Keeping Germs Away

I was never a germaphobe.  Honestly...never.  I didn't sterilize my kids pacifiers or even rinse them when they fell on the floor.  I didn't make people wash there hands when they wanted to hold my child and never thought once about asking someone if they had been sick before coming to my house. If ever a mom is going to freak out with germs it is with her first kid right?  Wrong!  

After spending his first month of life in the NICU and learning just how dangerous a virus can be my entire take on germs changed.  Standing orders from our doctor is to not be around anybody who has had the flu or anyone who has even just been around someone else who has had the flu within the past week.  Seriously.  Stephen has had 2 fevers ever and both landed us in the hospital.  

The first six months of his life was a whirlwind.  After his second surgery at 4 months old we were literally at the doctor almost every week.  I went online to check his medical history at our pediatricians office and saw that in Sept of 2012 he had 2 sick visits, then 2 in Oct and 3 in Nov.  He would constantly have a runny nose and be put on an antibiotic for fear it would turn into something worse.  I felt helpless.  I wanted to find away to keep him healthy and away from the doctor.  One night I turned to a Heart Mom support group online to see if others had the same experience and what they did.  I came to learn that there kids had the same troubles and some offered me a wonderful solution...ESSENTIAL OILS!

Essential oils are natural aromatic compounds found in the seeds, bark, stems, roots, flowers, and other parts of plants.  These amazing oils have changed our lives!  Since we started using them over 2 years ago I have seen the amazing benefits they have to offer. Last month was the first time Stephen had a sick visit (it was an ear infection) in almost 2 years!  That alone is incredible!  The list of Essential Oil wins for our family goes on and on.  Michael was able to go over a year without using his inhaler for asthma.  We would use Eucalyptus and a blend called Breath and it would work wonders.  Oregano took care or my warts on my fingers (gross I know) and Joe's athletes foot.  Lavender helped me sleep soundly without tossing and turning all night.  OnGuard would knock a sore throat out almost instantly if caught right away.   Basically I have an incredible natural "medicine cabinet" that I use for cuts, burns, coughs, runny/snuffy noses, athletes foot, sore throats etc.  I truly LOVE these oils and LOVE sharing them with others.  A friends this week had a sinus infection and I was able to lend her 2 bottles...no prescription needed!

I went into these oils skeptical but hopeful.  I was desperate to find something to keep Stephen healthy and Joe and I gave it a go and we are both so glad we did.  I can seriously go on and on about the benefits of these oils and what they can do for your family but rather than write away for the next few hours I will invite those who are interested to contact me for information. I would love to chat with you and share my experiences =)

For those local I will also be hosting an Introduction to  Essential Oils class at my home with my lovely friend and fellow heart mom Susie who introduced me to Doterra.  It is next Sunday March 1st @ 1 pm and will be a fun learning essential oil basics and tips to keep your whole family healthy this winter and spring! We will focus on common uses for essential oils in the home, from strengthening the immune system to ensuring clean hands and surfaces. You will learn how to replace many of the synthetic chemicals in your kitchen and bathroom with natural and safe essential oils! There will be yummy snacks, samples and giveaways too! Let me know if you are interested in coming next week and I will send you the Evite. For those who can't attend but want more information send me an email or give me a call. kdrussell04@aol.com

I still don't love germs but I don't feel so helpless against them. They are truly a God given gift and I think it is pretty cool that I have a bottle of Frankincense and Myrrh on my bathroom counter =)

Much Love,
Kim

Ruined

My sister-in-law Carlee wrote this beautiful piece on Stephen...a perfect post to share during CHD Awareness Week!  Each time I read it (yes I have read it several times) tears flow.  I am so very blessed to have people in my life who love my son deeply.  They have cried with us, prayed with us and rejoiced with us.  I don't know where I would be without them.  

Without further ado...

Ruined

I Wear Red for Stephen!

Congenital Heart Defect Awareness Week is coming up!!!  To kick off Awareness week (February 7-14th) tomorrow Friday, February 6th is National Wear Red Day!!!  It may seem silly but it is a simple, fun way to honor a Heart Hero or remember an Angel within our Heart Community.

I encourage you to wear red tomorrow in honor of the adorable little 2 year old you have all been praying for =)  Take a picture and upload it on Facebook and tag Joe or myself...or just wear red!  We will use some of these photos for Stephen's album to show him the love and support he has received throughout his years =)

Feel free to also use the picture below on Facebook to share with others who you are wearing red for!

I hope to see a bunch of you in RED!!!

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.