Another Anniversary & Congenital Heart Defect Awareness Week!

Today marks 6 years since Joshua underwent his second major open-heart surgery.  Six years!  In many ways it's hard to believe it's been so long because I remember the experience vividly.  I remember thinking that I'd already done this before, so this time I'd surely be stronger.  Wrong.
Once I was told surgery was over there was a huge sigh of relief, a weight lifted from my shoulders, all was well with the world!  But then when I saw his little body, carefully put back together, badly swollen, I knew my nerves were no match for the pain I saw on his sweet face.  I'll never forget walking into his room and internally having a mini panic attack, but not wanting to get kicked out of his room while he was made comfortable, I did my best to stay calm.

As a mom you have no choice but to swallow those very tender emotions, pull-it-together and carry on.  We spent 6 weeks in the hospital as he slowly recovered.  During those 6 weeks it was determined that he needed a pacemaker to ensure his heart rhythm stayed consistent, and he ended up having yet another surgery during that hospital stay.  All this and he wasn't even 6 months old yet.  Welcome to the world, little guy!

Looking back, I'll admit I had moments when I'd see other moms with their babies and feel so sad at the "normal" moments Josh and I were missing out on.  Simple moments like holding my newborn in my arms, snoozing together on the couch, bathing him, trying new baby clothes on him, going on a walk to the park, going to church and showing off my cute new baby.  There are so many "normal" moments that we missed, too many to list, too many to even realize.

Honestly, those thoughts have (and still do periodically) cross my mind, but the thoughts that more frequently occupy my mind are thoughts of gratitude.  I have so much appreciation for Josh and all that we've experienced.  I have so many sacred memories of the joys and the pain, I wouldn't trade them.  I also really appreciate how well he's done over the years.  There is not a child with Hypoplastic Left Heart Syndrome who doesn't have their own unique challenges, I feel like our challenges (though difficult) have been bearable and have taught us many lessons.  The perspective that we have thanks to these experiences is priceless.  Sure, these are lessons I wish I could have learned in an easier way, but I'm grateful for the perspective.

Today's anniversary just so happens to fall on Congenital Hear Defect Awareness Week.  In general I don't recount these events often because it's hard.  But this week I always like to do what I can to make people aware of the astronomical number of children born with heart defects & the need for more research and funding.  I'm partial to UCSF because they are miracle workers and have helped give Josh a very high quality of life.  We have been part of countless studies over the years with Josh and I know first hand the good that comes from these amazing people and the work they do.  So if are in a position to donate to a worthy cause, please do!  And help spread awareness anyway you can!

Happy New Year!

Well, as always I'm a little late to the party, but I just wanted to briefly post about the past few weeks. We had such a nice winter break, Jon was actually home for most of it, which was so nice! I don't think he's ever been able to take as many days off just for fun.  In the past when he's had more than 2 consecutive days off it's due to a hospitalization so this was a real treat!
In mid-December Josh finished up a great season of basketball. His final game was full court and boy did he ever play hard! He spent the entire game giving 100% as he always does & sprinted from one end to the next...it was exhausting to watch! I was a bit worried that full court was gonna be too much & he'd end up pooping out half way through the game.  He never did.  Afterward his coach had some very nice things to say about Josh...

                                       

That night he slept very well.  By the next day all that running had caught up to him.  He felt pretty darn crappy and his little body ached.   So we took it very easy for a while.

Over winter break we really had a lot of fun.  We were able to go back home and visit all of our family (well, most of them).  Besides all of the excitement of Christmas Eve and Christmas day another highlight for the boys was the annual holiday football game. Josh and Sam thought they'd get a little more playing time.  There's always next year. :)

This was our first year to spend Christmas away form our home.  It was just as special, if not more, being at Grandma and Grandpa's.

