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!

We owe it to you! {CHD week}

(Me with Dr. Azakie after learning Joshua made it through his first OH surgery)

Today I want to highlight some of the amazing people who've touched our lives on our CHD journey.  The first person is Dr. Azakie, Joshua's cardio-thoracic surgeon. Dr. Azakie first operated on Joshua's tiny heart when he was only 3 days old. His amazing skill has granted Joshua a very normal life. He operated on Josh when he needed his diaphragm repaired due to paralysis. He operated on his heart again at 4 months old & once more to place a pacemaker at 5 months.   Dr. Azakie will preform Joshua's third open-heart (the Fontan - the final O.H. of the Norwood procedure) in the near future. We have quite the history with him & are tremendously blessed to have Josh in his care.

Next, I'd like to tell you about the nurses.  During our hospital stays Joshua always seemed to be quite popular among the nurses. They all loved him. Whether or not he was their patient, many of them would sneak in a quick visit or two during their shift. Looking back, I think they made every patient feel like they were their favorite. That group of nurses in the PCICU are amazing!

One in particular whom we all grew very close to is Janet. She was his nurse the absolute hardest night of my life. It was the night before Joshua had his first open-heart surgery, he was only two days old at this point and my heart was broken. I slept (tried to anyway) in his room that night & watched as his tiny body lay there surrounded by doctors who were trying desperately to get an IV in him.  They tried for hours on end, while his tiny body squirmed and fought them in pain. I sat there crying quietly.  Janet stood there with him, covering his eyes from the bright lights, stroking his forehead & humming a lullaby (all the while assisting the dr's - she did this for hours).  As long as I live I will never forget that night. I'll never forget the pain I felt, but also, I'll never forget the comfort she was to us both. 

Finally, let me tell you about Dr Rivera, Joshua's cardiologist.  From the very start Dr. Rivera has been amazing. He has an awesome outlook on Joshua & his condition. An outlook that, at times, allows us to forget that there's anything wrong with Josh's heart at all. He is ever encouraging & wouldn't think of limiting Joshua in anyway. I appreciate this so much, because I like to let Joshua try whatever he wants to (within reason:), and I can't imagine what life would be like if I constantly monitored him & restricted his play. Right now, Joshua is doing quite well & I very much appreciate that Dr. Rivera has given us the green-light on living life to the fullest.   We are aware that this may not always be the case, but we are loving it while it lasts.

We are so blessed to live in a place where we have such an amazing team of experts readily available.  Thank you - to all of the doctors, nurses and support staff who have made this journey enjoyable and worthwhile!

What a week! {CHD week}

(Glenn procedure, 4 months old - 2/12/2008 one day post-op)

This week is Congenital Heart Defect Awareness  week, and I intend to spread awareness. After all, that's what this blog is all about- sharing my broken-hearted baby's story.  Never in a million years did I expect this week would have any significance in my life....that is, until this day.

You never know what life has in store, but as we learned, CHD are much more common than you'd think. Here are a few quick facts about CHD's:

• CHD's are the number one birth defect and the number one cause of death from birth defects
• one out of a hundred babies are born each year with a CHD
• nearly twice as many children die from CHD's in the U.S. each year as die from all forms of childhood cancers combined

Why spread awareness???

More research funding, more heart donors, more early detection and intervention, education and support. Pretty simple.  

Stay tuned this week for more about CHD's...

All aboard!

Next stop, Lazyville - population: Joshua

here's a test...

What on earth could cause such distress???

...


here's a hint:

any guesses?

(cute shirt courtesy of my crafty cousin Amy)

potty mouth

We were at Target today, waiting near the bathroom for Abby to catch up to us. The walk way where we were standing was busy because it happened to be next to the only 3 open registers. A man crossed our path heading for the mens room & as he pushed open the door Josh yelled out "That guy's gotta poop."

ugh.

The guilt was too much....

Joshua found his big sister's beloved make up & after trying it on decided he belonged in time out. Poor little guy is riddled with guilt.

growing pains

I wanted to take a minute & write down a little about Joshua because he's done some pretty cool stuff lately. For instance, last week we decided that we'd give the church nursery a try. He's seemed ready for some time now, but I guess I wasn't ready. I love having the "cold & flu season" excuse (don't get me wrong, it's valid & I intend to use my discretion each week) but 3 hours of adult meetings is torture for an energetic 2 year old.  So I took him in this Sunday and watched him for about 5 minutes then told him that I was leaving, but would be back soon. I never came back. I watched him through the door & he did so well. At one point Jon said the kids walked down the hall in a line to the water fountain & he didn't even recognize Josh at first. He had his arms folded & his head bowed. What a good boy! Two hours later, I picked him up from class & he was so excited to tell me all about it. We are really proud of him, it couldn't have gone any smoother!

