Thursday, August 28, 2014

Right where I am: 4 years, 4 months and 1 week.

It's all about to change again.  I start school on Tuesday.  I'll be a full time student, a part time nurse, a full time mom and when I get the chance, a wife, cook and housekeeper.  I'm exhausted and stressed just thinking about it.  People keep asking me if I'm 'excited' to start school.  I guess I could just say yes, but since I'm generally honest to fault, I have to say "I'm excited about being done!"


It still burns.  The desire to have just one more.  The desire to have two living children, to complete our family, is intense but I'm coming to terms with the fact that it isn't going to happen.  It feels as though the time has passed for us to even consider it.  I'll be in school for at least 2 years.  I have a child to look after. Money is an issue with me only working part time. I cannot imagine the added stress of a pregnancy on top of that. Happiness, but also the intense fear that would accompany two pink lines. We've tried (or rather not prevented) for over two years.  If it was going to would have.  I don't know what to blame it on. My crappy uterus? Eggs? Hormones? Brian? Who the hell knows at this point. The miraculous stories of couples who have been infertile for so long, suddenly conceiving without any intervention at all, linger at the back of my mind...but then I remember I already used up my pregnancy miracle with Kaia.  One cannot have all the riches in the world.  I will take mine and be grateful.


The sadness over Aidan is still there of course.  It will never go away, and at this point, I would miss the missing of him. I also cannot deny that I appreciate that his death cracked open something inside of me.  A well of strength I didn't know I had.  An acceptance of things I cannot change.  An ability to abide with other's sadness.  I don't know if others have noticed or appreciate this change in me, but maybe that's also part of it. I care less what other people think. I worry less over how I parent my living child. At the end of the day, if she's happy and healthy, then I've done my job, even if she didn't eat all her vegetables or had three meltdowns before lunch.  I am better able to accept defeat or mistakes in myself.  I cannot win them all.  I will miss him forever, but sadness is a part of life and I am not so special to think myself immune.  I have a sense of peace about his death, but I can also acknowledge that that peace will ebb and flow. I may feel his loss, or the jealousy or the unfairness more strongly at times than at others, but I know now I will regain my footing and be able to continue on.  I have lost from his death, but also gained.  It do not see this knowledge as a consolation prize, but rather my life taking a different path.  I would have learned different, but no less important things, if he had lived.


I miss him, but the missing is now part of the love and I can no longer separate the two.

Where are you?

Friday, August 15, 2014

Triple threes for the fourth one

I just realized that Aidan has been gone 4 years, 3 months, 3 weeks and 3 days.  Since it's once again the anniversary of his due date, that means he was born 3 months, 3 weeks and 3 days too soon at 23 weeks and 3 days.

I guess bad things really do come in threes.


Still thinking of you my son on what should be your (approximate) 4th birthday.  

It would have been great.

Wednesday, July 9, 2014


Birthday that is.

Kaia is three!

I get all nostalgic at this time of the year, remembering Kaia's birth and the days surrounding it. Yesterday I was talking with Brian doing the 'remember what we were doing three years ago'...

We were told around 6pm on the night of the 8th that 'Acorn' wasn't moving around as much on the ultrasound scan I'd had earlier that day, and that my score was only a 4/8 on the Biophysical profile, which made my doctor decide that I'd be having an urgent C-section within the next 24 hours.  Funny how that was the ultrasound I had to push for. I remember them telling me that morning that pPROM moms usually only had weekly ultrasounds, not twice weekly, but I insisted, not because I thought anything (more than usual) was wrong, but because I just wanted the piece of mind going into the weekend.  At the time, I wondered if they were jumping the gun with the C-section, worried about having a 32 week preemie, but I was also relieved to get things moving, fearing every day that something worse was going to happen (bleeding! cord prolapse! infection! Oh my!)  I don't know if anything bad would have happened if we'd left it to the next week, but in hindsight, I'm glad it happened the way it did.

It's a little sad remembering the actual day of Kaia's birthday.  Although she had a rocky start, Kaia did well quite quickly (thank all the stars in the sky!!!), but I was taken up to the cardiac critical care unit and didn't see her beyond the 2 seconds that they showed her to me over the drape and the photos Brian took on his phone.  At the time I didn't care (much) that I didn't get to see her, because I knew she was in the NICU and that's where she needed to be (and hey, my kid was ALIVE, so that was a giant step up from the last time I gave birth...), but it makes me a bit sad now to think "God, I didn't spend any time with my daughter on her actual birthday'.  No snuggles.  No hugs.  No kisses.  Just love and positive thoughts from 5 floors up.

We made up for it today on birthday #3.  I basically let Kaia dictate the day and we spent all of it together. We had a picnic in the park.  We watched her favourite cartoon (currently: Bubble Guppies).  We read lots of books.  We took her out for her favourite dinner (chicken and rice). We went to not one, not two, but three different playgrounds. It was the type of day a three year old likes.  Minimal demands and lots of attention.

