Congenital Heart Defect Awareness Week

Lets be honest, Congenital Heart Defects are the pits. I remember the moment I learned I was part of the CHD world like it was yesterday. It was one of the hardest days of my life. I remember thinking, "Wow, this doctor is telling me it's not too late to terminate my baby, this must be very bad."
Unhappy with the lack of information the diagnostic doctor supplied, I immediately went online to scavenge for a shred of hope. And suddenly the thick fog of despair began to lift as I was able to connect with other heart moms and learn about their child's story.  Little did I know, the heart community would become a huge part of my life from that day on.
It wasn't long before I had researched Dr. Tony Azakie at UCSF and found that he/they had an amazing reputation dealing with children with CHD's, in particular Hypoplastic Left Heart Syndrome (HLHS).  By this point I was down right optimistic!
Life with a CHD has had it's ups and downs. But then, no one is exempt from life's ups and downs, CHD or not! This week, my biggest hope is by spreading the word about CHD's maybe there is a pregnant mom out there who needs know just how sweet life with a CHD can be.  Maybe she has been given no hope.  By spreading awareness, by sharing Josh's story maybe she will be given a little hope.

Have to share...

I have a friend who has always taken really great pictures and just recently began doing so on the side as a business. Lucky for us!! I was thrilled that she was willing to come and take some pictures of the kids in their element, but honestly didn't expect any one could capture all 4 of the kids so perfectly! She has a real gift. Anyway, I wanted to share a few of the pictures she took because I'm so happy with how they turned out!

She took so many more photos than I posted, you can check them out here. Thank you so much for capturing these moments, Liz. We'll treasure them always!

Moving right along...

Since I last posted Joshua has visit the cardiologist 3 times.  That sure sounds like a lot but, they want to keep a close eye on Josh and try to get his heart back to 'normal'.   Today we finally saw Dr. Rivera again & we were so very happy to be reunited with him!  The past month and a half we have gotten to know all of the cardiology team & they are all wonderful!  But we've got a long history with Dr. Rivera & he feels like family after all these years.  The first thing Josh said as we left today was, "I'm sure glad we saw Dr. Rivera today."
Now, for the report...It looks like Josh's body is responding well to the new doses of medications. At each visit they have tweaked his dosage and they feel like they've got him all dialed in now.  He will have some blood work done tomorrow and that should confirm whether or not they'll keep him where he's at currently.  We feel pretty good about that.
It's interesting to watch Joshua evolve as he has gotten older, and understands a lot more than he used to.   He's such a good little kid and though he often has to have blood work done & do tests that he'd rather not, or lay in an uncomfortable position for a long time as they preform his echo, he always goes with the flow and never gives anyone any trouble.  I'm so proud of how mature he is & his ability to handle himself.  I know often he's not thrilled to be in this situation, but instead of throwing a fit & making it a difficult situation he'll quietly ask me, "Mom, can we just leave?" or, "How much longer do I have to do this, mom?" I truly feel blessed that he has the patience to behave and do as he's asked during these appointments, as well as during hospitalizations.

 Josh and Dr. Shirai - We got to know him well in Dr. Rivera's absence. :)

Well, thanks to today's good report he gets to go 2 months before he has to be seen again! In the mean time, we'll do our best to keep him healthy and moving in the right direction.

Thanks for checking in on our Josh! :)

Back to reality

Well, sorry for the delay in posts, if you've followed this blog at all then you expect no less!
Josh was released Thursday afternoon. Thankfully it wasn't too long of a stay.
Josh seems to be doing ok.  It's hard to know for sure since he only had blood work done during his stay, no echo's, no chest x-rays, so really we don't know 100% that things are much better than when he entered the hospital in the first place.  But I'm not one to complain about being released so we went on our way when I said he seemed less puffy. I'm sure their reasoning was more scientific than that, but I wasn't privy to the decision making process. Dr. Rivera wasn't involved in his care very much as he wasn't the doctor on staff that week, but it'll be good to talk with him when we can and get his opinion.
Josh will go back and see a cardiologist (not Dr. Rivera...he's out of town for 3 weeks) on Thursday & we'll hopefully get a few questions answers at that point.
My main concern is about that liver of his. I am thinking long term. He's had serious issues with his liver twice now & I can't help but wonder how these issues will effect him as he gets older.
Anyway, I just wanted to give a quick update & let everyone know that Josh is home. Thanks so much to everyone who visited, brought us food, sent us messages, left loving comments, etc.  We really appreciate all of the love and support..it sure makes him feel special & it lifts our spirits too. :)

 Dr. Rivera had Josh draw him a picture on his helmet...he's an artist;)

This shirt was a huge hit! Thanks cousin Amy...you have no idea how many people asked (mostly men who wanted one themselves) "Where'd you find that shirt?!?"

