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 =)

My soon to be chunky monkey!

Just thought I would post a quick..HOORAY! YIPPE!! WOO-HOO!!

Little Miss Zoey jumped that 7lb hurdle last night and is 7lbs 1.5oz!

Getting Bigger!! =)

Just a quick update before Stewart and I head back up to the hospital for the evening since its been awhile!

Little Zoey is doing just wonderful!  After her study two wednesdays ago we found out that two ends of Zoey's esophagus were about two and half vertebral bodies apart.  We need it to be at two or less to have surgery.  So THANK YOU GOD, we are almost there!

Another study will be done in about two and half weeks, with the intent to do surgery if the two ends are close enough by then.  Both Surgeons were very optimistic (if we could get her on the right track and growing) that we will be able to have the surgery done.

When they did the last study they found out why Zoey's button was leaking so much, the ballon that fills up at the end of the button to hold it in place was almost completely blocking off the part of the stomach where the food exits into her intestines. So it took her much longer to digest food because it passed through so slowly, and by her next feeding her stomach had not had time to empty, and more milk being pushed on top of what was already in there was what kept causing the leakage.  However, another new button has been put in, this time one with a shorter stem so that it doesn't block off that exit as much.  As of now her leaking has almost completely stopped!  We also had a wound care team from the hospital come take a look at the skin around Zoey's button, and they gave the nurses a special spray/powder concoction to put around it.  It has improved 1000%!!! I am so happy about it!  She doesn't even fuss or cry or anything when you touch it or clean it, and it is now just a very pale pale pink instead of a bright angry red!

When they took her off of the IV last week she steadily lost weight for a few days.  This had Stewart and myself pretty concerned, but the neonatoligst assured us that is was more then likely fluid weight from the IV that was exiting her system.  They went ahead and put Zoey on continuous feeds instead of of a 2 hour feeding every three hours.  This way the food would have time to exit the stomach and not so much was getting pushed in at one time.  This means she is getting fed 24/7 but she is back up to full feeds and getting 27 calories per ounce plus they have added micro lipids to her feedings.  Since Monday Zoey has gone from 6lbs 7.5 oz to 6lbs 15.3 oz as of last night!  They are only weighing her every 24 hours so by 8:30 tonight we should know if Zoey has finally reached 7lbs!  It seems like it has taken forever to get here but I know this roller coaster ride that we've been on since March will be all worth it when we finally get to have our little family together for the first time.

This is what Zoey's button looked like before, and what it looks like now, after the wound care team has been looking after it! 

               BEFORE                          AFTER

Poor Zoey, you know that had to hurt so bad!

“Home is the nicest word there is.” ― Laura Ingalls Wilder

Well I did it...Abbey and I came home.  I went up yesterday with Mary, Jerry, and Stewart, and we went and picked up the rest of our things and came home.

We stopped at the hospital first and when I saw Zoey for the first time all weekend I just held her and cried and Stew cried.  I so badly just want to tell the nurses "Thank you for all your help but I'm taking my baby home!"  If only it were that easy =(
She is doing so wonderful though, and has gained up to 6lbs 7oz!  She is finally coming along and every ounce she gains is just one ounce closer to coming home!
I doubt I'll be able to make it until Friday before I see her again so I'm sure one day this week I will be making a day trip up to see her... Yesterday wasn't as hard as I had imagined it would be...When we left the hospital I was Ok, when I left my Aunt and Uncles house I cried for a little bit, but when we passed the hospital on our way home I fought back the tears as best as I could and I felt like my heart was just breaking in half.  I think just then it hit me that I wouldn't be seeing her everyday, and that I was leaving my little baby in that hospital and she wasn't coming home with us.

It was such a strange feeling when I woke up this morning in my own home, knowing that I wasn't just visiting.  I wasn't sure what to do, by now I'm usually up trying to get ready to go see Zoey, and instead I got to take my time getting up and relax a little with Abbey and rock her in that brand new rocking chair I have for the girls.  Abbey and I were able to break that in for the first time this morning too.  I had already given her a bottle but she wasn't quite ready to go to sleep, and I didn't want to wake Stewart up because he has a big day at work today so we went back into the nursery and rocked.  Then at about 5:30 Stewart came in there and woke me up because I had not only rocked Abbey to sleep but I had rocked myself back to sleep as well.

So we will see how this week goes, I feel like I am handling it pretty well so far but its only the next morning...I have a bunch of stuff to do today to keep myself busy so maybe I won't' have time to sit and think...

Finally gaining weight!! =)

Zoey is finally gaining weight!! YAY!! =)  She has steadily gone up and up over the last few days..and has not lost any..even if its just half an ounce we are grateful for every little bit!  As of today she weighs 6lbs 4.4oz!! I came home for the weekend, so I don't have any new pictures to post right now but I will be back with her tomorrow and am sure I will catch up on all of the picture taking I missed over the weekend!  I've talked to the nurses all weekend long checking on her and she is doing just wonderful.

I, however have been talking to family all weekend long about a tough decision I am trying to make right now..

Being home for the weekend has been wonderful for Abbey and I.  While I miss Zoey I can't help but feel like I should be home with Abbey more then I am, but the thought of not seeing Zoey just eats me up!  Zoey has the best baby sitters she could possibly have so I shouldn't worry about her.  But I have seriously considered moving back home and going back up Friday evenings after Stewart gets off of work and the two of us spending all weekend with Zoey.  Together we could spend more time with her Friday through Sunday then I am able to alone during the week.  I am allowed to call the NICU anytime of day, and sometimes find myself waking up at 2 a.m. to call and check on her, but it helps me feel better about not being there to see her, knowing that I can call and check on her anytime I want to. 

Its hard because Zoey isn't our only baby, and its hard to feel like I'm doing the right thing for both.  I am living away from home so I can go visit Zoey every day even if its just for an hour and half, but then because of that Stewart doesn't get to see either one of his girls until the weekend.  Its not fair to Abbey that she doesn't get to go home and be with both parents because I have her with me in Fort Worth.  So I haven't quite decided what I am going to do yet,  I feel so much relief on the weekends I come home, even though I call the NICU every two hours I know Zoey is ok..there is nothing we can do right now except let her grow and get bigger while we wait for surgery...other then that she is perfectly fine, and abbey is doing great, but she doesn't get to see any of her family either because I have her with me. 

So I have a tough decision to make and am not completely sure of what I want to do...I think I'm about to lose my marbles being so far away from home and my family, but I don't know if I will go crazy being away from Zoey when I'm used to seeing her every day....

=\