Heart Update

We had our visit to the cardiologist today -- a visit we've been anticipating since the day after he was born. Today we learned that Jonathan's heart and lungs aren't showing major signs of stress. This is a good thing - no enlarging of the heart or pulmonery vessels, no leaking in the heart valves. I'll try to describe his condition without being too medical or technical. I'm not a doctor, but I'll try to accurately describe what's going on.

We did learn that he has another defect we didn't know about a month ago. In addition to the AV canal defect (hole in heart, deformed valves), and septal defect (common to many newborns - should heal eventually), he has a small hole in his aorta that's leaking blood back into the heart. Normally, this closes up. But it's a significant problem because the blood is sort of swishing back and forth in this one spot.

He's back up to his birth weight, but not really growing. He's eaten really well the past few days, though. We're going to put vegetable oil (of all things!) in Julie's milk. This prescription will give him a significant caloric boost. If we can get him growing (adding about 1/3 to 1/2 ounce per day to his weight), we'll be able to have one surgery in 45 to 60 days. Then, the surgeon will do an open heart procedure and fix all the defects at once.

If he doesn't gain the weight, we'll have to do a preliminary surgery to fix the aortic hole and possibly put a band on the vessel that leads to the lungs. We're lucky that Jonathan's lungs have stayed tight. This has protected the tiny vessels there. But, tight vessels are a risk for surgery and post-op recovery. However, if the vessels relax, we're on the clock to get the blood pressure to the lungs under control (i.e., the band around the vessel). Relaxing is a good thing, though.

We'd like to only do one heart surgery. So, our fervent prayer is that he will gain the weight and start on an upward track. If his lungs relax, too, we're in an ideal situation. If you want something specific to pray, this is it.

How we are feeling:
Several of our "new friends" have walked down this road. Most report that the baby takes off once all this is fixed. This inspires hope.

Julie and I still get the feeling of sadness around this. When we go to the doctor, it seems that we learn about another obstacle. We love him so much and it seems that he's got all this stuff wrong with him. However, if we see these as challenges, then we can look up. Challenges are made to be dealt with and overcome. This is not a curse... although it sometimes feels like it. It's not. This is God's will for us, and we're learning how to live and learn inside it. God allows success, failure, wealth, poverty, pain, and joy for believers as well as those who don't know him. So, we're not asking "why us?" I personally have bouts with anger at the fact that we have all this to deal with. It's really an unmet expectation. But, like any other adjustment, this will get better.

Julie and I talked with the parents of a child with Downs yesterday. The child is 2, and his Dad said that now he wouldn't change or take away his son's Down Syndrome. His son has been such a blessing to their family, and the condition has been the vehicle for all that. His comments were unbelievable to us. But, what an incredible reality we have to look forward to! We can't wait for the time that we start to feel that way... on whatever level.

Thank you all for your continued prayers. We need them. Please pray for Julie and I. We need some extra grace right now. Your support through this has been a balm. Note: the picture above is from playtime tonight. Thanks to Nana for Jonathan's new Christmas pj's.

Jamie