Happy Birthday Buddy!

3 years ago a beautiful soul entered this world and his life forever changed mine.  The anniversary of his birth brings such a mixed bag of emotions.  It is with sincere gratitude that I look back on these past 3 years and thank the Lord for Stephen's life.  While so many heart heros fail to see their first birthday, Stephen has seen 3 and I know how blessed we are.

Each year I go back and read through the blog posts from the beginning.  They tell a beautiful story of the bravest little guy I know and capture so many of our raw emotions.  They show our cries to God as well as our praises.  They bring me to tears and yet bring joy to my heart.  It has been a hard journey but also a beautiful one.

This picture below shows the 10 seconds I got to hold my baby on the day of his birth.  He had been in this world for a good 20 minutes before I even saw a glimpse of his face and it would be days before he would be in my arms again.

There was a team of 11 doctors, nurses, specialists, respiratory therapists, and a transport team that crowded the delivery room.  They immediately placed IV's and wires on his tiny little body.  While most moms wait to hear their babies weight and height, I waited to hear he was stable and able to be moved.  The first glimpse I had of his face came from a photo Joe was able to sneak on his phone.   I then found myself for the next few hours stuck in one hospital while my baby and husband were in another...a heartbreaking place to be.  I was relieved when they finally let Joe wheel me down to Radys to be with him.  I sat for hours in a wheel chair next to his bed.  There was nothing I could do for him but sit and pray.  At this point he was slightly struggling and even little noises would agitate him and cause his oxygen saturations to drop.  So I sat and prayed...and snuck in his first picture with his daddy =)

While this day was in so many ways a struggle, it is such a blessing to be sitting here 3 years later with so much to be thankful for and so much to celebrate!  God has walked this road with us every step of the way.  He has been our rock and our refuge and we would not be who we are today without Him.  I am so thankful for the life and provision he has granted Stephen and I pray that he would continue to strengthen his heart and use Stephen's journey for His glory.

There is also so much to celebrate today!  We celebrate his life and all of the joy he has brought to our lives!  We celebrate the obstacles he has overcome and the strength he has shown.  We celebrate the impact his life has made and how God has done "immeasurably more" than we could have dreamed.  We celebrate Stephen!  In all his wonderful silliness we celebrate Stephen today!

As per Stephen's request we will be spending the day at Legoland!  He has been counting down all week (with help from his siblings) for today.  He is sooooo excited for his birthday and that just makes it extra special for me =)

He has grown so much these past few months!  He still LOVES school work and asks to do it EVERY day.  He knows almost all of his letters and numbers and loves to count.  He is completely done with diapers, sleeps in the bottom bunk, can peddle his tricycle by himself and hits a baseball pitched at him.  To a mom who was told he would most likely be delayed...these are all little miracles!

So today I wish my little buddy a very HAPPY BIRTHDAY!

My God continue to bless his life and grant many more Birthdays to come!

The Day You Were Born

The day you were born left an imprint on my soul.  It was a day mixed with excitement and fear, anticipation and unreadiness.  You would think being a fourth child it would have felt routine or familiar, but your delivery was like nothing I had experienced before.  With a room full of spectators you made your appearance into this fallen world.  You were not placed on my chest or in my arms...it was 15 minutes before I ever saw your face.  Before the first of many hard goodbyes I held you a mere moment, daddy said a prayer and we gave you a kiss.  It was not enough time to soak you in.

The day you were born I found myself alone in a delivery room trying to recall your features, wishing I could be with you.  I did my best to stay strong, to pray and to trust in God, but I was scared and broken and clinging to Jesus.
The day you were born my life was changed.  My perspective, my priorities, my desires, my prayers...they were all reshaped that day.  Your life taught me what matters most, and where ultimate healing comes from.
The day you were born I had to live out my faith through pain and suffering for the first time.  I had to cling to what I knew, not what I felt.  At just 9 days old we handed you over to a surgeon knowing that the pain you would endure was necessary for the joy you have today.  It was heart-wrenching saying goodbye and giving up all control.
The day you were born I understood your life was a gift bestowed upon your daddy and me and I clung to that knowledge and our hope in Christ.  The love we have for you runs deep, yet your heavenly father loves you more.
The day you were born my life became fuller and the world was made brighter.
Today, with a plethora of emotions, I celebrate that day.  I celebrate your life.  Stephen, you have touched more people in 2 years then some touch in a lifetime.  God has used your story and your heart to make an eternal imprint on this world...my life is just one of them.  You are strong, brave and ever-joyful.  Your smile brightens my darkest days and your joy brings peace to my soul.  I pray that joy will never leave you and that the Lord continues to bless you and protect you and strengthen your heart.
Your life has made me a better woman, a better wife and a better mom.  I love you Bubba and I am grateful for the day you born!