We also took a little trip to Bodega Bay.  Grandpa Steve has a trailer he keeps there and so we're pretty lucky that we get to go stay there from time to time.  We had so much fun!  One morning we decided to go on a little walk before breakfast...a little walk turned into 5 miles!  We didn't get back until after 11am! It was not what we intended but somehow it happened.  I really had no idea we were gone that long since we didn't bring our phones we couldn't keep track of the time.  I can't believe the boys made it that far with out being fed along the way.  They are like puppies and we have to bribe them with treats usually if we expect them to cooperatively hike that far! Good memories!

Here are a few other pictures from December that are worth posting....

Happy New Year everyone!

Good News X3

This has been a week of good news for Josh!

In his opinion the best part of his week was his basketball game. He played really well! There were no subs since only 5 kids showed up but playing the whole game was no big deal. He was just fine!  He had one play that was awesome...he stole the ball underneath the opponents hoop, dribbled down the court and made a basket on the fast break!  I was laughing and crying, everyone was cheering, I was so proud of him!!  He's a fun little guy to watch. :)

He's been loving basketball & I'm so happy he keeps up just fine.  He's really doing well.

Besides the basketball we went to see his cardiologist in the city & got a glowing report!  At the appointment the doctor was satisfied with what he saw on the echo.  We had a good long conversation.  He told me that generally school age kids with HLHS are on much less medication than Josh requires & that they are typically seen 1x a year.  Josh is seen every 3 months by cardiology.   I told him about Josh playing basketball and having no trouble keeping up with the other kids.  He doesn't ever need extra time to recover, he just keeps going.  His cardiologist told me he was very encouraged by this.  He said that Josh can have several tests done to check the function of his heart, but there's no better indicator of his heart's well being than him being able to run up and down a basketball court for 30 min.   He seemed surprised to hear how well Josh is able to play.

Last night I got a follow up e-mail from the doctor and he said he took a closer look at Joshua's echo and he was very pleased with what he saw.  He said that Josh's heart looks incredibly better than it did last April.  He said he could even see improvements from the echo he had in September.  Such great news!

If that weren't enough, today his teacher told me how well his reading is coming along.  She was really impressed with him and told me he's at a beginning first grade level for reading!! I give her all the credit because she really takes the time to teach her students according to their learning style.  She's the best! Couldn't have asked for a better teacher for Josh.  

I've been meaning to write down some things about Josh that I don't ever want to forget.  So here it goes...

Josh is such a funny kid in that he always wants to know the height of everything.  He's really into Mt. Everest and uses it as a measuring stick for most of his inquires.  For instance, "Mom, is the Sutro tower like 50, 000 feet tall? Is it like 50 times bigger than Mt. Everest?" or "How many feet tall is the Golden Gate bridge, like 80 thousand-million feet? Is it as tall as Mt. Everest?".   He's a very curious boy when it comes to the size of things.  His questions are constant, he wants to know about everything, especially things that are particularly tall.  He's been asking about Mt. Everest for probably 6 months now.  It makes us laugh to ourselves every time.  

Josh loves to play sports like crazy.  The minute Jon comes home he want to either throw the rugby ball, the football or hit baseballs.  Everyday.  It's his favorite thing in the world & he's such a coordinated and focused kid.  Anyone who knows him at all knows this about him. 

Josh is also a very neat boy.  You'll never find him with food on his face, hands, or clothes.  He's very tidy and likes thing just so.  He wears a watch on his right arm, a survival bracelet on his left & they never leave his arms unless he's bathing....and then he replaces them before drying off!  He has to have his shoes the exact same tightness.  If the left she is too loose he'll take both shoes off and start over.  He may have a touch of OCD. :)  

He is always my first kid ready for school each day, I never have to remind him to brush his teeth, get dressed, come for a hair-do or pack his backpack.  He just does it all and waits by the door, he's ready at least 10 minutes before the others.   The girls on the other hand...ugh!! 

