Category Archives: Heart Defect

31 months Post Op

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Gabrielle had her last surgery at 11 months old. She is now 3 1/2 years old.

I get a lot of emails from parents with babies just diagnosed, or still in utero, that have just received the diagnosis that their child has Tetrology of Fallot. Each individual story is so different, even with the same diagnosis and I can only share our unique journey. But to those parents, even with such a diagnosis, there is so much light and joy that comes to you too. Because I’ve found that somehow, Gabrielle’s heart reminds me that life is precious. It reminds me of the miracle it is to have a child at all. And it keeps me holding her close and savouring her laughter.

Last Thursday, Gabrielle had her first un-sedated echo. Up until now, her echoes have always been sedated because she has a lot of fear and anxiety around hospitals, doctors, nurses and any kind of machine. The sedation is such a pain because there is fasting, watching your child on mind-altering drugs, and then the hangover that comes as the “drunkenness” wears off. This time there was none of that. But there was a lot of talking about the doctor’s appointment before it came. There was a lot of reassuring that there would be no pokes, and that the test would not hurt.

As we explained the procedure to her, in the days leading up, Gabrielle said, “Oh, well I still don’t want to go.”

The morning of the test, she and I woke up early to hop on a ferry. She asked me if I would have to leave when she got cut open and if she would be already asleep by then. It was clear my prepping her didn’t quite work as she already had a vision of what the doctor’s appointment would entail. I assured her again that no one was cutting her. And that I wouldn’t leave the whole time.

We arrived and she liked playing with the toys in the lobby. The technician asked if she would like to come in and have pictures taken of her heart. She said in her most grown-up polite voice, “No thank you.” And turned back to what she was doing. This makes perfect sense to her. They asked, she declined. Politely. It was a very civilized exchange. But it didn’t do her any good.

She had to be persuaded with Fraggle Rock and a Popsicle before she settled into the bed and the real work could be done. The staff asked her if they could listen to her heart or take pictures, to which she would politely decline. Then they would do it anyway. That part was a bit of a shame. But they were extremely good about letting her have control over the machines. They let her put the stickers on her chest. They let her hold the stethoscope. And when she had a good scream, they let her skip the oxygen saturation test. Everything looked good on the scans. We are still on the basis that we will see how the next 6 months goes. But they are estimating her next surgery will be Summer of 2015.

As the tests wrapped up, Gabrielle looked relieved and she said, “Now it’s all over?”
I said, “Yes.”
And she smiled and said, “Now we get to go buy my bonsai tree!”

Yeah so, I told her after the doctor’s office we would get a treat. I asked her if she wanted a cupcake at her favourite cupcake tea house but she told me she would like a bonsai tree instead of a cupcake. Oh and some raw salmon and raw tuna nigiri please. Yeesh! What other kid?
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The Japanese man at the bonsai tree store found it hilarious that my daughter had requested a bonsai tree. We carefully picked out which one she wanted.

But our lovely cardiologist summed it up perfectly.

“Oh, a small wise tree for a small wise girl.”
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Back to the Heart of the Matter

I get so used to this lull in medical “intrusion” that I often forget I have a child with a life-threatening heart defect. After the first year of her life, thinking of it every day, it is such a nice change. But the heart of the matter is, there is still something the matter with her heart. And every once in a while we have to face that.

Gabrielle had an echo scheduled for March before we even left for Mexico. While in Mexico, she began quite ill with some kind of stomach infection which required her to get a shot. We knew then that she was not over her phobia of doctors. When we returned from Mexico, I called the doctor’s office to change her echo appointment to a sedated echo appointment. I knew she wouldn’t be ready to face an hour long test like an echo while fully awake.

The day before the echo, she and I talked about how we would go to the hospital tomorrow. How there would be absolutely no needles. And how it would be quick and then we would be able to get a fabulous lunch at her favourite little cupcake tea house. We also stressed that she would not be able to eat breakfast. The thing with sedation is that there has to be significant fasting beforehand. I was dreading this.

Gabrielle was an absolute “champ” (as she called herself.) She never complained or whined that she couldn’t eat though she asked a couple times for food. She didn’t seem nervous at all as we pulled up to the hospital and she was talking positively about the doctor the whole morning on the ferry.

As soon as we entered the hospital and we had to weigh and measure her, she started shaking in my arms. It was clear that the memories were flooding back to her. The sedation they used was a different medication than usual and it didn’t put her completely to sleep which meant that there were a lot more tears than normal. But as soon as the medication and the echo was done, a couple hours later, she was visibly relieved.

As for the results of all that drama, her next surgery looks like it will be around the time she’s entering or done preschool. They said a guess of age 4 or 5. She does have moderate narrowing of her pulmonary artery and she has leaky valves through the conduit they put in. Her oxygen saturation is (to quote the nurse) “100% when resting, 96% when furious.”

That is all very good news.

The news that was less than ideal was that they want to see us more often. She should not become symptomatic before the next surgery and to assure that is the case, they want to see her every 6-8 months. It’s a shame but I know it is for her own good.

On the way back, Gabrielle was becoming more stable on her feet but could have acted a good rendition of “What do you do with a drunken sailor” and we ran into friends taking the same ferry as us. Their three year old had cancer last year and still has several tests he has to do every month or two.

The mom asked casually, “Oh, what were you in town for?”
When my answer was “A sedated echo” she had the most perfect response.

“Oh I hate sedation appointments!”

My sentiments exactly.

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January 4th

Gabrielle is napping right now. So I’m drinking tea and having some lunch. We had cornish hen last night because it was on sale and organic and it was delightful. I don’t think I believe in reincarnation but it felt like some past self of mine was saying, “This is how bird should taste!”

