I'm sorry I haven't updated this blog enough over the past few months. Besides the picture posts I am trying to catch up on, I have had so many thoughts and updates about the boys. However, some things just don't get done, and when things get crazy, the blog is one of those things.
James has Down Syndrome. I mentioned that once, and at that point I hardly thought we'd need to mention it much more. His doctor declared him a healthy baby with no problems other than this extra chromosome floating around. However, during the first few weeks of James's life, we struggled to get him to eat, and I believe we really fought for his life. Our doctor was still sure that things would work out just fine as long as we kept doing what we were doing, but we were struggling to get even a milliliter of milk in him, at a time when he should have been taking in hundreds of milliliters. I breastfed him almost exclusively for the first week, until a weigh-in before and after a feeding revealed that he wasn't taking in any milk. At all.
When I think back on that week and realize that he hadn't been getting any kind of food, I shudder. And I thank God for a friend, Kathy, who recognized that James was in trouble. She used to be a neonatal nurse at the hospital, and she supplied me with preemie bottles and nipples, a scale, a daily check-in, and a wealth of information about how to best help James conserve his energy. He slept most of the time, never cried, and was a very lethargic baby.
Slowly...slowly...James gained weight. Our doctor felt that all was going well, and even began to doubt that James had Down Syndrome. However, we finally received the chromosome test that confirmed he indeed had DS, and our doctor referred us to a pediatrician in town (there are very few pediatricians here, so most people take their kids to a family dr.).
Our new doctor, Dr. R, is known for being pretty brusque. Very thorough, but no bedside manner. He came into the room with confidence, and began to examine little James. In the silence, Jon remarked how grateful we were that James's heart was healthy, which is uncommon among Down Syndrome kids. Dr. R looked up sharply.
"Oh James has a heart murmur. A pretty loud one."
Those words confirmed our fears. James's sleepiness, his struggle to gain weight, his hard breathing--we didn't know if that was just a typical DS baby, or if there was something more wrong. A heart murmur made sense.
We were at the Children's Hospital in Little Rock the next day.
Children's confirmed a hole in James's heart, called VSD. The hole was causing some of the chambers of his heart to have high pressure, some to have low. One of his valves wasn't closing correctly because of the hole. There was fluid building in the tissues of his lungs. His heart was working as if he were running all the time. We were sent home with diuretics and formula to add into the breastmilk.
The change in James was dramatic. We began celebrating ounce after ounce of weight gain, and then half pound after half pound. He was awake more often, and then he began to kick his legs, notice his surroundings, and even start to cry a little when he got hungry. However, his breathing was still labored and he was well below the weight he should be. The day before Thanksgiving--our most recent visit--confirmed that the hole was not closing up. The high pressure on his lungs would eventually cause long-term damage, and the aortic valve was starting to show signs of distortion. The doctor gave us strict orders to keep James away from any possibility of contracting RSV (which could land him in the hospital and cause severe damage), and he suggested we come back for surgery within 4-6 weeks. The nurse called the next week with a surgery date in two weeks. The 14th of December.
The past two weeks have been stressful. We've kept James away from infection as much as possible, learned about the surgery and the procedures surrounding it, and come to terms that our tiny baby boy was going to have open heart surgery.
Tomorrow we leave for Little Rock. Monday is a day of pre-op tests and talks with the doctors. Tuesday is the surgery. I'll do my best to keep you updated on this blog. I know so many people are praying for us. God is good, and has shown His provision for us in so many ways these last few months.