I can't even begin to contrast Josh today, with Josh a year ago.  The most notable difference is his happiness.  He's finally himself again, the goofy happy-go-lucky boy we all love so much.  I'm sure a lot of it has do do with him feeling much better with good heart function.  It's true that going through the hard times help you appreciate the good times.  I'm not sure I would be nearly as grateful for Josh's circumstances today had we not passed through the past two difficult years.  I thank Heavenly Father everyday for these wonderful blessings.  

Fall Fun

Since my last post a lot has happened for Josh.  He started basketball, went on his first field trip & we celebrated Halloween.  Basketball has been a lot of fun for him.  He keeps up with the other kids just fine.  He's got pretty good endurance which I'm not sure I expected.  He's playing for the Boy's & Girl's club & his coaches are great!  They don't know he has a heart condition, I figure I'll let them know if he seems like he needs more breaks, but since he's doing just fine, I'm going to just let it be.  Watching him play has been so much fun! He's so focused and tries so hard.  It's adorable!!  He played in his first game last Friday & has several more in the coming weeks...I'll have to get some video of his skills.:)

Last month Josh went on his first field trip to a pumpkin farm in Half Moon Bay.  Sammy and I went along too and we had great fun!  It was fun watching Josh interact with his little buddies. He's made some great friends & he's really enjoying school this year.   His friends are such a blessing.  He's got the best little buddies and it's such a relief for me knowing they've got his back. :)

Halloween was so much fun at our new school! The kids got to dress up and do a costume parade.  It was a really memorable day for them.  Josh is real into zombies lately and so naturally he had to be a zombie.  It was the easiest costume I ever made & as soon as Sammy saw it,  he too had to be a zombie.  So my boys were pretty creepy and the girls were pretty cute. 

(These are his two best friends, the football player was a tad nervous to be around Josh I think, haha!)

That's about all that's been going on over here.  Josh seems to be doing well, but the other day I noticed his tummy looked a little bigger than normal.  Immediately I thought, "Great, it's that time of year again." - the past 2 years at the end of November Josh has been hospitalized do to fluid retention and an enlarged liver.  Then he spends the next several months trying to bounce back.  It's been pretty rough on him so I am hoping and praying that I'm just imagining things and that everything is fine.  I'm going to give it another day or two and see if his tummy goes down at all and if not I'll call the doc.  It's not that I don't personally want to spend time in the hospital, it's that I don't want another set back for Josh when he's finally really thriving.  I might just lose my mind if history repeats itself 3 years in a row.  But, I'm an optimist (or in denial perhaps) and won't stress over this, we'll just see how it plays out. 

school and sports...

Last week I was able to meet with the teachers at school for conferences and it seems like the kids are all doing really well at their new school.  They've made friends and they are good students, according to their teachers.
As I was talking with Josh's teacher I realized that he is the luckiest boy to have been placed in that class.  His teacher told me about several of the activities they do daily that really help the children with their fine motor skills.  Last year, I took Josh to an Occupational Therapist because he was falling behind with his poor fine motor skills.  Writing with a pencil was such a chore.  This year, I have seen vast improvement over the course of about a month!  The activities his teacher has the children doing are the exact activities OT did with him.   I told her she may as well have been a trained OT, but she just has so much experience she knows what these little guys need.  He is doing so well and it's all thanks to his amazing teacher.  The areas I really worried about last year don't worry me anymore.  I can see that if we keep doing our part at home, he's going to do just fine this year.
Another concern I've had is more on the social side of school.  I have really worried Josh would get bullied since he's significantly smaller than the others.  I volunteer in the library, I've been to the cafeteria for lunch and recess & we wait for 45 minutes on the playground each day for Abby to get out of school, so I've been able to do a lot of observing.  The first observation I've made is that Josh is always drawn to the athletic boys on the playground & they just so happen to be the biggest boys too.  Josh can really hold his own as he's a great little athlete and no one cares that he's small because he's good.  He really fits right in.
Last week I saw two older boys getting into it after school and Josh defended the kid who needed it.   I was proud of him on a number of levels.  When I asked him what was going on over there he said, "Mom, that boy needed help.", it was that simple.  I don't worry as much about him being bullied after watching him at school because he can handle himself pretty well as far as I've seen.
It also helps knowing that he's got good friends who have his back.  One of his buddies goes to church with us & it's been great for Josh to have him as a friend.  They will be playing basketball together through the Boys and Girls Club in the coming months which will be fun to watch! I just can't wait to see him in the uniform, ha!!
I'll most definitely post lots of pictures!  It'll be his first organized sport, something he's dreamed of since he was big enough to throw a ball.  He's spent countless hours watching Abby play soccer and Callie do gymnastics, finally it's his turn! :)

