Thursday, June 28, 2012

Update from Eli's Cardiology Appointment

Let me start by saying Eli is now 20 months old!!!!  I can't believe he'll be 2 in a few months.  Why does time have to go soooo quickly?!?!  Happy 20 months, baby boy :)

We saw Dr. Parikh today.  He's Eli's main cardiologist in Indy.  Our original appointment was to be last Friday in Evansville with Dr. Steinberg, who's also one of his Indy cardiologists but travels to Evansville four times a year.  His schedule changed so we had the opportunity to go to Indy & see Dr. Parikh again. 

We had been worried because we'd seen several subtle changes in Eli over the past couple months.  He gets blue around his mouth, tip of his nose, fingers and feet more often.  It's something that used to happen a few times a week and we're now seeing it multiple times a day.  His breathing is fine and he doesn't seem bothered by it which is good, but the blueness just shows his body is stressed.  He gets tired more easily and is napping more through the day.  His appetite is still very good but his weight gain had tapered for a while.  This could be because of his increased physical activity (he is a busy-body toddler, you know!).  It could be that his heart function is decreasing and requires more calories to do its work.  It could also be that he's just a growing boy and takes after his brother who ate 6 pancakes and two helpings of scrambled eggs for lunch yesterday.  I also have to remember that most little ones aren't weighed every 2-4 weeks like he is so we can't stress everytime he's weighed.

Eli usually cries and fusses once we get in a doctor's office but he was REALLY good today.  They weighed him (22lbs 14oz), measured him, took his oxygen saturation (73%, low but they weren't alarmed), his blood pressure, and did an EKG.  The EKG usually sets him off as soon as he sees the machine but he didn't fuss at all.  I don't know what was different with him today but I'm grateful for it!  Dr. Parikh came in & we talked for a while then he examined Eli (no tears with that either).  Later he performed an echocardiogram on Eli and he started crying at the beginning, calmed down as the tech in the room started doing the Hot Dog Dance from Mickey Mouse Clubhouse (this was a man older than me and it was comical), started getting fussy again toward the end, and by the time Dr. Parikh was finishing he was screaming enough that it confirmed we had the right baby at the appointment.  He stopped as soon as it was over and slapped five with the tech.  Dr. Steinberg was in the office too and he & Dr. Parikh discussed the echo results and both of them came in to talk to me. 

The summation of today's appointment is this:  yes, we're seeing these changes in Eli but there's not much to do about it at this point (and that's okay).  All these changes are to be expected with his condition.  They don't normally do the Fontane Completion (FC) until the child is close to 30 pounds.  They just get better results by waiting until the child's body is bigger and adjusts to the changes the surgery causes.  They don't recommend placing a pacemaker now, they want to wait and do that with his FC so they don't have to put him under anesthetic & open up his chest more than necessary. 

We go back to Indy in August for Dr. Parikh to do a cardiac catheterization (views of the heart from inside the heart and also takes pressure readings from areas within the heart).  We're now thinking that his FC and pacemaker placement will likely be in the first 3-6 months of 2013.  If the catheterization shows any need to move up that timeline, we can.  Until then we just deal with the changes and update the doctors as necessary. 

I feel so much better after today's appointment.  My fears were that he needed surgery or a pacemaker very soon or that I would be treated like I was making a big deal out of nothing.  Let me say that throughout this entire time NO ONE has ever made us feel inadequate or dumb, but it's always a fear in the back of my mind when one of my main issues is that "he's not his normal self."  Today I felt like they he was thoroughly examined and each concern was taken very seriously (as they always are).  I feel completely validated.  I know it sounds strange to say we're not going to do anything despite him having these issues, but he's not ready for the next stage.  We're grateful for that. 