Happy 2nd Birthday!!!!!

Many thanks to all of you who have continued to pray these past 2 years!!!  We know how powerful your prayers are and we are so grateful for you!
Much Love in Christ,
The Russells

Cardiology Check Up

Yesterday was Stephen's 6 month check up with the cardiologist.  The doctor said everything sounds wonderful and that he will see us in 6 months for a full evaluation including an echo.  This time around he only had to have a chest X-ray and EKG...no echo.  I am always a little nervous/anxious leading up to these appointments.  On one hand I expect to hear only good results because he doing so well but on the other I know a list of complications that can easily arise.  I am beyond grateful for the good report and pray that Stephen's heart continues to function well.

He is a charmer for sure and he is getting so big!  He is no longer a baby but somehow grew into a little boy.  His adorable squinty eyed smile melts my heart and he asserts his independence more and more each day.   He picks up his bowl and drinks the rest of the milk when he finishes his cereal and helps empty the dishwasher.  He loves building with legos and coloring with markers (I need to get more washable ones) at the table while his sibling do their school work.  He loves to sit in my lap and read the same book over and over and over and leans in to give me kisses any time I ask...well mostly =0)
Life is good and we are very blessed.

As for prayer requests...please continue to pray that Stephen's heart remains strong and healthy and that our family can avoid all these nasty bugs going around.  I go into a minor panic mode when I hear "flu" because I know full well what that word can mean for Stephen.
Thank You!
~Kim

Here are a few recent pictures and even a video of the little guy =0)

Riding the train with his proud Big Brother

                                   

Happy Birthday Buddy!!!

Dear Stephen,
Words cannot express how much I love you.  Your life has changed me for the better and has taught me to love deeper than I ever knew was possible.  You are the happiest kid!  Your smile is contagious and you fill our days with laughter.  God has given you something extra special that just shines from you.  Everyone who meets you sees it  =0)  You are the strongest little boy I have ever know and I am honored that God chose me to be your mommy.

Happy Birthday Buddy!!!  I love you!!!

Love,

Mommy

10 Months Old!

Here are few cute pictures of our 10 month old!

Reading the Bible with his siblings...such a big boy now!

Sporting his Valentine's Day shirt..."My Heart Beats...4U"

LOVE it!

Stephen is doing everything a 10 month old should.   He is constantly on the move, pulling himself up onto everything, climbing on whatever he can, exploring under tables...he keeps me on my toes!  I can only imagine what it wil be like when he starts walking =0)  

He is still quite the charmer and has a smile that melts your heart.  He has learned to give high fives and kisses and likes to fake cough squeal...he will do anything for a laugh... and his audience finds it all very amusing =0)  Sleep has yet to come but we are making some progress.  We are loving watching him grow and seeing his personality come out more and more.  He is a fun little guy!

Please continue to pray for his health.  A little cold landed us in the ER for 8 hours.  We luckily avoided a hospital stay, but pray that he can steer clear of the nasty bugs going around everywhere.  

With Much Love,

The Russells

8 Months

Oh how Stephen has grown!    He turned 8 months yesterday and is cute as ever.  He is mobile and crawling all over and can find even the littlest of items to put in his mouth.  He has 6 teeth and is becoming less and less interested with baby foods and much more interested in what we are eating.   We lowered his crib when we found him sitting up in his crib and pulling up on the bars.  How can this be?  He is growing up too fast!  He still loves to smile and laugh and even bobs his head and "dances" when we sing.  He has started to entertain his siblings and has made the connection between his actions and their laughter.  So when he bangs his head back on his high chair and his siblings laugh...he smiles and does it over and over.  I love this stage =0)
He is finally sleeping better...I think I have been getting 3-4 straight hours some nights, and he has taken a larger interest in Joe which frees up my arms a bit.  His smile is adorable, his laugh is contagious and I am loving watching his personality come out.

