Sternal What?

Well, it's been a stunning and absolutely wonderful four months since surgery.  The emotional freedom I felt after it was over caused me to want to run as fast and as far away from all things heart-related as we could.  We went swimming, running, playing and dancing and really started dreaming about the future.

The only medication we take is aspirin - same as before.

Today I am back - because we are headed to the hospital today to remove some 'sternal wires' that were placed during surgery.  One of the things that's sort of taken for granted in a heart surgery (but is actually one of the most time-consuming for the doctors, if I am understanding correctly) is that in order for them to be able to access the heart, they must break their way in....literally...and move aside layers of 'tissue' very carefully.  The sternum - or breastbone - is in the way too - and must be fractured in the process.  After surgery, it is held together with wires which are threaded through, the ends twisted together and tucked under, and eventually the bone heals and grows over them.

One of Shrav's sternal wires decided to turn itself outward and you can see it pushing up the skin in that area.  It doesn't hurt and she doesn't seem to feel it...but she is pretty upset about having to be at the hospital again today.  Especially since today is show-and-tell at school and she has been talking about what she's going to show/tell all week.  Dr. Hockmuth is planning to remove a couple of wires, possibly more if he can reach them with minimal incisions.

An interesting note about pre-op tests and bloodwork.  We did x-rays and a blood draw yesterday in preparation for today, and did them in the normal lab instead of pediatrics, and it went very smoothly this way.  We were done in minutes, instead of two hours....some of that may have had to do with the fact that we did our labs/x-ray over the weekend prior to the 'big' surgery.

We had the chance to stop up to see Dr. Reed and Shantell (Shrav's beauty consultant) in the PICU yesterday - they get to move into the new PICU at Mercy today!

On the spiritual front, I've been working on Kelly Minter's study "Nehemiah" - wonderful book about rebuilding walls that have been destroyed.  The most poignant thing about Nehemiah's story - and it parallels David's story in this way - is that it didn't matter that they were called to do something and that God ordained them for a particular work.  They were constantly under attack, despite being at the center of God's will for their lives.  Even before David's big sin....and I don't see where Nehemiah did anything to deserve the ongoing assaults from Israel's enemies......but both David and Nehemiah couldn't seem to go very long without a cunning or outright brutal attack on their person and/or the work of their hands.  The book of Nehemiah says that the people worked with one hand while holding a weapon in the other.  Yet they continued on.....

God Bless You.

The Little Things

It amazes me how sensitive Shrav is to people and situations - last year she had a (girl) friend who loved to run and play chasing games at recess.  Shrav would come home and tell me what a great runner the little girl was, and how she just couldn't keep up and felt bad because of that.  It was something I didn't give a lot of thought to because there wasn't a lot we could do to change it....well, until now.

Yesterday Shrav ran across the neighbor's yard to deliver a birthday invitation - and the smile on her face while she ra-a-a-a-a-n back home was glorious.  She can run, with a smile on her face, across a yard.  Every child has to face limitations of some kind, and it is such a blessing to see Shrav be able to improve on one that really affected her last year. 

I haven't blogged much lately because we haven't had a lot of "new" news.  We are getting ready for school - still taking Lasix (diuretic) - and if Nana's scales are correct, Shrav weighs almost 42 lbs!!!  She had never been able to break the 40lb barrier - we were sitting close to 39 lbs at the time of surgery.  I guess we could worry that the weight is fluids, etc - but I don't think so.    She is doing great - thanks be to God! 

The new Bible Study is going great, too, it is about David.  Not really his reign as king, but his flight from Saul's madness and jealousy.  Maybe jealousy actually caused Saul's madness..either way, reading through these books of I Samuel shows a very good example of the destructiveness of envy and the blind hatred it induces.  I love learning more about David and Jonathan's relationship and how God-ordained it was.  What a fascinating example of God providing encouragement along the way when David most likely questioned whether he really heard correctly that he was to be king someday.  God used the awful circumstances of Saul's pursuit and attempts to kill David, to grow David up and possibly cultivate in him the skills he would surely need in order to be king.  If we can hold up under the weight of things around us, it could be that God is using those situations to build us up into the kind of person He can use. 

