4.1.09 Visit

We went to go see Christian in the morning about 9:30 am, when the doctor typically does his rounds. We found out more information about his condition today, and Doctor H said that christian has something called PIE (Pulmonary Interstitial Emphysema). Basically, the condition can result from prolonged ventilator assistance and an overpumping of the fragile lung sacks, which is why they chose to put him on a separate ventilator. Though we still don't completely understand what is happening and what this means, I remember the doctor saying that they had to get him off of the ventilator soon to minimize any serious lung scarring. When we saw Christian, he looked well. His color was back and he looked better than he had the prior evening. The doctors had taken away him feedings as a precaution but they are back on at 1.0 mL per hour right now.

We went back to see Christian this evening after shift change at 8:00pm. He still looks to be doing well, and his vitals seem strong. He reacts very well when Michelle and I talk to him, and the nurses suggested recording our voices while reading a story so that they can play it back to him if his vitals drop. His heart rate dropped once tonight while we were there but he pulled himself back up on his own very quickly, within 10 seconds. We don't know what is going to happen at this point and it's really scary... We aren't totally clear about what the PIE condition means, nor how badly he has it. From our research online, it seems preemies are supposed to have this condition at 72 hours or less after birth, not this far along. It also stated that this condition is only present in about 1-2% of preemie babies. I stopped reading because I didn't want to scare myself or Michelle... sometimes too much information is a bad thing. There is mortality associated with this kind of condition. Hopefully we will get more information tomorrow when we see the doctor during rounds.

On a positive note, the doctors could not hear any signs of his heart murmur today, and they think it may have gone away. Also, Christian looks very close to opening his eyes! they are becoming more and more unfused each day. We love him so much, it is so difficult to leave him.......