My past self must not have eaten much moose though because I never really like that stuff.

I glance up at the date and do you know what day it is? Well, January 4th actually. Rather insignificant.

But not.

2 years ago today we made our way into Victoria for a routine check-up for our 4 week old baby and we were told we couldn’t come home. Gabrielle had heart surgery only a few days later. If you’ve been reading the blog for a while you already know the story. But there are days when things come rushing back to me and I have to stop, pause, give them some space in my brain for a while. And then be grateful and move on. It is the grateful part that is so important.

Today I’m grateful that the cardiologist called me and asked if we’d like to have an appointment before or after we go to Mexico in February. They would love to do an echo (an ultrasound of her heart) and they would like to use TV and movies to calm her instead of sedation. My little girl is doing much better when it comes to doctors than she was a few months ago. This improvement is mostly attributed to the fact that we have not had any medical intrusions that concern her in quite a long time. Again, I am grateful. So I opted to wait until after Mexico for an appointment because I believe if she had the appointment today, she would need to be sedated. If we wait another couple months, she may be able to tolerate the temptation of TV and no sedation.

Sedating a child is awful.

I am thankful that her cardiologist is easy-going and trusts that I know my child well. He trusts that if I see any symptoms or changes, that I will let him know. Yes, I know my child well. I spend all day with her, every day. But I hope I am worthy of this trust as I didn’t see her turning blue two years ago which prompted emergency surgery. Two years is a long time. And she can bounce for more than an hour without stop. I think she’s showing that she is managing fine with her heart repair.

And since we’re on the topic of Gabrielle, she is hilarious. I had no idea Two would be so much fun. A couple days ago, she and I were upstairs and Marc was downstairs trying to find something. He yelled a word that should not be said in church. Gabrielle looked up at me solemnly and said “Mona Kitty talks like that!”

I had no idea our cat had a bit of a potty mouth.

I have a suspicion that Ramona didn’t know that either.

I have one more baby to come before we head off to Mexico in February. I’m starting to mentally pack my bags, noting where the sunscreen is, the skirts and light cotton shirts. To put it mildly, I’m looking forward to this. Our renewed passports should be arriving in the mail in the next few days and then, watch out Puerto Vallarta! Here we come!

Lately around our house, it’s looked like this:

Celebrating a year

Today we celebrate a year since Gabrielle’s heart surgery.

We played and napped and ate snacks. Just like a regular day. And it was perfect. Perfectly normal. Unlike a year ago where the situation was perfectly abnormal. I feel like she has healed well. Not only her scar but her spirit. And I feel like I am healing well too.

I received a wonderful email from a new friend recently that I’d love to share with you here. It is from a woman who had Gabrielle’s heart defect when she was born and now she is an adult with her own daughter. Stories like this buoy my hope for wee Gabrielle beyond belief.

Hello my name is Ashley I read the story about your daughter (by the
way she is very beautiful.) I was born on August 17, 1989 five days
after that I was diagnosed with TOF. My parents also chose the second
option I have had a total of 4 heart surgeries including my shunt that
got put in. I would just like to let you know kids with TOF grow up
just fine I truly feel blessed everyday to be on this earth I never
dwell on the fact that yes I have had more scares and surgeries then
the average retired person. I would also just like to let you know
that my parents were told I wasn’t going to live past 4 then it was 16
then it was my 30′s then after my latest surgery five years ago they
told me just keep living the oldest person they see with TOF is in
there 60′s and still kicking. As a parent myself now I can’t image
someone saying my beautiful daughter only has X about of time to live.
Thank you again for sharing yours and hers story it really warmed my
heart.

(Shared with Permission)

Thank you Ashley for warming my heart too.

Thank you friends for accompanying us on our journey.

Thank you Doctors for your expertise.

Thank you Gabrielle, for laughing with me today.

While being grateful, having the flu.

 

Hi, my name is Amanda and I have the stomach flu. Boo!

And can you believe, I have been grateful today. No this is not a post of how wonderful my attitude is when I’m sick because seriously, who does that? But this is me reminding myself that even today, sick as a proverbial dog, I am grateful that I am not on call. I am thankful it’s Saturday and my husband is home with Miss G and that she even got a beach date in with Gramma.

It was even a relatively sunny day for my friends’ moving party (which I could not attend and I am not grateful for that!)

A friend asked me recently if Gabrielle’s “upcoming two” behaviour was truly horrible? She wanted to know how bad it got, how close was I to throwing my kid out the window?

I said, “Well compared to heart surgery, this is all a breeze.”

And I say this about my icky flu too.

But we can’t live there. In that intensely awful yet grateful place too. I can’t stay in those extremes. So when life calms down and is flowing “normally” I blog about having the flu. When I was watching my child go through heart surgery, there was a mom forum where a mom was complaining that her 4 week old baby slept on her stomach. Please help! My baby is sleeping on her tummy! I thankfully kept my fingers still and did not comment that my baby, at the same age, was in heart surgery so please let your baby sleep on her tummy.

Because we can’t live there. We can’t stay in a place where everything is life or death, where we’re hanging on a thread. But sometimes we do live there, for months at a time as Baby Maya’s family aptly demonstrated.

I complain as much as the next person when my kid won’t poop on the potty or when her whining is driving me up the wall. But at the end of the day, I hold her and my heart bursts with mushy mooshy appreciation that she is with me. Last week I held her close to my chest when she wouldn’t go to sleep, and I felt her enlarged repaired heart beating against my heart. Have you ever felt that? Your kid’s heart against your own heart?

I can tell you, I wasn’t dry-eyed about the experience and it gave me that much more grace for her as she’s figuring this world out. Because I’m seriously grateful, even on flu days, that she is exactly the way she is.