Love you guys!

Fairies & Rainbows

See the little fairy preparing to fly...Shrav is all about fairies right now, so it was a lot of fun to be able to have her very own fairy scene photos before her birthday comes next week!

When we started talking about the big birthday, the first thing Shrav thought of was Tinkerbell!  So, I started to run with that theme, and now in the past few days she reminded me that Tinkerbell must have a rainbow with her (on the cake anyway).  So, I'm trying to figure out a way to add a rainbow to her cake while still being able to cut and serve without the whole thing falling on the ground in the crowded place we're going to be celebrating!!  :)  This cool rainbow cake is from The Party Wagon blog:

Amazing, huh?  Might just have to try this and put Tinkerbell on top.  Anyway, for some reason the coolest ideas only occur to me when it's the day before the party :/ - ok, we still have a week, but this cake is awesome and may be worth a mid-week freakout to get it done.  Looks like fondant ropes around the outside of the cake, and very little icing in between everything.  Not sure how the flavor would be with just the fondant.  Anyone else think fondant is the tiniest bit bland?

So we are in last minute cake mode, if you have ideas please share them!

Oh and Shrav is doing very well, and her body is feeling stronger every day - one way that I know this is because she now has the extra energy needed to challenge me on everything from brushing teeth to taking a shower.....we are blessed!

Hearts

My sister Eanne bought this Tiffany bracelet for me about 10 years ago.  I have loved this bracelet and almost never took it off for a long, long time.  Notice how the heart isn't attached anymore, and you can see the break at the top of the charm, where it would hang from the bracelet...I lost the charm about a year ago or more.  I noticed one day it wasn't there...so I took the bracelet off and decided I would buy a new charm later...but God had other plans.

A few days before Shrav's surgery, I was out on the deck watering flowers and Shrav came out of the house and was hanging out with me on the deck.  I had the floodlight on so I could see everything as it was late....well, I looked down and my eye fell on a glint in between two deck boards....it looked like it could have been the edge of a dime or maybe a quarter.  Not wanting to miss the chance to find some loose change :P  we got some scissors and slid them between the deck boards to push the coin up and out....the first time, it jumped up and out, then right back down in between the boards....and I could see then what it was.  We got another pair of scissors and came under it from both directions and finally retrieved the heart.  The symbolism here is incredible, and the timing could have only come from God.  A heart returned to its rightful place....it reminded me of being in India with mom, Wendi and Bailey and we were waiting to go get Shrav from her care center, and everywhere we went,  there was an extra/empty chair at our table, reminding us why we were there in the first place.  God would fill the empty place.  And he brings hearts back where they belong.

Feels like there is some scripture that should go here...the Bible mentions the word heart(s) 874 times.  The heart is the seat of faith, and I would love to share a great verse about the heart, but am drawing a blank. If anyone has favorite verse about the heart, please comment and share yours!

Love to you....

Starfish!

Shrav's cousin Samuel lives in Denver and sent a cool box of gifts last week.  The starfish above started out very small - about 3 inches diameter....and now is about 8 inches or more across....we found this cool ocean-colored bowl to let it grow in, and it is AWESOME!

Thanks, Sam!

Post-Op Doctor Visit & A Visitor

Yesterday we saw Dr. Mooradian for the first time since leaving the hospital.  You should have seen the smiles in that office....between Shrav, Dr. Mooradian, the whole staff and me it was like one big goofy grin.  We get to start weaning from the Lasix, the diuretic medicine which keeps swelling down.

Everything looks great right now.  There is something in the EKG that looked a little different, it has to do with the way the electrical impulse causes the heart to contract.  The upper and lower parts of the heart usually are staggered in the timing of when they contract.  Wednesday it appeared that the upper and lower parts were contracting closer to the same time.  There is an audible murmur since the surgery also, but nothing worrisome according to the doctor.  After Shrav is healed up we will have a better picture of things.