visiting our friends...

Since moving to San Francisco we've wanted to go visit the unit at UCSF where Josh spent a good deal of time.  So yesterday we baked a huge batch of cookies and dropped by the unit.  It was so great to see so many of the friendly faces we grew to love over the years...and not just the amazing nurses but also, child-life specialists, receptionists and social workers.  We love them all!

I think it's been a year and a half since Joshua's last procedure, but it feels like it was just yesterday, its all too familiar.  I am so glad that we were able to have a friendly visit, with no agenda other than saying hello!  I wasn't sure if Josh would have any memories of the hospital but he did. As we walked down the hall & passed a family eating area he said, "Hey mom, that where we ate pizza!".  He was right!

The first person we saw was our favorite nurse of all time, Janet! Just thinking of her makes my eyes well up with tears.  She was really excited to see Josh & told him about when he was a tiny baby.  Janet was our nurse quite often during the Norwood. I tell ya she's the only reason I didn't have a breakdown during that long hospitalization.  When I think of all she did for us I can't help but think of the night before Joshua's Norwood, when the doctors spent the better part of the night trying to get an IV in my newborn baby.  I think as a mother I would have rather been water-boarded the entirety of the night than have any baby lay there getting poked for hours on end.   But thankfully, Janet was there.  Not only did she preform her duties as a nurse, but she also lovingly sang to Josh and stroked his head during the whole process.  To her it was nothing, it's just who she is, but to me it meant the world. It still does.

Another person we were thrilled to see was Beatrix.  She was his child-life specialist and his friend.  There was a time after his most recent surgery that Josh checked-out emotionally.  He wouldn't talk to me, look at me or smile, at all.  It was really hard to see him this way and I just wanted to make everything better for him, but I couldn't.  During that time Beatrix was his friend.  She'd bring him games, toys, books, and new fun things all the time.  She was always an advocate for him & I was always so grateful for all the help she provided while we were there.  It was so nice to chat with her & let her see how well Josh is doing now.

Before we left we had one more stop, the step-down unit.  I was so excited to see Martina, one of his nurses who has treated Josh through all three surgeries and after two of this caths.  Martina has always been a good friend to me.  She is a great nurse, soft spoken, gentle and kind to her patients, but I always loved having her as Josh's nurse because I really enjoyed talking with her.  She asked me yesterday to remind her what Josh's condition was, when I told her she said, "I thought so, but he just looks so pink!".   We heard that from a few of the nurses, they were all happy to see how pink & healthy he looked.

They were also really happy to see the other kids too, they were shocked that "the baby" was so big, and they couldn't believe how big the girls had gotten either!  The girls used to cause quite a stir walking into the unit together, especially during the Norwood, Callie just turned 2 & Abby was 3.  They were just so little and cute.  They filled the air with laughter and happiness whenever they came around!  As we walked into the hospital yesterday Callie said, "Whoa, this reminds me of when I was a baby!" she's always had a great  memory.  Likely she's recalling when she visited him more recently, but so cute.
    
I'm so glad that we were able to visit with some of our dear friends, my heart is full.  Josh will start being seen at the hospital regularly for his pacemaker, so we'll most definitely drop in more & hopefully we'll get to see others who we didn't get to see this time around.  There are so many people who mean the world to us there & others who have since left. I just can't help but feel grateful to everyone at UC (past and present) who played a role in Joshua's care on any level.


