For the first time in what seems like forever, I have something good to say... this will not be all doom and gloom. Shocking! I hope it's the start of a trend.
We drove to Philly yesterday to see Jack. I missed him so much - it's amazing how long two days can seem!! Anyway, he looked really great, not swollen, awake and alert:
We had a meeting with his doctor. We have been waiting on results of his genetic and chromosome tests. It's been torture. I have been absolutely positive that something was going to show up.... some horrible incurable disease. Even though we had the CVS test done while I was pregnant, I found out that doesn't test for every chromosome problem - it makes sure all the chromosomes are there, but it doesn't make sure they're complete, little pieces can actually be missing.
My eggs were old, and old eggs tend to equal chromosome problems. On top of that, I really don't know my biological father so who knows what genetic horrors are lurking over on that side of the family. The doctors also seemed to think this might be the answer to Jack's breathing problems. So we were obviously very worried. But...
Genetic test results: Totally normal.
Chromosome test results: Totally normal.
We had to keep asking the doctor to be sure we were understanding.... so ALL the test results came back? And there's nothing? Not one thing?
All those prayers, they're working.
I felt like I'd won the lottery. This means Jack maybe does have a chance at a normal life, if they can get him better. I can't even tell you some of the things I was worrying he had, and it still hasn't 100 percent sunk in that I can stop worrying about them.
The doctor said, all the 'little' things that may have pointed to a genetic problem are just that now, little things. Things that in a baby NOT on a vent, breathing on his own, would mean nothing. They're just Jack.
So now we're back to it just being about getting him to breathe... which obviously is still a huge problem but one that hopefully is fixable. The doctor told us they're going to keep trying to get him stronger, bigger, get his lungs healthier, his airway less swollen, and try and extubate him in the OR so they can get the tube back in easily if he doesn't breathe. An ENT specialist is working with them on it, and another neurologist is going to check his brain AGAIN just to make sure they didn't miss something.
It's going to take awhile, and they want to keep him at CHoP, which as hard, tiring, draining and expensive as it is going back and forth, I feel like it's worth it. They're the best. They can help him. We will do anything to get him better. I don't care how long it takes, just so long as in the end, he's home with us.
We still can't know for sure there was no damage to his brain from what happened Saturday, but so far all the signs are good that he's okay. It's like it's a miracle. I feel like Saturday was so hopeless, and Jack was never going to get better, was never going to be home. Now we have some hope. It's like we had to hit a real low before things could start to get better.
(I also got a new camera as an early Christmas gift. It's so great.... I hope my pictures are better now, but I have a feeling it's more user error aka I'm a terrible photographer than the camera :)
Gratuitous new camera cute baby girl pictures:
My chubby girls!!! Look at those chins!! You'd never know they weighed under 4lbs only a couple weeks ago.
I'm so happy to be able to share some good news here, I know how much everyone is hoping for the best for Jack and our whole little family. Thank you all so much for everything.