9 Days Old

Things have changed quite a bit now that we are in the stepdown unit. As you saw in the pic in the last post, we now have our own private room and are able to hold Audrey, feed her, and change her ourselves rather than the nurses and doctors doing those things for us. She is still sleeping a ton at this point being that she is both premature and also has had surgery that she is still recovering from. It's always a challenge to wake her for feedings every few hours but she is getting progressively better at it and taking more and more from the bottle.

There was some unexpected ventricular beats late last night that resulted in some medication and pacer tweaking this morning and today her rhythm was great all day. It freaked Amanda out quite a bit to see that on the monitor being that they are telling us we are so close to going home. It is so extremely scary to think about the negative possibilities after being under such close watch for so long now. I met with one of the EP (electrophysiologist) doctors today to talk about everything and go through a long list of questions I had jotted down last night. They are the cardiologists specializing in the heart's electrical system and rhythm and are the ones plotting our course of action. He spent a good amount of time talking through things and he was very reassuring that they weren't going to send us home until they felt very good about where things stand. Audrey will forever be in a high risk category with this condition and although it cannot be corrected through surgery, it can be treated through the medication and pacemaker. Unlike so many other illnesses that are widely researched and where there is a large pool of documented cases to gather information from, this condition is extremely rare and there just is not that wealth of knowledge on treating it. Many cases of Long QT are fatal before being recognized in a person so we feel extremely fortunate to have discovered it gotten treatment when we did.

Both kids came up and visited tonight and are extremely sweet and gentle with Audrey. Avery especially looks forward to the day when Audrey comes home. If all continues to go well they are telling us it could be by this weekend.

- Mark