Category Archives: Heart Defect

Buying Parking

On Monday Gabrielle had a cardiology appointment in town. She got a shot and went to be weighed and measured. These visits are often brief but the preparation and reminder in the hospital always make me feel a little raw. And then, as I feel my shoulders tighten as I hold her while she cries, it’s all over and we can go about our day. And I wonder at my stress and say, “That wasn’t a big deal.” But once in a while, it is a big deal.

Like last year in January when we went in for a quick check up, and ended up going into emergency surgery. And ya know what part of the morning is the hardest part for me?

Buying parking.

I am optimistic and I buy the minimum amount of parking, hoping that’s all I need.

And on Monday, that was all I needed. And then, it was done, just like that.

Then we got to focus on more pleasant things, like a sushi lunch date with my mom and a trip to the used bookstore. (Not that I need more books at. all.)

From the snippet in the hospital, we learned that Gabrielle is growing, she is (slowly) gaining weight and she has 99% oxygen saturation. Way to go Baby!

We scurried home, back to our island and our cozy little house to chase the cat, to run, to read, to eat and enjoy in the peaceful moments. I recollect myself and find I am ever-so thankful for good health, for competent doctors, and for a tiny island to call home.

In January

We have an expansive field right next to our little cottage. Our landlords own it and use it for haying. It’s a gorgeous place to run around, when it’s not Winter. Basically we’ve had winds here that have been blowing at 100 km/hr. And the rain just doesn’t stop. This is typical of Winter on the west coast. And honestly, as far as weather in Canada goes, we have it pretty darn good.

Gabrielle has just discovered Outside. Outside being the place she wants to be All The Time! So we take her out in the rain and the wind. She is happy as a clam. A freezing wet little clam.

Lately we’ve tried other methods of inside entertainment, that do not involve watching little videos on the computer. (When we tried this, it took a couple days and she became completely belligerent so we knew that TV was not good for her overall demeanor.) Lately, the entertainment has come from the Laundry.

Recently we brought Ramona the cat home to our place. She’s been living at my generous in-laws’ place (Thank you Ron and Gail) as we’ve been flitting around and in transition and away. Gabrielle completely loves this. She’s learned the sign for cat which she does over and over as she chases Ramona around the house. So far, the born-in-a-barn, runaway-cat who can be quite unpredictable in her moods has been nothing but patient (if not fleeing) with our sweet babe. Ramona lets Gabrielle pet and kiss her then tucks herself in an unavailable little corner unreachable by the baby. It’s a happy little relationship which I expect to blossom as they get to know each other and Gabrielle becomes a little more coordinated.

Gabrielle has an appointment next week for an RSV shot and a weight/oxygen sat test. She doesn’t have an echo now for maybe a month or two, which is so nice as she has to be sedated for them. She’s doing really well, growing and eating and moving. There are hours in the day where I even forget that we went through heart surgery just a couple months ago. Yet when I do remember, I feel appreciative and incredibly blessed with such a fantastic child. When I think of all she’s been through and survived, I say “Yes, let’s go play in the rain. Yes, let’s dance to that song one more time.” My measure of patience and joy swells as I get to watch her grow up ever-so fast.

Frost and Finger food

It’s been cold and stormy in this neck of the woods lately. And when I say woods, I’m being literal. Pender Island is mostly woods and some pasture.

I live on the part of Pender that I love the most. It has this great 6 km loop along the road that I walk a lot. This area is mostly farms so Gabrielle wave to the sheep and check for eggs at our favourite egg stand. We watch the progression of the grape vines grow and the construction of a timber frame greenhouse. There are two places along the walk to stop and pee if need be. (This was much more vital when I was pregnant and walking the loop.)

But my favourite thing about the loop is the company that I keep. My friend and I have a shorthand for this walk. Simple texting “Loop?” usually conveys the message.

Gabrielle saddles up in the ergo and settles in with a leaf or pinecone in her hand and off we go. I strongly believe in walking a lot with your baby, while wearing her. Because we’ve done this since she was new, she still loves the walking even though she prefers to go walking on her own now. (Or more correctly put, with one of Mama’s fingers)

We’ve started on finger food with Gabrielle which is exciting but a lot more messy than simply scooping food into her mouth.

The concentration it requires is adorable. Gabrielle has also started doing sign language. We’ve been very inconsistent with this since she was about 4 months old but she is very excited that she can communicate what she wants now. For example, we went to the craft fair yesterday and it was very loud and crowded with lots of people touching her.

She was in the ergo, and she stuck her arms out the top and looked at me plainly and signed “All Done!” All done the craft fair? Ok, me too.

I adore this stage where she is so interactive. Does it just keep getting better?

And, thank you for checking, she is healing really nicely! We have a sedated echo cardiogram this week to make sure she’s healing well.

She’s up from her nap! We’ll be sure to let you know how it goes.

Good-bye Vancouver, Hello World!

