the lollipop kids...

Josh is a lucky little kid! On hot summer days, he cools off at the local pool.  But what's even better is the company who joined us on this hot day:

Originally, we had plans to meet our buddies at a park, but wouldn't you know, it was a scorcher out today...plan B (the pool) wasn't so bad though!!!

Joshua and Casey have more in common than just the scars on their chests; they also like to make the same face in pictures:

We love having a heart buddy that lives fairly close to us! Especially one who Joshua looks up to! Thanks for hanging out with us...see ya again soon!

I spy

 

We had a little visitor last week, a tiny little visitor.

this means WAR!

While the girls were occupied, the boys decided they were going to "balloon da girls up!" So like a good mom, I armed my boys with water ballons.

Told them how we needed to go about our sneak attack...

Finally, we went to war! Only we didn't expect the girls to be on their 'A' game.  They pretty much clobbered us!

After our war ended, we played a little water balloon baseball...

 

It was wet and wild!

We topped off the afternoon with some hotdogs...

 

All in a days work!

hide & don't seek

I've been hiding Abby's bag of play make up from Josh all day. No matter how high, or sneaky the hiding place, he seems to find it. I caught him just in the nick of time, 2 times, as he was twisting the lid off the nail polish. But, you can see who won this battle today. One day he'll look back at these pictures & wish I had won.

Josh the builder

Joshua spent Saturday morning working on the backyard with dad. They are nearly done & it's looking great! Jon is lucky to have a little helper!

Little helper #2 was sentenced to the house because he had just been bathed. Poor little helper #2 :(

 

this boy loves anyone....

...who is willing to hold his hand. As a bonus, this "anyone" happens to be his cuddle-bug, baby cousin, who also loves his pacifier. Soul mates.

Boys only!

 

Joshua was right when he decided he needed to bring his wiffle ball bat on the camp out! Jon said they played ball for quite a while. Joshua squatted down behind one of the bigger boys apparently playing outfield (if you ask me those older boys look legit)! So cute.  

Anyway, when they got home Joshua (who didn't want to come home at all) told me he "made a fire & played baseball & fisheded & da munster!"  Jon said on Friday night Josh was scared of a monster. I have never heard him mention monsters...so I imagine it was the influence of all those boys, minus their mothers!

All in all, it was a great trip & they are both ready to go camping again, as soon as the chance arises.

He really loves the outdoors!

the cutest picture

ever!

 

Father Son Camp Out...

 

Well it's that time of year again! Joshua couldn't have been more giddy. After I packed his clothes yesterday morning he searched high & low for the perfect toys to bring along. He'd gather a toy, take a good hard look at it & say "I think I need to bring dis!"...or "not dis one."  It was awfully cute! This picture is a pile of some of the necessities.

I can't wait to get my hands on the camera when they get home! I'd say there is about a 50/50 chance of finding a blank disk, but I have faith in Jon that he'll produce the goods (fingers crossed)!

a true cowboy...

 

The other afternoon we had a hail storm & the girls threw on their boots & ran outside with cups to collect the pebbles of hail. Joshua, not owning any boots, wanted to join in the fun. Rather than put on his slip-ons, he ran upstairs & found this silly pair of baby slippers (that happen to look like cowboy boots - key word - boots). No, they didn't fit & yes, his feet were cold & wet when he came in...but he was happy! Little boys, I tell ya!

i wuv you momma!

 

I heard that a lot last week. Joshua also sang "Happy Birfday to mom" countless times. He was a little confused by Mother's Day... but he sure meant well!

My boys couldn't be any more different than my girls, but I love them all the same. Joshua in his own sweet way made me feel like the best mom in the world...I assure you I am far from it, but he's proof that I must be doing something right. Oh how I wuv being his momma!

artisitc little...

 

athlete in training

 