Please pray for Stephen as he goes in on the 21st for a sedated echo.  It is our prayer that is heart looks great and that no procedures would be needed from now until his next surgery.  And pray that we can all remain healthy for Christmas...I am doing my best to keep the kiddos in a bubble until then =0)

6 Months!

I can't believe that Stephen turned 6 months today!!!  We are so grateful for his precious life and God's faithfulness.  We have had our ups and downs but God faithfulness has remained the same.  

Stephen is loving life!  He is sitting up on his own, eating baby food like crazy and is about to get his upper teeth any day now.  He has the most kissable cheeks, an incredible smile and daily melts my heart  with his charm.   In the midst of a chaotic day, the kind where you want to just scream, I laid on the floor, sat him on my belly and ended up laughing as he smiled down on me and blew bubbles.  It was just what I needed.  A reminder of how insanely blessed I am.   

"Shout for joy to the LORD, all the earth.  Worship the LORD with gladness; come before him with joyful songs.  Know that the LORD is God.  It is he who made us, and we are his; we are his people, the sheep of his pasture.  Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name.  For the LORD is good and his love endures forever; his faithfulness continues through all generations".

Psalm 100

HAPPY 6 MONTHS Stephen Joseph!  We love with all of our hearts!!!

1st Cold

Stephen seems to have got his first cold this week.  He is pretty congested and has a little cough.  We took him to the pediatrician right away...it felt kind of weird doing so.  I would not have taken any of my other 3 in with his symtoms, but with Stephen we have to be cautious.  The pediatrician decided to put him on a 10 day antibiotic to be safe.  He even said the same thing...he wouldn't have prescribed anything if it was any other child.  So once again Stephen is a special case =0)  I am thankful they are so careful with him and that they wouldn't wait until it got worse to treat him.
Please pray that the drugs take care of this and that it doesn't develop into anything else.  He was already having a hard time sleeping at night and this has made things so much worse.  Last night Joe and I were up from 2am-5am with him...not fun.  I almost grabbed the camera to take a picture of his big smiles but I was too tired to search for it.  I look forward to him sleeping well again.  He was almost sleeping through the night before this last surgery and now things are just a little crazy.  Even just 2 or 3 hours of straight sleep would be a dream =0)  I used to be able to sleep in but now that I have kids in school I have to be up by 7 too...yuck.  This morning I was a little crabby but I have since been able to chill out and be extremely grateful for what I have.  I got to spend the morning with a good friend over a cup if coffee.  It was just what I needed.  
Thanks for your prayers friends!  We see the cardiologist on Monday and will let you know how he is doing =0)

God answered our prayers!!!  Stephen has been eating through the night!!!  They just drew some labs and wheeled him off for a chest ex-ray, but I would assume we will be going home today!  Praise God!  JOe was even able to sleep in the room with us last night and we got some rest...who would have thought =0)  It was such a great night and I am just so thankful for your prayers and God's provision...hopefully we will have some "going home" pics later!!!!

Stephen was taken back around noon so we don't expect to hear anything until 5 or 6 tonight.  I have been doing surprisingly well today and give all the credit where it is do.  God is so good and so faithful.  This morning I started to cry at the thought of this surgery but something clicked and I was abe to hold some of my thoughts captive.  You see I tend to be over dramatic...just a little, and can allow my mind to take me places that it honestly just doesn't need to go.  I like to think of my self as an optimistic pessimist...I prepare for the worst but hope and pray for the best, but today I decided to try something different.  I am going to trust that all will be ok, irregardless of the outcome.  The words from Job came to my mind "Naked I came from my mother's womb, and naked I will depart.  The LORD gave and the LORD has taken away, may the name of the LORD be praised"
Today I am doing my best to trust in God and all I know to be true.  I am not going to think of the worst and what could go wrong...it would break me.  "Now faith is confidence in what we hope for and assurance about what we do not see"  I have been and will continue to prayerfully go through today knowing that God is the creator and ruler of all things and that he is holding our precious Stephen in His mighty hands.  God if the giver of life and the ultimate healer and in Him I will put my faith.
I know God is with him and is with us and somehow he is working all these things out for His glory.  
Please continue to pray.  We will give a quick update when we here from then

"O most loving Father, who willest us to give thanks for all things, to dread nothing, but the loss of thee, and to cast all our care on thee, who carest for us; Preserve us from faithless fears and worldly anxieties, and grant that no clouds of this mortal life may hide from us the light of that love which is immortal  and which thou hast manifested unto us in thy Son, Jesus Christ our LORD.  Amen".

