The "F" Word

Last Monday was Stephen's 6 month heart check-up.  Nothing big, just an EKG and cardiologist appointment.  And then it happened...his doctor dropped the "F" bomb.   I knew the dreaded word would come up sooner than later...but I still expected it to be later.   Stephen is just about ready for the Fontan, his third open heart surgery.   Our hospital goes by weight (15 kilos) and Stephen is currently at 14.1.

I have sat here for a week trying to write a post but every time it gives me a headache and I just stare blankly at the screen.  My heart (and my head) are not ready to go there right now.  I cannot bare to think of the reality that awaits him so instead I have checked myself into a different mode...research mode.

While our hospital and many other centers base the timing of the Fontan on weight, I have been, and will be continuing, to seek second, third, fourth and fifth (if needed) opinions.  Without getting into too many details (I am exhausted with it already) the Fontan comes with a list of risks and complications that are depressing to say the least.  Since our first appointment at Rady's, while I was still pregnant, we were told that the 3rd surgery begins a "time clock" on the liver.  While it is beneficial in raising oxygen saturations it can be hard on other organs, particularly the liver, and I am not sure I am ready to hit "start" just yet.

While Stephen is thriving, and showing no current signs of needing the Fontan, I am questioning the timing issue.  Our doctor is thinking a heart catheterization procedure this summer and open heart surgery early fall.  I am having a hard time with this.  Not only because I can't imagine handing my child over again but because I am not sure now is the best time Stephen.

The weight of this decision is currently is too much for me to bare so I am writing and asking you to pray for Joe and I as we gather information to make an informed decision.

This week I had the pleasure of speaking with another cardiologist in Hawaii who tends to believe in putting off the surgery as long as the child's sats and energy are stable.  He knew talking with him would as he said "muddy the waters" but I am so glad I did.  The reality is we have 2 sub-optimal (at best) options and we need to weigh the benefits of going ahead with the Fontan now with the risks...even if they are down the road.

Thankfully no decision needs to be made now.   Our cardiologist is expecting us to call in June to discuss the matter further.  Until then I will be contacting other doctors on both sides of the fence to gather as much information as I can and seek prayers for wisdom and guidance before we make this awful decision.

Please pray for peace and clarity.  Even if we go through with it this fall I want to have peace that it is the right decision for Stephen and not just because he has gained enough weight to be a candidate. While I know it will one day be inevitable this mommy needs to take the time now to diligently research and pray...and ultimately surrender and trust God.

I truly thank each and every one of you who prays for our son and our family.  May God continue to guide us and use our lives for His Glory.

"Trust in the Lord with all your heart

and lean not on your own understanding;

in all your ways submit to him

and he will make your path straight"

P.S. 

 Now that I got this heavy post out of the way...I hope to follow with some 
more lighthearted updates soon!

Love,

One Blessed Mommy

Dental Work & Update

Hi Friends and Faithful Prayer Warriors!

Well the long awaited dental appointment is coming up this Friday.  I am actually surprised at how hard it has been for me.  Every time I think about it I tear up (if I am around people) or just full on break down when I am by myself.  This will be the first time we will have to hand him over at an age when he is aware of his surroundings and his dislike for white coats.  His first 2 surgeries were at 9 days and 4 months.  And while this is by no means "surgery" or even in the same ballpark as open heart surgery, he will have to be fully intubated and sedated in the OR at Rady Children's Hospital.

I am just praying that we will be able to go back into the room with him as they gas him first to put him to sleep.  I don't want him to fear walking down the hall with strangers or being put on a cold sterile table in a room that would scare any two year old.  While he should feel no pain, my heart breaks for the fear he will have...see crocodile tears flowing down my cheeks and onto my lap now =( I see it in his eyes every time we are at the doctors or even when he thinks we are at a doctors office. I have seen him curl his lip and try to fight back tear to be brave and ask to be "all done" while visiting his newborn cousin in the hospital and it breaks me.  I want so bad to be able to take all of this away from him...I would trade places with him in a heartbeat!