Earlier in the week, some girls from our church were running in a track meet, so I took the kids to watch the fun. Man how it brought back memories of the glory days! It was pretty wild going to the meet because as soon as I walked into the stadium I heard the voice of my old coach, yelling to an athlete to get to their event asap! It sent a shiver down my spine, as if I were about to miss my event. It brought me right back to my teen years in a split second! 
I was really excited to watch the girls from church compete, but I was also excited to show my kids the sport that was my entire existence for several years.  It was so fun watching my kids cheer people on & get into the spirit of track.  Joshua was really funny cheering on one of the girls running the 2 mile...  every time she'd pass he'd yell something like "Let's go Shana, you're a good girl!" or "You should do it Shana!"
The kids wanted to know all about the hurdles, the jumping events & especially the pole vault (one of my favorite events in high school & college). They were fascinated by it, the way I was when I was a kid. I remember watching the pole vaulters at my older brother & sister's track meets as a girl & deciding I'd be a pole vaulter some day.
Joshua came to the same conclusion. He said to me he wants to do "the stick on the trampoline"  - that's 2 year old talk for pole vaulting.  I have no doubt that if he wants to be a pole vaulter, then he'll find a way to be a pole vaulter. He's just that kind of person.  I just hope he doesn't take an interest in some thing like boxing, cause that's not happening!

(The photos are obviously unrelated...just cute that he made his own tee ball set up)

playing hard

It's fun to watch Joshua grow into his role as "big brother"...a role that he loves! Lately he and Sam play together really well. Sam is very mobile & follows Joshua around all day...it's funny to watch Sam studying to be like Josh.

After a long day of playing, Joshua often doesn't even make it to bed before falling asleep.

 

And you know yu're tired when you can sleep in this position:

 

6 month - all clear

 

Our little guy was due for his 6 month cardiology appointment today and it went extremely well!  Josh is approaching his 3rd surgery (the Fontan) which will improve the oxygen levels in his blood, improving his overall health. Typically, a child with Joshua's heart will experience a slow drop in their oxygen levels (their sats), and their heart struggles more as the Fontan approaches. 

So that's where Johsua's at - awaiting the Fontan. Only for some reason Joshua's oxygen levels are higher than I've ever seen them before, his heart function is great, his blood pressure is normal, his previously leaky & repaired tricuspid valve isn't leaking at all, and he isn't even using his pacemaker! Our constant prayers are being answered.   

We feel incredibly blessed to have gotten such a good report today.  I assumed we'd be looking at a calendar deciding when we would head to UCSF for surgery.  At the very least I figured he was due for a heart cath. We got the "All clear, see ya in 6 months ... NO RESTRICTIONS!"

Dr. Rivera always checks to make sure I'm not restricting Joshua in any way. If you know me, you know I let him run wild, so I always laugh when Dr. Rivera gets to that part of the visit.

Also noteworthy, Joshua behaved amazingly well during the appointment. Not a tear shed, and he didn't want to leave!  Josh really loves Dr. Rivera & that sure helps!  I remember when he was younger it was so hard taking him to these appointments because he feared the doctor's office so much.  I am happy to report that he's out grown his fear & though his next surgery will probably have him fearful once again, it is certainly nice that he's at an age where he can be reasoned with.

I've decided I'm gonna stop with my "typical HLHS" thinking from now on, because Joshua has proven to me that I should dream bigger than "typical"!

chatter

 

We just got back from our spring break vacation & had an awesome time!  Josh made us laugh quite a bit on this trip with his antics. He's recently started referring to people (and things alike) as his "best friend." Some of his "best friends" on our trip included, a Toys-R-Us ad, a bottle of ranch dressing, a shovel, his little "bruder" Sam, and me & Jon too.  I used to feel special when he'd call me his best friend, until he started using the term so loosely...oh well.

He sure knows how to make us laugh! Like this morning when Callie took his toy, he gabbed my cell phone & this is the conversation he had with the "police"...

"Hi police. You can come take Callie to jail, cause she stole my toy. Danks police, bye!"

Good thing I haven't taught him to dial 911 yet.

naughty & nice

This week has been kind of busy for me for a few reasons. First, because I'm helping throw a baby shower on Saturday, which will be lots of fun! And second, I am a leader of the Young Women's group at church & we are taking the girls on an over night trip this weekend (I'm coming home late Friday night, can't stay over night with Sammy on my hip).  I've spent the week preparing for both of these events.  Today was the day I did some baking for the shower, I'm making a polka-dot cake. Simple enough...that is, until a certain 2 year old conveniently found his way to the counter top & poked each polka-dot with his grubby little finger! Ugh!!!! 

 

That was the naughty, now on to the nice....because after all, he is a nice kid. 

The other day we were hanging out with Josh's aunt Carrie & he asked her to take him to Old Navy. She laughed & asked him why he wanted to go to Old Navy.  He told her in his sweet little raspy voice "So I can buy you a ball!"
What a sweet gesture from a 2 year old boy!

(To be fair, I was able to salvage about 8 of my nearly 100 dots. He didn't ruin every one of them.)

new strategy...