Please be praying friends.  Around 11:30am Stephen be wheeled away from us again...it brings me tears just thinking of it.  I can't begin to to put into words what it feels like to leave his side knowing what he is about to go through.  I wan't to hold him close and never let go.  He is my baby and I couldn't love him more...but somebody does and that is where I find my hope, my comfort and my peace.  I know that when we can't be with him...God can.  He has never and will never leave Stephen's side, or ours, and we know we can put our faith and trust in Him.  But it hurts...deeply hurts.

So many people have asked how they can help us and right now 2 things come to mind.

1.  Prayer.  Please pray fervently for him today.  Pray that the surgery is a success with no complications.  Pray that his body tolerates being on bypass once again.  Pray that God would guide the surgeon and team and pray that his recovery would be quick and "uneventful" and that his body will easily adjust to it's new circulation.  

2.  Please consider making a donation in honor of our little Heart Hero.  It doesn't take long and your gift will go directly to the Heart Institute at Rady Children's Hospital and will support the life-saving efforts of children like our little Stephen.  We feel honored to be able to give back in this way and would love your support in doing so.  I can't think of a better day to hit or surpass our families fundraising goal.  You can find the information on the website below

http://shamuandyouwalk.org/stephenrussell

Thank You all for supporting us through this journey.  We serve a mighty God.

Last picture before we left

Jeremiah 29:11-12 
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.  Then you will call upon me and come and pray to me, and I will listen to you. 

Pre-op went well today and we are all set for tomorrow.  After spending a little over 4 hours at the hospital were blessed to spend some much needed "distraction time" with our kiddos at a hotel.  We were hoping to stay at the residence in off Scripps/Poway again, because we just loved it there, but when I checked online they only had a 2 bedroom suite for $319/night...a little over our price range =0)  So I made reservations for another Marriott by the hospital and was planning on checking in there today.  During the pre-op I got a call from my amazing friend Jenni who put in a call to the Manager (she used to work for him) and told me she got us 2 nights there...we were stoked!  I called the other hotel and canceled and told my mom where to meet us.  That alone was a blessing...but wait...there's more.  Are rooms were comped...que tears.  This hotel is run by the most amazing people who have shown so much love to our family.  This was such an unexpected blessing.  But it doesn't stop there.  We went swimming with the kids, and had a BLAST, and when we got back to our room we found these...

 With this note...

Yes I cried.  Their generosity and thoughtfulness was touching and brightened my day.  Thank you dear friends for putting smiles on our faces!  You have gone above and beyond what I could have ever dreamed of and have blessed our family tremendously.  I can only try to explain how great it feels to be loved and supported by so many different people from different places and walks of life.  Your kindness encourages us and gives us memories to look back and smile upon =0)
It was hard saying goodbye to Michael, Lizzie and Audrey.  Lizzie was hurting.  She is worried about Stephen and afraid for him to have this surgery.  She literally kept talking about them "cutting his belly"  She is so sweet and so loving.  I did my best to put her worries at ease and let her know that the doctors are helping Stephen to be stronger and will take the best care of him but that more importantly God loves him and will be watching over him.  That and a cartoon on the car ride home seemed to do the trick =0)
Please pray for the surgery tomorrow.  During pre-op we had to hear so many possible outcomes (things that can go wrong) that it can be a little disheartening.  They will be operating near certain nerves that can becomes damaged, his diaphragm can collapse, he can bleed too much or form a blood clot that ends up in his brain or lungs, etc.  Please pray that NONE of those things happen!  Pray that the surgery goes smoothly and that he recovers well with no adverse side effects.
And pray for our hearts.  I know how difficult tomorrow and the next week will be.
The scheduled start time is 11:30...but since he is the second case of the day it could get pushed up or back.  The surgery will take somewhere between 4-6 hours so I don't anticipate being able to see him until after dinner.  I will try to post a quick update when I can and will give more info after we have been with him.

