March for Babies!

This will be my third year walking for the March of Dimes walk, formerly Walkamerica, now more aptly named "March for Babies." Of course, the March of Dimes current campaign is geared towards premature birth, but I like to think they still help with research for birth defects as well.

Not to mention, I have a number of friends who have been affected by premature birth. My friend Audra, lost her twins at 23 weeks; my friend Vanessa has a 27 weeker who is now 16 months old and doing well; our sitter, Chrissy's twin sons were born at 32 weeks, and the list could go on and on. It's definitely a worthwhile cause!

The walk for the Triangle area is April 19th, so I'll be trying to raise $$ until then. If you feel like it, throw $5 or $10 my way! Online contributions make it so easy! Thanks!

Story of the first ASO performed at Duke....?

The other neat story I have from the Radiothon was from a Duke employee who helps organize Radiothon. She mentioned that she has a friend that she has known for several years through sports their kids play, etc. and that she had just recently learned that the friend's 22 year old daughter, is a TGA kid and was likely the first Arterial Switch Operation recipient at Duke in 1985. Twenty two years later, she is doing very well with no complications! It's a short & sweet story, but another one that made me very happy and left an impression!

Story of a 44 year old Transposition Survivor...

Do you ever feel like God puts you in the right place at the right time and you just happen to talk to the right person... I had one of those moments at the Duke Children's Radiothon last week. A little background... I spent a few hours in the morning working on the "phones". I ran into one of Jacob's nurses, Mary Jo. She was a PICU nurse for 17 years and left PICU for the "clinic" just last year. We had a very interesting discussion about the history of CHD and all she has seen. She relayed that many years ago, TGA babies were the sickest she cared for. HLHS babies were basically sent home because nothing could be done. She has seen an amazing amount of advancement in the treatment of CHD.

Later on in the day, I volunteered at the "Merchandise Sales" table, which I loved because I got the chance to talk to lots of people. Anyone who knows me IRL knows I love to talk! One woman, I'll call her, "Lynn" came up to peruse the T-shirts, and other items we were selling with the Duke Children's logo. She was wearing a shirt that said, "I got my New Heart at Duke."
Here is a part of our conversation:

Me: I like your shirt!
Lynn: Yep, 21 months now.
Me: My son is a Duke heart patient.
Lynn: I have been a Duke heart patient many years.
Me: My son has a congenital heart defect.
Lynn: So do I.
Me: Really, which one?
Lynn: Transposition of the Great Vessels.
Me: Wow. That's what my son has.

We went on to discuss that Lynn has had 5 open heart surgeries and two strokes, culminating in the heart transplant 21 months ago. She told me she was born in 1963!! This would make her around 44 years old. She had her first surgery, the Mustard, in 1975. She related she has spent a lot of time in hospitals and her health has obviously not been great. I told her that of course, Jacob had the arterial switch operation, and as she was well aware, that was the only "planned" surgery he would need barring no complications. She was off to work the phone bank, but it was a less than 5 minute conversation that I will NEVER forget. How different Jacob's life will be only because of the advances made in medicine. Dr. Jatene - we thank you & salute you!!

I believe "Lynn" to be one of the oldest living survivors of Transposition & the Mustard/Senning. I did some good ole Googling and found several people who are 35 and claim to be the oldest TGA people. I did find one 44 year old gentleman too. If anyone knows of an older one, I'd love to hear about it.

I do have another Transposition "survivor" story.... it's a good one too. I'll save it for later!

Happy CHD Awareness Week! - Feb 7-14

The reason I started this blog was in part to chronicle Jacob's adventures, but it was also to raise a awareness about CHD and to share Jacob's journey with CHD. As many of you know, he had a very scary start in this world and we are so lucky that we have him with us today. He has a smile that lights up the room.

Tomorrow, on Valentine's Day, I will spend a good chunk of the day volunteering at the Mix 101.5 Radiothon for Duke Children's Hospital. I hope you will take a moment to make a donation, even if it's just $5! 100% of the money raised goes to programs for kids at Duke Children's: sending a DC kid to a special camp; buying toys; computers; magazines; research & development; etc.

Also, in honor of CHD Awarness Week, I hope you will visit this fabulous Learn About CHD Blog:
(and thanks to Emily's blog for making me aware of it!)



Happy CHD Awareness Week!