So please pray for peace.  It is really hard to see him so scared.  And please pray that we can be with him until he is "out".  I want to be able to hold his hand through this.  I don't want to say goodbye at the pre-op curtain =(

The procedures itself should take about 2 hours but we are planning on a long day.  We have an hour drive to the hospital to arrive 1 1/2 prior, to the 2 hour procedure and then however long it takes to wake/recover from anesthesia before the hour trip back home.

 Today I began to prep him.  I told him he was going to the doctor on Friday and of course he said "no".  I let him know that mommy and daddy would be with him and to my surprise he asked if "Audie" could come too =)  Too cute.  I told him we would be going to the hospital to have the doctor work on his teeth and that he would even have a special doctor who would help him nap the entire time.  I have learned how important it is to prepare him before visits and I hope over the next few days we can help prepare his heart for his visit on friday.

And lastly please pray that he would remain healthy this week and that there would be no complications on Friday as there are always risks when being put under general anesthesia.

Thank You!!!

On a much lighter note he is doing REALLY well!  He loves playing with his siblings and asks to do "schoolwork" all day long.  This little guy loves to trace his letters and sort colors.   He is really into puzzles and can put 12-24 piece ones together by himself.  He is such a bright kiddo!  As of now his low oxygen sure hasn't made him skip a beat!  He is speaking in mostly complete sentences and definitely exerts his independence and stubbornness...and yet remains adorable.   He loves to pray each night and thank God for Philip Rivers, his dog Chico, Baby Violet, Legoland and his siblings...melts my heart.  He reminds me everyday how blessed I am.  =)

Here are a few pictures of our recent adventures...

Stephen and I went on a date to Froyo and played a little o Fish after we finished our dessert!

CANDY!!!

Hi Everyone!

First off if you haven't had a chance to see this amazing campaign we are a part of with the Ronald McDonald House you can check out the website here Passing It On

A few weeks ago we even made it on the news =)

When you add in $1 each for Philip Rivers and Kevin's donation and double it (thanks to the Walter & Betty Zable foundation)...every yard Philip Rivers passes tonight in Denver is worth $17.10!!! Needless to say it is very exciting watching every Chargers game knowing that each completed pass is raising money for our "home away form home"!

I am also excited to say that we are going down with a group from our church on Halloween to provide dinner and put on a Harvest Fest for the families!  We will be bringing down 10 different carnival style games, a bouncer, some face painters, popcorn, cotton candy, funnel cakes and more! We hope it is a night of relief and fun for the families and children staying at the house and we could use your help!

We already have all of the volunteers we need but we are in need of CANDY!!!  If you are local and want to help out you can drop off candy at our house or in Joe's office at the church =)  Our last Carnival at Easter was such a huge success and we are praying that on Halloween we can be a blessing and a light to the many families who have a child bravely battling in the hospital.

THANK YOU!!!!

~The Russells

The Speech

A few have asked if we could share our "speech" from the Gala, so without further ado...

(Kim)

My husband and I feel incredibly honored to be here tonight.   The Ronald McDonald House holds such a special place in our hearts and we consider it a joy and a privilege to share with you our story, our love for the House, and how your support offers relief and hope to families like ours with children facing a medical crisis.    

Our son, Stephen, was born with a very rare, and complex, life threatening heart defect.  A series of three open heart surgeries (2 of which he has had) are needed to survive.  Stephen underwent his first surgery at Rady Children’s Hospital at just 9 days old, and his second at 4 months.   

I will never forget the day we found out about Stephen’s condition.  In one moment my entire world came crashing down.  It is hard to describe to you in words what it feels like to hear this news about your child.  It is more awful... it is heart breaking.  To hear that he had 70% chance to make it through childhood and would almost certainly need a heart transplant when he reached adulthood was more than this mommy’s heart could handle.  

(Joe)

The hardest days were still ahead.  Physically handing over your child and placing their life in someone else’s hands is very difficult.  It was almost unbearable knowing all he would have to suffer and endure and not be able to take any of it away from him.  As a father every part of me wished I could have traded places with my son and suffered instead of him.  During those hardest times we clung to our faith and each other and chose hope over despair.    Stephen spent his first 26 days in the hospital, and during that time we turned to the Ronald McDonald House to meet our basic needs and so much more.

