One Month Update and Heart Condition

My Little miracle was One Month old on Friday!!  He is up to 9 lbs 12 oz today!!  He is starting to have longer and longer periods of being awake and active. 

I have all but given up on putting him on the breast, but I am pumping and giving him almost exclusively breast milk in a bottle.  I am finding it is just too stressful on both me and him. He is gaining well well on the bottle and my doctors want to keep it this way.

At the doctors today, she is very pleased with his weight gain.  One of the signs that his heart problem is starting to have an effect is when his weight gain starts to slow down. We know right now he is very healthy, but we have been told to expect him to start having issues in the next few months.

I know I haven't talked about his heart condition much, As of right now I am trying not to focus on the heart issue and just enjoy him.  But I have also started talking about it more and more and let our family and friends find out the details.

James has Tetralogy of Fallot (TOF).  He is considered a "pink tet" because he has had no issues with blue spells.  We know from the Echocardiogram that he will have less chances of blue spells, but he may start going into Congestive heart failure and will start having issues with his lungs and breathing and will need to be put on meds to help that. 

We know that at some point in the next 6 months James will have open heart surgery. We see the Cardiologist at Sick Kids again at the beginning of September, and at that point we will get a better idea of when his surgery will be.

While it is scary, the more we are talking about it, the more people we find who have had TOF, had the surgery and are perfectly healthy now.  We have been told that the only thing he may not be able to do is become a professional athlete because he won't be able to get insurance, not because of anything physical.  Many of the people we are hearing about are now in the 40's and have no lasting problems.