100 days too long..

I keep up with how many days that Zoey has spent in the NICU, and I have been hoping and praying that it wouldn't ever get to this point. But it did, and I couldn't help but feel down for most of the day, realizing that my baby has been in this world for 100 days now, and has yet to leave the inside of the hospital.  She has no idea what its like to be outside, to see the sunshine, to see her room, to see her house, or ride in the car.  There is so much that she has missed out on, and it just breaks my heart all over again whenever I think of everything.  She has spent a little over 1/4 of the year in the hospital .     =(

I can honestly say that this is the hardest thing that I have ever had to go through in my life, and while I'm trying my  best to be strong, the more days that go by..the less easier it is getting to be.  Thank God, that we are past the "waiting" point however, and something is finally being done...

The Study:

Monday, Zoey was scheduled for another evaluation of the gap between the two ends of her esophagus.  The last time a study was done the gap was a little less then 3 vertebral bodies apart, and it needed to be at a 2 or less for them to be able to do surgery.  I remember how disappointed I was at the last evaluation 4 weeks ago when they weren't able to do surgery...Even though I know she has grown a considerable about since the last study, I just didn't think it was enough to make the gap any closer.  So mentally, I had prepared myself for bad news.  I had already decided that it wasn't going to be close enough and that we were going to have to wait another 2 months before the next study.  I know this is not the way to think..But, I was hoping that by doing this, if we found out her gap was still not close enough, that I wouldn't be as disappointed.  So, Monday morning came and I was so sick to my stomach, I was so anxious just to know something.  Stewart and I went to the hospital 2 hours before the study so we could get some play time in with Zoey.  While we were holding her and playing with her, we had a bunch of nurses and doctors come by and tell us how they were all hoping and praying that it was her time for surgery, and so many of them said there was no way it wasn't going to be close enough to be fixed with as much as she has grown...I just thought they were saying that to offer hope and be nice..

But THANK YOU GOD, they were RIGHT!!! 

We put Zoey in a transport and we walked her over to Cook's Childrens', where they were waiting on us in the Radiology room to do the test.  I did not stay in there for this, although I could have because emotionally it was too hard for me to watch.  I stayed in there when they did the very first study when they thought there was a small connection but it turned out there wasn't.  Watching her choke and scream and cry, was the hardest thing to watch my baby go through.  I watched as her heart rate accelerated to over 300 and then down to 0.   I knew mentally I could not bring myself to go through that again.  I told Stewart I would wait out in the waiting room, and he made the decision to stay in with her.  Because it was happening under live x-ray from where he was sitting he could see the screen and he would immediately know if it was close enough, or if it had grown any. 

That seemed like the longest 10 minutes of my life waiting out in the waiting room, and from where I was sitting I could still hear her crying and screaming.  It was just as hard to listen to as it was the first time, and sitting out in the there all by myself I felt so alone and helpless.  I just wanted to run into the room and grab my baby and take her home.  Finally stewart walked out and he had such a shocked look on his face, and I immediately thought something was wrong.  But, he smiled the biggest smile I have ever seen and he said "its close enough!"  I couldn't help but cry and we just sat there hugging and crying, we were so happy..the wait is Finally over, and she can finally be repaired.  It seems like we've waited a lifetime for this, and that we've waited to hear that for so long, it seemed like we never would.  But we did. 

So now we are waiting to hear from the Surgeons on a date and time..it could be as early as this week sometime or it could be in two weeks, depending on when they can get there schedules coordinated. 

But, what is two weeks in the grand scheme of things when we've waited 14 long weeks just to hear that she is ready. 

I personally would rather have a little time to gather all of my thoughts, and come to the realization that little Zoey is having surgery..I've wanted this for so long now, and then now that I have to think about them cutting her open and doing pretty major surgery on a little 8lb baby its kind of scary. 

The road ahead of us is about to get pretty bumpy with surgery, and then recovery..and I hope Stew and I are able to handle this as well as we've handled everything else.  This has been so hard on us emotionally, mentally, physically, and financially...the back and forth and back and forth and waiting and hoping is really taking a tole on us..but at least we are "hopefully" on the downhill slide. 

I just can not wait until its time to bring her home and I don't have to go anywhere, or do anything but stay at home and take care of my two beautiful little girls, and we can finally be all together as a family.

Such a Happy Baby for everything she has been through! 

Rocking Time! 

Look how big she's gotten!! Any much bigger and they are going to have to get her a bigger crib! 

Daddy and Zoey!