Amy Natzke from Valley Church came by last night to spend a little time with Shrav...she braved our house despite being allergic to cats and I hope didn't have to pay too heavy a price for it later....thanks for coming by, Amy!  Shrav and I loved seeing you :)

Here Shrav is opening a HUGE box of presents from her cousin Samuel (Aunt Annie and Uncle Wes may have had a hand in making this happen too) - the microphone has been a huge hit.  Also we have a 'grow your own' starfish which is getting huge....will try and send a picture of this later if the cats don't drink all of the water out of the bowl.

Thoughts & Questions Rolling Through...

Today I have been looking up some details about the type of Fontan surgery that Shrav received. There are a couple of ways, at least, to do the Fontan. Shrav's was an extra-cardiac conduit (tube connecting inferior vena cava with the pulmonary artery) with a fenestration (hole) between the conduit and the right atrium of the heart. The fenestration acts as a pressure relief pathway since the front end circulation is now passive without a pump to move things along. It is especially important right after surgery when the body is adjusting to the pressures, and minimizes pleural effusions (fluid near the lungs) and helps your child go home sooner after surgery, if all goes well. The fenestration can close by itself at some point, or it may be closed in the cath lab later. One significant difference with the fenestration is that oxygen sats are lower (85-95 for us right now). I would love to see Shrav get up in the mid-90's and stay there, but we don't want to have to go through anything else to get it :). Shrav's anatomy is/was very complex and the fenestration is a nice safety mechanism to protect her from complications. With how great Shrav is doing now we are thankful to be where we are and look forward to enjoying life even more!! We still need to get some more thank you's written, especially to the PICU and Pediatrics nurses and doctors....will try and write a post just about the PICU experience soon...

Joy

"I've got the joy joy joy joy down in my heart - WHERE? - down in my heart - WHERE? - down in my heart....I've got the joy joy joy joy down in my heart - WHERE? - down in my heart today!"

This song just came to mind - and it fits very well the feeling of weightless joy I have had this past week.  Shravani is at home getting rested and is doing great.  We saw her pediatrician this week and he was amazed, shook his head (with a huge smile) and said "This is incredible - an adult would never be walking around this way a week and a half after surgery..."  She wasn't just walking, she was bopping, in her half-skipping, half-running way.

She ate two pieces of pizza in one sitting at her grandma and grandpa's house on Thursday - other heart moms will get how huge this is - she actually ate two whole pieces of pizza, on her own, without someone cajoling, begging, pleading, bribing or insisting.  I wanted to rent out a marquis in Times Square to share the news....

There are changes in Shrav - it's as if the lights have come on inside of her mind.  There is a sense of calm in her that I've never seen.  She can sit still on my lap and pay attention to something.  The agitation that was almost always near the surface - that frenetic need to be moving in some direction physically - isn't there now.  Two people who know us well have used the same word to describe how Shrav seems since we got out of the hospital - they said she seems 'older'.  Interesting.  She is able to be quiet when she wants to, and isn't nervous while doing so.

I have been skipping back and forth on the blog between updates on Shrav and the spiritual journey my life has been taking.  Today I'm going to blend them a little bit so you can see what I've been seeing and possibly notice a pattern with everything.   Today the Beth Moore study was on God's faithfulness.  It shared numerous old testament prophecies and showed their fulfillments in the new testament verse by verse. She shared from the journal Science Speaks (author Peter Stoner) that if you take only 8 fulfilled prophecies (out of the 61 total), the probability of all 8 being fulfilled is 1 in 10 to the 17th power.  That is 100,000,000,000,000,000 - using silver dollars to illustrate - this many silver dollars would cover the state of Texas and be piled two feet deep!  Now, mark one of the silver dollars and let a blind person walk into Texas - the chance that he/she would pick up the marked coin is 1 in 10 to the 17th power.   Wow.

The evidence is so strong for God's existence and the truth of His Word - many people who have started out with the goal of disproving Him, have come to believe.  If you are reading this and for your own reasons have chosen not to believe in God, I would ask you to reconsider.  To honestly seek and with your whole heart - and let God show himself faithful to you.

   

Made With Love & Prayers

Mary Axtell and her family blessed us tonight with an awesome meal!!  Do you see us smiling?  Shrav can hardly wait to dig in..

