Never take a single breath for granted

I heard this song the other day and it made me think of Carley. So I had to make another video. I promise this will be my last. Anyway, when you listen to the song, pay close attention to two lyrics that really apply to Carley.

“May you never take one single breath for granted!”

Considering Carley struggles for every breath she takes, it really brings so many things into perspective. How many times do we ever stop and think about breathing. How many times do you hear a baby cry and wish they’d stop? I know I have. Yet, I’ve never heard my baby Carley cry. It’s so weird that I’d give anything to hear her cry, because it’d probably mean she’s in some kind of pain or upset or uncomfortable, but just to hear it would give me security in knowing that she was fine, that nothing was wrong with her and that she really isn’t facing the prospect of painful surgeries every two years. But she is and you know what, it’s still better than the alternative.

Another thing that I’ve taken for granted are the nurses that care for Carley. I’ve never met a more dedicated and caring group of people than the nurses in the NICU. As we get closer to having Carley home, my wife and I were talking the other day and she asked me “What if she doesn’t want to come home with us. What if she wants to stay with the nurses? I mean that is the only home she has ever known?” And I told her “You know, how lucky are we that our little girl is treated so well in the NICU that she wouldn’t want to leave. That when we aren’t able to be by her side, nurses line up ready and willing to give her all the love and care we aren’t able to because of work.” And it isn’t like they only treat Carley that way. Those nurses genuinely care for every child that comes through that NICU unit. They say it’s easy for one bad person to ruin the reputation of a whole group of people. But no matter how many bad nurses I run into from now until I die, I won’t ever consider them anything but angels.

“Promise me that you’ll give Faith a fighting chance”

When I heard that verse it was like God was telling that I had missed something. Maybe there is a reason we changed her middle name from Kay to Faith at the last minute.

I don’t know why, but I never imagined she’d be such a fighter. Boy was I wrong. I know sometimes I wanted to give up on her, but I just couldn’t. I mean there was no way she should have made it this far. No way. But look at her now.

I’m just going to step aside and know that no matter the outcome, I gave Carley Faith a fighting chance!

So remember, if something comes up, dance. Only one of two things can happen. You either succeed or you fail. If you fail, you now have a new lesson in life. So go on, dance. I know Carley's dancing! Your dance should be easier. And while you’re at it, pledge to the Children’s Miracle Network.

She's come a long way!!

San Antonio here we come!!!!!

Because Carley cannot provide enough oxygen for her body due to her lungs being so underdeveloped, her only hope is to have a titanium rib extension. The rib extensions would allow room for her lungs to expand. Then her lungs could supply all the oxygen her little body requires without having to depend on a ventilator. About a month ago we sent in her application for evaluation and we got a response today. Sometime in the summer of 2008 our little girl will be evaluated in San Antonio by the medical staff at Christus Santa Rosa Hospital. Although being accepted for evaluation does not necessarily mean she is accepted for the surgery, at least it gives us more hope than we have had in a long time.

Based on everything we were told when she was born, there are only two reasons why this is all possible. You. And Carley. Your thoughts and prayers mean so much to us and really have elevated Carley to another level. She couldn’t do it without your prayers. Thank you from the bottom of our hearts!

More news to report that truly baffles science. Carley has now been on a c-pap for more than 20 minutes. I’m sure our wonderful nurses can explain it better, but in essence, instead of the ventilator taking breaths for Carley, she does all the work. And she has been able to maintain her saturation levels and kept her heart rate down. She truly amazes me everyday. Nothing I face can ever compare to what that little girl goes through everyday. She truly is special.

Now for why most of you come here!

I think I scare her!



You really wanted to see me! I know.

Thanks to all once again!!

Children’s Miracle Network

The KLLL Children’s Miracle Network Radio-a-thon is this weekend and Carley is one of the Miracle Babies. For those of you who do not live in Lubbock, you can listen to the radio-a-thon over the internet. Click here to listen to KLLL Live.

Currently, Carley is on 96.3 KLLL’s website. When we were approached about doing the interviews for the radio-a-thon, I wasn’t exactly thrilled about doing it since I hate to hear my voice over the radio or on any recording. To me I just sound so different. However, after looking around that NICU unit and seeing some of the things Carley has access to that the money raised by the Children’s Miracle Network has provided, I had to do it. How could I not. I’m not one to ask for money, but since this is for an excellent cause, I hope you’ll support KLLL in their effort to raise funds at this years’ radio-a-thon. The money raised benefits everyone in the community. I hope no one ever has to use the different things that will be bought with this money, but it’s nice to know that if you ever need these items, that they are available.

Princess Strawberry Shortstuff!

Not much time to post a blog today, so a video will have to suffice. Allyson bought her a strawberry shortcake dress. I think it was a shirt but it fits perfectly as a dress! Hope you enjoy.

