a fluke.  Maybe your genetics just suck and it's time to count your blessings and move on. 

Maybe if it happened, you would wish it hadn't...

Then the wondering if we should consider other options.  Adoption?  Surrogacy?  

Both of them seem so far removed from anything I could ever imagine us attempting.  The time, the money, the never-ending hoops to jump through.  Most importantly the wearing of our hearts on our sleeves.  I learned through our experience with Aidan and Kaia that when things get emotional, Brian and I tend to curl into ourselves, praying for privacy and space.  Could we ever make it through either of those processes, laying our hearts bare for strangers to see?  I see it turn out well for people...but what did it take to get there?  What number of sadnesses lay just beneath the surface?  Plus we already have a living child, so it's difficult to imagine anyone with either a child or a womb to donate picking us over the thousands of others who admittedly, probably deserve it more.

Both adoption and surrogacy seem like amazing experiences...that only occur for other people.


All of this is just background noise.  My daily life consists of a healthy two year old who is thriving.  A good home.  A happy marriage.  A supportive family.  An engaging workplace.  

Aidan is missing, of course.  He will always be missing.  He was a real person who had a name and a story, no matter how short.  People are generally understanding when I say I miss him.  When I think about him.  When I wish he was here. 

But now, I feel like Third baby is missing too.  A person no one ever saw or imagined.  Who has no name. No gender.  No story.  Who never was.  Maybe the hardest part is that I get the sinking feeling that if he or she never materializes, I will miss Third baby in the same way I do Aidan.

And no one will understand.

Friday, October 11, 2013

Happy Birthday?

So today I turned 31.  


so did my eggs.


At least I have this perfect little egg to wish me "Happy Birday Mommy!" because everyone knows two year old kisses are the best!

Happy Thanksgiving to all my Canadian peeps!

Sunday, October 6, 2013

Kiss it Good-bye

So this friend of mine (mentioned in this post), has one daughter who is a year older than Kaia.

We were talking the other day and her daughter is going to be sent to see (yet another) specialist at the local children's hospital.  It's probably not serious, but it's another medical specialist to be seen and another issue to be dealt with.  So she remarks to me (again), that this is now the final thing that means her and her husband won't be having another child.  She jokingly said "we aren't even finished fixing this one up yet!"

While part of me laughs and totally gets that it sucks to have yet another medical issue crop up after years of dealing with one thing after another, another little part of me (probably located somewhere near my congenital cardiac defect...right next to my dead baby) feels a little miffed.  Yes, not everyone is born don't it?

Then my friend says "we are considering having [insert her husband's name here] go for a vasectomy".  


My immediate question was whether her husband is as solid on not wanting any more kids either.  Her answer was that he would have another one if she wanted one, but since she doesn't, he's fine with that.

Perhaps because I play the 'what if' game with myself all the time, I immediately began thinking of scenarios in my head.  

a) What if my friends divorced?  This happened to a friend of a friend of mine.  He wanted another.  She was done with two.  Hubby went for a vasectomy and then his wife left him...for another woman (pretty sure there aren't anymore kids in this woman's future). This guy, who is still young by anyone's standards, could remarry and have more kids, but now he's sterile.  Needless to say, he is beyond pissed.  It also happened to my cousin.  He and his wife were done at three.  Then they divorced.  He went on to meet another woman, got a vasectomy reversal (In Canada: free to go sterile, $5000 to undo it) and they had another child together.  Then, because of their ages, he got it done again.  I guess everyone has their limits when birth control becomes that big of a hassle that one no longer wants to even have to consider it anymore, but in my mind you BOTH should be REALLY REALLY sure.

b)  What if my (female) friend died?  As an example, my mom, after she had my younger brother, was told not to have anymore children due to possible risks to her health.  When I was about 6 and my brother was 3, my mom got her tubes tied.  She had two and was happy with that. Although it's more of an invasive procedure for the female to get sterilized, her reasoning was that out of the two of them, SHE was the one who couldn't have more kids, so why take that possibility away from my dad, if anything should happen to her?  In our case, this would be my decision too, since I'm the one with the heart defect.  In my opinion since my friend is the one solidly not wanting anymore kids, maybe this should be a decision (and a surgery) that she takes upon herself, and doesn't put on her husband.