Monday's Adventure at Epcot

Before I go into the rest of our day at Epcot, I feel like I need to explain why we decided to take a 16 month old to Disney World. Of course, I realize he won't remember the trip. We've been to Disney before and we enjoy it and we hoped it be about having family memories for Jeff and I. I also think that when Jacob gets older, he'll appreciate having pictures of himself with Mickey & Pooh, and at Disney. I'm sure we'll go back, it's not the only trip we'll take, so there will be plenty of future trips when he is older.

The trip was originally hatched in January 2007, when Jacob was but 5 months old. My friend Heather, is a huge Disney fan, and we've always dreamed of taking a trip together. Disney was having a sale for specific dates in 2007 that included 40% off room rates. Some dates were in December, and I had not been at Christmas since I was a kid. Heather's daughter, Caitlin, is exactly 9 months older than Jacob, so Caitlin was going to be 2 and Jacob 16 months. So the original reservation was to go with our friends in December 2007. In February 2007, we flew to Florida to take Jacob to visit my grandparents who are unable to travel to NC. They just loved him to pieces and since we had a trip to Disney planned for December, we told them we'd see them in 11 months, and they were excited we'd be back so soon.

Over the course of 2007, Heather, Jed & Caitlin had to bow out of the trip for various reasons. Since we'd promised my grandparents, Jeff & I decided to forge ahead and invite my mom along. She was agreeable to going. At some point, we realized it was no longer going to work for the Jeff, Jacob & I to stay with my grandparents in their small 2 BR house. So, we decided to rent a house for all of us to stay at. Might as well get one with a pool too! So the trip became about spending time with my grandparents and for my grandparents to spend time with Jacob. Disney ended up being the secondary reason for the trip. I found the right house, then delayed in booking and missed out on staying there for the first two days of our trip, so we booked the Hilton. There!

Back to Epcot on Monday, Dec 10!
So, after the Epcot Character Spot, we wandered around aimlessly some more. At this point, I remember thinking Jacob felt like he was starting to run a fever, poor baby. He was also having a lot of nasal drainage. He was acting okay though. We went to check out Land of the Living Seas - he loved the aquariums and we had the place just about to ourselves, so we let him roam and we followed him around. He was so funny. Finding Nemo was broken, so we couldn't ride it. : ( We went over to Fig's Journey into the Imagination and we did ride that, but Jacob was not much interested. He just wanted to run free! He did not like being held or cooped up on a ride. He was okay however in his stroller! Thank goodness for that. We went back and Nemo was still broken. Jacob seemed to be fading, so we headed out of the park. You'll see the pictures of him slumped over the front of the stroller. Little Mr. Independant refused to lay back and sleep in a comfortable position and decided that leaning forward was better. He slept that way on the entire stroll to the car. We got him loaded into the car, and our plan was to head back to the hotel, load up the car with our stuff, check out and then go back to Epcot to kill time until 4 pm when we could check into the house.

So we did. And of course, like previous days, Jacob fell asleep immediately in the car. We were able to keep him sleeping in the car while we stopped at a beach type shop and I ran in and tried on a few swim suits and bought one. Then I ran into Qdoba and picked up lunch for Jeff & I. Jacob still sleeping in the car seat. By the way, we bought a Cosco Scenera cheap car seat for $50 for the trip - it's only 9 lbs, easy to install, etc, and apparently, Jacob found it very comfortable for sleeping! So, we headed back to the Hilton, ate our lunch, tried to get Jacob to nap, but he refused. We finally got checked out by about 1 pm and headed back over to Epcot. When we got back, Finding Nemo was finally open. We attempted to get in line and Jacob did not want to be held through the line. He wanted to walk. Walking was still novel to him, he'd only been doing it about 2 months! The problem was he also didn't want to hold our hands though. We waited through the line hoping he'd cooperate, but he refused, so we jumped out of the line at the last minute. After strolling around, he seemed happy & in a good mood. We gave it another shot. We got back in line for Nemo. He was okay through 90% of the line and did not really freak out until we actually got into our clam-mobile. Then, he threw a fit through the entire ride and wanted to sit on the floor of the clam-mobile. Jeff and I decided that would be the last ride we tried to take him on! We loaded him back up into the stroller, and he was fine. We decided to take a spin around the Worlds of Epcot. First up, Mexico. Jeff and I split a frozen margarita. Oh how have we missed this delicious conconction at Epcot all these trips! It was wonderful!!! We completed our tour of the worlds and it was finally about 3:45 p.m. so off to our house - Shrek's Hideout - we headed!