 The House blessed our family through a very difficult time.  From the moment we walked in they went above and beyond to make our family feel supported and loved...but mostly relieved.  Stephen has three older siblings and when we first arrived at the House the staff blessed them with welcome gifts, and for a brief moment, seeing our other kids so full of joy helped ease the difficult situation we had just entered.   A simple gift and a smiling volunteer can go a long way in taking your mind off your child’s situation.  

 When you are away from the comforts of home for an extended period of time, it’s nice to have a comfortable bed to sleep in, a place to shower, and a home-cooked meal a minute away from the stress of the hospital room.  The Ronald McDonald House truly provided our family a "home away from home".   However, beyond the physical needs it provides peace of mind, relief and support.  It took the burden off of our family from having to travel to be with our child.  With our son in the hospital we didn’t want to leave his side, let alone drive back and forth to rest or eat.  Staying at the Ronald McDonald House put us steps away from Stephen and for that we were extremely grateful.  

The House also provided a place for our family to be a family.  It was difficult being torn between our children.  We wanted to be spend every waking moment with Stephen in the hospital but also wanted, and needed,  to be with Michael, Lizzie and Audrey.  The Ronald McDonald House provided a place for our family to be together.  Kim and I got to play with our kids, to laugh, smile and recharge before heading back to the reality that awaited us in our sons hospital room.   Our children loved coming to the house, and still do to this day. 

(Kim)

The Ronald McDonald House is a tremendous asset to our community yet most people don’t know about this amazing charity until like our family, they find themselves in need of it.  It provides a much needed service for families going through a crisis and is largely run on volunteers.   We were so touched by the volunteers and staff at the Ronald McDonald House, and beyond grateful for all they did for us, that we have returned multiple times each year to serve meals, bring gifts and celebrate Stephen’s Birthdays.  We desire to pass on that warm meal, that feeling of relief, that smile of joy, and that glimpse of hope to the many families that turn each year to the Ronald McDonald House while their children are bravely battling in the hospital.  

Stephen is now almost 2 1/2 years old.  He is a bright eyed handsome little boy who is so full of joy and has a smile that lights up a room.  He is our heart Hero and the strongest little kid we know.  He has had 2 surgeries and needs at least 1 more before he turns 5.  When that time comes we are grateful to know that we can again turn to the Ronald McDonald House to help see our family through it. 

The road has not been easy but I am grateful that through all of the trials we have found joy and have witnessed so much beauty come from so much pain .  Ours is just one of many similar stories of a child hospitalized with a serious illnesses and a family that finds themselves needing a home away from home.  Thank you for being here tonight and for supporting a special place that it close to our hearts.

Cirque du Romp

Saturday night Joe and I had the honor to speak at the 2014 Cirque du Romp supporting the Ronald McDonald House in San Diego...our "home away from home".   It was an INCREDIBLE evening! Hands down the best party (besides my wedding) that I have ever been to!

For 5 brief minutes we got to share our story to a room of over 400 of "San Diego's leading corporate and community philanthropists".   Wow...what an experience!

The event was located at a private country club in La Jolla. The night started with appetizers in and outside the clubhouse.  It was a time for mingling and silent auction bidding.  We were nervous, and slightly out of place...but hey we did our best to fit in ;)

We were then escorted to the main tent by an awesome ringleader...he was hilarious!  The tent was beautifully decorated, the pictures don't do it justice, and our table was immaculately set with more silverware than I knew what to do with!  The evening started with various entertainment before the live auction during which time Steven Tyler came to join our table.  Kind of weird having a rock legend sitting across from you...but pretty cool =)  Joe and I were called backstage about halfway through the auction where people with way more money than us were bidding a whole bunch of it!  Backstage I was all nerves.  Im not a public speaker...not even close.   Joe and I said a quick prayer before walking up the stairs to the stage and well...God took it from there.  As nervous as I was before, I felt a peace on that stage and I know that God used our words to not only raise money for a worthy cause, but to touch hearts.  I was overwhelmed with emotion when toward the end of our speech the audience erupted into applause at hearing that "Stephen is now 2 1/2 years old".  It was incredible.