c)  What if (and this of course hits close to home), their daughter died?  Their daughter's medical conditions have, so far, never been life threatening in the extreme, but what if something else is around the corner?   I worry about this all the time with Kaia, because I know the devastation of loss. The loss of an only child is not only the loss of a child, but the loss of one's parenthood. It's one of the things that weighs heavy on my mind, knowing I may end up having an only (living) child.  I know my friend worries about the possible medical complications in a second child, that they could be worse than her first, but I don't know if she's ever thought about the loss of the one she has.  I don't know if I should even bring it up because no parent ever wants to think about that.  Plus, if they really DON'T want anymore children, does the outside chance of future loss outweigh their current desire for only one child?  In my mind, death is always something to consider.  In theirs, maybe it's not.

It, of course, also stings that while Brian and I are trying to have another child, despite all the complications we've faced and could face in the future, friends of ours who are exactly our age, with exactly the same number of (living) kids (only one!), are preparing to kiss their fertility good-bye.  

I dream of the day when my family is exactly the way I want it.  It will always be minus Aidan, but I wish it didn't have to be minus Third baby too.  I would be so nice to no longer have that twinge when I pass a pregnant woman on the street or hold a snugly baby and wish it was mine.  If only I could watch Kaia and her sibling play and interact, and have a child on either side of me when I read stories at night.  It would be so nice to feel a sense of completion.  I'm afraid I'm never going to have that.

Some day (far in the future?) we might have the sterilization conversation too...but not yet...definitely not yet.

How do you know when you're done with having children?  If you're there, what made you decide?

Wednesday, August 14, 2013

The Clomid Experience and PVCs

So yeah, not pregnant.  Not even a little bit.  Crickets chirping over hear.

Back in June, after two months in a row of my Clear Blue Easy Ovulation monitor reading "High" fertility for many days, but never registering an 'ovulation' day, I decided that I must be more fucked up in the reproductive department than I realized.  I figured if we were truly trying to make a go of conceiving Third baby, I better get my ass to the doctor stat to figure out plan B (but not ya'know the medication of the same name, as that would be counterproductive).

My doctor immediately upon hearing of my ovulation woes, decided to give me a script for three rounds of 50mg of clomid, the 'go to' medication for ovulation, stating if that didn't work she'd up it to 100mg.  Instructions: Take on days 5 to 9 of your cycle, watch out for mood swings, hot flashes and sore boobs. Come back if you're pregnant.  See ya, good luck!

Later the same week after taking the Clomid for the first time, I had my cardiology appointment, which completely scared the shit out of me, and made me question whether or not having another kid was such a good idea.  I mean, if supposedly my heart is going to need a new valve in < 10 years, is it really smart to stress it out with yet another (possibly screwed up, but hopefully not!!!) pregnancy?  Plus what if another baby compromises my health even more than a new valve could fix?  I desperately wish for a sibling for Kaia, but not at the expense of her not having a mom.  I figure moms are kind of important too.  

But, I really want another baby...I really really do...

So with all this muddling around in my brain, the time of ovulation arrived...and I started to have PVCs. PVCs for you laymen out there are basically when your heart skips a beat, or seems to pause for slightly longer than normal, and then seems to 'thunk' or contract harder than usual, and then continues beating as normal.  Sort of like a heart 'hiccup'.  They generally aren't dangerous, and happen to lots of people with normal averages hearts, but they are a bit unnerving.   I've mentioned these occurrences to my cardiologists before, and these skipped beats have been picked up on my 24 hour ECGs (Holter monitor), and nary a fuss has been made about them, so I've never really concerned myself too much.  But during this Clomid cycle, all of a sudden they started happening multiple times per MINUTE.  I go from noticing one every once in awhile (hours often days apart) to literally being able to sit there and count them....1........2......3.....4.....

