I wish I had some answers about Jack... believe me. But we don't really yet.
We came home Friday night from Philly, I missed the girls so much I couldn't stand it, I couldn't wait to get home and see them. As soon as we pulled in the driveway I wanted to cry because I missed Jack and felt so terrible, thinking about him all alone in Philadelphia. This is going to be my life for awhile I guess. No matter where I am, I have this horrible feeling I should be somewhere else.
We had a meeting with Jack's doctors Friday afternoon to discuss the test results they had so far. We were both a nervous wreck all day, waiting, praying.... they didn't see us until almost five o'clock and by that time I was really losing it (PJ was past losing it, he lost it about 12 hours earlier.....). And they pretty much told us, they still don't know what's wrong with him. His heart, brain and eyes all looked basically fine. But his lungs are really small and immature, and there are other little 'signs' that point to a bigger picture, possibly genetic. It just is not normal to be as old as he is and as big and still unable to breathe. There has to be more to it. So we wait for more tests to come back.
They did say, that instead of trying to wean him off the vent (like St. Barnabas was doing) they are going to crank it up, give him all the support he needs to get his lungs strong and healthy. That he NEEDS the vent right now, and there's no point in trying to get him off it until they get his lungs looking better. So, not good news but not terrible news either. The waiting is torture though. And the fact that he's going to be there who knows how much longer is not easy.
CHoP is amazing. I can't say enough about it. His doctor is so nice, everyone is so nice. It's just the most unbelievable place, I've never experienced anything like it. They try so hard to make it as easy as possible on you to be there.
I have so much more to say but need to go to bed. The girls are doing awesome, the grandparents took great care of them (I don't know what they were feeding them - they are little PORKERS). Katie is 6 lbs 10oz and little Charlotte is 5lbs 10oz. I couldn't believe how much they changed in just 3 days. They each gained almost a pound in a WEEK. I know to people with full term babies that still doesn't seem very big, but to us it seems huge. They are both almost double the size they were at birth!
I'm going to Philly for the day Sunday to see Jack and bring him some things, and my mom is going too. Then PJ is going for Monday and Tuesday... then, who knows. We'll take it a day at a time. I am so sad he won't be home for Thanksgiving. At this rate, he probably won't even be home for Christmas. My poor boy.
Please, keep all the prayers and good thoughts coming to him. He is such a sweet baby, and he needs all the help he can get. We ALL appreciate the amazing support we've gotten so much. I tell Jack all day, everyone loves you. So many people are praying for you and hoping you get better and come home!
See.... look at that face. Doesn't it just say, okay, Philly is nice and the helicopter ride was cool, but please, please, I just want to come home...