Thanks to his TK class he had a wall of beautiful artwork! What nice friends:)

Update

Time for a quick update...
I took Josh in for a routine exam on Monday and we learned that he isn't doing so great. He has excess fluid which leads to some issues. His heart function is slightly depressed, his liver is enlarged and his lungs had a little fluid in them too. So Josh was admitted on the spot. He's been on IV Lasix for the past few days and he's starting to look better. His liver is still enlarged but its softer today, so that a good thing.
He's been in really good spirits and so overall it hasn't been bad being held up in the hospital. He did great getting his IV placed, didn't even cry, but he's not a fan of waking up each morning to blood draws. But really, we can't complain. We are being well taken care of and he should be back to his old self pretty soon!
Hoping tomorrow or Friday we'll be back to the comforts of our own home. :)

Thankful

Today, I am thankful for so many things. First, I'm thankful for my family. I have such wonderful children and they are definitely the biggest blessing in my life. I guess being their mother my love for them goes without saying, but I'm gonna say it....I love them beyond words.  I'm thankful for Jon and his dedication to our family.   He works tirelessly to support us and I'm so thankful to have a husband who is so smart, resourceful and a great father. I am thankful for my parents, for their endless help with the kids (often at a moments notice) and the relationship I have with them. I'm thankful that I have so many sisters who are talented in so many ways who I can turn to for anything.  I'm thankful we are all so close, they are my BFFs.  I'm thankful for my brothers and the laughter that ensues whenever they're around! I am thankful for my in-laws who never judge - they just love, not just me, but everyone they meet.  They are a good example.
I am thankful for my job at Kaia F.I.T. it's allowed me to meet some of the most amazing women I've ever had the privilege to know. I am thankful for a boss who is such a great mentor and has become a dear friend.
I am thankful that of all the people in the world who could have bought a house on my street, we lucked out & got a really, really cool family across the street.
I am thankful for the lessons that we learn through the trials that we face. I am thankful that Joshua's health has improved over the course of the year. I am thankful that he's doing well in school.
I am thankful for a Heavenly Father who hasn't forgotten us in our struggles, who has blessed us with what matters most in life....

Happy Thanksgiving!

heart update

Joshua had a visit with Dr. Rivera a couple weeks ago and I haven't gotten around to posting about it yet...but we got great news!

Dr. Rivera said that Joshua is in "MVP mode" & he was happy to say he will no longer be worried about Joshua! Everything looked great. His leak is trivial, his pump is good, his pacemaker isn't needed often, etc. All wonderful news!

Now if we can keep our little guy healthy through the cold and flu season, we'll be in good shape!

Happy 5th Birthday Joshua!

After hearing Josh's diagnosis of  Hypoplastic Left Heart Syndrome during pregnancy, the doctor suggested termination. We were devastated when that same doctor showed us a very out-dated case study that indicated Joshua's chances of survival at age 5 were slim to none. Thankfully we were referred to the experts at UCSF who gave us tremendous hope, as well as 5 amazing years with our boy...and counting!!

This is such a special day for our family. We are full of so many emotions, but most of all - gratitude. We are so blessed that Joshua has done well these past 5 years. There have been many bumps in the road, which seems to be par for the course. But we are so thankful for the people we have around us; family, friends, doctors, nurses & fellow heart families to lean on.  We thank you all for your love and support.   

Now.... enjoy viewing the past 5 years, packed into 6 minutes:

Happy birthday sweet boy! We are so proud that you are our son, and we love you more than you could ever know!

Homework

Joshua had his very first homework assignment last week. He was really excited...for about 5 minutes. Then the novelty wore off.

This was Abby's homework tonight:

Sweet Abby.

lucky boy...

Joshua is a lucky boy...he's got the two best big sisters ever! They may not always get along perfectly, but when it comes down to it, they sure do love each other more than anything!
Oh and he just got his first MedAlert bracelet...he seems to like it! I'm pretty sure he'll wear it seeing as he's worn his Darth Vader watch every day since Christmas. :)

First day of school...

We are already into our second week of school, but I wanted to post a few pictures of Joshua's first day.  The first day was great! He made a new buddy right away and they apparently had a lot to talk about. He referred to him as his "Star Wars buddy"...it wasn't until a few days later that we learned his real name. :)

Abby is in 3rd grade this year and Callie is a big 1st grader this year! It's nice knowing that they have each other on campus.

Josh really likes his new teacher, she's very sweet. The class is quite full, and is very boy heavy, so she's got her hands full, but she has a lot of experience and seems like a perfect teacher for Josh.

Three hours of school, five days a week is going to take a little getting used to, I think. Josh comes home tired every day, but so far things have gone pretty smoothly.  It's probably hardest for Sam to get used to since he's stuck with just me for 15 hours a week!!! I'm not as much fun as his siblings I guess, I can tell he's missing them.

