4.30.2015

birthdays and butterflies

So this happened:

Happy Birthday!

Sophia turned five years old last week.  She had a fairly quiet day as far as it goes, as we were only back from her checkup in Saskatoon the night before.  We spent the early part of the day baking her birthday cake: zebra cake with vanilla icing, by request.  Michael came home early from work, we had lunch, and then it was time to open presents  

This is easier to make than it looks
The Spirograph has been fun...I'll use it to make her party invitations

Clothes!

She was excited about all her gifts, but the standouts were a My Little Pony playset from some friends in Calgary, and Dad's special gift: a new bike.  A two-wheeler!  She tried it out right away and has ridden it pretty much every day since.  "I've been practicing!!" she says with a big smile.  

That's better than the outgrown tricycle!

We will have her birthday party on the May long weekend, when her friends are available.  

The other new thing this week is that Sophia started soccer.  She's played in the South Regina Community Soccer League for the past two years, and enjoyed it, but this year she's been particularly excited.  This league is a non-competitive/no-cut league; I was so unhappy in Phys. Ed. classes and team sports in general that my goals are just for her to have fun and not be intimidated by sports like I was.  So far it seems to be working, because despite not always being the team star she seems to have fun.  

The teams are split into all-girl and all-boy at her age level; Sophia was ecstatic to find that her team is called the Butterflies!  She plays twice a week.  So far she has been more successful at kicking the ball on the field (as opposed to just running back and forth chasing the other players), and she told me that tonight she scored a goal--her first!

Ballerina bun and butterfly tshirt

Ready to play!

It's funny how she seems to have suddenly grown up so much...







4.24.2015

asd

I've posted on this topic here and there on social media, but here's the full story for those who are interested.  Warning: this is a long post.

When Sophia was three years old, her pediatrician detected a heart murmur during a routine checkup.  He wasn't unduly concerned, but he did send her for an echocardiogram at the General Hospital.  The images went to Saskatoon for evaluation, so we had to wait a little while for the results.  The upshot was that Sophia was diagnosed with an Atrial Septal Defect (ASD).

Picture from Children's Hospital of Wisconsin

An ASD is a hole between the right and left atria (upper heart chambers).  It means that oxygenated blood flows back to the right atrium, where it's not supposed to be; a larger than normal amount of the mixed blood is directed from the heart to the lungs; and the right atrium and ventricle enlarge under the extra workload.  Many cases are diagnosed earlier in life than Sophia's, but because the murmur had not been detected before and she had not displayed any symptoms (shortness of breath, low energy, cyanosis, limb swelling, etc.) it had gone unnoticed.  Untreated ASDs, however, can lead to stroke, pulmonary hypertension, and other serious problems later in life, so it needed to be addressed.

After the diagnosis, her doctor referred her to a pediatric cardiologist in Saskatoon.  And we waited for her appointment.  For a year.  When they talk about wait times in Saskatchewan...they are not kidding.

The surgeons looked at her heart again via another ECG and confirmed that yes, the hole was still there, and no, it wasn't going to close itself, and we were advised on what would come next.  The good thing, they said, is that fixing a defect like Sophia's no longer requires open heart surgery.  Not having known that procedure was a possibility, I had to retrieve my heart from the pit of my stomach and my jaw from the floor before we could continue.  Then we learned that for the past decade or so the standard ASD repair protocol has been to insert a patch via cardiac catheterization, a 2-3 hour procedure requiring only one night in hospital.  We were to expect her procedure to be scheduled in approximately 6-8 weeks.

I doubt it will be a surprise to anyone when I note that in the Land of Aging, Overstressed Hospitals we waited another 5 months.

So Sophia finally had her procedure on Friday March 13.  It was scheduled for the morning, but was delayed until mid-afternoon.  So after changing into striped hospital pajamas and consulting with one of the surgeons, we spent a lot of time in the waiting room.  Which was probably good, all things considered, as by the time we were called Sophia had got over her initial fear and was running around pretending she was Cinderella and the hospital was her castle.   She was even comfortable enough to be chatty and playful with the nurses as we walked to the Catheterization Lab.

We went into the lab together and Sophia was put under general anaesthetic.  She didn't like the mask nor the gas, but she went to sleep fairly quickly (they said she wouldn't remember it, but she does, and still talks about it).  Then Michael and I were ushered out.

Observing and measuring the defect is actually what takes up most of the procedure time; inserting the patch is fairly quick.  They do a more detailed ECG via a camera that goes down the trachea, and measure the hole precisely with a balloon.  They then take a slender catheter containing a transcatheter device up through a vein in the groin into the heart and insert the device so that it closes the hole.

tasdc_3_2
...And I took this one from Cincinnati Children's Hospital Medical Center

The surgeons brought us back to the lab after they'd wheeled her into recovery and showed us video of the procedure.  It was very strange to look at images of the inside of my daughter's body.  They said her defect had measured at 14mm, but had been stretched by the balloon instrument to 18mm (some stretching during measurement is common).  18mm doesn't sound that big until you look at the size of your little girl and realize how small her heart is!  And yet they described the size as "moderate".