Carley Marie

Today little Miss Carley had a MicKey button put in. The MicKey button is smaller and less bulkey than a G-tube. When I got to the hospital to see my daughter, she was watching television. But unlike other times where the TV totally controls her, this time she had a sheepish grin on her face. Something didn't seem right. Usually if you get between the TV and Carley, she literally throws a fit. But not this time. She glanced up at me with a "look what I did" look. Then I noticed that her onesie was wet. I called over one of the nurses and when we pulled up the onesie, her mickey button was nowhere to be seen. Her nurse immediately came over and said,

"Carley Marie!??!"

The nurses have even given her a different name. Well, regardless, they were able to put a new MicKey in and Carley was very content with all the attention.

Of course she got away with it. The nurses blamed it on a faulty MicKey.

Here are a few more pictures of Carley Marie.

In this picture she is wearing one of her Valentines Day bows that the Tammi and Grady gaver her for Valentines Day.


Apparently the NICU had a Betty Boop look-a-like contest and Carley Marie won!


Tech's Number One Fan!!




So What is a MicKey ??
A Mickey is "a gastrostomy tube that is held in place by a balloon inflated with saline. A MicKey tube is a "balloon" type. A MicKey is much easier to replace. You can change it at home on your own, which is actually not as daunting a task as it sounds. It can be very convenient when you accidentally pop the tube out at 3 AM. In addition, you may have an actual tube that protrudes from the body (a Gtube) or a gastrostomy button which lies flat, or mostly flat (again, depending on the manufacturer) on the stomach. When using the button, you attach a feeding tube to the button and remove it when you are done feeding the child. Some surgeons will place a g button directly. Others will place a tube first and watch for any complications, then place the button. Guidelines for replacement are also the choice of the doctor. Some like to replace every six months regardless. Others wait until there is a leak or other problem."

I’m off to see the princess…

The last time I saw Carley, she was in a very good mood. She had just finished watching her daily dose of Madagascar. The other day the NICU got a new TV that has a DVD and a VHS player. So now she gets to watch DVD’s and one of them happens to be Madagascar. The nurses say she loves the penguins but that parts of the movie scare her.

When they first started letting Carley watch TV, she was watching Baby Einstein in like Spanish. Bailey overheard one of the nurses’ comment that Carley could already understand Spanish. Bailey then got really upset because earlier that day Emiley had told me that she had “mocosh” (Spanish for boogers); and Bailey thought that now both her sisters knew more Spanish than her.

When I got back from Memphis I had dinner with Kristal and the girls and then I went directly to the hospital to see Ms. Carley. When I got there she was wide awake and looking around the room. About 10 minutes later, she was out cold. I’m sure she was still upset with me for not going to see her in over a week.

One of the nurses told me that while Carley was watching Madagascar, she tried to switch the movie back to Baby Einstein but that Carley would have no part of it. Carley cried and turned her back to the television. After the nurse put Madagascar back in, Carley slowly turned back to the TV and was content again.

Speaking of new televisions and other toys that Carley enjoys. The other day, Kristal and I did an interview for the Children’s Miracle Network radio-a-thon that will be held later this month. I’ll tell you one thing; Kristal missed her calling in life. She is a natural at the radio. During the interview she gave some awesome questions while I rambled on in so many directions that they have asked us to come back to I can re-tape my part. My answers were like one of those dreams you have where you start off at a football game then all of a sudden find yourself at your grandma’s house with a unicorn following you around. I guess my interview was kind of like this entry, all over the place. Well, I better head off to see my baby play her game and then head over to see my “miracle” baby. Have a great weekend.

Special Thanks to Alyson and Carrie for supplying the photos for today's blog entry.

Away

Well I must say this blogger thing may take a little more time to develop as I am now traveling and will not be able to update the timeline until I get back. I'm going to write this as if everyone already knows exactly what is going on. For those of you who stumbled upon this blog and don't know the full story, come back in about a week and hopefully by then I'll have the whole story up.


As some of you know I have been sick for over a week now. I caught whatever is going around the Hub, some kind of upper respiratory illness. Since Carleys main issue is respiratory, I have not wanted to risk her getting sick so that I could get the satisfaction of seeing her. Then I left for Memphis on Thursday so I haven't had a chance to see her for over nine days. I missed her 4 month birthday which was yesterday. But even if I had been home, I wouldn't have been able to see her because I'm still sick.


In the meantime her nurses have been keeping me posted with pictures. There are some cute ones. There is this one where she is telling everyone they are number 1 (sometimes I'm afraid it's aimed at me because I haven't been there to see her in some time).


For those of you that have never met Carley, she has the biggest eyes and she has an amazing ability to convey how she is feeling by the expression of her eyes and face. Her nurses are really good at reading her.
In this picture, she is wondering why you're surfing the net in your underwear.



Well, don't be afraid to leave a comment. Thanks for listening, but as you can see, I'm boring everyone including Carley so see ya'll soon.

New to this blogger thing!

Well, my wife has been bugging me about starting a website for Carley for some time now. When she was born I thought a blog would be a great way to keep people updated about the day-to-day progress of our daughter. So here I am, trying to make this work. I guess I can't procrastinate anymore. I'll go back and try to fill you in on all that has happened up to this point.

In summary, our daughter Carley was born in October about a month premature...