Thanks for your prayers...we know how powerful they are. 

With Much Love and Gratitude

The Russell Family

Surgery Date

Please pray for Stephen as his next surgery will be a month from now on August 17th at 11:30 am.  It is crazy how emotional it was to receive the date.  Old scars were ripped back open.  I tried to call my family to tell them but had to revert to emails instead.  It breaks my heart that he will have to go through so much again.  He doesn't deserve this.  He is so innocent and sweet and I don't want him do have to endure so much again.  I know it will break our hearts looking at him in that condition, especially when he looks up at us with his big blue eyes and I again won't be able to hold him or even explain to him why he has to go through all of this.  It seems like such a huge step backwards yet the reality is that this surgery is another necessary step forward for him to live what we pray is a long life.
During the first surgery they reconstructed his heart to function on only 2 chambers and created a shunt to take blood to his lungs since his only functioning ventricle was pumping blood to his body.  He will soon outgrow the temporary shunt that directs the blood to his lungs so they will be creating a new route by connecting the superior vena cava (which carries the blood returning from the upper body) to part of his pulmonary artery.    In the third and final surgery (when he is 3-5 years old) the lower body venous blood will also be diverted to the lungs  which will then allow all of the oxygen poor blood from the upper and lower body to flow through the lungs without being pumped; it will solely be driven only by the pressure that builds up in the veins.  Crazy I know.  I am always amazed that they came up with such a series of surgeries that will allow our son to live with half a heart.
All surgeries carry great risk so please pray that it all go well and that Stephen powers through this one just like the first.  Please pray that his body again can tolerate being put on bypass and that his heart would not have the same complications as it did during the cath lab.  Also pray that he remains healthy as the date approaches.  Even the slightest illness could postpone the surgery.
Sometimes the only words I have are "this sucks".  I know God has worked great things through Stephen's heart, and he will continue to do so, but the pain is real.  I put off writing this post because of it.  We knew the surgery was coming but having an official date made it so much more real.
We continue to put our trust in God knowing Stephen still is, and will forever be, in His hands.

Thank you for your prayers

Stephen had his holter monitor put on him yesterday at 3pm and wore it for the past 24 hours.  The little guy handled being hooked up to 7 leads pretty well.  It is basically a portable EKG that monitored his heart to see if there are any irregular heartbeats and such.  Today we were able to take it off and put in in a FedEx box to be shipped back to his cardiologist.  I am assuming that if nothing is wrong we won't hear anything until our appointment on July 27th.  He sure is cute though!!!!

He also surprised the nurse with how much he has grown in 5 days...he is now 13 lbs 13 ozs!!! 

Just check out those thighs =0)

Please continue to pray for his heart and that God would continue to strengthen him.

We appreciate you all so very much!

Much Love

The Russells

Cath Lab

Today has been a long long day.  I have been up since 4 am!  Things didn't turn out quite the way we were hoping but he is doing well.  They did end up needing to put a stent in his shunt because there was some narrowing due to scar tissue.  Amazingly it is all done with catheters inserted through his groin.  It will hold him over until his next surgery which will most likely be mid-August.  He also had a heart block during the procedure.  We were told that his heart did not stop but his heart rate did drop significantly low and they will have to monitor him closely to make sure it was a one time occurrence from the probe touching his heart.  If it does repeat itself it would mean he would possibly need a pace maker...not ideal but also not the end of the world.
Joe actually just left to spend the night with our kids and I am staying with Stephen in his hospital room.  As long as there are no complications tonight, and his EKG looks good in the morning, we should be discharged then.  I have a feeling it will be a rough night.  We are in a shared room with another baby which means twice the crying and twice the beeping.  However I am grateful that I get to be here with him and can feed him through the night.
Stephen is a trooper.  The poor little guy sounds awful.  His voice is hoarse from the ventilator, he is still very sleepy form the anestesia, and is so pale...but he was still smiling up at us  =0)
Please pray that he does not need a pace maker and that his heart rhythms remain normal.
Pray that I can get some sleep tonight and that we get to go home tomorrow.
And pray for Joe and I...this is not easy to live through.  It breaks my heart, but I thank God daily for him and pray for many years to come =0)

Pre-op this morning

Smiling up at Daddy

Cath Lab Tomorrow

Hi Everyone!
Please pray for Stephen tomorrow as he goes in to the cath lab.  We have to check in at the hospital at 6:30 am but the procedure is at 8:30.
Pray for the doctors- that God would guide them during the procedure and that all will go smoothly
Pray for Stephen- that he would have no difficulties being intubated/extubated and that he doesn't get an infection.
Pray for Joe and I- for God's peace in our hearts...it is never easy watching your child wheeled away

We will let you know how it all goes and will pass along any results we are given.
Thank you for your prayers!!!!