I feel I need to pass on something that's been said to us many times by several different doctors over the past 18 months.  Obviously Eli has a very serious heart condition, but so do a lot of other children.  Overall Eli's progress is leaps and bounds better than the average heart baby.  That's wonderful, but it also makes it that much harder for us when we start seeing some of these minor changes that are expected with his condition.  It's just something we need to remember, but also balance it with knowing what's a big deal and when to really worry.  We're so fortunate we have such amazing physicians to help us through this. 

So many of you have continued prayers for us and step it up even more whenever we ask.  Thank you doesn't seem adequate.  We know prayers work, Eli is proof of that.  We're so grateful for your support.

After the appointment we got to see the nurse practitioner in the office.  Sara has been such a source of information and comfort throughout this journey and it was so nice to see her again.  We'd already been there for a couple hours at that point but she was definitely worth spending five more minutes!  She was very pleased with Eli's growth and progress.  It was important to me that we got to say hello to her since we're never up there for our regular check ups. 

My mom and Zachary went with me & Eli today.  Mom & Z waited in the lobby and took several walks while Eli & I were in the appointment.  He was so good too.  I'm so proud of each of my boys after the long trip & hot temps today.  They both had great attitudes all day.  After the appointment we met my sister Ashley for supper.  Then we drove by a house she & Josh have looked at (love it!) and then to her apartment so the boys could burn off some energy and stretch their legs before we made the trip home.  It was a late night but a wonderful day.  Both boys are exhausted.  I am too but I have this happiness and peace inside I've not had in several weeks keeping me up tonight.  I think I'll sleep well pretty soon!

A few final notes before I end this lengthy update.  Bryan & I just celebrated our 13th wedding anniversary.  It's hard to believe we've been Mr & Mrs that long, but it's hard to remember life before we were Mr & Mrs!  We celebrated our anniversary the night before by the four of us going out for pizza.  Eli's gift to us was taking his first unprompted, unassisted steps!  He'd taken a few in his therapy sessions, but that was with lots of prodding, on Tuesday he just decided to do it on his own.  If I ever take time to write in their baby books I will list June 26th as the date of his first steps.  I knew it would eventually happen but was still unprepared for how I'd feel when it did.  My waterworks started immediately and I was very overwhelmed by the emotions of the moment. 

Again, thanks for reading and caring about our family.  Until next time, remember to cherish Every Little Beat.....

Tuesday, June 26, 2012

Vacation 2012, June 14: Children's Museum, my sister's and HOME!

We got up early and had another hotel breakfast delivered by Bryan.  It's so much easier to eat in the room rather than take two sleepy, grumpy boys down to eat with a bunch of strangers.  Eli decided to help feed Mommy.
We got the camera out too late but he had been spooning Fruit Loops to me.

 After we ate we re-packed the van (which was quite an adventure!) and headed to the Children's Museum.  We went there last summer and loved it so we knew we had to go again.  Zachary was so excited to see the dinosaurs again and Eli was picking up on Zachary's excitement. 

We spent a long time in the Dinosphere.  There's a lot of activities for the kids.  Unfortunately the dino dig wasn't available like it was last year.  They closed it "to improve the exhibit in the future."  Zachary quickly got over that disappointment and found something else to do.  Eli enjoyed it a lot too.  He growls when you ask him what sound a dinosaur makes.  I think he's developed a love of dinos too, but Zachary's is very intense. 

Walking into the Dinosphere.  Zachary was checking out the dino hanging from the ceiling.

Zachary exploring one of the caves with dinosaur fossils inside

A corythosaurus skeleton (I had to have Zachary look at this picture & tell me what kind it is!)

The boys wore dino vests & claws and sat on eggs in a nest.  Too busy to pose together but very cute to watch & hear their growls!

Zachary piecing together a Gorgosaurus puzzle

Eli playing at one of the dinosaur tables.

Chipping away for some dinosaur fossils

After the dinosaurs we went to see the train display.  Eli can say "All Aboard!" but of course he wouldn't say it in this exhibit. 