Disney Continued - Sunday and into Monday...

So, we left MGM, or whatever you want to call it now. We got Jacob loaded into the rental car, and he fell asleep literally before we could get out of the parking lot! Jeff suggested that maybe we could try to go and walk around another park and he'd just sleep in the stroller. So, after short discussion, we headed towards Animal Kingdom. As we arrived, Jacob was still sleeping. We tried to ease him out of the car seat and into the stroller. He kept sleeping... at first. We did not get far at all and he started crying pretty good. No Animal Kingdom for us! Back into the car, and I think he fell asleep again. So we headed back to the hotel. But of course, by the time we got him back there, he didn't want to sleep anymore.

We headed back over to Downtown Disney. By this point, I realized that I had forgotten my swimsuit! Yes, that's right, we had rented a house with a pool, and I had no swimsuit - not going to work. We decided to check out the suit options at DTD. In a word, not good. Expensive. Only one store had it - Team Disney. We walked the entire DTD. We did stop at McDonald's for a $3 shake and $2 fries - everything is more at Disney! A Double Cheeseburger meal is about $6 or $7! Crazy! So, after looking in earnest for a suit, we abandoned the cause and headed back to the hotel. I'm not sure what else we did that day. I think we weighed dinner options. Considered Benihana (in the hotel) and decided against it. We opted for some take out food from the hotel's sandwich/pizza shop. It was okay, but not great. Jacob went to sleep okay, maybe another 5 minutes of crying, but again, we had to be so quiet.


Monday, Dec 11:
In case you don't know, Jacob is an early riser - like 6 am, which helps when you are trying to get out the door, but isn't good when you want to sleep in. However, I seem to remember that on Monday morning, we did not hear a peep out of him until about 7 AM. It was bliss.

So, up we got. Epcot was on the plan for the day. Also on the plan was packing up our stuff, checking out of the hotel, and into our 4 BR house, where we would meet my mom & grandparents later in the day. Off to Epcot we went. One of the first things we did was the Epcot Character Spot. We thought we'd wait in line and get Jacob's picture taken with Mickey. As it turned out, we actually got to take pictures with about 5-6 characters! It was awesome. We got great pictures and I've uploaded a lot of them to Shutterfly if you want to peek. www.jacobjones.shutterfly.com Jacob loved the characters!! However, he did not love much more about Epcot...

More on our Disney Trip - Saturday & Sunday

First, I really want to get better about blogging. I really enjoy going back to read up on what we were up to a few months ago, etc. Right now, I feel so behind because I feel like I need to post more about our Disney trip, and then of course, Christmas!

So, here goes... I'm going to try to post more!

Okay, so back to Disney...
Saturday Dec 8:
We arrived on a Saturday. As indicated, we checked into the Hilton Walt Disney World in Downtown Disney. Great location - walking distance to all the Downtown Disney fun. We got all checked in and since we had 6 day passes, after our trek to the grocery store for supplies, we went over to DTD. It was nearly dinner time at that point, and since it was Saturday, it was quite busy. We ate at Earl of Sandwich and Jeff fed Jacob outside while I fought the crowd to get us some grub. I've heard such great things about this place, but was really less than impressed on food quality, value & portion size. Oh well... Afterwards, they had a high school band playing, and we checked that out for a little while. Jacob seemed to enjoy the music. We finally headed back to the room, and put Jacob in his crib in our interior hallway. Okay, that sounds like we stuck him outside the door, but really, this room had a fairly long hallway from the actual door to the room. We were able to put the crib in the hallway and put a blanket up to give him some privacy. He only cried about 5-10 minutes and went right to sleep, but we felt like we had to be very quiet. It was a little tough.