It won't be long until the new Children's Hospital is finished being built in Mission Bay.  I can only imagine how it'll be to have this amazing staff in an amazing facility.  Great things are in store...great things!

I blinked and my baby turned 6!

I wish I had more time today to write a lengthy post but we have a lot to do today to celebrate Josh!  5 was a tough year for Josh, but looking back, he sure learned a lot during his 5th year.  Here are a few things that come to mind:

He mastered the monkey bars (huge deal in every boy's life!), he became an even better baseball player (ask anyone who has seen the kid play), he learned to ride his bike (pretty much the second the training wheels came off),  he perfected his karate skills using his brother as a training tool,  he got brave and jumped off the top of grandma & grandpa's pool stairs into the deep end,  he became skilled with a kendama, he learned to do killer handstands (and often out handstands even Callie)! 

Now of course there's the school stuff too, but when you're a 5 year old, mastering the above skills is far more important than learning your letters and sounds.  He may tire out quicker than most kids but he's incredibly athletic & that pesky heart may be able to slow him down a bit, BUT it has no power over his coordination & skill! 

Happy 6th Birthday Joshua...you are such a blessing and a miracle! We love you and are proud of you, buddy! 

Follow up

A few days ago I posted about Joshua's latest appointment.  The doctor mentioned they had seen a potential problem in the echo & wanted to compare it with his previous echo before coming to any conclusions with Joshua's condition.  As it turns out, the leak that they had found in the echo and were concerned with, was a leak that has been there all along.

Josh had a severe leak of the tricuspid valve as a baby.  Dr. Azakie was able to fix it quite well (which is great because valve repairs aren't always successful apparently).   After the repair there was still a "trivial leak" as Dr. Rivera referred to it.  But it's something he's kept his eye on over the years & hasn't worsened.  Our new doctor, Dr. Tyndell, wasn't aware of the leak.  So his communication to me somewhat scared me.  He went into the whole process of leaks and the serious problems they present.  Had I been thinking clearly I would have mentioned the nature of the leak I was aware of & it may have saved me a bit of worry to discuss it further right then and there.  But at the time of our visit Dr. Tyndell wasn't yet aware of the extent of the leak, he was simply relaying the tech's finding to me.
So it was a bit of a scare hearing the 'leak speech' and not yet knowing its severity, but everything is just fine.

I actually sat here the night of his appointment and thought about it...I realized that Josh wakes up at 7am, goes to school for 6 hours, comes home and plays hard until he falls asleep at about 9pm each night.  I had to be logical and not get worked up thinking, "what if?"....he certainly wouldn't be able to keep up if his health was declining again.

Dr. Tyndell also relayed to me that his function actually looks slightly improved from his last echo, so that's always great to hear.  I sure hope we can keep moving in this direction.  To be honest, I keep thinking back to how he was hospitalized the first week of December the previous two years.  It's silly to think it's going to happen 3 years in a row, but I sure hope we can forgo the set back this time around.

In school news...we are really excited, this week one of Josh's buddies from church was placed in his class at school!  I am so relieved with the way this year is shaping up for Josh.  His teacher is amazing, he loves her, he loves school (which I NEVER thought I'd say), he has several good friends at school & he comes home with a big smile on his face everyday!  I know lots of kids have a smile on their face after school, but compare this to last year, it's a miracle.
Good things in store for my boy!

Lately...

I'm a little embarrassed it's taken me so long to update Joshua's blog.  So much has changed since my last post, I don't know where to start.  I guess I'll start at the beginning....

Jon began working for USCF in May.  He spent his weeks in SF, and came home on the weekends. Meanwhile, I stayed at home in Roseville with the kids as they finished school and we sold our house.   Our house sold pretty quickly, but the process felt very long since I had to keep the house spotless with 4 kids on summer break - while my husband was semi-permanently out of town.  In hind sight the process was seamless and the timing was perfect, but living through it was challenging. Jon's mom was our realtor & she was amazing.  I think I would have lost my mind without her, she was great!