Here it is getting ready to go in the oven.  The foil covering the casserole had instructions for heating it up, and below that it said "Made With Love & Prayers" -

Okay, Mary, how did you get those tater tots to line up like that?  Amazing - and you must have used fresh Rosemary for the garlic bread......mmmmm.

Thanks, Friend :)

Book Club

Today we stopped in to Shrav's Book Club to say hello, and she wanted to stay.  During the class, one of their assignments was to draw a picture of what they did on July 4th....here is Shrav's drawing.  All the squiggly lines above and around the picture, she says, are tubes....it's funny that she drew herself smiling in the hospital bed.  Also, usually she draws hands as a cross + at the end of a line...in this one she drew her arms thickly and her hands with five fingers.  The person on the right is Sarah, our PICU nurse on the last day...she was so sweet and caring with Shrav, no wonder she is in here. Shrav wants me to add this: "I love you guys! The whole hospital thing was horraberry, also known as horrible :). I love my Mommy, I love God too. And I love my cats. I love my butterfly dream light, and anything that believes in God." So there you have it, straight from the little Princess herself!

Resting

We got home late Sunday afternoon, then Grandma Sue and Papa Bob came over to hang out and do arts & crafts with Shrav for awhile. Nana was cleaning up and putting everything away that we hadn't finished from the hot dog party. Shrav is tired, as expected, and napping quite a bit, but she is all smiles and sass so things are looking good.

This week we'll meet with the pediatrician and next week Dr. Mooradian to see how she's doing.

I will upload more photos later but we are enjoying our 'freedom' today.

Here is Shrav just before we came home.

There's No Place Like Home!

We are waiting for the paperwork and should be on our way home in a couple of hours! Yay!!

Thank You's

We haven't been released from the hospital - yet - but right now it looks like we just might be doing that tomorrow.

The tremendous impact of people showing up to love and support Shrav over the past weeks is huge.  Every phone call, letter, visit and those who could come to the hospital to wait with us or visit with us during our stay - all of these things have kept Shrav focused on the fact that she has every reason to hope and keep fighting to get better.

I have struggled because our progress has come so quickly, whereas many families still wait in the PICU, the Procedure Room or other situations.  We are aware of how fortunate and blessed we are to be where we are tonight...we thank God, and pray that He would bless those families and make a way for them to be out of the hospital and living their lives to the fullest.

A friend brought us some Thank You notes that I will surely be working on for weeks to come.  Please know that we love you and appreciate every prayer, gesture and act of love.

A Full Day!

 Kyle and Bailey (Shrav's cousins!) returned from New Orleans (a mission trip) today and they stopped by despite the fact that they have been gone for the past week, and they both leave tomorrow for camp(s).  These kids are incredible!!  I am very proud of them both - they are growing up right before all of our eyes.

Carol and her sweet Jack W came by for a visit and joined us for lunch!  Shrav and Jack enjoyed watching a bit of tv and it was so great to hang out with them!  They brought us the most precious smiley face cup filled with yellow daisies, with a beautiful yellow star-shaped balloon with a smiley on that too!   Jack W picked out and brought for Shrav a monkey that almost resembles a pillow-pet, but it is so adorable because when you lay on the monkey's belly, its 'hands' and 'feet' wrap around her head in a cute little hug..

 This is Kyle and Bailey -  Shrav's cousins!!  They look so much alike....crazy!  Love these kiddos!  They visited Shrav today and she was so thrilled!

Some things just have no words to describe them, like a wrestling match in a hospital room LOL...it's just one of those things that makes our family "unique"  :)

When time starts to pass a little too slowly, there's nothing like a bubble blowing contest to help pass the time LOL.  I think it was actually the bubble game that led to the wrestling match between Jeff and Kyle....Kyle and Jeff were the master bubble-blowers....

On A Roll

A quick update - Shrav is no longer needing Oxygen support!  If she keeps her oxygen levels up all night, we will go home tomorrow.

Yay!  More pictures coming....

New Friends and A New Room!

