Category Archives: Heart Defect

Sighing deep for September

It’s September. Just like that. This morning I woke up, put on a sweater and wondered if we should start a fire. We went to play group (often called Plague Group around here for all the runny noses it tends to bring into our house) and we are slowing down for the school zone again.

I am so thankful we’re in this year instead of last. September always feels like another beginning and this year I feel hopeful about it. I mean, I have births coming up and there’s nothing more hopeful than an expecting family.

Gabrielle hasn’t had a doctor’s appointment since March (other than immunizations) and she has her next one tomorrow. It’s been a long break and I cannot tell you how nice it feels. We took Ramona Cat to the “doctor” last week for a check up and I’m hoping that it eased Gabrielle’s mind a little so that this doctor’s appointment tomorrow will be a…. pleasure? We say, “Gabrielle, tomorrow we’re going on a ferry boat and going to the doctor.” She says, “Listening heart?” And we say, yes and try to describe it to her. Saying most hearts say “bump bump, bump bump but yours says Bump swish swoosh.” She likes these sounds.

But today I found a play stethoscope at “plague group” and she would not let me near her. We’ll see how it goes tomorrow. I imagine she will not be quite sure. The appointment is also scheduled right (RIGHT!) before nap time. Ah, well. As she reminds me while we sing in the car, “Don’t Worry, Be Happy!” So we shall until otherwise.

After resolving to inundate ourselves in Autumn, we went out after Marc was done work to pick apples. Do you remember when we picked more than 300 lbs of apples from the farm? And we processed apples for days? And Marc and Theresa made an apple cider press? Well, perhaps you don’t but I do. We found our apple “cider” from that endeavour yesterday when sorting out the basement and it is definitively in the “vinegar” category of fermentation. Apple cider vinegar, it’s a health craze right now right?

Here is some of what we’ve been up to lately.

Apple Cider Vinegar

 

First ride on a Gator

Brie's delighted face when the frog hopped away

Ways Her Heart has Changed Her

Before I begin here, I must share my frustrations. My SLR camera base has died thus it fights great battles with the lenses. Thus I fight great wars with my camera and now it doesn’t really work anymore. This is very annoying as I primarily enjoy reading blogs with exquisite photos and now I cannot deliver. So I blog less. Because I’m frustrated. That is all.

I’ve been contemplating lately about how Gabrielle’s heart condition has changed her as a human being. Having never met Gabrielle without the heart condition, all observations are of course, subjective, and as her mother I cannot trust myself to be completely objective anyway. Nevertheless here they are.

Gabrielle is very aware of reducing the amount she hurts. She notices ledges, edges and does not go running off them impulsively. She is a careful creature. Careful on the stairs, careful around cars, cautious around the opening and closing of doors. It doesn’t mean she doesn’t fall or get goose-eggs. It does mean that she tries to avoid them whenever possible. She is not reckless. She does not charge forward. Understanding pain and what it means to be hurt is a way I think her surgeries have changed her. But she will work very hard at something, like climbing up a steep hill, until she masters it. Which brings me to my second point.

Gabrielle is very persistent. When she was learning to walk, she kept at it. Her heart was sapping so much of her energy, that her muscles in her legs, arms and her core muscles were being starved. She couldn’t build any significant muscle to muster the strength to walk on her own. But she never stopped trying. She would walk with our hands until she was blue and panting. She would sit down, catch her breath and then try again. Once her surgery in November (2011) fixed her heart, she walked 4 weeks after open heart surgery. Now that she had the blood flow, she got right down to business. This persistence has translated into every area of her life, whether it be speaking, running, climbing, or letting you know what she WANTS NOW!

Gabrielle is extremely compassionate. I personally believe this is because she has suffered, thus she recognizes the suffering of others. When she was in hospital, there was another family from Pender Island with their little boy undergoing cancer treatment. While in hospital, I met with his mother but the kids never met as they were both sedated and ill. One day, a couple months after Gabrielle’s surgery, we were on the ferry going home and Henry, the little boy with cancer, was on the ferry too. Henry was so sad because he was feeling rotten after an especially hard chemo treatment. Gabrielle walked up to him, and laid her head against Henry’s chest and stroked his arm, as if to say “There there. I know.” I cannot count the times she has seen someone and said “Sad.” or given someone she didn’t know very well a hug. When I told her that I had to go to Vancouver to say good bye to Maya after she died, Gabrielle said solemnly “Maya scar, hurt. Maya bye bye. Maya Mommy sad.” And I said, “Yes Maya’s mommy is very sad, but Maya feels much better now.” I’m amazed how much this kid seems to “get it.”

I said to my dad once, that I don’t wish Gabrielle’s heart condition away because then I would have a different child. I do want my child to be healthy, but this has shaped her and me as I parent her. I find myself in awe at her resilience, at her wisdom. And I am so grateful at all I’ve learned from her in the past year and a half.

Happy 20 months old Gabrielle. Words cannot express how grateful I am to be your mamanee.