It probably didn't help that I had a cold at the time, so I was ill on top of being hormonal, but HOLY SHIT it was scary as I lay there in bed feeling:
beat...beat...beat........THUNK....beat....beat...beat...beat.......THUNK.....  I hauled out my stethoscope and had Brian take a listen.  Even he thought my heart sounded weird.
The Google research I did supported my supposition that it was the Clomid causing the PVCs as others with normal hearts report having them, plus the PVCs stopped after the ovulation period was over, when I assume the meds quit working.  The entire experience scared me enough though that I haven't taken the Clomid again.

So we are back to the rock and the hard place....if I'm not ovulating regularly or strongly on my own then pregnancy is unlikely to happen without further assistance, AND I can't take Clomid, which is the only fertility medication my family doctor feels qualified to prescribe me, BUT Brian isn't too keen about returning to the reproductive endocrinologist, AND I'm freaked out enough about getting pregnant again due to my own health issues, PLUS it seems stupid and foolhardy to pay $$$$ to get pregnant with possibly (but hopefully not!!!!) disastrous consequences....

HOWEVER we really, really want another baby.....and I feel guilty that I'm unable to provide Third baby for my family.  I worry Kaia will be the only (living) grandchild on my side of the family as my brother and his girlfriend seem in no hurry to reproduce.  My parents love Kaia so much, I wish they had lots more grand kids to spoil.  I worry that Kaia will never have a sibling and this will somehow damage her for life.  My brother was the best present my parents ever gave me and I can't imagine my life without him.  I feel badly that if Brian had married someone else, he might have that 2+ kids he would like.  I'm just sad.  So tired of this being an issue. So tired of feeling like my body is failing.

I feel as though our hopes for Third baby are circling the drain.

I'm so tired of caring about this.  I wish I didn't care.

But I do.  

So much.


It's not helping that tomorrow, August 15th, is Aidan's third anniversary due date.  A day that means both nothing and everything.

He would/should/could have been 3.

I wish you love, my son, on this, your 3rd non-birthday.  Today and every day.

Monday, August 12, 2013

Right Where I Am: 3 years, 3 months, 3 weeks and 1 day

Once, I read an article describing the experiences of people who have regained the ability to see after a lifetime of blindness.  After relating to the world without sight, depending on all of their other senses to guide them, these people found it hard to assimilate the visual sensory input.  For example, seeing an apple.  You and I would immediately know what it is, just by looking at it.  Those who were blind, would not know what the object was, until they picked it up, felt its roundness, smooth skin, smelt it's apple-y smell, or tasted it's juicy flesh.  They had no idea what an apple should look like.  They had no visual reference for anything.  It was only over time that they were able to begin to make sense of the visual world.

Over 3 years out now from Aidan's death and I feel as though I have the opposite of this problem.  I can no longer picture what my life would look like with a living Aidan in it.  Immediately after he died, I had a running timeline of what I 'should' be doing and I could 'see' it all so clearly.  

June 2010: "I should be 34 weeks pregnant, not lifting and carrying heavy boxes helping my friends move".  I could imagine my big belly, almost feel his kicks.

August 2010: "I should have a newborn to take care of, off on maternity leave, not returning to work at a new job".  It felt like a daily surprise that the room that was to be his was empty.  How could he not be here? 

December 2010: "I should have a baby to take to this family Christmas party, instead my arms are empty".  Watching my relatives coo and awe over my cousin's baby who was born in July 2010, I felt angry when the first present of the night was handed out to her, the 'youngest'.  That gift, that title, should have been Aidan's.  

April 2011: "It's a year since he was born...if he had lived I would be planning a 1st birthday party".  But instead I was on bed rest again, agonizing over the fate of baby number 2...and wait a minute, he should have been born in August and would really only be 8 months old...and I likely wouldn't be pregnant again, and thus not concerned about baby number two...

Then Kaia arrived, and the timeline of the way life 'should' have been was permanently altered, because likely she wouldn't be if he was...and how could I see anything else but her? The farther out I am from his death, the harder time I have imaging what life with him should look like. Over time I have slowly gone 'blind' to those should haves.  I've lost reference to what my life with him would have been.  Most days my life is filled with who and what is...not who or what is not.

Yet as I lay in bed at night, quiet, in the dark, I so often think before I drift off to sleep: "I miss you Aidan.  I wish you were here".

He truly never goes away.