A fair number of you know that my firstborn was born with tetrology of fallot. It's a heart condtion that includes three heart defects. This is important because at the age of 3 months and weighing just over 9 pounds, she had open heart surgery to repair them all. As a consequence of this surgery, her pulmonary artery valve was removed. So she needs a valve replacement. We found out when she was 2 that a portion of her repair surgery failed and she now has a 3 centimeter aneurysm in her pulmonary artery. I'm sure we can all agree that was a sad day in the Labrecque household...
So she's been holding steady the past 3 years. The aneurysm hasn't grown, her cardiac output has been good, and she doesn't appear to have any abnormal heart rhythm. The reason for todays blog it to update all those who were wondering on her status. It appears as though her complications may be progressing. At her yearly checkup with her cariologist it looks like the right side of her heart is starting to enlarge from all of the extra work it performs daily pumping the deoxygenated blood to her pulmonary artery that is without a valve and had a 3 cm buldge in it. I mean really, this is no surprise. I am shocked its taken 3 years to tell you the truth. I've been walking around all this time waiting for the shoe to drop.
There was also an incident in school that may have been nothing or may have been something depending on which teacher you speak to. Alyssa was walking down a crowded hallway and stumbled. One teacher though she almost fainted, the other thought she simply lost her balance. What really happened? I couldn't tell ya. I can tell you shes tired all the time. I mean we go outside to play and she has to take rests. I hate it. It makes me so angry. Not at her. At God. At the universe. At myself for not creating a physically perfect human. So she wore a holter monitor for 24 hours to check her rhythm. For any of you with kids, you know this was a challenge. Needless to say the leads kept falling off, the school nurse put them back on incorrectly, and by 9:30 thursday morning they were all off and monitoring was done 2 hours early.
We are now waiting to schedule a repeat MRI (her last one was 3 years ago. So was her last cardiac cath, which is another rant for another day). This will let us know for sure (hopefully) if her heart is enlarging and if her surgery needs to be pushed up. Cause yeah, she needs another open heart. And we knew this. But damn does it hit me square in the stomach when they say it. Every time. I think I'm prepared. I go into her appointments with a bad attitude. That I'm going to get bed news. Because the last time I had a positive attitude they told me my 2 year old had an aneurysm. Try not crying in front of that very same 2 year old and her 3 month old sister in the carrier next to her. Not an easy task. So now every June I'm a force to be reconned with. I'm easily angered. I'm quick to cry. Basically I'm a nut case until her appointment. Then I settle down for a year.
Here's the other part. The part you aren't supposed to talk about as a parent. The one that even as I type this I know I'll be judged on. But heres the thing. I've always been honest and I won't stop now. When the doctor tells us he wants the MRI sometime this summer I think "crap". I;ve got big things happening in my career this summer and early fall. Promotions in my job are few and far between so being in charge of a new machine is huge. And I've put in hours of work. Hours on prep with our new computer system we put into place for this new machine. I go to Las Vegas for a week long training seminar the second week of August. And now I wonder what's gonna happen. Chris tells me to try to not think about that. That we"ll cross that bridge when we come to it. But I can't help but feel angry about this too... And then I feel guilty. I mean, I'm the mom. This is the most important job in the world. On the flip side I get so much satisfaction out of my career. So I'm conflicted.
So basically I'm sad, angry, conflicted. And Alyssa doesn't have a care in the world. She doesn't really know whats going on. Obviously that will all change soon, but I don't want her to worry. She's sensitive and it would worry her.
That's the update. And now I'm gonna hang out with the infamous Amanda Cormier...
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