Update on Zoe's Lungs

Since a few people have asked (thank you for your thoughts) I just wanted to update everyone on what we were told about Zoe's lungs. When the doctors took a look at her older xrays (she had a few when she was first born and a few when she had pneumonia in Sept-Jan) it looks like Zoe's lungs have never really been "normal." She has always had a "haziness" in her lungs and they are not sure what exactly that is. At birth it was explained as due to her sucking in the amniotic fluid while in the uterus. When she had pneumonia it was explained as due to the infection. Now they are not sure if she has extra mucus causing the airways to get blocked which is why she has the atelectasis. Someone else mentioned bronchiectasis (http://en.wikipedia.org/wiki/Bronchiectasis) and this basically means that there is extra mucus plugging her airways. They don't know why there is this extra mucus. Their best guess is that she is either aspirating on her food or on her stomach acid when she gets reflux. So we are talking to the doctors about starting a reflux med. At the same time, we are waiting to hear about booking a feeding study as well as an upper GI test (http://www.medicinenet.com/upper_gi_series/article.htm).
Some of the other factors is that Zoe has an enlarged heart (she has always had this) and it is pushing on her left lower lung, making it difficult for the tissue to clear the secretions. Another factor is that Zoe had several chest infections this year, so that may be the cause of this extra mucus. We just have to wait and see if it clears up in time.
From what I know from other 1P36 parents, it sounds like many of our kids have these vague lung findings. So we do not expect to have an exact answer. It is a comfort in some ways to know other kids have been through this (for those of the kids that are doing well) but scary too (for those kids we know who aren't doing well).
I think I must be very tired (physically for sure but emotionally too right now) because it is almost like my brain is unwilling to process all of this until we know for sure what is going on. For now, Zoe looks great. Her lungs sound good (which gives me peace of mind) so we are hoping that she battled her last infection for this winter and we can move on and hope things clear up when she is well.
There are so many unknowns with Zoe that at times it can be overwhelming. The unknowns with her heart has caused us the greatest worry. Now we are a bit worried about the lungs (especially since it can put added pressure on her already stressed heart). But Zoe looks great. And we are planning a trip to Boston for work (we are told we can not fly right now but we were planning on driving anyway). So hopefully we will have a great trip next week.
The only other piece of advice we got was to carry our emergency plan, travel insurance, and NG supplies with us in case she gets sick. And from now on, we will be sure to watch her closely for signs of lung infection and bring her in right away.
So all in all- just another normal 1P36 day!