After our house sold we found a perfect little home just south of the city.  We moved at the end of July (thanks to our families & their tremendous help with the process) and had plenty of time to get acclimated with our new surroundings before school began.

Once we got settled in, the only thing on my mind was ensuring the kids had a memorable summer. Poor kids spent the first half of their summer at the mercy of potential home buyers walking through our house with little - if any - notice & then had to pack up the only home they ever really knew and say goodbye to family and friends.  It was pretty hard on them so salvaging what was left of our summer break was really important to me!

Now onto the fun part...
We have just loved our new home town. We are minutes from the city about a mile and a half from the beach and steps away from hiking trails. We feel like we've hit the jackpot living in this small community, so close to so much fun & less than 15 minutes from Jon's hospital.  With so much to do, we've really kept busy going to beaches, exploring hiking trails, camping, fishing, discovering new parks and making new friends.

Except for the fact that we miss our family and friends back home we couldn't be happier at this moment in our lives.  Coincidentally, this leads me to my next topic...Joshua's heart.  I think I've spent the past month just completely letting go of the issues that have caused us stress over the past year and a half.  It's been such a blessing the way our path has lead us to where we are right now & has taught me to always remain faithful even during the most challenging moments.

During the past month I've been able to more fully enjoy my role as a mother and grow closer to my kids and Jon.  During this time I think I've almost forgotten about Josh's condition (well as close to forgetting as you can - you never really forget).  That is until today, when he had his first visit with his cardiologist in SF.  We've actually known his new doctor,  Dr. Tyndell, since Josh was born.  He was Josh's cardiologist while he was hospitalized at UCSF (for all 3 surgeries) and Dr. Rivera was his 'home' cardiologist.  So we felt very comfortable knowing he'd be transferring to a doctor we already have a relationship with & we really like.

Since this was technically Josh's first visit as Dr. Tyndell's full-time patient we spoke at great length about Josh and his recent history.  Several topics came up and after discussing it all I felt somewhat overwhelmed by it all.  I think I generally speak about one issue at a time as they arise, but discussing his whole case felt daunting.  There was one new issue that I wasn't aware of, but the doctor will be in touch with me since he didn't have all of the information in front of him at the time.  We don't know the full extent of the problem just yet. It could be quite serious, but then it may not be too concerning just yet.  Sorry to speak so cryptically, we are praying it's going to work out okay.  In general, things look pretty much the same as they have and so we are grateful for that.

Josh started Kindergarten about two weeks ago and I thought I would wait a few days before I let the teacher know about his heart. Now trust me, if he were so critical that she needed to know day 1...she would have known.  I wanted to let her get to know Josh without any preconceived notions and see how things went.  Her report to me at the end of week 1 was that he's a great little boy and she really enjoys having him in class & he's a good listener.  She seemed surprised I was concerned with Josh because he was pretty well adjusted by this point.  I didn't go into great detail, but I gave the "Josh has half a heart..." speech in a nutshell.  I am kind of on the fence with how much I tell people and when the appropriate time is to pass along that information.  Not that we are ashamed in anyway, nor do we want to hide it, but I don't want him being defined by his heart defect, or being labeled as limited in any way because according to his doctors, he doesn't have any limitations placed on him.  As far as his kindergarten teacher was concerned he was no different than any other kid in the class.  I am really pleased that despite all he's been through & despite the fact that  his physiology isn't ideal, he's able to do normal little boy things and no one knows any different.  I don't know how long he'll be able to keep up, but I'm very happy that he's able to at this point.