Just in case you are wondering, and because I need a place to jot them down to remember, here are some Kaia facts at age three:

-Food: peppers, raisins, rice, bread and peanut butter, cheese and most fruits and plain Timbits. Also, still loves her milk.  Both white milk and now chocolate when she can get it.
-Toys: puzzles, drawing stuff (markers, chalk), her stuffed monkey Molly, and recently her doll Carley who she now likes to rock in the rocking chair (super cute!). Loves water play and will gladly stand at the bathroom sink or in the bathtub and play for thirty minutes or more at a time. It's a bit odd, but Kaia also loves to separate EVERYTHING into colours.  She's taken just about anything that is 'hers' including hair ties, hats, stuffed animals, Lego, markers, the spongey floor tiles we had set up in the living room for her to play on, toy buckets, shirts, alphabet fridge magnets (ETC!!) and separated them into colour coordinated piles.  It's amazing to watch. For some reason she always groups the things that are yellow and orange together, and the blacks and whites together, but then has separate piles for the blues, greens, reds and purples.  Pink gets lumped in with red.  Her favourite colours right now are pink and purple, so she tends to prize anything that has those colours on it.
-TV: Bubble Guppies.  This is actually quite a cute show, and somewhat educational with lots of singing.  Over the spring she was watching My Little Pony, but got kind of sick of it, which is probably a good thing since she's a bit young for it anyway.
-Music: My mom bought her a CD of Sharon, Lois and Bram which she loves.  Favourites are Chicken in the Straw and 5 Little Monkeys.  You should see her boogie when those ones come on.
-Books: Glad to say she likes just about everything and we have moved way beyond 'baby' books and into longer stories. Kaia always gets at least 2-3 (or more) books at bedtime, so I've tried to be more proactive in getting us to the library to look for new books as often as possible.  I get bored reading the same ones over and over.
Other stuff:  Kaia was daytime potty trained around the beginning of April, and now occasionally has dry diapers in the morning, so I'm wondering how soon to start night time potty training (any ideas?)  She gets a big thrill out of using the potty and toilet at home, and at first was fine with using the toilet when we were out, but then after an couple of unfortunate incidents with self flushing toilets (HATE THOSE DAMN THINGS), she refuses to use the toilet when out.  I get that she's afraid (of the noise? of being sucked down the drain?), but it's very inconvenient so I hope this doesn't last too long.
We switched her out of a crib at the end of March, and that was a breeze.  I was worried she'd get up and wander around in the middle of the night so we have one of those child proof door knob covers on the inside of her door, but she never even gets out of bed alone.  I still hear her over the baby monitor in the morning when she wakes up and I go in and she's always laying in bed.  We've had a couple of 'falling out of bed' incidents but she always goes back to sleep quickly and they don't seem to bother her that much.  She has given up her daytime nap over the winter, but sometimes I can still get her to go 'rest' in the afternoon in her bed for over an hour.  She will talk to herself and look at books and drink her milk.  It's a good break for the both of us.
Personality:  Kaia remains a very affectionate kid.  She loves giving hugs and kisses spontaneously with both Brian and I.  She's still a cuddler.  She smiles easily and often.  She's caring, and if she hears another child crying in the vicinity, she will turn to us and say "Baby crying!!!" I hope to nurture that type of behaviour.  Kaia is strong willed when it comes to things she does/doesn't want to do and generally still has at least one crying meltdown per day over something. These are frustrating, and I admit sometimes I handle them better than others.  She gets excited about and interested in things easily, and is starting to want to 'help' more and more.  Her babysitter says Kaia regularly goes to get the younger baby's diapers and wipes when it's time to change him, which makes me both proud and sad that she doesn't have a younger sibling to help.  She is shy initially in groups, even around family members and tends to go mute at these times, reverting back to her baby grunts, whines and pointing...I swear some people probably think she can't talk yet, but as soon as she's comfortable LOOK OUT because she won't shut up!  She likes to be the center of attention once she's warmed up.

Overall, parenting has been more rewarding, more engaging, more demanding and sometimes more frustrating than I imagined.  I don't worry that I'm doing it wrong...but sometimes I wonder if I could be doing it more 'right'. Regardless, I still am thankful every day for my little miracle baby. The one I got to keep.

Happy Birthday Baby Girl.

Friday, June 20, 2014

Connecting Dots

Last month the remembrance gathering for all the parents of babies who have died in the NICU was held at the hospital where I work.  I have never attended before, usually because I don't work many weekend day shifts, but since I wasn't crazy busy and rushing back, I decided to take part of my lunch break and go down to see what it was like.

The first family that got up, I recognized right away.  Their son died 5 years ago after it was decided that nothing more could be done to ensure he led a quality life.  His parents (luckily?) got to take him home to spend time with him, which is where he died.  I remembered how, as this Mom was preparing to take her dying son home, she cried about how "all my friends who are pregnant will have their babies, but I won't have N.".