Humming Along

I haven’t written in a week. What the heck have we been doing with ourselves??

Well, we’ve been staring at birds outside the front door.

We’ve been playing “cozy” which involves wrapping Gabrielle up in every blanket we can find in the house, hiding her stuffed animals under it and leaving her in this little nest-lump until she wriggles her way out. It actually reminds me of a scene in E.T. where the E.T. is hiding in a closet full of stuffed animals. Ya know the one?

And we’ve been sharing our household duties with friends. Like plunging, obviously.

(These girls are relatively the same age, yes Gabrielle is wee.)

In the midst of that, I’ve been to a birth. I’ve been to a funeral of sweet Baby Maya. Maya had the same congenital heart defect as Gabrielle. She was born in November and we met the parents when Gabrielle was having her repair surgery. There were complications with Maya’s surgery in April, as there is a 3% chance of happening (or something ridiculously low) and Maya passed away last week.

Maya died in the night, the day before I’d been at a birth. The entry and exit of babies was surreal to say the least. But as many have commented before, birth and death share a lot of similarities.

Also, my good camera broke. These photos were taken on a borrowed camera. So if someone has a digital SLR that is collecting dust at their place, I’d be willing to give it an offer.

Gabrielle’s comprehension lately has been amazing me. She understands that when I go to work, I’m going to help ladies get babies out of their tummies. When I went away on the weekend it was to say Bye-Bye to Baby Maya (who we kiss her picture on the fridge throughout the day) and that Baby Maya had a special scar like Gabrielle.

She also is understanding the difference between female and male anatomy. This has led to some amusing conversations, especially when we’re in public. I just didn’t think these conversation would be happening so early. I mean, she’s one and a half for pete’s sake!

And that is pretty much what we have been up to. Nothing terribly exciting but for the most part, we have been enjoying ourselves. Hope your summer (which feels like Autumn) is humming along nicely too.

In Celebration of Nothing Wrong

Yesterday we took Gabrielle to the clinic. After phoning a nurse hotline for some tummy issues she seemed to be having, I decided to play it safe and deal with it sooner rather than later. I can’t tell you how relieving it is to go to the doctor and come out with no promise of a surgery.

A rather amusing thing though; Phoning a nurse hotline, giving the nurse Gabrielle’s care card number and hearing the intake of breath over the phone as the computer screen fills up with medical interventions, surgeries and information on medication this little one has been on, it made me smile and feel sad at the same moment.

Gabrielle’s feeling better today, though her energy level is a little lower than usual. Mostly I don’t think about her past surgeries day to day, but Gabrielle’s little friend is going in for heart surgery next week and my thoughts have been leaning toward that family as they anticipate, prepare, and try to enjoy these precious moments.

In celebration for Nothing Wrong, we spent the morning at the beach with a couple little friends. Gabrielle held hands with her bestie as they perused the beach for purple shells.

I watched her explore and I found myself very thankful.

How Toddlers are like Cavemen

Sweet wee Gabrielle is growing. Growing in her vocabulary, her signs, her responsiveness, her height, and her abilities. She is asserting her little spirit lately by not sharing, and slowly learning how to share.

I asked Marc, what is it in toddlers to hoard? And he responded that toddlers remind him of cavemen. Grunting because they don’t have the words, hitting with blunt objects because they don’t yet have the dexterity. Something innate deep inside is determining her behaviour. There is a period in her life where all her movements are reflexive. When she was a newborn, she would flail her arms, move her head side to side rooting, and stick her tongue out, because she hadn’t quite discovered she had a tongue yet. Now her movements are not so reflexive but they are still instinctual, slowly moving toward shaped-behaviour. We teach her what is hot, what is danger, what is safe to touch, and she responds eagerly and with great curiousity. Yet some things are beyond comprehension, like sharing. Like manners. Like understanding patience. But we’re getting there.

In saying all this, she is a joy to be around. We have so much fun together.

The other morning Marc took her because she was up before Dawn even cracked an eyelid. I came downstairs a couple hours later after a night where she was awake every couple hours, and Marc and Gabrielle were playing in a fort he built. They had her stuffed animals out and she was dragging them around and through the fort-tunnel he created for her. Every day, all day, she is busy busy busy.

She is eating a lot these days but eating mostly orange food. It seems to be her favourite colour right now. As much as we offer green and white and yellow food, they are sometimes tolerated but as soon as something orange is on her tray, she pitches the green food overboard. Ah broccoli, you will have your day. But not today, not today.

On Wednesday last week, she had a sedated echo cardiogram. She had to fast and ended up not eating for something like 7 hours. Hearing her cry at the hospital makes us certain she remembers the trauma of heart surgery. It was rough but the echo showed that there is minor leakage through her pulmonary valve and there is a slight narrowing in her pulmonary artery but nothing to be concerned about. We are so thankful for this and for her continued health.

So, we are enjoying our little cavemen and her antics as she enjoys her repaired heart.