zoebeth.com

www.walkamerica.org/cburroughs

Hello everyone. Zoe, Leslie and I are walking again this year at March of Dime’s Walk America. This event raises money to support children born prematurely, like Zoe. The walk is this coming Saturday, and if you have an opportunity in your community to participate, we urge you to take part in this great event. If you’d like to support Zoe and help further research for premature births, you can click the link at the top of this email and make a donation.

Many of you may be familiar with Zoe Beth’s story by now. Zoe was born in late January 2004 - three months before her expected arrival date of May 5. She weighed 1 pound and 15 inches, and was about as big as a beanie baby. Zoe was on a ventilator for four months and hospitalized in the NICU for five. When she left the hospital, she came home to us with a trache and a feeding tube. We had 24-hour home nursing care until January 2005 and partial nursing care until that Spring.

And we were lucky. At the time of Zoe’s birth, we read that approximately half of the babies born in Zoe’s condition wouldn’t make it. If Zoe had been born 20 years earlier, she may not have had any chance at all. If you haven’t heard Zoe’s story before, click on Zoe’s Story over on your left there.

Since Walk America took place last year, Zoe has had many milestones, the most significant occurring this past summer. We travelled to Cincinnati to have a specialists reconstruct Zoe’s airway. Zoe and Mom lived there for two months for the surgery, recovery, and frequent checkups. At the end of the two months, Zoe had her trache removed. A year-and-a-half after she was born, Zoe was finally breathing normally. A wonderful result of this was Mom and Dad were able to hear Zoe “talk” for the first time. It was pretty much babbling at that point, but if you see her at the Walk, I’m sure she’ll be happy to talk your ear off. If she gets really crazy, she may even grace you with her William Shatner-esque versions of “Twinkle Twinkle Little Star” or “Itsy Bitsy Spider.”

Due to all of the hospitalizations, the tubes, the surgeries, reflux, etc., Zoe never has eaten by mouth. Her whole life she has been fed formula through a button in her stomach. Late last summer, we had sporadic eating - a half of a cracker one day, one chip the next - not the best diet for a growing toddler. Zoe began feeding therapy in the fall, and in January of this year, she began an in-patient program at Baylor Hospital’s Our Children’s Home to help with feeding. After five weeks, the program determined she was one of the toughest kids (aka stubborn) they’d ever seen and she was discharged. Zoe has been making some pretty significant strides in eating the past several weeks; however, she’s still not eating enough for us to lessen the amount of formula she receives through her tube each day. But that will work itself out someday.

We’re excited for this year’s walk, because we know Zoe will have a great time - walking, talking, laughing, playing. Who knows - maybe she’ll even chow down on some Texadelphia! The money raised at this event in year’s past directly helped Zoe become the Terrible Two she is today. We’re very proud that our family can support this cause and directly help other children that may be born a bit early in the future.

Again, if you’d like to help donate to this cause, you go to http://www.walkamerica.org/cburroughs and make a contribution.

And be sure to check out www.ZoeBeth.com in the near future - hopefully I’ll start updating this again pretty soon.

OK, OK…So it’s taken me awhile to update the site. Things have been fairly busy for the past couple of months - mostly because we have a full-fledged toddler on our hands. And boy can she toddle. Zoe is now walking pretty much everywhere. And she thinks she’s a master at it - which means we have some really dramatic falls.

But not everyone is excited about Zoe walking - Sugar, our beloved cocker spaniel, is pretty much miserable at this point. To let Sugar know we still love her, we let Zoe sit at her high chair and attempt to eat Cheerios. Zoe of course doesn’t eat Cheerios, and so she throws them on the floor for Sugar to eat.

Actually, Zoe has shown some good signs in eating over the past few months. Well, I still wouldn’t call it eating though. On occasion, she will eat a few Cheerios, nibble on a chip, taste some Jello, or sip a drink out of a glass…but that’s about it. In fact, you’re more likely to see Zoe “eating” imaginary food in her high chair rather than real food. Towards the middle of the month, we’re meeting with feeding specialist at Baylor Hospital to come up with a plan to make her start eating.

Last month, Zoe made her first two trips to Louisiana. In late August, Zoe started her cajun crawl with mom and Grams in Eunice, visiting Leslie’s family. She got to see her Great Grams again and meet Mr. Abner. Zoe was finally introduced to Chookie (Leslie’s Grandfather) and Judy. Zoe especially enjoyed the multitudes of cats that were hanging around Chookie’s house. Around Labor Day, Zoe went with us to visit my family in Shreveport. She had a great time playing with Mimi, Pops, and Uncle Kyle. She got to see Mamaw and Aunt Linda as well. Again - Zoe enjoyed the cats. Check out the Photo Album link above for some pictures.