I was concerned with Josh starting kindergarten since TK was pretty tough for him last year.  He did well enough, but he really didn't enjoy it.  On many occasions it took strong persuasion on my part to get him out the door.  Thankfully, he absolutely loves Kindergarten. His teacher is phenomenal.  She's been teaching for 40 years, she is a fun, engaging and an experienced teacher who is a perfect fit for Joshua.  After several conversations with her I just know her teaching style and personality will make for an amazing year for Josh.

As a mom, I have to say it makes life much easier sending him to school happy with a smile on his face rather than tugging at  his little hand and easing him through the classroom door and hoping it'll be a decent day.  We really feel blessed with the way things are going for Josh.

Finally,  apologies for the delay in posts to those of you who follow this blog and have been wondering how Josh is doing. We appreciate your love and concern so much & hope you are well!

6 years

Six years ago yesterday Jon and I anxiously waited to hear the ultrasound technician tell us that we were pregnant with our first boy! Abby was 3 and Callie was a 1 year old at the time & we so badly wanted a boy.  I was so incredibly happy that I didn't even notice the tech looking extra closely at our baby's heart.   As we left the appointment I remember bouncing to the car in excitement & I couldn't wait to share the news to my family.  It was a day I'll never forget, one of the most exciting days of my life. On the car ride home Jon mentioned that he noticed the tech spent an awful long time checking out the baby's heart. I remember brushing it off & telling him it was normal.  Then we talked about how fun it would be to play baseball, football & soccer with him. We made big plans for our boy, we couldn't help ourselves!   Our lives felt perfect.
Six years ago today, at 9am I got a phone call that would forever change our lives. The lady on the other end was calling from Kaiser. She asked that Jon and I come in right away because they noticed that something wasn't right with our baby's heart. In that moment my heart broke. She said that it appeared as though part of his heart didn't fully form and they needed to confirm the diagnosis.
I called Jon in tears and told him we needed to go to Kaiser, I dropped the girls off to my mom & prayed the whole drive downtown that everything would be okay. I pulled myself together & we went in to see the doctor. After he took a closer look he confirmed Joshua's condition with us; Hypoplastic Left Heart Syndrome.  Essentially, only the right side of Joshua's heart developed and his ascending aorta was also severely under developed.  The first thing the doctor told us was that it wasn't too late to terminate this baby. It was awful. We told him that wasn't a consideration and we were going to keep our boy, who we were already in love with. We asked him what our options were and he told us briefly what could be done. He said that treatment would be done at UCSF.  He told us, "As far as heart defects go, this is the one you find at the very back of the book, it's the one you don't want, the most severe of them all. "  He then gave us a study we would later learn was outdated. It gave us no hope.  We sat in the room by ourselves and just cried.  It too was a day I will never forget.
All we wanted to do was go home and hold our little girls. In moments like these your priorities in life become so crystal clear.  We didn't have a clue what the future would hold, but we knew we wanted to do everything in our power to buy time with our son.  I remember praying and pleading with Heavenly Father to just give us time.  I didn't care how hard the journey would be, I simply wanted time to meet him, to hold him, to love him.
We've been so blessed to have Josh in our lives for the past 5.5 years. It's been a very difficult journey, but we've grown and learned so much through these experiences.  We've learned a lot about parenting and have a unique perspective thanks to Joshua.  We've learned that there are some incredible people in this world, who are selfless and kind. We've build many friendships with families who've experienced similar circumstances. We had the pleasure of being treated by some of the brightest minds in the field at UCSF & view them as an extension of our family.  While we don't understand why Josh was born with HLHS, we do understand that Heavenly Father loves us and one day Josh will be made whole.  Finally, we've learned that we still have quite a bit of learning to do.  When we were young we thought we knew everything, turns out, we were wrong. :)
Seems like there are so many anniversaries when you have a child with a heart defect; surgeries, big milestones, small milestones, etc.  I guess it's all about celebrating how far you've come.
Six years ago today I had my heart broken, but today, life is quite good & I wouldn't change a thing.

To follow up on the plans we made for our baby boy - he does play baseball, football & soccer...he does everything, and he's darn good it too!! 