Sunday Dec 9:
The plan was to get up and go to Disney Studios, formerly known as MGM, and now to be known as Hollywood Studios, which is pretty odd considering I think of Hollywood as being in California and not in Florida. Now, Jeff and I have had two big trips to Disney since we've been married and each time, we've been those commando types who get there 15 minutes before the park opens and then when it opens, we high-tail it to whatever major attraction... We managed to get up and get out to DS prior to opening. So we were waiting with everyone for the park to open... and then it opened, and of course, everyone heads to Tower of Terror and Rock N Roller Coaster, but we really aren't thinking we'll be doing that stuff, so we kind of just wander around, not knowing exactly where to go. So, we headed straight, where everyone else headed to the right - if you've been there, you know what I mean... Jeff mentions, let's go check out the Great Movie Ride. It's something we did on our first trip in 2004, but it did not merit a repeat visit in 2005 - well, frankly, we found it boring! But, it seemed docile enough for Jacob to ride, and maybe he'd enjoy it. We had our first experience trying to figure out where to park the stroller, and quickly learned it's often near the ride exit, not necessarily the entrance. After figuring this out, we bumped into Goofy, Chip & Dale who were heading for a character meet & greet. This turned out to be Jacob's first character encounter. He was a little shy around them, so we weren't sure how he'd do when he met the rest of the characters. After goofing around with Goofy, we headed into the Great Movie Ride. While we were in the queuing area, they show a little movie and Jacob enjoyed running underneath the metal posts that people can queue through (though it wasn't that busy so there were not people there.) He was so crazy and I suppose that was a preview of things to come... fun, fun, fun! On the Great Movie Ride, he was okay at first, and then a little antsy. At one point, there were strobe lights, and they seemed to make him temporarily freak out a bit. He just seemed very excited and did this thing where he clinches his fist & face and shakes a bit... it was odd, but in a funny way.

After the Great Movie Ride, we basically killed time until the next Playhouse Disney Live show, which was basically the only thing Jacob would really be interested in. He's a Playhouse Disney kid - loves Ooh and Aah, the Wiggles, all the shows on Disney. At least they had TVs in the line showing Ooh and Aah. He enjoyed that. Then, we finally got in after a long wait. If you ever go, don't sit down in front on the left. You can't see anything from the front row - they are puppets for crying out loud, and they put them on a stage about 3-4 feet off the floor and some of the puppets are only a couple of feet tall! It's a cute show from what we could see and most of it, he was pretty interested, though he wanted to run all about, which of course is not allowed. You have to stay within these boundaries. We made it through almost the whole show, but toward the end we were ready to leave. Despite there being doors everywhere, you can only exit through the ones at the opposite end of the room. Annoying! We finally got out, and went to lunch at Primetime Cafe (after a brief detour to try to do the Muppets movie, but Jacob wasn't having it.) This was our third time eating at Primetime and by far, this was my least favorite. The food quality just stunk and the prices are outrageous. I mean $13 for a Fish Sandwich and I had a meatless Ratouille dish for $12. Jacob's kid's meal was $7 I think. Ridiculous. I mean, I know Disney food is expensive, but it could at least be edible! Grrr!!!

Well, after lunch, we left the Studios b/c Jacob was ready for nap and then we made a huge mistake.... (to be continued...)

Disney in December!

Another month without a post! And it's not like I don't have anything to talk about! But maybe that's the problem!

We were in Disney from Dec 8-15. Disney with 16 month old - reviews are mixed. Of course, we had already prepared ourselves this would be a different kind of trip. At the same time, I'm not sure we were prepared for our child to completely FREAK out without ANY notice whatsoever, since he has never done that before. Freakout #1 happened on the airplane on the way down. Miserable! We were in a hotel room the first two nights & Jacob was in the hotel crib in hallway area that was in our room. It worked okay, but Jeff & I felt like we couldn't do anything at night! On Dec 10, we checked into our rental house - which was great - 4 BR, 3 Baths, swimming pool, game room, baby equipment, everything. It's called Shrek's Hideout and it's no more than 7-10 minutes to the parks. We could not believe how close it was to everything! My mom arrived and brought my grandparents - we all stayed in the house that week and this allowed Jeff & I to go to Disney a few times without Jacob or to go out to dinner, etc. More to come later!

Is anyone still reading this blog? November!