We’ve been to Cincinnati twice in the past two months, each time for a scope of her airway. The first visit, the doctor’s felt it was still swollen too much, so they asked us to come back again. The second visit - a few weeks ago - the doctors felt the swelling had finally gone down. They noted a few little things that causes Zoe’s airway to be classified as “not perfect,” but overall, they’re liking what they see. They have asked us to wait three months before coming back up for a checkup in December. They also noted that we will likely need to bring Zoe back for an annual scope until she’s around 18 years old.

And as the temperatures begin to drop into the artic-like high 80s here in Texas, we’re reminded that flu season is just around the corner. The doctors have again stressed that we need to keep Zoe locked away this winter from the risks of flu and RSV. Her lung tissue and immunity system still haven’t caught back up to the damage that the prolonged stint on the ventilator caused.

Alright, that’s enough for me. Talk to everyone later.

Well we’ve been having such fun with our new tracheless baby that we didn’t realize it’d almost been a month since we last posted. Quite a lot has gone on in the past month. Where to start…

As you can see from the picture above, we snuck off to Disney World for a little bit. I was in Orlando for training last week. Zoe, Leslie, and her Mom flew up to Ft. Lauderdale to visit Kathleen’s sister and her family. On Wednesday night, they made it up to Orlando, and I met them at the Magic Kingdom for a speedy romp through Fantasy Land. We didn’t get there until 8:00 that night - but Zoe never shut her eyes until we left at 11:30. Zoe’s first ride was Snow White - a bit scary, what with the witch and all, but Zoe just chewed on her blanket and stared ahead. I guess if you have no idea what a witch is, there’s no point in being scared of it. Next was the hit of the night - Small World. Actually, it was the line to Small World that Zoe enjoyed the most, but she had fun on the ride as well. Next up was Winnie the Pooh, followed by fireworks, and then the Haunted Mansion. We arrived back at Small World, so we went on that one again, and then ended the night with the parade. Zoe finally konked out on the stroll back to the bus. She didn’t wake up until 10:00 the next morning.

Several weeks ago, Zoe decided she wanted to try red Jello. After getting a nibble of it, she began reaching for the spoon and pulling it to her mouth. MAJOR BREAKTHROUGH. This kid has always recoiled in disgust whenever any type of food is placed near her mouth. Then, while in Ft. Lauderdale, Zoe decided she wanted to snack on a cracker. Since then, she’s starting each morning with a Keebler cracker. She eats one, and then she’s pretty much done - back to the g-tube for the rest of the day. It’s definately going to be a long time before she’s able to sustain herself through normal eating, but the past several weeks have shown more progress than she showed in 18 months.

Since getting her trache out a month ago, Zoe has learned that she loves to hear herself make noises - clicking, clucking, screaming, jabbering, whatever. Her first word has been offically declared as “Yeah” - which she enjoys screaming emphatically. That was quickly followed by “da-da-da-da-da-da-da-da-da.” Every now and then she’ll shorten it to “Da-Da,” but rarely on command. She also seems to have a good handle on her vowels. The latest attempt at a word is “Pah” - as in Snoop-ah. Snoop would be one of our dogs. She takes a lot of prodding to say it, but she’ll kind of mumble it under her breath when Snoop’s around.

So very big steps for lil’ Zoe. And a few big steps for Mom and Dad as well. When we got back from Cincinnati this last time, we ended our nursing care. We’ve also turned in quite a bit of equipment and supplies for Zoe’s care, simply because those items aren’t needed anymore without the trache.

Zoe’s been thriving since we’ve gotton back. We really believe that she’s breathing better now than she ever has. As for her reconstructed airway, Zoe’s headed to Cincinnati for a scope on Friday to see how things are looking. We’ll let you know how that turns out. Check out the photo album link above for more pictures of Zoe’s Florida Adventures.

Zoe has passed her observation period with flying colors - A+! I think Zoe breathed better these two days than she ever has before. Her oxygen saturation has remained around 98% to 100% almost the entire two days. We’ve been discharged, and will be heading for the airport in a few hours. We can’t wait to get home.

Zoe is all smiles with her trache out.

After 14 months, Zoe is finally trache free! At 9:20 (EST) this morning, Leslie pulled Zoe’s trache out. Zoe was napping at the time, but soon woke up and has been happy as can be ever since. I tried to get a picture of Zoe waving her trache around, but she won’t touch it.