We were disappointed when we found out we were not allowed to mention "Christ" or "church" in our speech.  While I get it...it is such a vital part of the story (and our lives) that it is rather difficult to convey our true hope without it.  We had to stick with words like "clung to our faith" "blessed" "hope" etc.  When I shared that with Joe I remember thinking as much of a bummer it is, God is bigger than those words and He will shine through.  Imagine my surprise and delight when a woman came up to us after and stated just that!  She literally told us she could tell we were believers..."it just shined through".  Wow!  Praise God for that!   It was just another reminder of how big He is.  That no deletion of words can keep him from being shown.  I will always smile and chuckle to myself when I think back upon this.  The world can try...but He will always win.

After the speech so many amazing individuals came up to us through the night thanking us for our words and offering their prayers.  This was by far the best part.  Being able to freely share our true hope and joy with so many people was the highlight of the night for me.  We literally couldn't walk to get water or use the bathroom without being stopped and each time we got to share a little more with those who asked.  I am still in awe of all the wonderfulness of the night!   I seriously didn't want to leave!  And to top it off the doctor who delivered Stephen was there...it was icing on the cake to be able to thank him again for the part he played in bringing our sweet boy into the world!

Dr. Daneshmand

Directly after our speech was a paddle raise...yeah I had no clue what that was either.  Basically the ask "who here wants to donate $25,000," and you raise your number and give freely with nothing in return.  They went through various amounts and raised over $230,000 during the paddle raise...remarkable!!!!  I teared up.  I know firsthand how much that money blesses and supports families with children hospitalized during a medical crisis.  They might not have understood all of the good they were doing...but I sure did and it was truly touching to witness it.

Then came the main entertainment...Steven Tyler.  The dude is 66 years old and can still rock the house.  I was brought to the front row by one of the committee members and I have to say...it was pretty cool.   He played classic songs like "Dream On" "Cryin" and "Walk this Way" which you can't help but sing right along to.  (I was however completely embarrassed for all of the slightly crazy older women who were fawning over him, it was just weird, but aside from being creeped out by their advances at him it was pretty awesome).


All in all it was an incredible night.  Seriously amazing to see where God has brought us and how far Stephen's story has gone.  I pray that God will continue to use sinners like us to bring about His glory and that Stephen's story heart will continue to touch the hearts and lives of many.



I smiled this week when reading Ephesians 3:20-21

"Now to him who is able to do immeasurably more than all we ask or imagine, 

according to his power that is at work within us, to him be glory in the church and in 

Christ Jesus throughout all generations, for ever and ever! Amen"

The night we found out about Stephen I quite frankly asked God to not forget His promises and to "show up".  I was broken and scared and wanted to know that some good would come if our son was going to have to suffer.  Well, not only did He let me come to him honestly, but he exceeded all my expectations and has done immeasurably more than all I could have asked for or imagined. I am in awe of His work in our lives and I pray that we would continue to follow and trust in Him and that He would continue to make so much beauty come from something so painful.

Pray for us tomorrow as we have an interview with FOX 5 San Diego for the whole "Passing it On" campaign...seriously this is getting crazy big and awesome.  "Immeasurably more" that is my motto right now.  God is bigger than we imagine.  His ways are above our ways and His thoughts are above our thoughts.  His plans far exceed ours and I look forward to seeing where He takes all of this in the future!  

And again thank you for all of your continued prayers for Stephen and our family over the years.  I LOVE it when people tell me they still have the heart magnet on their fridge and they pray for Stephen.  Please know I have no doubt of the power of all of your prayers and through them all of this is made possible!!!!

Here are a few more pictures from the evening!

With Much Love,

Kim

"Passing it On" with Philip Rivers

I am so excited to share this campaign with you!!!  Back in April UT columnist (and friend) Kevin Acee wrote this article about our son Stephen and the Ronald McDonald House.  Sooo much has happened since then!

A few weeks ago our family had the opportunity to meet Philip Rivers for a video/photo shoot to launch this amazing campaign to support the Ronald McDonald House in San Diego!

