Medical Update 1/6/09

We are so appreciative to all our friends and family who have supported us with their thoughts, prayers, love and prepared meals :) over the first few weeks of Abby's life. It was certainly an adjustment to the path we thought parenthood would take us down - but we have an amazing support system across the country. We want to use the blog to not only keep everyone updated on Abby and all the fun things she does - but also to keep everyone who cares about her updated on her medical conditions - so be sure to click through old posts since only one can show up at a time - and we're going to try to be good about posting medical info as we get it. Here's the journey as it has gone thus far...

Abby was born after a healthy pregnancy and a fairly easy (compared to what we thought it'd be like based on TV and movies) delivery. In the final moments of delivery Abby's heartbeat wasn't able to be detected by the machines - and doctors filled the room to help. She was quickly vacuumed out. We're still not sure if that had anything to do with her health complications - we forgot to ask.

The doctors took her to clean her up and were very quickly able to tell us that our baby appeared to have Down Syndrome. Of course, we were stunned. We had passed on having tests done during pregnancy because we were in the wrong age group to have much of a chance of having a baby with Down's. They also told us that half of all Down Syndrome babies are born with a heart defect - and they thought Abby may have this heart defect. The pediatric cardiologist was doing rounds at that moment up in the nursery - so they asked to take her up to him right away. He did a sonogram of her heart and assessed that Abby has an Atrioventrical Canal Defect - or an "AV" canal defect.

An AV canal defect is a hole in the center of the heart between the wall where the upper chambers meet the lower chambers. Also, the valves that usually seperate the upper and lower chambers did not fully form as two valves - instead it is one valve. All this means that Abby's heart allows oxygen-rich blood to mix with oxygen-poor blood. Most hearts do not have a choice - they send some blood to the lungs and some to the rest of the body - because of the hole, Abby's heart sends most of her blood down the path of least resistance - which is to her lungs. Her body still gets oxygen-rich blood - her heart just works so much harder in order to do so.

Abby started seeing a pediatric cardiologist right after we left the hospital. Ideally she wants to see Abby gain weight and have surgery in which a surgeon would build the walls in Abby's heart when she is around 4 months old. They have told us since the first day that they could do the surgery tomorrow if necessary - they would just prefer to wait.

Abby started seeing a pulminologist in December when her oxygen levels were dropping while she fed. He prescribed oxygen while she eats. She hates it!! But it has kept her from turning blue while she eats. He hoped this would keep her from working so hard and burning so many calories while she eats.

Doesn't the oxygen tank match the decor nicely?

At the end of December Abby still weighed 6 lbs 14 oz - so we're trying a bunch of medications and mixing her formula so it has more calories per ounce. We do weekly weigh-in's and report them to her cardiologist who's been wonderful about coming up with all sorts of different things we can try to get her weight up. We'll keep you posted!