Today was pretty special for several reasons!  First, we met a new friend - Remy.  He is a therapy dog that was hanging out in the hospital with his owner, Kathy Johnson.  She offered to bring him up to PICU to meet Shrav, and a friendship quickly formed.

One of Shrav's assignments is to walk walk walk - so she took Remy for a little walk all the way out to the elevators....

Our cousin Caleb arrived while we were walking Remy, so it was really fun being able to share Shrav's new friend with her cousin!  Around 1:00 we found out that we were approved to move down to Pediatric floor...so exciting!  The Peds floor has been remodeled, and....well.....I think the picture tells the story.  They may have to force us to leave :)

One Day and a Huge Improvement

We are headed for the Pediatrics floor as soon as they have a room ready for us....we have been completely spoiled up in PICU since there is only one other patient up here.  Yesterday Shrav had a pleural effusion, basically fluid collecting near the lungs, but it drained out of the chest tubes nicely and this morning her x-ray was clear.

  The Peds floor must be filled up...but they have a cool playroom and beautiful rooms with large windows!  It will be a nice place to finish up our healing and prepare to go home.

One cool thing happened earlier today!  I went to the gift shop and a Volunteer was in there with her Therapy Dog.   A few coincidences later, Remy the therapy dog was taking a walk with Shrav through the PICU halls.   Caleb and Nana showed up while we were walking Remy - what a blast!

Pictures to come as soon as we are situated in our new space!

Tough Day But Still Going Strong

Today was the hardest day we've had since the surgery - mainly because the heavy sleepiness after surgery starts to wear off and she has to feel some pain in between medicine doses.  She got weepy and tired quite a bit - (so did I) - but every time she got up to walk around the hospital for exercise, she would come back and stand at the edge of the bed and scootch herself up slowly, swinging one leg up onto the bed at a time - this took several minutes...but she insists on doing it herself and you can see her confidence coming back each time.

We're still in the PICU because of a pleural effusion (fluid in the lung area) - but it is improving and we hope to hear more good reports tomorrow.  We are so thankful to God for His blessings and protection.

Up And Going

Today was Spa Day - Shantell washed Shrav's hair and painted her finger and toenails - she was officially dubbed "The Princess of Fourth of July" on the PICU floor.

Today the goal was to be up and around as much as possible - she was a little tired, so we napped together in the afternoon and right when we woke up, Caleb, Dan & Stacey came by...it was great timing because Shrav's nurse really wanted her to walk, and she had a group of cheerleaders to help her stay motivated!

Here she is walking around - she walked out into the hall, up past the nurse's station and back!  So proud of my baby girl!!

Uncle Dan

All is well with the world when Uncle Dan comes in the room - Shrav's heart rate and breathing calmed down when he came by and her oxygen started to climb.... must be magic....or LOVE!  Shrav is really tired and so when she smiled this smile for Uncle Dan, she really meant it:)

Alli

This is Alli.  She is a Child Life Specialist who has been there for Shrav for her Heart Cath last month, CT Scan a couple of weeks ago and she's been checking on us this week too.  We feel like Alli and others here are family, they make such a huge impact on Shrav's experience and help her through the anxieties and fears she has.

Wednesday Morning

Shrav slept great last night after sitting up for a whole hour in a chair - just getting up and sitting made her oxygen levels jump up even more. This morning she has a slight temperature so they are sending blood/urine samples down to the lab. She looks great and drank chocolate milk earlier this morning, so it's possible she has a UTI.

The Team

Here is the team that performed Shrav's incredible, successful surgery yesterday - Dr. Hockmuth (in white) is her surgeon.  Dr. Merryman (right) is the anesthesiologist and Mr. Phelps (left) is the assisting PA with Dr. Hockmuth for surgery.  Our dream team!

Shrav's cardiologist, Dr. Mooradian (below) is the one who tells us when the time is right to do or not do things - he is the doctor who understands Shrav's heart the best.  We trust him - a lot!

