My little fairy is nearly four!

I'm pretty sure I say this every birthday but seriously, this one has snuck up on me! How the heck can this little teeny tiny girl be on the verge of turning four! She still wears a lot of clothes for two year old's and come on, she barely looks three! I wuv her L's that sound wike w's, her squeeky, chipmunk voice. I even want her to keep sucking her thumb because when she does she looks so absolutely adorably cute! I just want to keep her like this for a bit longer my precious widdle bubba with the most special of hearts. 

She is my sunshine.

Bel's heart check up...

Yesterday we made a family outing up to the Stollery Children's Hospital in Edmonton for Bel's yearly heart check up. For anyone that hasn't read any earlier posts about Bel's special heart, here's a mega-fast re-cap.... She was born with AVSD or Atrioventricular Septal Defect. She had a hole in her Atrial Septum and the muscular portion of her ventricular septum was improperly formed, i.e her AV valve  didn't close and instead of pumping blood just forward into the body and the lungs, it also flows backwards into her atria. The back pressure causes congestion of blood in the left atrium and this in turn causes congestion and pressure in the veins draining the lungs. If left untreated this would cause life threatening pulmonary hypertension.  If she had only ASD (atrial septal defect) they would probably have waited until she was 3 before doing the surgery, it's the risk of Pulmonary Hypertension caused by the defective valve that meant she needed surgery as soon as possible. We didn't find out about her condition until she was 10 months old when our family doctor noticed a heart murmur at her usual baby check up. Within a month we were checking into the Stollery Hospital for her open heart surgery. You can read my first post describing how we found out about Bel's heart here  and about Bel's surgery experience here.
During her surgery they were able to patch up the hole in her atrial septum and carry out a fair repair job on the incomplete valve. As she's so small they could only use her existing tissue for the valve repair, a replacement valve isn't an option as they currently only last 10 to 15 years before requiring replacement. As such, the valve still doesn't close properly, there's still a gap of approximately 3mm causing  a moderate jet of blood back into her atria on every pump. We really don't know quite how the leak will change as she grows. If the gap widens she'll need another open heart surgery to repair it further. Statistically, there's a 30 percent chance she'll need this further surgery so the odds are on
her side.

For now she just has to be monitored every year. On each visit to the Paediatric Cardiology clinic she gets measured and weighed. Kids with this sort of heart defect are commonly small. Isobel was so small on previous visits she was way off the bottom of the growth scale. At her last visit she was on the scale for the first time and measured in the 3rd percentile for weight. At this visit she measured between the 5th and 10th percentile.....hip-hip-horay for a patched up heart! She weighed in at 27 lbs or 12.2 kg. Next she gets an ECG where electrodes are stuck all over her body to make a recording of the electrical activity of her heart as seen below....

This is usually a pretty quick test and swiftly followed by the first in a endless stream of sugar free lollipops dished out by the technicians. Seb usually manages to get in on the lolli action too. 

Next comes the Ecocardigram. This is the one that takes some time. It's basically an ultrasound of the heart and this time took us about 50 minutes. Poor Bel has to stay really still the entire time while the technician makes sure they get all the measurements and pictures the Cardiologist needs. Bel gets to choose a movie which plays on a TV above the bed. Bel did really well but even with a movie on theres only so long a three year old will stay still without getting grouchy. This time we had a particularly un-child-friendly Technician who was a little too abrupt in telling Bel to stay still.

Seb was really good too. He sat and snacked while watching the movie and occasionally feeding Bel a chocolate chip from his trail mix. (it's pretty unheard of for Seb to part with chocolate chips so I was impressed!)  At one point the technician had to turn Bel onto her side, she did it a little roughly and Seb snapped at her "Don't hurt my Isobel!" of course Neil and I loved that!