Well that's all for now.  In a few weeks we'll celebrate his 5th birthday...how is he already 5 years old?
Where has the time gone? Ugh, it all goes by way too fast!

So long summer...

It's unimaginable that my little boy will wake up tomorrow morning and go to his first day of school! Where did the time go?
It feels like just yesterday I got that fateful phone call from Kaiser telling me I must urgently go back in and have a second ultrasound because there appeared to be a problem with our baby's heart.
And yet somehow time has passed. A lot of time.  Josh will be 5 years old next month.
When my girls started Kindergarten, I was a bit emotional. I felt like as I walked away from them on their first day of school - leaving them all alone in their classrooms, I was walking away from my baby and I knew that when I came to pick them up a few hours later, they would have joined the ranks of a "kid". Just makes me a little sad.
Today as I sat with Josh in his orientation, I started thinking about all he's been through in his life. I found myself fighting back tears. There sat my sweet eager little boy, listening intently to his new teacher, not a care in the world, so excited to learn, play and make new friends and I knew that for the first time, tomorrow,  I'd have to leave his side.
He went to preschool last year, however he only went 5 hours a week and his teacher was a dear family friend. This 5 days a week stuff is going to be hard for me. I have been with him through everything, always holding his hand, making sure he's safe and comfortable and now it's time to let go.
I know must sound dramatic, but it's going to be a hard "Goodbye, little buddy!" tomorrow morning.
But to be a little positive, I am very excited that he's going to learn and grow in school. There was never a friendlier, happier kid than Josh, so I know he's going to love making new friends. I think it's going to be a wonderful experience for him.
We are extremely fortunate in that he will be on campus with one of my longest "heart mom" friends. I know that she will keep an eye on my little guy & I am tremendously relieved knowing she's there with him.
We went to the campus earlier in the week to check out the classrooms and Josh was so darn excited he giggled the whole time because he was so excited to be there. As we walked away he said, "Mom, this was even funner than I expected!" I'm expecting tomorrow will be the same for him...I just hope I can be as brave as him!

Summer lovin'

Why have I been so bad about blogging lately? It must be summer! We've tried to stay busy with day trips and even a couple over nighters...just enough for the kids to feel like we are really living it up! We haven't done anything extravagant, just hiking & exploring the world around us, visiting different lakes & rivers etc. Trying to make good memories!

Besides keeping us all entertained, Jon has spent the past several months working hard to establish his non-profit organization, limb-loss.org. He is just getting the website rolling, after months of meeting with lawyers, accountants & jumping through hoops one must jump through to operate a non-profit. His goal (in a nutshell) is to provide education to new amputees & be a resource through the entire process. There is so much more to it...please check it out! He is so passionate about it & I love that it's finally beginning to really move forward! You can also check it out on Facebook.
Jon isn't one to open up frequently about his experience with Josh, but you can read here how it was the driving force behind the non-profit. I'm proud of him.:)
Check it out & let us know what you think!

Take me out to the ball game

 Last week our good friends gave us tickets to watch a baseball game...we were pretty excited to take the boys to their first real game! They LOVED it!! We're gonna have to do it again because it was the perfect night out with our little guys! :)

Thanks again Mellissa & Sal, we owe you!

back to normal...

Today we had a follow up visit with Dr. R. Joshua loves him & really looks forward to these appointments, which is great. There were some scheduling miscommunication which lead to 4.5 hours at the office, but we walked away with some great news!

Dr. R said that Joshua's heart function looks great. He said it looks as good as it did last year post-op! We are so incredibly thrilled to hear that he has improved, and that he's actually doing quite well. Just months ago we were given very devastating news, and here we are a few months down the road with a much healthier little guy. 

I can't tell you how thankful we are for the prayers that have been said on our behalf. We definitely had moments of deep sadness during that time, but felt the love and support of so many of you. It feels so good to be on this side of that hurdle. Seems as though Josh will continue to face many hurdles in his life, but for now, we plan to live it up this summer! Lots of swimming, biking, camping & beach days are in order!!!

A Wish in the making - Day 1

Well, I suppose it's time to share our adventures! Joshua's Wish trip was simply amazing! On Thursday morning at 5am we anxiously awaited the limo that would drive us to San Francisco for our flight to Orlando.

The limo was so much fun & we felt so fancy arriving in such style. The kids had never flown on an airplane so the flight was a highly anticipated part of our experience.

And the flight did not disappoint...the kids loved it! We flew on Virgin Airlines & they treated us so well...we even met the captain!

Before we knew it we had our rental car & we were headed to our Disney Resort...

We were tired at the end of the day, but we couldn't pass up the pool, so...

 We suited up and we swam the night away! Not a bad way to start out an amazing week!  Just look at this smile:

It says it all!