Photos from Shrav

Here are Shrav and Buddy (the elf) right before heading to the Operating Room. Buddy appeared for a surprise visit on Sunday during Shrav's heart party.  Apparently Buddy had stolen a Barbie convertible and was racing to her party and was stopped by Officer Brian Johns.  Shrav talked Officer Johns out of giving Buddy his first speeding ticket.  He was so grateful about it that he insisted on accompanying Shrav to the O.R.

The Child Life Specialists made Shrav's transition to the PICU wonderfully easy, they made sure there were toys waiting for her at the foot of her bed.  Last night they made sure that I met the social worker who arranged for a room to sleep in at the Ronald McDonald Apartment, a very cool oasis for parents who need a rest.  Shrav is flanked by Lisa (left) and Amici (right) who show up every day to see how she's doing and answer questions she has.  Today they brought a cool Barbie with about four choices of outfits, so she will be extremely busy getting her new doll dressed up in a few days!!

Today she started to have some clear foods, so we've had a couple of slushies made with popsicles and Sierra Mist.  Yummm....

This morning I woke up around 4 a.m. and walked out to the car for something - on the way back the moon was hanging very low and was bright orange-yellow.  Very pretty......

Right now we're resting and Shrav is doing great.  Happy Fourth to Everyone!

Little Rock Star

Shrav is sleeping peacefully in the PICU. Her oxygen sats are in the 90's - I ran down to get something to eat, and when I got back she was watching Beauty and the Beast with her PICU nurse Ashley :)  They removed the ventilator at 5:30 pm - earning her Rock Star status on her floor.

 Dad, Sue, Dan, Stacey, Caleb and Nana were here all day waiting for updates...and a sweetheart named Debi Lydic stopped by from Valley Church...we have been surrounded by love and support.

The view from Shrav's PICU window is just right to see fireworks tomorrow night over the state capitol building.during/after Yankee Doodle Pops.

Hope you all have a safe, wonderful fourth of July!!

Happy News

Dr. Mooradian just came by, surgery is technically over! Things went well, the connections they needed to make were less complicated than expected...so very thankful!! Thank you Help-a-Heart for sending lunch to us here in the waiting area - your support is priceless to us. Will post again once she is all settled in the recovery. God is good!

Waiting

We are in the waiting room - Shrav went in around 8:00 and the surgery is in progress now. Dr. Mooradian stopped out to tell us things are going well and the nurse told us the incision was made at 9:04 a.m., so now we wait. Thank you for praying for our family and for the surgeons and for Shrav! Will post more updates soon.

Today

Yesterday we had a wonderful day....met grandparents for breakfast, went to church, and then had a wonderful hot dog party for Shravani.  Lots of people showed up, even Mrs. Jennings, Shrav's Kindergarten teacher last year.  Several other parents and kids from school, and of course family.  It was really crazy, and fun, and it was the perfect day for a water balloon fight with the hot hot hot weather.

Many thanks to Mom, Sheri, Stacey, Wendi and everyone who showed up (and cleaned up, too.)

In a few short hours we will be at the hospital. One mom was explaining to me at the Heart Auction how their surgeries were not planned, and therefore they didn't have time to prepare mentally or otherwise.  That made me realize how fortunate we are to have some degree of control over timing.

Two hours and fifteen minutes until the alarm goes off....going to get some sleep...

Tenderness

The past couple of days I have had a fairly consistent sense of peace.  The Beth  Moore study began talking about God's tenderness toward us.  I don't remember being so strongly impacted by a study as this one, and this particular aspect of God's character.  One illustration was Thomas's inability to believe that Jesus was alive, despite the fact that his fellow disciples had seen Jesus.  Thomas himself had to not only SEE Jesus, but touch his wounds in order to be fully convinced.  The fact that Jesus gently proved himself in the way Thomas asked showed the depth of his love for his disciples, and by extension, us.

One note I wanted to share from this study is Beth's comment about how distorted our thought life/faith can become if we only know God by His Holy character without recognizing His tenderness toward us as children.  Adding this aspect of God's character to our understanding of Him is so important, for our own sake and the sake of those to whom we seek to share His love.

Today we will have a blood draw for pre-surgery tests and possibly an EKG.  Shrav is doing great, and has questions here and there, but says "Mom, it's ok, I have a good attitude about it."  Sweet thing.

