We want to let you know that when that fabulous day comes and they say we are free to go, we will be secluding ourselves for some time. This is for a couple of reasons. One, we need a chance to just be. We have never been just the three of us and we need that. We are not trying to deprive anyone of anything, but we need some time to be a family on our own. And secondly, as any CDH parent can attest to, being the the real world with real germs is very scary. ***If Charlie gets a cold, a virus, a bug - it could kill him, or at the very least, make for a major setback or land him back in the hospital on the ventilator. He only has one good lung. If he were to get an infection in that lung... I am sure I do not need to point out the obvious. So, once we do have visitors, please stay away if you even think you are coming down with something.
In all honesty, we were told to keep him secluded for up to year by Dr. Bode. The nurses painted a somewhat less frightening picture, but still say no kids, no crowds, and good hygiene are an absolute must. So, unfortunately Charlie is not a "normal" baby quite yet, and maybe won't be for sometime. Its very scary and the thought of coming home with that hanging over our heads is very overwhelming, but we are just so thankful that at least it is not winter time anymore! But again, please do not take any of this personally when we come across as overbearing and protective. Its just the way we have to be for Charlie's sake.