I’m sitting here trying to put my thoughts into some coherent whole in order to better relate what’s going on…
When Charlize was born, 9 days ago, the pediatrician checking her out wrote us a cardiology consult since he heard a heart murmur. Our appointment was confirmed a few days later as being today, at 1245pm to be exact. We left home at 1130am to get there (Montreal Children’s Hospital) early enough to get a hospital card made and got to our appointment right on time.
Chantale has a heart murmur, I have a heart murmur (systolic heart syndrome), and now Charlize had one. We knew an echocardiogram (ultrasound) would be done on her heart to confirm just what the pediatrician heard.
Well, as … not relaxed, but more like semi-nervous, as we were, we began to wonder just a bit more when the consult lead to the echo, which took longer than expected, to the cardiologist taking over the scan for more specific results, to being taken in for an oxygenation test, which finally led to being brought before the pediatric cardiologist holding a yellow diagram in his hand and a sombre look on his face.
A Ventricular Septal Defect (a hole between the ventricles) was confirmed. Tetralogy of Fallot to be exact.
What does this mean? Basically, in the best of cases, that during the next 6 months her oxygen blood level remains as high as it is now. And then, my little baby girl will undergo a half-day operation where her chest will be cut open so the doctors can get to her little heart and fix a number of ventricular defects. See, the way her heart is pumping now, blue blood is mixing in with her red blood which means her body isn’t getting optimal blood/ oxygen. Although it is a complex defect, it is actually quite common and once the operation is done, she will be cured. She will be able to have a normal, active, healthy life except that she’ll need periodic follow-up. I look at it in the same manner as going to the dentist once a year for a cleaning… (small smile). The only way anyone will ever know there was a problem was the fact that she will obviously have a scar on her chest.
So… she’s fine. her blood flow is good and her oxygen level is good. in the event that she suffers some kind of incident, the first symptom will be that her fingers, toes, mouth will turn blue. That’ll be our cue to call 9-1-1 and the hospital. The operation will be moved up based on how she’s doing.
This is not a disease, it is a defect. And it will not go away on its own, it needs to be fixed. After the operation, she’ll be in ICU for about 2 weeks and home recovery will be a few months of… “easier” activity. Of course, the thought of trying to keep a 6/7 month old calm and not active will be a nice challenge 🙂
I think the most difficult part, for me, will be the on-going questions of politeness. ie; “how’s the baby!” which is quite natural considering she’s 9 days old right now. “She’s fine, she’s just waiting to have open heart surgery in a few months” almost seems a little rude an answer, though…
We’re holding up okay. I think the fact that we’ve already had a few hours to get this jumbled mass of emotions under control helps. Plus the fact that the MCH really are good at what they do and they do have a specialist on staff who’s performed many of these surgeries. And, considering what we saw tonight, they also have a really good support system for parents. Right now the most daunting task seems to be how to “tell” everyone without freaking/ scaring them. At least the support system Chantale and I have in each other really is more than rock-hard, more than diamond-hard. We know this is just another “bump in the road” of life. And we also know HOW lucky we are considering how much worse it could have been.
Anyhow, that’s the news. Good night.