Five weeks without a post. I'm so disappointed in myself. What can I say? Life with a 15 month old is busy! Let's reflect, since the last post, we had Halloween - Jacob was a monkey and a cute one! The next weekend (Nov 3-4), we went to Wilmington for the weekend to visit family since I had a Friday mediation down that way. Then, the following weekend, Nov 9-12, Jeff and I attended a Charity Ball on Friday night, drove to Charlotte on Saturday morning (3 hours), went to a Panthers game on Sunday, drove back home on Monday. My mom watched Jacob Friday to Monday for us. We had a great time. Nov 17-18, I can't even remember what we did, but Jeff's birthday was that Monday. We probably ran errands and checked out the new Super Walmart that opened down the street on Nov. 14. Then, it was a short week and Thanksgiving. Back to Wilmington. My grandma (dad's mom) and my dad's brother were here. We had Turkey with my dad and family. Then, Jacob swam with his Grandpa in Grandpa's pool! He loves swimming! Friday, we went to see Jeff's mom and did some shopping. Saturday, we went to a birthday party for Caitlin who was 2. Sunday, we went back to my dad's and drove back to Holly Springs. Throughout Thanksgiving weekend, Jacob was completely off his usual napping schedule, but he was such a good boy. On that Friday, he slept a total of 45 minutes in the car for his only nap all day. Not something you want to do all the time, but he really is a laid back, go with the flow child.

Whew! This weekend, we've been to: Kid2Kid, BJ's Wholesale, Target, Kohl's, Panera, Harris Teeter, Super Wal-mart and Food Lion. And, we managed to get the tree up and the interior decorated! Jacob was such a little trooper. He is the best child!! I hope he stays that way.

I'm in shock it is December already. Christmas is in 22 days. We are taking an entire week out of that and going to Disney. Considering "Christmas" will "start" for us on the 22nd with our trip to Wilmington, and a week in Florida, that really leaves us more like 12 days to prepare. Finish Christmas shopping (I finally did start this weekend!) Wrap gifts. Get Christmas cards in the mail. And that's not even including all the busy stuff at work going on! What were we thinking to take a vacation a week to two weeks before Christmas? I've got serious vacation anxiety!

I'll try to find the time to post lots of pictures from the adventures in November!

And the echo results are in....

Jacob's heart is functioning beautifully!

We got up early this morning, made our trek to Durham, had a yummy breakfast at Elmo's Diner. Then, made our way to the Children's Clinic at Duke. They did a weigh & measure - Jacob was 30.5 inches and just over 23 lbs (he'd just eaten A LOT!) His vitals were fine. We then made the walk over to the hospital and to the 7th floor Echo lab. First, we tried just sedating with chloral hydrate, but after 30 minutes it was obvious that wasn't going to work, so they gave him 10 mg of Benadryl and he was out 5 minutes later. The echo itself was very thorough and performed not by an echo technician, but by Dr. Trivedi, a cardiology fellow who followed Jacob from admission in August 2006, right up until his discharge 16 days later. He apparently is now on a rotation in the echo lab, so it was very nice to see a familiar face. After about 45 minutes of taking echo images, Dr. Trivedi checked with Dr. Barker, who came back in and took several more images. Then, they told us everything looked very good, and that Jacob's pulmonary arteries and coronary arteries look great, about as well as one could hope after this type procedure. Then, we were sent back to the clinic to see Dr. Delaney. After quite a bit of waiting, we finally saw Dr. Delaney, who was also very pleased with Jacob's progress and heart function. He told us we don't need to come back until Jacob is TWO! So, we made an appointment for August 12, 2008 - nearly 10 months from now! It is such a relief that his appointment went so well!

Cardiology Follow-Up on Tuesday, October 23

I can't believe it has been six whole months since we've been to Duke for an echo and to see Dr. Delaney. Time flies. I remember back in April, when Dr. Delaney said that Jacob was doing so well, they would not need to see him back for 6 months. He couldn't even detect much of a murmur listening to his chest. Previously, we'd been told we'd be going every 3 months, so that was really good news! Jacob was 8 months old at that point, and I tried to imagine what he would be like in 6 months. I really had no idea!