On Monday we had a similar experience. Joshua had his first dentist appointment & I was a little worried about how he'd do, and about the health of his mouth. At first he was nervous because women in scrubs scare him, but the dentist was a man, and he did exactly what was asked of him. The dentist said he was impressed with how well behaved he was, especially given his history. The best part of the visit, no cavities!!!

And now for the icing on the cake...I have been wanting to potty train Josh for a long time. We've talked about it like crazy & I've bribed him a time or two, but his response is always "I hate the potty." I can't get anywhere with him. That is until tonight. Today I was at Ikea & bought a plastic potty for $1.50. I thought, why not. It's ridiculously tiny & looks like a dog's food bowl, but why not? So tonight he yelled out "pooping" as he ran into the room, which he never does & we quickly sat him on the potty. He did it! And then he did it again an hour later! Awesome. I know this doesn't mean he's potty trained, but it's a start...I'll take a start!

You can see I have a lot to be proud of. I have to remind myself of this because he's such a little dickens lately! Oh how I love the boy, but 2 is turning out to be a tough age. I never understood why people call it "the terrible 2's" before, but now I guess I have an idea.  I like to think of it as growing pains...it just sounds nicer. He is so different from my girls at 2. It's not a bad thing, just something that takes some getting used to.  I've honestly never in my life met someone with his drive. If  he can use that drive in a positive way when he gets older, he'll be able to do whatever he wants in life.

But for now he'll use that drive to continuously climb up the counter top & riffle through the cabinet as quickly as possible until he is caught. Ahh, good times! But you've got to love him.

not so fast!

I thought it was pretty cute when I discovered Joshua had found Jon's old basketball shoes & then tried them on for size.
But it wasn't until about 10 minutes later when I heard the front door unlock that I realized what he was up to. He put on his shoes, then posed for a picture. And then he went & got his pacifier, unlocked the door & was headed "to work." (He never goes anywhere without his "bobo")

Nice try little guy!

New use

Josh discovered a new way to ride a skateboard this weekend...

Dear Santa,

You are scary.
Love,
Josh

sometimes dreams do come true!

Here's proof:

it's true what they say

boys will be boys!

Merry Christmas!

no words.

it's a tie...

How I love little boys, particularly mine.

We are so lucky, Jon & I. First, we were blessed with 2 amazing little girls. Girly girls, I might add! They certainly didn't learn their love of all things pink from me. Rather, it was in their blood. For 3 straight years, it was all about Barbies, princesses, nail polish & even make up. But then Josh came along and began to balance things out a bit. Where princess costumes once covered the floors lie wooden train tracks & mini skateboards. And a little more than a year and a half later, along came little Sam to even out the score. Don't get me wrong I could't love these two any more than I already do...

But it sure is fun going at life with an even score!

you mess with the bull...

he's ready for kindergarten

today as joshua was pushing along his one true love (garbage truck), he was singing the abc's! i didn't know that he could do that, so it was a neat surprise!

so tonight as i was baking a cake i decided to let him count the eggs all by himself...it went something like this:

"one, two, thwee, more, fibe!"

awesome!

zoom!

i have to get this on video, because he is suprisingly fast!

he's officially...

sweetheart with a sweet tooth...

we had a fun halloween weekend, and ate more than our share of candy & treats. on friday, abby brought home some left over cupcakes from her class party. there was one left on saturday morning that she was "saving for later." when joshua woke up he quickly spotted it, picked it up, licked the top (covering it in snots), needless to say his territory was marked. abby was upset. i told her not to feel bad, that it probably didn't taste too good because it was a day old. i couldn't get the whole sentence out before joshua started "mmmmmmmm"ing.  then he said "abba, this is soooo nummy!"

nothing like a healthy breakfast to start the day off right, right!?!
so the kid's got a sweet tooth. can't fault him for that, after all, i'm pretty sure i know where he gets it.