It was really nice to leave the hospital. I realized I hadn’t even been off the third floor for three days so my parents’ watched Gabrielle for an hour the last night we were there so Marc and I could go down the road and grab take out. Even walking 3 blocks felt so good. It’s strange how time passes when you’re in the hospital, like it doesn’t pass at all or like centuries have gone by and we’ve become old and wrinkled. I’m sure some parts of us have become old through all this. I’ve given up pulling out my grey hairs…

We began counting the last things that would make Gabrielle cry until we could get her safely home. IV removal, weight check, x-ray, and having her stitches removed and then we’re home free. There are residual effects from the hospital still lingering but they fade every day. Like today I had to change her chest dressing, resulting in screaming. My second sin was getting out the thermometer. We didn’t take her temperature but even the sight of it sent her into hysterics. We’ll hide certain implements until absolutely necessary, Gabrielle, don’t fret. Your anxiety will dissipate with time as we slather you in love!

Before her surgery, I joked that our toothless baby should cut her first tooth while sedated on and on morphine. Imagine my surprise when I was feeding her and felt a clink against the spoon from a tooth that popped up suddenly and under the magical stew of painkillers. Way to multi-task Brie-nut!

I learned a few very cool tidbits about Tetralogy while we were in the hospital. Gabrielle’s heart is HUGE, completely disproportionate to her body because her heart has had to work so hard, and so inefficiently. Another thing I learned is about the history of Tetralogy. In 1954, Docs did the first Tetralogy heart repair. They didn’t have heart and lung machines then that they use now. Now, they use a heart and lung machine to stop the heart and reroute the blood so that they can cut the heart open and operate safely. When they didn’t have a heart and lung machine, they used the boy’s mother as his heart and lung machine. In the operating room, they lay the boy and the mother down, in beds beside each other and used his mother’s circulatory system to sustain her son during surgery. The surgery was successful and the boy is still alive today, and grew up to become a physician. Happy Ending; My favourite!

Right now we’re looking for our happy ending. We’ve had a bit of a hiccup in our best-laid plans. Our house-sitting gig just fell through for medical reasons by the owners. And we are in the process of selling our boat-home. Fellow boat-dwellers, do not abandon us on this front! Someday we may return to this lifestyle but for now, this isn’t ideal for us.

All this upheaval has left us homeless and Marc unemployed so we are adrift and trying to figure out ‘What Next.’ I’m sure it will be adventurous but stay tuned as we wait with baited breath to see what unfolds…

Wishing you a warm place to curl up as we find ours.

Post Op day 3 & 4

This is not what Gabrielle can do today. This photo is taken the morning of her surgery, right before they gave her a chocolate-tasting drug to make her drowsy. She was wandering around, petting the other babies waiting for their own unique surgeries.

This is what Gabrielle can do today. Each day she is more awake, more aware and giving us a smile here and there. She is clapping her hands together ratherĀ  clumsily. One hand is finally rid of tape and bandages. The other still holds her IV so they have taped a board and half a dixie cup so that she doesn’t put it out. She’s already trying, wily baby!

This is yesterday. Yesterday was a tough day for me. The night was long and only allowed for me to have a few 15 minute cat naps so I was a pretty tired Mama. Gabrielle came off her nose prongs near 3pm yesterday but then had to go on them again periodically when she became tired or nursed or upset. It was hard to remind ourselves that it was not a step back but baby steps forward, at the pace that is right for Gabrielle.

Even though yesterday was tough, it was the first day we got a real smile since Thursday. How many times in a day do children smile? More than I can count! But since Thursday we’d been counting and it was so nice to have something to count. She is still very uncomfortable and on regular doses of tylenol. We can only lift her up by her head and bum, not under the arms, and even then, I have to be ever-so careful not to touch where the central IV line went into her neck. That spot is still very sore. She’s covered in poke marks and bruises in every limb, and two on her head. Evidence that she’s weathered a big storm.

We know soon she’ll be insisting on walking, banging drums, and all the usual playing. We can’t wait for that!

Looks like if she can stay off the oxygen today, they will discharge us tomorrow. Then, because of the long weekend, we won’t be able to leave Vancouver until next Monday after our follow-up appointment. This is disappointing as we’d really like to be back on Pender, in front of a fireplace, healing. But it is better to be close to the hospital after such a major surgery and we respect the time it takes for our babe to heal. It’ll just be nice to leave the hospital and get away from all the poking and prodding every couple hours. The nurses are not cruel but Gabrielle is so anxious when they enter a room. Her tiny body quivers in my arms and she cries when they take her temperature, check her blood pressure, switch her oxygen saturation probe and feel her pulses. Once a day they weigh her and she finds this most traumatizing. It’s so hard because she knows enough to be anxious and anticipate, but she doesn’t understand enough to know that it won’t hurt, most of the time.

The photo above is the first time I got to hold her in two days. I can’t express how good and “normal” it felt to have her warm weight in my arms again.

Here’s wishing you a happy Monday. Another day of healing for us all.