The museum had some special exhibits going on while we were there.  The first one we saw was about Egypt and underwater discoveries.  It was pretty cool.
Zachary looking extremely cute as he dons scuba gear and explores a wreck at sea.

Eli wasn't as happy to explore as Zachary was.

Zachary helping build a support wall in an exploratory cave.

Zachary trying to pose as an Egyptian warrior

Later we went to the Hot Wheels exhibit.  It was a little old for Eli but he loved it anyway.  He really likes cars & trucks so he had a good time.

Eli LOVED playing with the cars

Zachary climbed up to a platform and sent his car down the ramp.  Then he got to come down on a slide.

Eli has no idea he's not a "big kid" like the others.  He had a lot of fun in this area.

Hot Wheels motorcycle

Both the boys enjoyed sitting on the motorcycles

Crazy driver!!!!

Another thing they had was a Lego exhibit.  It was fun but it was one of the last things we did and the boys were starting to lose interest a little.  The other things were more fun for us but we're glad we saw this. 

A race car made out of Legos. 

Eli did not want to get out of this.

The very last place we visited was the Science Center.  There's all kinds of activities in there.  You can build a boat and watch it float down a course that changes as people build dams and obstacles, a construction site, a rock climbing wall, and other things I can't remember.  There's also a small house that is geared toward healthy living.  It's so cute.  The kitchen focuses on healthy food choices, the living room has ideas & activities to avoid being a couch potato, the bathroom has tips for brushing kids' teeth and the importance of handwashing, and in the bedroom they point out how important sleep is. 
Bryan & Eli moving the crane.

Zachary really had fun in the digging area.  He moved lots of mulch!

Figuring out the controls

Once we left the museum we drove to Greenwood and met my sister and Aaron for supper.  We went to Tony Sacco's Pizza.  It was so good!  Zachary liked watching them toss the crust in the air and spin it.  Then we got to see Ashley & Josh's apartment and had a nice visit, even if it was short.  We headed home and made it back to the house by 11pm.  Eli didn't sleep any on the way home even though he was obviously sleepy.  He felt it was more important to keep reminding us that he was tired of his car seat, tired of the van, and probably tired of us.  When we got in the house he looked around and pointed at everything.  He loved going into his room and showing me his stuff.  Then he crawled up the stairs.  That was something he didn't get to do on vacation and apparently he missed that activity.  The boys finally calmed down and fell asleep between 12:30 and 1 am. 

The day before we got home my mom had bought milk for us so we had some for the boys.  She also made a meatloaf with mashed potatoes and veggies so we had a meal ready without having to run to the store.  It was so nice to have those immediate needs taken care of!  Thanks, Mommy :)

Friday afternoon Bryan & I took Zachary to see a movie.  He had been a little upset that we left the hotels.  We tried telling him vacation was still going on but without a hotel room he wasn't buying it.  We wanted to do something special for him anyway and Madagascar 3 had come out the weekend before.  We saw it in 3D (my first 3D movie!).  It was so funny.  I definitely want to add that to our collection.  When the movie was over he played some arcade games in the lobby and we stopped for ice cream on the way home.  It was a fun afternoon.

Overall our vacation was everything we'd hoped for.  We had a great time but there's no place like home!

Monday, June 25, 2012

Vacation 2012, June 13: Colts Mini-Camp

Our view as we walked into the stadium.

 Today we drove to Lucas Oil Stadium and joined a couple thousand other people to watch the Colts practice.  Before practice started we went on the field (had to sign a waiver first though).  Zachary had a blast running around.  Bryan had thought ahead and packed a football, so we could toss it around.  It was pretty cool playing football on an NFL field with my boys.

Zachary throwing the football to Bryan.

Eli's first time touching the turf.  He wasn't sure what to think but ended up being okay with it.  The "87" jersey in the background is Bryan as he's chasing Zachary around the field.

Zachary lining up for the snap.

Zachary sacking Bryan.  The kid was having fun...both of them!

Zachary trying to score (the end zone is the other direction) as Bryan chases him.