Here we are now, with our 14.5 month old, and he is so much fun. He can now walk, he talks, he throws & rolls a ball, he can go get Elmo or Pooh, or other toys. He loves light switches and lights. He loves to open & close drawers & doors. He loves to crawl (fast) down our hall! He loves bath time and splashing (and ducks!). He loves to eat, especially any kind of veggie with roasted red pepper hummus on it! He also loves any kind of fruit, grilled cheese, and grilled chicken. And, he loves Fruity Cheerios and Goldfish. He is growing up before our very eyes. He is such a cuddly boy and gives great hugs! He loves his Slugger and his Lambchop puppet and sleeps with both every night. He still takes two naps a day and goes to bed at 7 p.m. He does wake up around 5:30 a.m., but he talks to himself and plays while mommy & daddy sleep another 45 minutes (or try to!). He loves the Wiggles & especially Dorothy (which he calls "Dor-tee") He is truly our little blessing and we love him so. I can't imagine our life before him or without him!

Anyway, I am confident we will have a report of continuing good health on Tuesday! I hope you will be thinking of us and praying for us on that day!

Walking!

Where do I start? Since the last entry, of course, we have been busy!

We attended Elizabeth's 1st birthday party on September 8! Elizabeth is the daughter of Barry & Sandra, friends of ours who live about an hour away. Jacob had a good time and enjoyed having cake again!

The following weekend, September 15 - we went to Wilmington to visit my mom, my dad and Jeff's mom. They all enjoyed playing with Jacob.

It's hard to remember, but the last two weeks of September were busy ones for Jeff and I at work and I remember working quite a bit on the weekends. They were also filled with the usual trips to Target, the grocery store, etc. Boring stuff!

However, as indicated in the title of this post, we had a momentous occasion last week! On October 3, Jacob took his first solo steps! Jeff picked Jacob up from Chrissy's and took several steps to Jeff. Then, after they got home, we had a great time trying to get Jacob to take more steps! I'm going to try to post video here.... If this doesn't work, shoot me an email and I'll send you the link or video. Please post and tell me whether or not this works as I can't see it!

Pictures from August to Labor Day

Here is the link to the pictures from our recent trip:

http://www.jacobjones.shutterfly.com/

Back from Mini-Vacation to the Mountains!

We had a great Labor Day weekend in the mountains of N.C. We were fortunate enough to be offered a free place to stay at a beautiful condominium belonging to the parents of my dad's wife at Sugartop. We couldn't say no, so Jeff & I took off work on Thursday & Friday and we left on our adventure on Thursday morning. We stopped in North Wilkesboro for lunch and then on to Sugar Mountain, which is about 20-30 minutes from Boone. After we got checked in, we got settled and went out for supplies & provisions. By the time we got back, we just played with Jacob a little while longer, then fed him dinner. We put him to bed and despite being in a new place in a pack n play he had never slept in, he only cried for eight (long!) minutes before going to sleep!

On Friday morning, we waited until after his morning nap to get a start on the day. We headed over to the original Mast General Store in Valle Crucis. It's probably one of our favorite things to do, they have lots of neat stuff. We also went by the Annex store as well. As we were walking around, I showed Jacob a Lambchop puppet like this one. He took to it immediately and hugged it as we walked around the store, so of course, we had to buy it for him. [By the way, Lambchop has now moved right up their with Slugger. Jacob slept with his little arms wrapped around them both last night. It was adorable.] We went to lunch at Woodland's BBQ on Friday and it was pretty good! Jacob enjoyed his first BBQ and ate almost a whole hotdog too! We did some other shopping on Friday, but mainly tried to just get Jacob adjusted. We also went to the indoor pool at the condo on Friday and Jacob really enjoyed that too. We have an inflatable whale infant float that we bought before he was even born, and we finally got a chance to use it! Oh my, he loved it. Jeff took him out at one point, and he wanted to get back in!

On Saturday morning, we took a chance and left early before Jacob's morning nap, hoping he'd sleep in the car. He did okay, but not great with that. We were headed to Linville Falls. It was very foggy on the Blue Ridge Parkway. At one point, it was difficult to even see the yellow double lines on the road!! We considered turning back, but pushed on through the fog. We made it to Linville Falls and tried out a LLBean Child Carrier borrowed from some friends. It worked well and we hiked about 1.5 miles round-trip to see the falls & take pictures. Jacob seemed to enjoy riding during our hike. I even carried him on the way back and it wasn't too bad. After leaving Linville Falls, we headed further south on the Blue Ridge Parkway to Little Switzerland, an adorable little town in the mountains. We had a delicious lunch at the Switzerland Cafe, where our waitress asked us if Jacob just love to smile all the time. If we learned anything this trip, it's that Jacob likes to eat in restaurants! He loves looking all around at the people! After lunch, we went by the Orchard at Altapass and had some ice cream while listening to a band play mountain music. This is one of those attractions you don't see in the guidebooks, but we stumbled across it and we have enjoyed visiting a few times now. Unfortunately, it wasn't quite apple season yet, but the store and the music are lots of fun. Saturday was one long day, and we
actually went back out to the Mast General Store again. It was a lot more crowded than the day before, and we picked up a few more things.