Here is a cute picture of the little guy sleeping...love the pose!  (and the chunks!)

2 Months Old!

Yesterday Stephen turned 2 months old...it is crazy how fast time flies.  Today he went in for his well baby check-up/ shots visit.  I adore our pediatrician.  She is a sweet Christian women who clearly loves what she does.  She has never cared for a child with his condition but I trust her all the same.   Besides, she doesn't need to be an expert with his heart condition...that is what his cardiologist is for =0)
I can tell she will always lean on the side of caution with him, which I love and appreciate, and she has been in great communication with his other doctors.  We have been very impressed with the coordination of his care.  But mostly I just love that she believes in the power of prayer and truly knows what a little miracle he is.
I am happy to report that he is doing AWESOME!  Our little chunker now weighs 12 lbs 12 ozs...he seriously gained 4 1/2 pounds in just 2 months!!!  We praise God for this remarkable weight gain knowing full well it is an answer to so many prayers.  So far he has tolerated the immunizations well but please pray that he has no side effects/ reactions to any of them.  
Developmentally he is right on track.  He is holding his head up on his own, pushing up with his arms and his tummy and smiling a ton.  He is one of the happiest babies I have ever seen.  This kid smiles all of the time and it isn't a little smirk but a wide open "I love life" kind of smile that just melts your heart. He adores looking up at his siblings and they just can't get enough of him.  
As for prayer requests please pray for his upcoming cath lab on June 29th.  We don't know fully what to expect but please pray that they don't have to "fix" anything while in there and that his pressures are where they would like them to be before the next surgery in about 2 months time.  Also pray that he would not get an infection and would be able to go home that night...thank you!!!
As for us we are all doing well.  Michael finished up preschool and will be a big kindergartner next year.  We have him enrolled in a neat program where he will go to school 3 days a week and I will get to teach him the other 2 days.   Lizzie and Audrey have been spending their days playing "house".  It is a crack up.  Lizzie is the mom and Audrey is the baby and boy do they have their roles down!  Summer is always busy for Joe.  He has programs/events 3 nights a week, 2 weekend retreats and 1 week long trip to mexico.  Usually the kids and I tag along to some of the pool parties and beach days but sadly this summer we will have to miss out.  It is just for a season though and hopefully next summer we will get to be a little part of it all.   I really do miss seeing people and going to church.  The few conversations I have had with people have been so uplifting and I probably talk their ear off since most of my days are spent with 4 kids age 5 and under.   I look forward to the day when we can take him out a little more than we do now and not have to worry as much about germs and such.  
Thank you all for your love, support and prayers.  Your little messages brighten my day...thank you =0)
Here are some pictures form this past week...

Love that double chin!

Stephen had a cardiology appointment on Monday and he is looking GREAT!!!  They did chest x-rays and an EKG and the doctor just kept commenting on how great he looks and how well he is doing.  He was impressed with the rolls on his thighs...Stephen is now over 12 1/2 pounds!  The next step is a cardiac catheterization scheduled June 29th.  He will be fully sedated and intubated for the 2-3 hour procedure and he should be able to go home that night.  The cath lab will help determine the second surgery date which they are now looking at it being sometime in mid-late August.  Just the thought of it brings tears to eyes so I do what I got to do and not think about it.  Its hard to think that in 2 short months we will have to live through it all again.
On a brighter note we did let the kids hold Stephen and have some cute pictures to share.  We are back to being a bit more cautious but it felt good to let him be in their arms.  It was nice that they got to have that special bonding time and it sure brought Joe and I great joy watching.
Please continue to pray for Stephens heart and that our family would remain healthy.  We know there have been some illnesses going around and would sure would love to protect him form them...thanks!!!