A Little Getaway

The "Original" Starbucks :)

Three guesses where we spent the past weekend - does this Starbucks look a teeny bit different from others you visit?  It's the original place where Starbucks began.  Three guys with a vision for the perfect roasted bean.  Mom loves the Willow Blonde that Starbucks recently came out with - a bit lighter compared to the traditional and beloved dark roasts that Starbucks is famous for.  Can you find Nana and Shrav in this picture?  

I have been to Seattle many times for work but have never taken the time to see the City.  We did the Duck Tour (highly recommend it!) - lots of laughs and history of Seattle at the same time.  Being a loud bunch, we didn't mind the yelling, singing and dancing that our fearless captain insisted we participate in :)  It was probably the most fun thing we did, and the Duck actually goes into Lake Union where we got to see the Sleepless in Seattle Houseboat.  A hydroplane was taking off from the water while we listened to Jimmy Buffet (very loud!), the Beach Boys and Village People while doing the sit down motions for Y-M-C-A!  

It was a little chilly on the water, but Shrav and Nana hung in there pretty well.

Love this picture of Shrav and Nana on the Duck Boat

Shrav & Her Nana relaxing in the hotel

We stayed at the Hotel Five downtown.  It was hip and fun, perfect for young and old (and those of us somewhere in between).  This hotel dares to use a little color - and staying there we felt right at home. Very bright and cheery, a staff with extreme customer service skills (knowledge, patience AND a sense of humor - WOW).  We met people from Finland, Russia and Japan during numerous elevator trips...we would definitely stay here again,

On the way back, we stopped in Denver and had several hours so we got to see Aunt Annie and cousin Sam!  We wish so much that we could see them more often.  Shrav wishes she could move to Denver and be a little sister :)

Shrav and Samuel at Bass Pro in Denver

Tilikum Fountain

Shrav and the Space Needle

Dinner at the Space Needle complete with otherworldly smoking/bubbling ice cream

View from a Bouncy House near the Space Needle

Peace

After I finished the "Mercy Triumphs" study book by Beth Moore a couple of months ago, I was without an active Bible Study or accountability and began drifting away from my regular time with God.  Funny how fast that happens, even without a decent excuse.  Life just slowly creeps into every crevice that we allow it to, until we have no peace.....

I was seriously becoming devoid of peace - not that it has been easy to sustain at any given time in life, but always correlates to periods when I have chosen or have been forced to rely on God moment by moment.  As we travel this path toward Shravani's Fontan surgery, I've experienced anxiety levels I didn't know existed.  And we are still almost 3 weeks out.

While cleaning out a box of books, I found an old Beth Moore study that I'd started at least 5-6 years ago and had thrown under the bed, unfinished.  Well, here it was - and as I looked through to find the first empty section, it found me like a slap in the face.  "Agape".  Also known as?  "Love".  Always at odds with our modern definition of love, agape "...always protects, always trusts, always hopes, always perseveres.  Love never fails."  I Cor. 13:7-8.  Nothing like cold water splashed on the face of a lukewarm heart.  I'm surprised that I didn't find a nice drawer to 'store' that study book in.  But here it is on the coffee table where I meet with God almost every morning before Shrav wakes up.  I had to pray that God would help me wake up early to have time with Him - I just wasn't making it happen otherwise.  And He is faithful, and has been doing that.  Some mornings the words "GET UP" literally appear on the chalkboard of my mind.  I obey when that happens especially :).

Back to the subject of peace.  The work book has traveled through Agape, then Joy, and we just started the topic of Peace.  Here is the verse:  "Peace I leave with you; my peace I give you.  I do not give to you as the world gives.  Do not let your hearts be troubled and do not be afraid."  John 14: 27 -   Simple as that.

We took a tour today of the pediatric ICU and Pediatrics unit at the hospital where Shrav will have surgery in a few weeks.  Then, we went for a CT Scan so the surgeon will be able to tell how much, if any, scar tissue remains from earlier surgeries and how it might impact their ability to reach the things they need to get to.  Hopefully he has what he needs.   The recovery room nurse knows the surgeon and worked with him a long time, she says if she ever needed heart surgery or her children did, she would not even consider another surgeon.   We have heard this from multiple people in a very short time, and we have peace about all her doctors and the wonderful jobs that they do every day.