On Sunday, we headed over to Beech Mountain, which is the highest incorporated town east of the Mississippi River. Wow, those were some STEEP and WINDING roads to get up there. I'm pretty sure the brakes weren't really fond of coming down either.... Anyway, they were having a Mile High Kite Festival. They even had free kites for kids, so we made Jacob a kite that read "Jacob's First Kite" and included the date. Then, Jeff & I tried our darnedest to fly it! We had a nice time and took some great pictures of Jacob sitting in the grass! I'm going to get all the pictures posted in a few days. When we left the Kite Festival, we went on a 2 hour expedition looking for lunch without any luck at all. Everything was SUPER busy because it was a holiday weekend and the weather was beautiful. We ended up giving up and hitting the McDonald's drive through on our way back to the Condo. For the record, Jacob wasn't too fond of chicken nuggets, and I couldn't be happier about that.

On Monday, we started packing up and headed for home around Noon. We stopped again in Wilkesboro for lunch (at the same Applebee's, no less!) and got home around 4:30 p.m. We had a great time on Jacob's first vacation, even if it was a short one!

Jacob's One Year Check-Up

Jacob had his one year check up with his new pediatrician, Dr. Ramsdell with Ramsdell Pediatrics yesterday. First off, it's a long story why we switched, but I couldn't be happier. Jeff really likes her too, and Jacob seemed to take to her as well. At one point, he reached his arms out for her to pick him up! I can't say he ever did that with his other doctors!

His stats were 20.14 lbs (19th percentile); 30.25 inches (63rd percentile) and I think his head was around 18 cm (57th percentile). We talked about his development and she feels he is just fine in that category as well. He knows 4-6 words pretty well, responds to his name, seeks approval, claps, drinks from a straw/sippy cup, feeds himself etc. He's not walking yet, but he will in his own time.

He couldn't get his shots yesterday though. He's come down with a cold, complete with snot & a nasty cough that is mostly present at night and keeping us all awake. She put him on Xopenex by nebulizer for the next week or so and gave us a new prescription for that. She ordered breathing treatments every 4 hours for the first day or so, then back to every 6 hours as needed. She said he was fine to go to "school," as long as he wasn't running a fever, so we sent him on to Chrissy's today with his nebulizer.

It's funny he is so skinny because I really don't think he could eat any more! Lately, he is loving fruit of all kinds. Last night at dinner he had sprite melon (similar to a honeydew/muskmelon/cantelope), raspberries, grapes, bananas, and applesauce! He also had some veggies & about 1/2 of a turkey sausage.

Birthday Recap & Roseola!

Wow, it's already Friday - where did the week go? At this time last week, we were getting ready for Jacob's party which was last Saturday. I took a half-day Thursday to do some birthday party shopping. My brother, John, & his fiancee, Katherine, flew in on Thursday night from Austin. My mom picked them up from the airport. They got in too late to see Jacob, but on Friday, they pretty much spent the day with him while Jeff and I shopped for food for the party. We got lots of stuff from BJ's (like Sam's, Costco), including burgers, hot dogs, appetizers, lots of food! We spent the rest of the day getting various things ready around the house and preparing as much of the food in advance as we could. I had numerous lists to keep up with all the details! After all, we were expecting around 35 adults & kids!

Friday night, after Jacob went to bed, we decorated the house with ducks galore, duck garland, streamers, etc. Saturday morning, he was up bright & early. I was chopping fruit for fruit salad at 6 a.m.! The party was scheduled for 11 a.m., and Katherine and I went to the Farmer's Market at 8 a.m. for some produce for the fruit salad & pasta salad. (Yes, I'm crazy to wait until the last minute!) I sent John & Jeff on the mission for the cake, ice, balloons & a propane tank! Somehow we got everything ready by around 10:15 a.m. and had a brief moment to shower & change. In the midst of all the activity, Jacob only took about a 40 minute nap and would not go back to sleep. He was pretty fussy.