When we got to the recovery room Sophia was just waking up and letting the nurses help her eat a popsicle--the first thing she'd had to eat for almost 24 hours.  She'd been excited about it ever since she'd been told it would be there for her when she woke up.  It's the little things that can make the difference, I guess.

A photo posted by Darcy Sharman Shires (@darcyspics) on

She and I spent a rather sleepless night in the children's ward.  The fold-out bed they gave me was so uncomfortable I was happy to crawl into the hospital bed when Sophia asked me to, and while I can't fault our roommates for the noise they made through the night it made rest difficult.

The next morning, after discovering the delights of Rice Krispies for breakfast, she had a chest x-ray (done, to my surprise, with a portable machine wheeled right into her room) and got to ride in the smallest wheelchair ever to the surgeon's examining room for another ECG.  All was good so we were cleared to go.

A photo posted by Darcy Sharman Shires (@darcyspics) on

Sophia ran out of the ward, played with her cousin all afternoon, and generally bounced back in a very short period of time.  Leaving her parents very grateful for the miracles of modern medicine.

We went back to Saskatoon for her first post-op checkup this week.  The device has not shifted and there is no residual leakage between the atria.  The chambers of her heart that had enlarged due to the defect have already shrunk significantly, and will continue to do so until they are normal.  By September her heart tissue should have grown completely over and around the device, making it virtually undetectable except by ECG.  

She does seem a little changed.  She has more energy (which the surgeons told we could expect), and it took a little while for her to adjust to that and figure out what to do with it other than throw more temper tantrums.  Her appetite seems better, though that hasn't translated into any noticeable weight gain, and she seems to fall asleep easier at night as well.

Other than another check five months from now and every few years thereafter, there are no restrictions or contraindications going forward...it should be as if the defect was never there at all.

Finally, I would be remiss if I did not mention that despite our provincial system in general and Royal University Hospital specifically being completely overtaxed, we were overall very happy with Sophia's care.  Delays notwithstanding, we were never made to feel rushed, and none of the stress the nurses and the staff must have been feeling due to the pressures of overcrowding was ever passed on to us.  Everyone we interacted with was kind, and patient, and gave us their full attention despite the huge amount of work they had on their plates.  So we are grateful not only for the procedure, but for the care and concern of the people who performed it.

4.02.2015

kindergarten meet-and-greet

Sophia will be starting school in September, and the school had its first "Kindergarten Meet-and-Greet" Tuesday afternoon so the parents and prospective students could get to know each other.

School sign with bonus little girl head.  I didn't even see the stain/mark on the sign until after I got home and reviewed the photo.

The school is quite close to us so it will be an easy walk.  Well, except for the fact that winter walking conditions are often quite hazardous due to lack of walk clearing and the water settling in the inevitable troughs and valleys in our street.  Even now some of the sidewalks are under water.  I have the feeling that the strap-on boot spikes that my father-in-law bought me a while back will be getting a good workout next year.

The front door of the school
Grant Road School has been open since 1959; apparently at one point it was one of three neighbourhood schools.  The others have since closed.  Unlike Alberta, Elementary School in Saskatchewan runs from K-8, so every age from preschool to teenager attends class here).  Everyone I know on our street who has an opinion on the school, from a family who moved her last year to a couple whose now-grown children went there decades ago, has had nothing but good things to say about it.  So we are optimistic about Sophia attending.

The "big kids'" playground and transition to the field/park beside the school.
We have been inside the school once before, when we dropped off our application.  The principal was busy but she still took the time to give us a short tour of the school library, gymnasium and Kindergarten room.  Sophia was excited to finally see inside after coming to play at the playgrounds and adjoining park for the past couple years.  So excited that it was hard to get her to leave the building!  She has been talking ever since about going to school and learning new things.  

For the Meet-and-Greet session, the kids actually spent the hour on their own in the Kindergarten classroom while the adults had coffee in the staff room.  Sophia can often be shy with adults and get upset when they pay attention to her or talk to her, but she ran right into the room and interacted with the teacher without as much as a glance back at us as we said goodbye.  It was kind of a happy-cry moment for me...after so many years where she clung to me and was hesitant about many new experiences I always feel so proud when I see her be brave and independent.  

In lieu of a photo of Sophia running inside the room, please accept this photo of her playing on the playground equipment with other school children.
We ran into quite a few parents in the staff room who live quite near to us: the people we never see because they are at work and their kids are always in daycare, etc. while Sophia and I are at home.  Hopefully now they are actually going to school together they will have the chance to make friends and run in between each others' houses and do all those things that were normal to us as children but seem to be out of the norm now (yes, it's a little surreal to be talking to a mom about her arranging "playdates" with kids that live around the corner).  Most of the children at the event today were actually girls, so her class may end up pretty girl-dominated.  We'll have to see.

Heading back home 
As for what they did in the classroom for that hour...we've been informed by our daughter that it's a secret so we don't know.   The teacher did make a comment about everyone being ready and eager to learn, though, so it sounds like it went well for them in there.


Five more months...