Update #1

     I've just realized that I haven't really given any hard facts on G's condition. Here are some numbers from our appointment last week:

     Surgery Date

     The surgery will take place this summer, but the exact date hasn't been decided yet. The window of opportunity is four to six months after birth. Choosing the timing is a balancing act. He needs to be big and strong enough to be able to withstand the surgery. Since two defects need to be repaired, he will be on bypass longer than many heart babies, so bigger is better. If his resting oxygen levels stay too low, it means that his heart can't keep up. In this case, sooner is better. Also, the longer he waits, the more likely he is to have a dangerous "Tet spell," and the more the heart wall thickens. Again, sooner is better.

     His surgery is tentatively set for sometime at the end of August, when he will be about five months old. A team of pediatric cardiologists and surgeons review his case and make the decision together. If things change, this date will be adjusted.

     Weight

     G is still growing and gaining weight well. He is tracking along at the 90th percentile for height, 90th for head circumference, and between 50th and 75th for weight. This has been the case since he regained his birth weight at 10 days postpartum, so the fact that he is not in the 90th percentile for weight is not concerning. If he falls much past the 50th percentile, then we start trying new methods to fatten him up. At some point, Tet babies often slow their weight gain. His has slowed mildly in the past month or so, but not enough to be a cause for concern. We have reacted by feeding him more frequently, which he seems to be enjoying. We will find out if it's helping at his next weight check in two weeks.

     Oxygen Levels

     At our appointment last Wednesday, G's resting oxygen level was 81%. This is very low, and the cardiologist was quite concerned. Based on his history, this number was too low to make sense. The next day, his resting level was in the low to mid 90's. It dropped lower when he started to get upset. This makes more sense for his case, and the doctor suspects that Wednesday's low reading could have been influenced by the stress G had during his echocardiogram. I suspect that they will keep measuring his levels to get a better sense of how he's doing. To put this into context, a healthy baby would have 99 - 100% oxygen saturation, and the most mild Tet cases are often at 98%. While we need to keep an eye on this, the cardiologist was NOT concerned enough to schedule a procedure to put in a makeshift repair, nor send us home with an oxygen meter to check his levels several times a day.

     ECG

     On Thursday, G had an ECG done. I am not sure what the results are,  but my son sure hated having it done. He had a melt down during the test, so only one could be performed  (usually three are done.) He cried himself a purplish -red colour - about as purple as he ever gets. The nurse clinician who works specifically with cardiac peds cases said that he looked like his oxygen was low, but it wasn't a full blown Tet spell. This means he probably hasn't had one yet. Good news!

     Temperament and Development 

     To the untrained eye, G is a normal, happy baby. He can throw a good fit, but he is often very happy and smiley. He is very active and engaged in his world. Right now he is just starting to reach for objects and building his vocabulary of baby sounds. He loves to smile at anyone who is smiling at him, and recently made friends with his own reflection. So far, he has not suffered any physical, cognitive, emotional, or social delays.