A letter to you...

My Dearest Zoey,

I am so sorry for everything you have had to go through, and I so badly wish that I could take it all away.  Every day has been such a struggle and trying to live a "normal" life while going through this is just impossible.  I am so proud of the strength that your little body has.  You have had to go through so much in this short time that you've been on earth, but thankfully it is while you are a baby.  Because, you won't remember all the days you spent in the hospital, you won't remember the days that Mommy and Daddy weren't able to be there to hold you, bathe you, and rock you to sleep at night.  But I will, and it breaks my heart every time I think of how much I've missed out on already...So many people say we have your WHOLE life to make up for this lost time...but those people were able to take there babies home when they were first born.  They don't know this feeling, they don't understand the emptiness I feel inside by not having you home with me...The time that I feel like I've lost out on with you, feels like a lifetime to me.
Every night I hold back the tears, as I lay your sister down to sleep, because I walk right past your empty crib, and am reminded of how you're not here with me.  Everyday I go get Abbey's Bumbo out of the closet for her to sit in, and I have to leave one sitting in the closet all alone...Friday's can't come soon enough, and sunday's come way too fast.  I never would have imagined that you would have to be in the hospital this long...I did so much research before you were born, to prepare myself for what I was dealing with...but I could have never prepared myself for the emotional roller coaster this was going to be.
You're surgery has now been scheduled for July 10, 2012, thats in 11 days.  While I want that date to get here in hurry, the feelings of you going into surgery make me sick to my stomach.  I can't imagine walking back into the prep room, kissing you goodbye, and them wheeling you away from me.  That was so hard the first time I had to do that, and they were just taking you back for a study...I cried and cried and cried, and I just wanted pick you up and hold you and run away somewhere where we could all be together and everything was going to be ok.
You have no idea how badly I want you home, there are so many people who want you to come home.  I can not wait until I can sit in the very back of car looking at 2 car seats with 2 babies in front of me.  It will be such a dream come true.
Last Wednesday for the first time in your life, we got to take you out of the NICU and this time not to be taken over for a procedure.  The ONLY thing I wanted to do was wheel you into where Abbey and Granny were waiting in the waiting room, and sit down and hold both of my girls, and that is just what I did.

The last time I was able to hold you two together was when you were two weeks old, and Abbey was about to leave the NICU...This is what perfect feels like. 

Granny was pretty excited to hold both of you together too!  It was her first time, and she was just beaming! 

I love you so much Zoey, and I hope you always know that!

Love,
Your Mom.

Click Here for : Abbey's Updates!

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! 

The Game Plan! =)

Just thought I would do a quick update for everybody!

Stewart and I are so very excited to let everyone know that Zoey is 8lbs 3.1oz!!!!!!!
Woo-HOO!  I can't not believe she is 8lbs I feel like it has been such a hurdle to get her here..but we are finally on the right path!

As of right now the study is tentatively scheduled for Monday, June 18th.  We don't have a time yet, just a date.  They will do it a little differently this time though.  Instead of doing it in the operating room with the intent to do surgery if its close enough, they will be doing the study under live x-ray in the radiology department, that way they only have to give her local anesthetics and she won't have to be intubated.  This gives us time to prepare for surgery both mentally and physically if she is close enough to be repaired.  That way any family or friends who want to be there for her surgery are able to come.
Luckily everyone seems to think that Zoey will be 100% ready to be repaired, and since she has gained almost 2lbs since the last study that helps out a lot as far as how her recovery will go.
I've realized though, that I have been praying for and wanting her surgery to get here so fast because I want her better and to come home...but now that the realization of she more then likely will be having her surgery this next week has hit me..I'm not sure if I am ready for it.  I just keep thinking of my little 8lb baby having surgery, and having to put my trust in God and the surgeons hands that she will be ok.
But I know that Stewart and myself have to be strong for her, and for Abbey.  This week and this next week will be so stressful though, and I am having such a hard time going to sleep at  night thinking about all of the things that are to come in the next few week.  I know we will get through this just fine just like we have every other obstacle, and in the end when I get to sit in the nursery holding both girls in my arm it will all be worth every bit of what we've had to go through.

Zoey is just a little bundle of joy though and Stewart and I look forward to the days that we get to go spend time with her.  She is working on her head control and really learning to like her bumbo, especially if you talk to her while she is in it.  She also loves to sit up in her bouncy chair and watch the Cat in the Hat.  I have never seen a baby so interested in a  movie as she is in the Cat in the Hat.  She has wonderful nurses that just love to play with her and spend time with her when Stewart and myself are not able to be there.  This last weekend we got to give her a bath for the first time by ourselves!  It was a little intimidating, but we managed...and we made it through without her screaming at us so that was plus =)