A pose from his touchdown dance. 

Zachary thought the pylons were the coolest things ever.  He kept trying to carry them around.  I told him we couldn't take them home, but when we were leaving at the end of the day he saw a young guy (about 20 or so) carrying one to his car.  Zachary said, "Mommy, we could have taken it!"  Thanks for setting a great example 20-year-old-stranger.

Zachary posing with his beloved pylon.

My football fellas

Me & Eli.  He enjoyed his time on the field too.

Bryan & Zachary pose in the end zone.

 A few steps on the field.  He was having fun :)
Anyone else think I look about 8 feet tall here?

The four of us in the end zone.

While we played on the field Bryan took a moment to go into the seats and save a few for us.  After practice the players were going to come out and sign autographs so a front row seat was a necessity.  My sister's boyfriend Josh and his son Aaron joined us for some field play and watching practice.  They couldn't stay long because Josh had to get to work.  There was a long wait after the crowd cleared the field before players came out.  It was supposed to be about 90 minutes but I think it wound up being closer to two hours.  Josh helped entertain the kids during the wait. 

Aaron, Zachary, Josh & Eli.  Josh always has something fun on his phone for them.
It was a really hot day, and the roof was open.

Open roof with banners blowing in the breeze.

At first we were in the shade, but as the day got longer the sun was right over us.  I took Eli out for a few walks in the cooler corridors.  He did really well but was getting very fussy as he hadn't had a nap.  Eventually, I just took him out and walked around the stadium twice until he fell asleep.  He had his sweaty little head on my shoulder, and I couldn't see his face to tell if his eyes were closed or not.  A family of four was walking out, and I approached the mother using hand signals and mouthing the words "are his eyes open or closed?"  She immediately responded in mom-language that his eyes were closed & he was out.  I love those moments of instant camaraderie.

I saw a little bit of practice after getting Eli to sleep.  Here's some photos Bryan took of the action.

Andrew Luck #12,  red jersey.  First time in front of all the Colts faithful. 

Dwight Freeney #93  The guy kneeling in the front of this picture (wearing sweatpants!) is #91 Ricardo Matthews.  You can see his gloved hand resting on his leg.  He gave Zachary the other glove after practice and even signed it for him. 

Robert Mathis #98 doing some drills.  He signed Bryan's hat and I couldn't help but notice how big this guy is.  We were in the stands, much higher than him but he was still pretty intimidating.

The new coach, Chuck Pagano.

Defensive players getting ready to run some drills.

Adam Vinatieri #4 kicking a field goal.  The holder is the punter Pat McAfee.  He's one of Zachary's favorite players.
We got several autographs after practice and had a great time at the event.  The stadium is such an amazing place.  I've been to several Colts games there, but being there without a sell out crowd helped me appreciate the building more.  It will always be the house Peyton built and our family will always have a special appreciation for him and the work he's done in the Indianapolis area (especially because of the incredible work at Peyton Manning Children's Hospital at St. Vincent).  However, it's time to move on and being at this event is getting me ready for some football!  GO COLTS!!!!!!!!!!!!!!!

Wednesday, June 20, 2012

Vacation 2012, June12: A Day at the Zoo

Today we're going to the Cincinnati Zoo.  We started the day with Bryan getting breakfast from the lobby & bringing it to us.  I need to find a way to have him do this at home.  He brought orange juice in a coffee cup because it was bigger & had a lid and this is what happened:

Gotta start the day with a cuppa

After Eli drank our juice Bryan & Zachary packed up our van since we were leaving for Indy after our zoo trip.  Zachary thought it was really cool because they used one of the luggage carts instead of making seven trips.  Apparently he got to ride the empty cart back to the entrance which was a big hit with him.  While the big boys did the manly work, Eli & I did our final sweep through the room and took this last picture of Eli on his hotel bed.  Zachary had been picking most of Eli's outfits so since we were going to the zoo he chose a romper with a monkey.  Very appropriate.