 

Jon & I have been working hard to break Josh of his "repeat mode" where he'll say the same thing 100 times in a row. For instance when he wants me to get him his pacifier he'll say, "I want my bo bo, I want my bo bo, I want my bo bo....." until I'm ready to go coo coo!  Pretty typical for a 2 year old (at least that's what I tell myself).

Well it seems our efforts have paid off because recently rather than his typical begging, he's resorted to a new strategy.  Now he'll say "Mom, go get my bo bo. I trust you." or "Mom get me chicken nuggets, you're my best friend." I have to admit, it's hard to refuse such requests (even though in reality, he's just out smarted me to get what he wants ASAP)! 

He's only 2...should I be worried?

don't ask...

I know some of you are asking yourself how I had time to grab my camera at a moment like this.  The truth is he was hanging out up there as I was cooking dinner - although I didn't realize it until I heard him saying something about "walking on the roof."  That caught my attention & I found him scaling the banister.  Moments after taking this picture he said, "I fly up off roof now!" Not so fast Josh....that diaper doesn't give you super powers!

say what?!

Last night for family night we talked about showing each other love, kindness & being a happy family. I told the kids that this week I wanted each of them to go out of their way daily to do something nice for their siblings. I also told them that if they did or said something not nice, then they needed to pay the sibling they slighted 2 compliments (I got this idea from one of the girls I teach at church). Later in the evening Josh playfully kicked Abby. She said to him, "Joshie...you gotta say 2 nice things to me for that!"

He thought about it for a second, got a big smile on his face & said, "Okay...I like to toot. And I like to kick you!"

This is going to be an interesting week!

a big scare

 

While this is Joshie's blog all about his heart, Sammy has earned some air time on the heart blog.  You see Sammy turned 7 months this week, but it was overshadowed by some serious craziness.  On Monday morning Sam woke up feeling sick. I mean really sick...high fever, vomiting, sleepiness, only wanting to be held by me - even while sleeping, did I mention the horrible cough??? It was pretty bad. Monday was a holiday so our doctor's office was closed.  It was bad enough that I decided to take him into the urgent care clinic. At the clinic he was seen by a resident who didn't feel good about sending us home until the doctor took a second look at him.  Immediately the doctor said "This is obviously an RSV baby...check his sats." His sats were 96 - not alarming, but upon listening to his lungs she decided that he needed a chest x-ray.  This is where the story takes a turn for the worse.  After the chest x-ray results came in, both the doctor and the resident walked in with looks of pity.  They looked at me and said "Well, the good news is the lungs look clear...but it appears his heart is enlarged."
Say what???? They said that it may just be the position Sam was sitting when they took the x-ray.  I didn't panic, but asked if it was realistic to think it was just his position, or if the reality is that his heart is enlarged.  The response was "anything is possible."  The doctor said she called the pediatric radiologist to take a look at the x-ray. She told me that she'd call me later in the evening & let me know what he thought.
Then they swabbed Sam's nose to test for RSV because we were there to figure out what was currently the matter.  After the swab we were on our way home.
As soon as I called Jon I started crying because saying the words "Sam has an enlarged heart" made it seem terrifyingly real.  I called my family & Molly did her best to reassure me it'd be ok. Poor Molly always seems field the phone calls when I'm at my lowest point (she must love that). She convinced me to call Dr. Rivera. I called him, he had just gotten home from skiing, but was happy to look into it (he had access to the x-ray from home), and then call me back later.  In the mean time the doctor who saw Sam earlier called to check on us. She said that the radiologist took a look at the x-ray and felt that his heart was indeed enlarged. Moments later Dr. Rivera called me back & disagreed. He told me to bring Sam in first thing the next morning for an echo just to be sure. 
The next morning Dr. Rivera met us at his office, as soon as the doors opened - on his day off no less.   As he watched the echo he knew right away that the heart wasn't enlarged - phew!
He & the echo tech looked around a bit more at the heart. Then Dr. Rivera told me that Sam actually has a hole in his heart, but it's relatively small. Not a huge scare, but will require follow up echos.  It is an ASD- a hole between the upper two chambers.  Never in a million years did I expect to go through any of this with Sam when I brought him into urgent care on Monday. It was quite the roller coaster. Have I mentioned how much I hate roller coasters? 
Well you'd think that was enough for Sam to go through...no, no there's more. They confirmed he has RSV, which has been a horrible experience, fever, cough, miserable. AND he has a stomach virus, which has caused diarrhea & non-stop vomit (today is day 4). AND he has an ear infection, pain, sadness, more fever.