Guests began arriving, and we served veggies/dips; chips/dips; tortilla chips/salsa; pinwheels, etc. Jeff started grilling hamburgers around 11:30 a.m. and they took longer to cook than we expected! We had 23 hamburgers and they were gone as soon as he could grill them. He then grilled about 24 hot dogs and most of those were gone quickly as well. We also had the aforementioned pasta salad, fruit salad, and baked beans. Everyone ate and the kids played in the living room. We got lots of great pictures. Jacob was really getting tired & yawning, so I knew we needed to get on with gifts & cake! I told Jeff's cousin-in-law, Holly, to tell everyone gifts in 5 minutes! Then, I told her to tell them to come on now because Jacob was seriously tired. Jeff held Jacob while I "helped" open presents. He got lots of great toys and some clothes too. He also received lots of books, which he loves! All the kids were very good while he opened his presents! Then, we quickly moved on to cake! I decided last minute not to get Jacob his own separate cake and just to give him a slice of his ducky cake. Even though he was tired, he didn't pass up on the cake. He dug right in and we gave him 10-15 minutes to enjoy it. Here he is right before I took him up for a bath:

After his bath, I put him in some comfortable clothes, and we came downstairs and he told everyone good night because he was off to nap. I put him down for a nap in his crib upstairs and we turned on the surveillance camera on our TV so everyone could watch him while he went to sleep! He was so exhausted, and I was so happy he didn't freak out during the party. Our guests began to leave, and we all finally relaxed. I was glad we had the party early in the day.

Later that evening, Jeff, John, Katherine & I went to dinner and to see the Simpsons movie. We had a great time. Sunday, we did little more than venture out to Trader Joe's, and had eastern Carolina style BBQ for dinner at my brother's request. Jacob was still very tired, and he was now running a fever.

Monday, Katherine & John flew home. Jacob still had a fever, my mom stayed with him. Tuesday, I stayed home with him. On Wednesday, he broke out in a classic Roseola rash. He's still more tired than usual, but the rash is starting to fade a little. Whew! What a week!

Here are the rest of the pictures from his birthday week: http://www.jacobjones.shutterfly.com/

Our Family.... Simpsonized!

I'll give the recap of Jacob's birthday shortly, but first - over the weekend Jeff and I went to see the Simpson's Movie with my brother, John, and his fiancee, Katherine. Sunday, while sitting around, we saw the Burger King commercial for "simponizing" yourself, so we simpsonized everyone, and John put us all in the same shot using MS Paint! Here's the picture:

From Left to Right: Katherine, Me, Jacob, Jeff, John and my mom!

Jacob's Story - Part 6 - A Happy Ending

Gradually, over the next few days, he started eating more and more; he also started shedding more of his tubes and wires. Here is one of the first pictures of his little face without any tubes or oxygen!



We continued doing chest PT on him. By Tuesday morning, miraculously, his congestion had cleared to the point he didn't even need a chest x-ray! On Tuesday, he was also switched to oral medications. He also started gaining weight. He had made it back to his birth weight on Tuesday evening.

We were discharged on Wednesday, August 16. Jeff and I finally were able to bring our baby boy home with us. It was a very happy day. This is Jacob and I on the day of discharge:




We have had outpatient visits at Duke in August, September, November, January and April. At Jacob's last appointment, on April 24, 2007, his echocardiogram looked great, and when the cardiologist listened to his chest, they could not even detect a heart murmur. For the first time in his short life, they told us we wouldn't need to come back to Duke for 6 months. In fact, he was 11 months old before he had a month without seeing a doctor!

Thank you for reading!

Today, August 1, 2007, Jacob is one. He is the happiest baby.

We are so thankful to our friends and family who supported us so much during Jacob’s first weeks and throughout the last year. The outpouring of love, kindness and prayers from near and far has been amazing. We are truly blessed and our prayers have been answered.

I hope Jacob's Story has helped to raise

awareness for Congenital Heart Defects.

My little man is one today....

August 1 has finally arrived. One year ago today, we were overjoyed to have a 6 lb. 9 oz., 19.75 inch baby boy, and unsure what the future would hold. We are blessed!

(The final chapter will post in a little while, but you already know the ending anyway!)