Once at the zoo we saw lots of animal exhibits.  Our favorites are probably the gorilla area, the reptile house and the lemurs.  Their polar bear exhibit is really neat too, but only if the polar bear is swimming.  S/he wasn't swimming today.  In fact, the bear was lying so still on a log that I honestly didn't see it for a long time despite the contrasting white fur against the dark brown log.  Overall it was a neat day and we all enjoyed ourselves.  We used the wagon for the first time this trip but we are so glad we packed it.  That has come in really handy and we're so glad Santa brought that for us.  Here's a collection of the animals we saw:

Two of the wildest animals I've ever seen.  They're watching the monkeys chase each other on Monkey Island.

The first exhibit we saw was one of my favorites, the elephants.  I love this photo.

This alligator moved his head to look at the camera right before I snapped the picture.  I'm not usually a fan of reptiles but the Reptile House at Cincinnati was pretty neat.

Zachary loves geckos because of Geico.  Let's face it, that's why most of us have even heard of a gecko.

A monitor.  This guy creeped me out a little bit as he seemed to have an escape plan ready to implement as soon as we turned away.  Shifty eyes, don't trust 'em!

A camel.

An emu.

A rhino cooling off in its mud bath.

One of the gorillas.  This exhibit was one of our favorites.

Zachary comparing his hand to that of a gorilla.  Pretty impressive for a four year old.

"The lemurs!  They're not dancing like on Madagascar."  says Zachary

Eli watching the lions.  The exhibit was nice but the lions were sleeping.  One of them lifted his head and growled twice but that was it. 

A rhino trying to stay cool in the shade.

This sea lion was quite a ham.

Warm weather penguins.  I don't remember what the sign said they're called.  Okay, I confess, I probably didn't even look.  It was one of the last exhibits we saw and Momma was getting tired.
The four of us by a waterfall in the gorilla area.  Eli liked watching the waterfall better than looking at the lady who kindly took our photo.  It was hot today and we're starting to run out of clean clothes (I was already doing dishes on vacation, I wasn't doing laundry too!).

This is what happened five minutes after leaving the zoo.  You can still see the tag on the drum he chose in the gift shop.  It's a pretty cool drum, it has elephants carved in the wood. 

After we left the zoo we were headed to our hotel in Plainfield, which is southwest of Indy.  We've stayed in the area before but not this hotel.  Our trip there had an interesting/scary/eye-opening event.  Just outside of Cincinnati we were in three lanes of traffic (not too crowded but several cars around us).  We were traveling 65-70mph when a car two lanes over blew a tire and slid across two lanes in front of us and almost off the road.  Bryan hit the brakes and swerved left then back to the right as they came back across the three lanes and eventually stopped in the grassy median.  It's really a miracle that no cars hit and no one was injured.  Just more proof that our family has angels around us.  Both boys were asleep and stayed asleep.  A pretty scary moment but thank God no one was hurt.

By the time we got to Plainfield we were STARVING.  We also smelled like we spent the day at the zoo then in the van for two hours, but that doesn't stop us from entering a restaurant.  We went to Denny's and I got to order breakfast.  I love most restaurant breakfasts and was so excited to stop here.  It was Kids Eat Free with a paying adult day so we ordered kids meals for each of them (we usually just order for Z and Eli eats a mix of our three meals).  It's a good thing we did because we ate everything.  Then we went across the street to check in to our second hotel.

It was a nice enough hotel and room, but not nearly as nice as the hotel we had left that morning.  I was happy that this fridge had a freezer compartment but that's about it.  There was nothing wrong or dirty about it but we probably won't stay there again if we have other options.  We all got much needed baths and showers and settled in for the night.

Tomorrow we go to Lucas Oil Stadium for Colts mini-camp.  We can get on the field for an hour then watch practice from the stands.  There's an autograph session after that.  I think it'll be fun and will let you know in the next post!