After all that and a whole lot of waiting around we get to have consultation with our very nice Paediatric Cardiologist Dr Dyck. He's a nice chilled out kind of guy and he seemed pretty happy with Isobel. Her heart is growing at a good rate (not too fast which can be a concern) and the leek is still moderate. He did notice that Bel has a slightly concave chest, a condition known as Pectus Excavatum. He said that this could likely be a result of her surgery and may worsen over time, another thing we'll just have to keep monitoring. In some cases surgery can correct the condition but it's a pretty aggressive surgery with metal plates inserted so I'm really hoping that it doesn't develop to a stage that bothers her enough for surgery. Anyway.....all is well right now. Miss Bel is a highly energetic little monkey and as far as I can tell as healthy as an ox.

After we left the hospital we headed to Whyte Ave for pizza and ice cream. with a quick stop in a back alley for this little photo shoot.......

Miss Bel with an attitude!

Seb was obviously still feeling a bit protective of his little sis, awww!

All in all it was not a bad day  :)

Baby Bel turns 1!

We celebrated Bel's first birthday on the 19th. Time has flown by so quickly it's hard to believe she's a whole year old already. I baked a cake and we had a party but I was so busy enjoying myself that I have hardly any pictures of either! I don't mind though, there are times when it's far better to really enjoy the moment and not miss it altogether by trying to get loads of photos. Things I'll always remember about Bel's first ever birthday party.....her big beautiful smiles, seeing her stuff her mouth full of daddy's home made sausage rolls (she couldn't get enough the greedy monkey) and watching her crawling around on the floor in her pretty new dress from Grandma with huge chocolate cake stains on her little bum!

It was a great party and I'm so happy lots of our friends came to celebrate with us.

Thank you all! x

Bel looking cute in one of her many new outfit's. This one is from Grandpa Nigel and Mars and I think she's looks so pretty in her cute little baggy jeans!

MMmmmmm....chocolate cake. And yes I did lick the spoon when I was done :)

Isobel opening her pressie from Auntie Caroline.......

Seb playing with Isobel's pressie from Auntie Caroline. That's kind of how it went with all her pressies.

One of the few pics of her cake!

Seb helps blow out the candle!

Sebastian decides to remove his trousers mid-party. Ha ha!

Opening pressies! Thank you everybody for the beautiful presents especially Auntie Cake for the amazing owl quilt!! We all love it!!!

More about Bel.....

It's been two weeks since Isobel had her surgery. She's been home for 9 days and she's doing amazingly well. Even the day she arrived home she had us all watching in disbelief as she made her first attempts to crawl around the kitchen floor. Now she's moving so fast you'd never believe there was anything wrong. She's still got a pretty fresh scar and if you think that her ribcage was cut open and is now loosely held together with a few bits of stainless steal wire it's hard to believe she's crawling and rolling all over the place!

Here are a few more pictures from her stay in hospital and from the days since she's been home.

<

Our first cuddles two days after her surgery just before she was moved up to the ward. It was SO good to be able to just pick her up.

Being moved from the PICU up to the ward. She looked so tiny in that big bed.

Trying to get some rest. It was so hard for the poor little munchkin to get any sleep, she'd be woken up continuously for blood pressure checks or to be given her medication. By the end of her stay in the hospital I think she was totally exhausted.

This was the morning before we left the hospital, 4 days after open heart surgery. She's smiling and happy but doesn't look quite right. Apart from being exhausted she decided to stop drinking the hospital milk and was starting to get a little dehydrated. Once she got home she started drinking again and finally got a good nights sleep. In this picture she's surrounded by all the teddies she received while in hospital. When we got home there were even more presents! Fruit baskets and flowers and cards and some really cute books for Bel. Thank you so much to all our family, friends and neighbours for being so sweet and thoughtful, it means a lot to us.

With Nana waiting to go home and finally out of the yucky hospital PJ's.

Such a sweetie pie!

These are Bel's scars one week after surgery. There's the main incision and the smaller scar below is where her chest tube went in. It's not too clear in this picture but she was also covered in tiny spec scar's where all the other lines and wires went in. She has these on her neck, wrists, ankles and stomach. You can just about see a few of these either side of the chest tube scar.

Two weeks after surgery and it's all healing nicely, she had the last stitch out yesterday and doesn't look so much like a pin cushion anymore.

Crawling around again and I'm sure, so happy to be home!

Out for a walk in the park with Seb and Nana. Bel gets the comfy ride on the baby sled.