Okay, lets go over this again....just to be sure you got all of that:
1. RSV
2. Stomach virus
3. Ear infection
4. A hole in the heart (talk about adding insult to injury)

You could say this has been a long week. And it's been an awfully long weekend for Abby who hasn't been to school all week because she's also sick.  So if you happen to see us any time soon....run the other way!  Because I wouldn't wish this upon anyone.
But on the bright side, the weather is beautiful! I'm clinging to that right now, clinging.

Happy Heart Day!!! {CHD week}

 

As I look back on the stories I shared this week, I realize that I did a lot of sharing about the hospital aspect of having a CHD. I think that's because those are the times when it really feels like Joshua has a serious heart defect. The truth is, day to day our lives are very normal. I give Josh his daily medication, change his clothes and see his scar, yet I tend to forget about the disease he lives with. He leads a very full, happy life. I hear time and time again "I had no idea Joshua had anything wrong with him!" This is like music to my ears, because if people see no signs of his CHD, then he must be doing pretty well, right?
I often say, if I only knew back at the start that Joshua would live such a normal life, I would have saved myself tremendous stress, and worry...and probably a lot of tears.  But the stress,worry & tears are an inevitable part of the process.  The fact is, his journey is far from over, but I find joy in knowing that he's been grated a normal life, to this point.  We truly relish this time in our lives.  
As we say farewell to another Congenital Heart Defect awareness week, I urge you to donate blood, become an organ donor, spread the word about the prevalance of CHD's, donate to CHD related research, do whatever it is you can.  Thank you for reading my blog this week. It's my way of letting people know what it's like having a child with a CHD (for our family anyway), and therefore spreading the word.... and that's what it's all about! 

Happy Valentine's day!

Brothers & sisters {CHD week}

By far the best days of joshua's hospitalizations were these:

Joshua is a lucky boy...a boy who has 2 big sisters! These girls love him to pieces & he loves them right back.

When Joshua had his surgeries the girls were too young to really understand the extent of his illness. It was fine all the same because there was no need for them to worry. But regardless I think seeing the brother they love in this situation has taught them true compassion.  They are very sensitive little girls and I think it's due to the fact that they have experienced this journey right along side Joshua.  Their visits lifted his spirits like no one else could have. Now if only I can find a way to teach them to appreciate each other on a daily basis...

Support {CHD week}

I am often asked "How do you do it?" in regard to parenting a child with a CHD.  The truth is I wouldn't be able to without my vast support system.

From the time we learned about Joshua's condition countless people went out of their way to help us in any way they could. 

*photos: Right- my mom & Joshua
Below- my sister Carrie with little Callie and Josh

Our family cancelled vacations, postponed work, drove to and from S.F. time after time & provided 12 weeks of childcare for Abby & Callie.  They helped us with every aspect of this journey. They sat with us through the long hours of surgery, they took care of our home while we were away, they washed our laundry & then delivered it to us, drove to S.F. in a moments notice if I mentioned missing my girls, sat with Joshua so we could take the girls out - away from the hospital. The list goes on and on. They were amazing! They continue to be amazing! 

Before delivering Joshua my friend Lindsay, whose daughter has Shones, introduced me to the support group Hearts of Hope. The support group has been such a blessing. This group of heart moms has answered so many questions, calmed so many fears, and shared countless tears. They are an invaluable resource & I've loved being a member of this special community.  A community where I've made dear, lifelong friends.

Another source of support, I've met through this blog. I have made numerous online connections with mother's who know exactly what it's like to walk in my shoes. It's an amazing bond us "heart mom's" share.  While it's not a club anyone wants to join, we couldn't do it without eachother. It has been great being part of this community.

Speaking of community - we are blessed to live in a community that has lovingly stepped forward & provided us with service, monetary donations, dinners, etc. We are endlessly grateful to those who have taken an interest in our family over the years, for the positive thoughts, the fasting & the prayers.

Lastly, and most importantly we couldn't have done any of this with out our Heavenly Father, who has blessed us with selfless families, friends & community.  We  have been lifted and strengthened during our lowest moments and it is His love that has allowed us peace during these times.

So today I want to be sure and thank you all so much for everything you've  done for us, because without you, our lives wouldn't be the same. 