Even as a relatively inexperienced NICU nurse this statement stuck with me, and weeks later, I remember crying in my laundry room folding clothes, thinking about how this couple's life was unfolding without N.  That mother's lament, for what would never be, was the first time that I think I really understood what it would be like to go home without a baby; the never ending sense of loss.  Unfortunately, it was a feeling I would become much more intimately familiar with a year later as I mourned the loss of my own tiny son.

Last weekend when I saw this couple again, what immediately struck me was that they had a baby daughter with them...who was easily less than a year old.  They had waited over 3 and a half years to get pregnant again. Whether this was out of choice or circumstances, I don't know, but I found myself wondering what they did in the interim.  How did this Mom cope with those friends who had kids, when her son had died? Was it hard to wait so many years feeling like a 'non' parent? What made them feel 'ready' again?  Was she still friends with those she was comparing herself to all those years ago?  Because now I know, without a shadow of doubt, that when she sees those friend's children, she can't help thinking about N.

It was with this in my head that I went back to work, and met the parents of the baby I was looking after that day.  From the morning report I got on him, his mom and the circumstances of his birth, I knew that his parents had a previous loss due to pPROM at 22 weeks.  Even the acronym gets my hackles up.  As I chatted with them and walked Dad through changing his son's diaper, I saw it...the name and the tiny footprints tattooed on Dad's inner arm.  It's the dead baby parent gang sign. We belong to the shittiest club ever, yo.

I comment on the tattoo, told Dad how nice it was.  Mom immediately chimed in that she had an identical one on her arm.  She smiled.  Appeared proud.  Years ago, before Aidan I probably wouldn't have mentioned it.  You know, not wanting to remind them of their dead child and all (ha!).  Now, I know better.  It's lovely to have your dead child, and the love you have for him or her, acknowledged and remembered. 

The overlap in my personal and professional life is staggering to others.  I was an NICU baby, my son was a preemie and died, my daughter was a preemie and lived, I've worked there for many years. I don't believe in fate...but sometimes I have to wonder.

It's an odd life...but it's mine.


Do your personal and professional lives overlap?  If so, is this fulfilling? Do you wish they overlapped more or less?

Sunday, April 20, 2014

And so forth...

No I haven't fallen off the face of the earth, but things have been moving and shaking around here.  I have been accepted at my Alma mater (which I LOVE saying) for the Masters-NP Program this Fall, which means we are going to sell our house, rent for a couple of years while I'm in school, and then when I (hopefully!!!) get an awesome (well paying, life accommodating, permanent) job at the end, we will buy a new home. 

Although I am excited about this major life change and the opportunities it will open up for us, selling our house, moving and organizing our life in our new (probably smaller) abode has me constantly wondering "where is THAT going to go?" and "what do we really NEED in a temporary place, and what's a luxury?" and "if we live here then ________ will be possible, but if we live here then ______ is better".



And so forth.

It's a lot of weighing options, computer searches (rentals! childcare! local amenities!) and cleaning up and throwing out of stuff we don't use and no longer need.  I'm both excited...and exhausted...


I am preparing to get rid of a bunch of Kaia's baby clothes.  I've organized the first year's stuff, saved what I want, sold some, loaned some and donated the rest.  It's freeing.  We are a one child family, time to get rid of extra stuff, downsize and streamline into our new home!


Then, this week, my provincial government announced that in 2015 it will start funding ONE round of IVF treatment where ONE egg can be implanted at a time (to cut down on multiples) for those who are judged to be infertile.

I look at Brian....he looks at me. tempting...

Suddenly, I'm resorting my piles of baby stuff.  Maybe I will need this...?  Maybe I should hang on to that...?  What if I get rid of this and then we need it...?

Are we really done?  

Maybe it is possible?!

Sometimes hope is such a four letter word.


Aidan's day is Monday.  At the time of his birth (5:10 am) I will be looking after someone else's baby in the NICU, a place I was not sure I would ever be able to return to as I held my dead son in my arms almost 4 years ago.  I had originally thought I would always try to keep HIS day separate from the rest of my life.  A sort of non-religious holy day in our family. We planned to take time off work, have Kaia miss daycare or school, spend the day appreciating our family.  Now it's only 4 years in and I've already gone and screwed it up by mistakenly scheduling myself on either side of the Easter weekend, not realizing my Sunday night shift would fall on HIS day.  I feel bad I'm missing my own kid's party and consequently letting him down.

Only of course it's not a party.  It's a 'dirth'-day, not a 'birth'-day.

Brian helpfully reminds me that Aidan won't mind.  

It's true.  He won't.

The dead are so accommodating that way. 

Still...I might try to schedule my break at work around 5 am.  Maybe even head outside or to a window so I can look up at the sky and whisper "Happy Birthday baby boy...Mommy loves you".


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.