Monday, November 3, 2008

A Music Video for CHD Awareness!

Since my last post, Jacob & I went to the World Heart Day picnic hosted by Triangle Mended Little Hearts back in late September! We had a busy October also. Jeff & I went to the Panthers v. Kansas City game and had third row tickets! We took Jacob to the State Fair, and of course, we just had Halloween and Jacob was Mickey Mouse. Here are pictures of the fun:
www.jacobjones.shutterfly.com .

For the last two months, Jacob has been in a new school, A Mother's Love Child Care Home. He just loves his new teacher, Michelle, as well as her husband, Scott and her son, Jason! He is doing really well there!

The real reason for my post though, is this cool country music video by Mark O'Shea, who is from Australia, but now in Nashville. Here it is: http://www.youtube.com/watch?v=Dtxlv6Hoerw

Wednesday, August 27, 2008

Peds Cardiology Visit to Duke Recap

We made our trek to Elmo's Diner for an early lunch. Appointment was at 12:15 p.m. We got to Duke at 12:00 and were immediately taken back for height, weight, BP check, etc. Then, we went and had the EKG and Echo. Jacob did great with the echo! I was so relieved. We were done with all that in fairly short order and sent back to the waiting room.

Dr. Rhodes got behind and I believe we waited at least one hour in the waiting room. We were finally called back about 1:45 p.m.? Dr. Rhodes came in, explained what they would be looking for. He also mentioned that he likes to do a routine cath around 8-10 years old when all studies have been fine. He would do it earlier if there were any issues. No activity restrictions are anticipated at any time he said as long as we have no complications in the future. The echo & EKG looked great and they have no concerns at this point. We were told to come back in one year for an echo / EKG. All in all a wonderful visit!!

Tuesday, August 26, 2008

Tomorrow....

... we go back to Duke for a pediatric cardiology appointment and echo for the first time in 10.5 months. This will be our first unsedated echo too!

We last went in October 2007 when Jacob was 14 months old. At that time, the echo showed the surgical result was about as good as you could hope for.

We have no reason to expect anything but great news tomorrow. We are seeing a new doctor, Dr. Rhodes. We previously saw Dr. Delaney, but he has since left Duke. Both Dr. Delaney & Dr. Rhodes were there on Jacob's admission at about 3 hours old and both performed his catheterization / balloon septostomy an hour or so later.

Anyway, please keep us in your thoughts & prayers tomorrow!

Thursday, August 7, 2008

Arterial Switch Operation Anniversary

Two years ago today, at this moment, Jeff & I took turns holding our 6 day old baby boy. It was a quiet Monday morning. Around 1 p.m. the anesthesiologist came to wheel Jacob away. We walked with him all the way to the elevator that would take Jacob to the surgical suite. The tears streamed down our faces as they took him away.

Then, we said a prayer. Jeff & I then took the little Duke tram over to another part of the hospital to sort of "get away" and try to eat some lunch. We finally returned to the PICU waiting area and were joined by friends & family.

It was a long 3.5 hours before we got our first update at 4:30 p.m. that the ASO had been completed. The ASO, of course, reverses the pulmonary artery & aorta back to their anatomical position. I've heard that the heart of a newborn baby is about the size of a strawberry. Amazing work, Dr. Jaggers, simply amazing.

About 15 minutes later, they let us know he had come off the bypass and that his heart was pumping & his lungs oxygenating his blood. A while later, they wheeled him by quickly. Nearly an hour after that, perhaps 7 p.m., we finally got to go back & see him. We didn't take any pictures, which is something I sort of regret. At the same time, I can still see the image in my eye. He had tubes and wires everywhere, and a little forehead temperature thing.

I almost consider August 7 to be a kind of "birthday" for Jacob. It's the day his heart was fixed by the talented Dr. Jaggers, so that he could go on to live a long, happy, normal life.

Friday, August 1, 2008

My Baby is 2 Today....

Where have the months gone? The days & weeks seem to go by so quickly and all of a sudden, our baby boy is 2.

I woke up at 5:30 this morning to the sound of our little man sort of screaming (he's usually pretty patient in the mornings, but not this one, I suppose.) Jeff turned to me and said, it's Jacob's birthday. I said, "yep, two years ago at this time, he was being life-flighted." And, so it begins that I try to remember the first 24 hours of his life. The first 3-4 hours are pretty clear, but the remaining hours of his first full day are a blur. We are certainly thankful and grateful to God that Jacob is such an energetic, full of life two year old. But on his birthday, it's hard to not remember those early hours and days.

Today Jacob also completes his first full week of childcare in a center. He was with Ms. Chrissy before, who kept him in her home, from the time he was about 2.5 months old until just a few weeks ago. We thought it sounded like a good idea to put him in a regular childcare center now that he is 2 for various reasons. It's been a rough transition so far. Rough on Jacob and rough on his mama too. I cried Monday, and managed not to cry Tues, Wed, or Thurs, but I think I've already cried about 4 times today. I picked him up on Tues & Thurs this week. I'd peek in on him before going into the room, and he'd just be sitting at the little tables they have, sort of slumped down, coloring or playing with a puzzle. Today, when I dropped him off, I had to take his bag to another room, so I went back to look in on him before I left. Five other kids were happily clapping, singing & stomping around to a CD. He stood in the middle, sort of looking at the floor. It was so depressing.

He is such a tough little guy. I think they think he is doing well because he's not crying all day, but he's just being tough. At the same time, he's not himself, because he is a happy, outgoing child who has never met a stranger. Yet, this week, one of his teachers told me she thought he is shy. He's never been described that way. I'm hoping that this is just a transitional phase. At the same time, I think he is going through a little bit of separation anxiety being away from us.

I can't wait to pick him up today and tomorrow we'll celebrate his birthday with family & friends.

Tuesday, May 6, 2008

Recapping March 2008!

What does one say when one hasn't blogged in two months? Oh dear!!

Let's review:

March 8 - our Holly Glen Easter Party featuring Stacy Clearman's Littleland Band - we took Jacob & our friends, Kim & Steven and their son Sterner joined us. Jacob loves the band. We bought him the CD and now he sings along in the car! Pictures of the fun Here.

March 20-24 - we headed to Wilmington for the weekend and Jacob's "Me-ma" (what he's calling my mom now) watched Jacob Friday & Saturday night so Jeff & I could go celebrate our five year anniversary. Our anniversary was March 22, that Saturday, and we stayed at Carolina Beach and had a relaxing day taking the Fort Fisher Ferry over to Southport and checking out a festival they had going on. It also seemed like we ate good food all day long! There are some pictures of Jacob hunting for Easter eggs around my mom's living room in the link above. And also pictures of Jacob hugging Caitlin, Heather's daughter, and playground pictures.

March 30 - Jacob had his first haircut at Snipits in Apex. He wasn't so sure about it at first, and then as he got more comfortable, he kept saying, "Wow," over and over, it was pretty cute. I've got a video of it too I'll try to post. Haircut pictures also in the link above!

In the meantime, Jacob's language skills keep improving. He's say so many words & phrases now! I'll recap April later!

Tuesday, March 4, 2008

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!

Sunday, March 2, 2008

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!

Wednesday, February 20, 2008

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!

Sunday, February 10, 2008

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!

Friday, February 1, 2008

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!

Monday, January 28, 2008

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...

Sunday, January 27, 2008

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...)

Thursday, January 3, 2008

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!