*photo- My sister Molly with Josh

2 years ago today... {CHD week}

Joshua had his Glenn, as well as his tricuspid valve repaired. How grateful we are today that we're on this side of that hurdle.  How grateful we are to the ultrasound tech who first noticed Joshua's sick heart. How grateful we are that he was born in a top-notch hospital that was fully prepared and anticipating his arrival.  How grateful we are that he's lived 2 very full, happy years of life!

Hypoplastic Left Heart Syndrome - HLHS {CHD week}

(Joshua - 4 months pre-Glenn)

While there are many congenital heart defects, Joshua unfortunately has one of the most severe, if not the most severe. He has hypoplastic left heart syndrome, or HLHS. I still remember when the doctor who diagnosed him uttered those words & thinking to myself, "huh? Was that English?" Then a moment later I realized that incredibly long name would become a regular in our vocabulary. I don't often think back to the day when we found out because it was really tough. The short version goes something like this; I got a phone call from genetics the morning after our 20 week ultrasound. The woman wanted us to come back in immediately for more testing because it "appeared that a portion of the baby's heart looked smaller than the other side."
HLHS is as simple as that (if that is simple). Joshua's left heart is severely underdeveloped. Therefore, his heart required surgery at birth in order to support life.  Other options included transplant, pallative care and termination. We chose to have Joshua undergo the Norwood procedure, as we felt that it offered the best shot at life. The Norwood procedure consists of 3 stage surgical intervention. The Norwood at birth, the Glenn at a few months old (Joshua was 4 months) and the Fontan during the toddler years (or there about). The result of the procedure allows the heart to function with a single ventricle; the right ventricle in Joshua's case. It's actually pretty fascinating the way his body functions right now. The blood flows passively to the lungs from his upper body & then goes to the heart where the right ventricle then pumps the oxygenated blood to the body. After he has his Fontan the blood flow from his lower body will also be directed to the lungs & then to the heart, allowing him to function with higher O2 levels than his current state, which is at around 80-85%. If you know Joshua, you may have noticed that he looks a little bit blue. After he has his Fontan his O2 levels should be in the high 90's, and hopefully his lips will be pinker!

We have mixed emotions about sending our little guy back into surgery. While we know that it's for the best, it's awfully hard to imagine going through recovery again, this time with a boy who can very clearly communicate with us. When he was a baby I told myself time & time again that he wouldn't remember all that he had been through. It'll be harder to convince myself of that this time.

When he had his previous 2 surgeries he went into each of them in poor health. He had tough recoveries that left us in the hospital for 6 weeks each time. When he has his Fontan, I assume he will be in good health. He's enjoyed good health for nearly 2 years & I have faith that he will remain strong heading into the Fontan, which should theoretically make for a faster recovery.

Until recent years, there has been no hope for children born with this disease. We are so very fortunate that Joshua was born at a time where success rates are improved and real hope exists. With a few survivors now in their 20's, there isn't enough data to conclusively say how long Joshua's heart will provide him life. His heart will eventually fail him and he will need a heart transplant. We have no idea when that will be. It could be next year, it could be when he's 20, or 30, we simply don't know.

Having a child with HLHS has taught us many lessons. Lessons that I may not have learned otherwise. I try to see the good in the situation and truthfully while I wish I could take away the pain & suffering, I wouldn't change Joshua. He is a remarkable boy, because of what he's been through. He has the ability to overcome obstacles that others couldn't, and he doesn't even notice them. If I possessed a fraction of his determination, I'm pretty sure I could walk on water.  Obviously, that miracle isn't happening any time soon, but it's okay, because he is our miracle.

 

Saying 'thanks' {CHD week}

Today we spent the afternoon delivering gift baskets, on behalf of our support group, Hearts of Hope.

(Joshua aka Mr. Aloof - refused to look at the camera & smile)

It is so much fun to be apart of this type of event - an event that took the effort and coordination of many people.  As a mother, whose son is alive in large part to doctors & nurses, you feel as if no 'thank you' is ever enough. But you do what you can & in this case I think the Kaiser staff lucked out (assuming they have a sweet tooth...and c'mon who doesn't have a sweet tooth?)!!! 

(If you ever want to be the center of attention, round up some kids & hand out gift baskets...it really causes a stir!)

(still aloof - even though he was super happy to see Dr. Rivera) 

In case I haven't made it clear to all those who play a part in caring for kids with CHD's....

Thank you for all you do!