Both Kevin and Philip will be donating $1 for every completed passing yard Rivers throws this season and they are asking others to join in with them!  Whether you donate $.10 a yard (like us!) or more, it will all go to a great cause!

The Ronald McDonald House (RMH) provided our family with a home away from home when Stephen was hospitalized during his first 2 open heart surgeries and will again be a place we will turn to in the near future.  While it offers a room and 3 meals a day for only $15 it is so much more than just a place to stay.  I wish everybody could experience the warmth and love the RMH has to offer.

Joe and I were already dreaming of ways to come back and serve during our first 26 night stay at the RMH when Stephen was born.  We were beyond grateful for the service, love and care they provided our family and before we even checked out we planned our return!  Within 2 months we brought our youth group to serve our first meal and have returned many times since for meals, birthday parties and the Easter carnival Kevin Acee was a part of.

Needless to say I am amazed at what has transpired through our love for this house.   But it goes deeper.  Being a part of something so big brings me back.  It brings me back to my bedroom the night we found out about Stephen's heart.  After crying until I had no more tears...and then crying some more Joe and I made a promise to each other and to God that we were going to remain faithful and trust in Him.  We knew that night we could choose hope or despair...we chose hope.  I remember frankly speaking to God and saying "You better do your part"  If Stephen was going to suffer, as far as I was concerned, good had better come from it!  I knew all of His promises and I knew good could and would come from this if we followed Him and didn't get in the way.  So that night I promised to do my part and asked God to show up and do his...and boy has he!

Never in my wildest dreams would I have imagined all that God had in store.  He has worked in such incredible and unforeseeable ways... and really why would I have excepted anything less?  I was hoping that at least 1 other life would have been touched by our son's story, and instead thousands have read about it.  God is so good and so much bigger and mightier than I often realize.  He has had an amazing plan all along and I am in awe of how he has used our pain to bring so much joy!

That is why this campaign is so close to my heart.  It is another glimpse of how God has and is using Stephen's special heart to touch the world.  It brings me great joy.  It is beautiful.

So please take a minute to read this latest article...it is another little glimpse into our reality.

and then check out the Website here Philip Rivers' Passing it On... it has an incredible video of Philip Rivers and our family!

Then please please please Pass it On!  Whether you can donate along with us or spread awareness I would ask that you pass along the links to your family and friends.  You never know who may feel a tug to give...and hey it is a fun way to give and route for our local team!!!

I hope Rivers throws for 5,000 yards this season!  Go CHARGERS!!!  And all glory be to God!!!

"Praise be to the Lord God, the God of Israel,

who alone does marvelous deeds.

"Praise be to his glorious name forever;

may the whole earth be filled with his glory"

Psalm 72:18-19

Annual Echo

Short Version:
Everything looks great...Praise God!!!  We will have a follow up EKG and appointment with his cardiologist in 6 months and another echo in a year!

Slightly longer Version: =0)

The night before the ECHO we had to keep Stephen awake until midnight and get the poor guy up at 5:30.  An ECHO takes about 45 minutes to complete, and since most 2 year olds wont hold still for that long, they use an oral sedation drug to put them in a deep sleep.  They prefer for the kiddos to come in exhausted in hopes they can give them less of the medicine and have them fall asleep relatively quickly.

We succeeded in keeping him up until 11:45 watching his favorite videos and sipping milk =0)

To my surprise he woke up happy and the next task was to keep him awake during the 50 minute drive to the hospital...his pal Dusty in Disney Planes did the trick.

Dr appointments and waiting rooms have become more difficult lately.  Since he had to go in and get 2 shots almost every month this year he has associated them with unpleasant memories and therefore cries, points to the door and asks to leave immediately.  It breaks this mamas heart.  Even areas that look like waiting rooms stir up emotions.
So to help ease his fear we let him listen to his favorite song..."The Happy Song"  Total success.  We were able to check-in without one tear shed =0)

Next came vitals...surprisingly he rocked them!  The nurse was excellent and blew bubbles to distract him from all the machines and wires and he he only cried when they laid him down to weigh him...he seriously hates that.  His sats looked great!  He was resting in the low-mid 80's!  A huge improvement from birth when he would ride the low 70's and dip down into the 60's at night.