Zoe will be kept at the hospital until Sunday for observation. The big hurdle we have to get past is when she’s sleeping at night. There is a risk that Zoe’s trachea is weak where the trache was, and the trache was acting as a stint to hold it firm. If this is the case, when Zoe sleeps, this weakened area of the trachea will likely flop over and cause an obstruction in the airway. The solution would be to retrache Zoe and give the cartilage in her trachea more time to mature and harden. We obviously hope this isn’t the case, and have reason to be optimistic since Zoe was sleeping when we removed her trache, and showed no signs of stress.

Something we’ll have to worry a little bit about at home is the regrowth of the excess tissue that Zoe has had removed during the past two scopes she’s had. This issue is probably more likely to occur (about a 10% chance according to the doctors), but should be able to be fixed by simply removing the excess tissue again. We’ll be coming back to Cincinnati in a month for another scope to see how everything looks.

We’ve been hearing Zoe for a month now, since her trache had been capped. With the trache out, there are no major differences so far in her voice. It’s a lot less gurgally sounding now, since she’s not having to push air around the trache and secretions. This has been replaced by what sounds like a leaking balloon. This is the air leaking out of the hole where the trache used to be. Zoe will not have any stitches; the hole should close up on its own. You’ll notice in the picture above, Zoe has a piece of gauze taped over the hole. We’ve been told this should be gone in several days. The hole may close up very quickly, or it could remain slightly open for quite awhile. That said, we’re still under orders to keep her out of water - as the nurse said, “No swimming this summer.”

We are obviously incredibly excited - and scared to death - that her trache’s out. We’ll still be keeping Zoe on her monitors for quite some time - if only for our own piece of mind. Zoe does have a reactive airway, and there’s no guarantee that we won’t have to go through this again. I think Mom and I will finally stop worrying about a reoccurrence once we’re dead. But just as we’ve tried to take this entire ordeal one day at a time, we’re going to do the same with her new trache-less airway. She’s breathing normally - today. And that’s a huge reason for celebration!

With that said - thank you everyone out there for the many prayers, thoughts, and encouragements throughout the past 17 months. We thank God for giving us the resources and opportunities to get to this point - we are very blessed to be directed to these doctors and support staff in Cincinnati, and to have the health insurance to cover these procedures. We are thankful for our friends and families that have supported us through this. And I’m eternally grateful to my wife, Leslie, for the unbelievable care she has given Zoe. Zoe would not be doing as well as she is today without her Mom’s constant care. I thank God that he turned the scariest day of my life - when I could have lost both Zoe and Leslie - into the greatest miracle of my life.

I know we’ve got several more humps to get over with Zoe - this kid still needs to learn to eat - but today definitely feels like we’re getting close to finalizing this chapter of our lives. Please keep us in your thoughts and prayers over the next several days. We’ll let you know how she does.

Wednesday’s scope showed that Zoe’s reconstructed airway is holding up well - something Zoe shows she already knew as she inhales a big breath of air through her mouth this past Monday.

Zoe had her fourth bronchoscopy of the year this afternoon. According to the doctors, her airway is looking good. The doctors noted that the graft appears to have been accepted fully into the existing tissue of her airway. The swelling that was there a month ago has almost disappeared. A small flap of granulomous tissue that had grown recently just above the trache was also removed.

Zoe is resting tonight in the hospital. Tomorrow, she will begin another cap trial, where her trache is plugged and she is forced to breath completely out of her airway. The main point of the test will be tomorrow night when she has to sleep with the cap on. Last month Zoe completed her cap trial with flying colors. We’re hoping that happens again this time. We’ll talk more on Friday. Right now, I’m going back to finishing my bowl of Fruit Loops - the benefits of being at a Children’s Hospital.

Zoe’s 1st Plane Ride

We’re back in Cincinnati. Zoe will be having a scope performed Tuesday late afternoon to see how the graft is holding up in her reconstructed airway. We expect to be up here for a week, before heading back to Dallas on Sunday. For our fourth trip to Cincinnati, we finally decided to shorten the 2 day drive to a 2 hour flight. And of course, Zoe being Zoe, she demanded first class. However, rather than enjoy the comfortable seats, warm mixed nuts, and hot wash cloth, Zoe slept the entire flight - which was probably a blessing to the remaining passengers.

If you go to this LINK you can see a couple of video clips I just took of Zoe in the hotel room. Hopefully you can get an idea of what she sounds like these days. And, as the title of one of the video clips says, she sounds like a Gila Monster.

We’ll update the sight tomorrow night or so whenever we hear what the doctor’s think about her scope.

EDIT: The scope has been postponed until Wednesday. We’ll pass on the results then.