 

but eating cookie dough balls? this is where i draw the line! i had a few cookie sheets lined up, waiting for their turn in the oven, when callie yelled, "mom, josh is eating your cookies!"

this is the look on his face when he knows he's in big trouble. his punishment...no more cookie dough.

besties

the other night when i was putting joshua to sleep, as he drifted off he quietly said, "momma, i miss peter." it was incredibly sweet & genuine.

joshie's cousin pete recently moved about 2 hours away (an eternity in kid-time).

you see, peter is more than just a playmate, he's joshua's best buddy.  they've been causing trouble together since they were newborn babes.

they've taught each other many things - some naughty & some nice.

such as how to walk!

& how to wrap a grown adult around a teeny, tiny finger.

peter, we want you to know, that while you may be far away, we think of you often & can't wait to see you again soon!

life isn't the same without you little buddy!

more of the same

remember last week when i said that josh was "acting up" a bit? well, not much has changed this week. but i can't help but love the little guy! maybe a bucket full of candy on halloween will straighten him up!?! i'll keep you posted.

(today he picked off my colon/semi-colon button...you thought i learned my lesson? nope.)

i'm hopeful for a brighter tomorrow!

(to be fair, much of his craziness is in good fun!)

i couldn't agree more...

i'm feeling the same as josh in this picture. today he decided to pick the keys off my laptop key board. no more shift key, no more caps lock (g key, ctrl key and 'up arrow' hanging on by a thread). it feels so un-natural avoiding the shift key.
later he decided to tear the pages out of abby's library book. not cool josh.
i'm mad at you.


okay, maybe not mad, but if i were to ever get mad at you, i'd totally be mad at you right now. 

another good report!

Before Joshua's appointment he helped me pack his backpack with his favorite DVD, toys and treats. He was so proud of himself, I think he felt like he was going to school, but he knew where we were actually going & was a little nervous about the whole situation. But we did our best to spin it like it'd be neat to go watch his movie & see Dr. Rivera.
He had his echo on Wednesday & did awesome through it. He laid down in the dark room, tapping his foot to the music on his DVD & eating popcorn...livin' the high life!
Dr. Rivera came in at the end of the echo & told me how good his heart looked. He said that it was squeezing well & the leak is trivial. He said overall, he's very happy with how Joshua's heart looks. Thank heaven!
This morning we took Joshua in for his EKG, chest x-ray, blood work as well as consultation. Joshua did really well again. He's such a big boy & I'm really proud of him. The hardest part was the blood draw (as always), but even that went pretty well. He sat there, very brave & offered up his little arm to the tech. He starred at the guy with those big baby blues & I got a little teary eyed. I hate blood draws SO much. He cried, but held still & it only took one poke & no digging.  That was the best case scenario.
 We haven't gotten the results of the chest x-ray, but everything else was great!

Dr. Rivera said that he is probably just getting out of breath due to the 4lbs he put on, over the passed 4 months.  He told us Josh needs to adjust. But, he has no worries. He said, "You do not need to treat Joshua like he's special. He is just fine." What he meant by that is; let him live a normal life, don't baby him.  If only he knew the trouble Joshua gets into! The only "special" treatment he gets is that we go easy on him when he's being a dickens!

After all, he's a little boy, and while he may only have half a heart, he does what he pleases!

winded

Over the past couple of weeks I've noticed Josh has been getting short of breath at times when he normally wouldn't. It has gotten to the point that climbing the stairs leaves him huffing & puffing for a couple of minutes. It makes me so sad to see him work hard doing everyday activities. I know that it comes with the territory, but for so long he's shown no signs that he has any health issues. So I guess I've convinced myself that he's healthy, when in reality he's got a very serious heart defect.  I do my best not to dwell on "what if..." because I just want to enjoy every second while he's thriving. I don't want to waste that time worrying, & then one day look back at his life with regret that we didn't enjoy it, rather we spent all of our time worrying. I guess everyone copes with a sick child in their own way, but for me, denial works just fine.  I feel like it's healthy, I feel like it allows him to live a totally normal life. Maybe I'm wrong.
Anyway, I can't deny that I see him struggling a bit more each day and so we're headed in to see Dr. Rivera  tomorrow. I can't imagine him saying "He's doing great!" like we're so used to hearing. I don't see how that can be possible, based off his shortness of breath over the past few weeks. 
I am praying that he just needs a "tune up" in the form of a cath. I say that as if it's easy. It isn't, but it's better than the alternative.
Anyway, that's the latest, please pray that Joshua will remain as strong and healthy as possible. Also that his nerves will be calmed as he goes through another day of appointments. Thank you so much for checking in on Joshua. I'll update when I know what's going on (that's the plan anyway).