Last Tuesday, October 19th is one of those days that Bill and I will never forget. It was going to be an great morning because we were going to get to see our "little guy." It had been 7 weeks since we'd seen him last and we were dying to know what changes had happened over the past couple of weeks and how big he had gotten. But unfortunately, Tuesday would turn out to be the worst days of our lives. I know, it sounds incredibly melodramatic, but now, being in my shoes, I can honestly say that our lives will never ever be the same.
To give you some quick background, Bill and I are expecting our first baby, a boy, on January 14, 2011. His names is Stephen Charles Schwartz, and he's been named after his grandfathers. Tuesday was supposed to be a routine sonogram. At the 20 week ultrasound, the technician noticed a little "shadow" on one of Stephen's kidneys. We were told at the time it was nothing, probably just a shadow from the way he was laying in utero and it was nothing to be concerned about. At my next appointment with my OB/GYN at 23/24 weeks, the doctor reiterated the same sentiment. It was nothing to be concerned about, the baby looked healthy, I was healthy, and everything was great. At that appointment, I mentioned that we have no family health history of kidney disease, but that we have a niece (my sister's youngest daughter) was born with one kidney, instead of two. She's completely healthy, but only has one kidney. So, he said, "why don't you come back in 4 weeks and we'll take another look."
So...Tuesday was that day. The sonogram technician went through all his organs and everything seemed to be fine. Then she said, "there is no fluid around the baby. I don't think his kidney's are working." And that was all we heard. From there we met with the doctor who gave us the grim news that because the baby's kidneys had stopped working, he stopped producing amniotic fluid, and because there is no amniotic fluid, his lungs wouldn't develop. They sent us to a specialist that day to confirm what the ultrasound technician saw, and he confirmed, that Stephen has polycystic kidney disease (PKD). It was (and still is) devastating news. Basically the jist of the conversation was that our little baby's kidney's are broken and there is nothing we can do to help him except to pray for a miracle.
But as you will learn, we were are not taking "no" for an answer. Bill and I are resigned to find a team of doctor's that will help fix Stephen's kidneys and get his lungs working. And we think we are on the right track. As we learn more and more everyday, and talk with other families with children who have autosommal recessive PKD (ARPKD) (the type we believe Stephen has) and who have survived into childhood, we become more and more hopeful everyday.
I know this is a lot to throw out there all at once. We just ask that all our family and friends keep Bill, Stephen, and myself in your thoughts and prayers. We know that if we remain positive and ask God to watch over us, we will win this fight and Stephen will live a long and healthy life.