April Update

Jon and I have been feeling like something is a little 'off' with Josh the past several days.   I called the cardiologist and they decided we should bring him in to make sure things look okay. He had an appointment yesterday and it went surprisingly well. His echo looked pretty good, which was quite a relief.

It was just about a year ago, after he had a procedure to close his fenestration, that a doctor told us his heart was in such poor shape that we should "...just enjoy the time you have with him."  That was pretty rough (to put it lightly), but thankfully this past year he has slowly improved. Of course he's had his set backs, as he always will, but we are incredibly grateful that he's doing alright. 

The echo looked good, he's not retaining fluid in his lungs, on his heart, or his legs, face, etc.  His sats were in the mid 90's which is good for Josh.  He was seen last month so he hasn't made much progress on the growth chart, but he's IS on the chart now for weight, 5th percentile! Still not on the chart for his height.
After his echo, the next stop for Josh was the pacemaker clinic to get an idea how often his pacer is firing.  Apparently, he is using his pacemaker a little more that 50% of the time, but during his appointments it never seems to fire, so Dr. Rivera decided to put him on a Holter monitor for 24 hours to get an idea when it's being triggered. They think his heart rate may drop low while he sleeps causing it to fire through the night.  We'll know the results within the next week or so. 

Overall, Dr. Rivera was pretty pleased with what he saw, but decided that some blood work should be done because it's very possible that his electrolyte levels are off due to his diuretics.  So the final stop of the day was to the lab to have some blood drawn & then we were off!

Still waiting to hear back about the blood work, and hoping that maybe we'll find out why Josh hasn't been feeling too great.  But, again, we are relieved to know that there are no major issues, just possibly some small tweaking of meds.

In other news, Josh was asked by the Make-A-Wish foundation to join a handful of other wish kids at the River Cats game April 20th to sing, "Take Me Out to the Ball Game", during the seventh inning stretch.  He couldn't be more excited and has been practicing every day for the big event.  We can't wait to watch!

One last thing...Make-A-Wish is holding their annual "Walk for Wishes" event May 18th at Raley Field. We are excited to participate this year & can tell you it's a very worthy cause!! If you are looking for something fun to do with your family, join us! Click here for more information. :)

these boys

I normally have some sort of health update to share, but not today.  I mostly just wanted to share this gem of a picture my sister took of the boys this past weekend.
Using my best judgement (since I don't have the Dr's word for it) Josh is doing pretty well. He runs and plays all the live long day, he gets into trouble with his little brother, never stops eating & sufficiently makes a mess of the house. Yes, I'd say he does every thing a 5 year old boy should do.
Anyhow,  Josh will go back in and do a full day at the Cardio's office in about 3 weeks and we'll get a good idea how everything looks on the inside (aside from my outward assessment).  Hoping we'll get a good enough report that we won't have to go back so frequently for follow up.  But honestly, visiting Dr. Rivera regularly isn't so bad...I just think getting a 6 month clearance would feel like a huge victory. So we'll be praying for a victory.

Happy spring, everyone!

Another update...

Josh went in for a quick once-over yesterday. Basically, just an EKG & a listen from the Doc. Dr. Rivera feels like Josh is doing just fine.  He noticed that Josh was a little blue but his sats were nice and high so he wasn't concerned.
Upon noticing that Joshua's growth curve is petering out a bit Dr. Rivera discussed possibly putting Josh on growth hormones. Josh is quite small for his age.  Now of course being on the small end is good for a well worn heart, however, Josh is no longer following his curve the way he previously had. Dr. Rivera spoke with an Endocrinologist and it looks like we'll discuss growth hormone in further detail at our next appointment.  I take him back in two months and do the typical full-day appointment; echo, EKG, Pacemaker clinic, etc.
In the mean time I'll be doing as much research as I can on growth hormones and HLHS so we can make the right decision for Josh.
Anyway, that's where we stand. Hoping for another good report in 2 months. :)

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!