We moved right along to the exam room where the NP did a small check up and then ordered the anesthesia.  It is not pleasant tasting, and he let us know it, but all in all it was quick and easy.  Now all he had to do was fall asleep.  Since he looked like this before the drugs (yawning) we thought it would be no problem. 

We turned down the lights, got all snuggled in my arms and rocked back and forth.  Usually it can take 10-20 minutes for kids to fall asleep.  The last, and only other, time we did this it took him 5 so we were all expecting it to be easy peasy.  At around 20 minutes he finally fell asleep in my arms and we transferred him to the bed.  Unfortunately he was not in a deep sleep and  woke up when they were positioning him.   They chose to give him more of the nasty drugs and then had me lay beside him in the bed to get him back asleep.  Yeah...he had none of that.  He fought sleep with everything he had.  He started looking around and trying to touch the computer.  Finally they decided he was calm enough to just attempt the ECHO.

He did great.  Actually he was pretty awesome and hysterically funny.  He had many of those moments that would have gone viral had we been able to video tape them.  No joke...the whole room was cracking up!  Then came the end...oh how I wanted to be anywhere but there.  The last images they needed were up on his neck and that sent him off the deep end.  You see one side effect of this drug is that it can make the room spin and the kiddos irritable and well down right crazy.  Enter drunken meltdown.  He started flailing and asking for "Happy Song" "Jack" and "baby Violet"  We tried showing him pictures but that didn't cut it.  Total hysterics set in.

The team was awesome and completely understanding...heck they did it to him not me.  Normally nap time is easy.  I put him in his crib, give him his pacifier and blanket, turn out the light and close the door...done.  Once they got the last pictures we were sent down to cardiology for a follow up with his doctor...what a nightmare.

Stephen non stop cried and asked to leave.  We were "that family".  No one in that waiting room knew what he had just been through...that he was not a bratty little boy but was sleep deprived and drugged. I am sure Joe and I just looked like 2 deers in headlights with a belligerent 2 year old.  I so badly wish I could have announced to the entire waiting room, especially a few women giving me looks, what was really going on but instead the chaos ensued all the way until while in our exam room Joe finally laid him on the table and he went from screaming to snoring in literally 6 seconds.  The dude was done.  He finally gave up and was out.  This is how he should have looked during the ECHO!

When the doctor came in he asked if that was Stephen.  I lowered my head said "yes" and then said it was his fault for drugging him =0)  He too completely understood and said next time since Stephen will be 3 we could try with no sedation...SCORE!  No more sedated ECHO's!!!

Of course the results were music to my ears.  It had been a year since his last one and going that long without knowing was hard.  I know full well that just because he looks so great on the outside doesn't mean everything is perfect on the inside.  I asked a bunch of questions and the appointment ended with the heads up that next year we will be discussing the need for another cardiac catheterization and then the dreaded 3rd surgery.  I told him I wasn't ready for that and he let me know that was why he was giving me a year to prepare.

Okay...tears just came as I typed.  A year?  It sounds like a long time today but it will be here before I know it.  How do you even begin to prepare for something like that?  Yes I have come along way in my faith.  Yes I trust God.  Yes He has brought so much good from all this but still I find myself right back to hating it all.  I wish I could heal my son.  I wish I cold trade places with him in the waiting rooms, appointments and most certainly the operating table.  The thought of handing him over again is too much.  The possibility of loosing him even more so.  So I won't prepare (think about and worry) for a year.  I will pray for him as I always do.  I will pray that God would protect and strengthen his heart and that he would give him what he daily needs, and when the time does come, God will see him through that day like he does every other...well...hopefully with a few extra angels.  (I should clarify that this doesn't mean he will be having surgery a year from now...but that the timing of it and the planning will be discussed and options considered).

So please pray for Stephen and our whole family over this next year.  Pray that God himself would prepare our hearts and continue to give us all just what we need.

After such a long day of on Thursday we took the family to Legoland on Friday...and Stephen was right back to his joyful smiley self!

Thank you all for your love, support and prayers!  
In Him,
Kim