** For privacy reasons we are choosing not share names of doctors/etc or locations of things - this may change once everything is completed but for now it seems right to share that only by email as requested.  Don't hesitate to send a note if you have any questions!

CT Scan Tomorrow

It's almost bedtime.  Shrav will be heading to Mercy tomorrow for a CT Scan.  The surgeon wants to look at her sternum area to see how much scar tissue is there and 'where things are' so that there are no surprises when the chest is opened for surgery.  Neither one of us has had one of these things so it should be interesting, and much faster than other tests once they have the IV in and the dye is injected.

More to come...

Friends of Heart Families

The  founders and coordinators at Help-A-Heart  have created a wonderful non-profit organization to help families whose children face life-threatening congenital heart defects.  Later this month they will hold a silent auction to raise funds that will be used to help families whose children face long hospital stays .

If you would like to donate an item or basket filled with fun things to the silent auction on June 25, contact Emily Graber and Melissa Hooper at helpaheart06@yahoo.com.  Or, you can come to the auction and bid on/buy something!  That will be June 25, 2012, social hour starts at 5:00 pm and dinner is at 6:00.  Tickets are $10/adults and $5/child and may be purchased at the door;  children 3 and under are free.  You will be doing a world of good for these families!

Des Moines Heart Walk is next Saturday, June 16!

If you can make it, the Des Moines Heart Walk will happen next Saturday at the capitol building starting at 9:00 a.m. We'll be out of town and will miss it, but several friends will be walking!!

Heart Walk Info

Description of the Fontan Procedure

Found this really good description of the Fontan Procedure for those who want to know more (see below link) - also, many thanks to Rachel Faul, the creator of this illustration - click here to visit Rachel's site: http://www.instructables.com/id/How-doctors-treat-a-hypoplastic-heart/.

To see the article, click here:  http://www.chd-uk.co.uk/types-of-chd-and-operations/fontan-completion-surgery/.  They don't use a lot of medical jargon so it's easier to imagine the process they are talking about.  Shrav did have the BT Shunt and the Bi-directional Glenn procedures mentioned in this article.

The drawing above is the best representation that I have found for clearly seeing the re-routing of blood that takes place.  After the Fontan is complete, Shravani's heart will only be concerned with pumping oxygenated blood out to her body.  The ' blue' blood that needs oxygen will travel passively to her lungs without the help of a pump.

Things People Have Asked...

It must seem odd to know us and watch Shrav being so active and happy much of the time, and wonder why she needs surgery at this point. What isn't obvious to a lot of people is that Shrav's oxygen levels fluctuate between 70-90% saturation. Typically, a person with oxygen levels at 90 or below becomes fatigued and wants to sleep a lot. The ability to exercise is limited and the large demands for nutrition and energy during growth are not met as easily...in fact, Shrav burns twice the number of calories doing the same activities as other kids - and yet she has very little desire to eat. So, it is hard to keep gaining weight with this energy equation. Low oxygen also impacts brain functions, although I won't try and explain that here. Lots of kids with complex hearts also have behavioral and learning challenges which aren't explained by traditional psychological assessments and diagnoses.

Shravani's oxygen levels are low because of the anatomy of her heart and the way her veins and arteries travel in and out and around her heart, lungs and other organs. Here is a short list of things going on with Shrav's heart:

- Atrial septal defect (ASD)
- Ventricular septal defect (VSD)
- Pulmonary Atresia
- TAPVC (totally anomalous pulmonary venous return) - say THAT 3 times fast

There are a few more things that are listed in her reports from India, but these are the ones that I hear the doctors mention. The cool thing - and I call it a God thing - is that no doctor has ever been able to detect a murmur when they listen to her heart with a stethoscope. It sounds just like a normal heart to them.

Most children who receive this surgery do it when they are less than 3 years old. Shrav's doctors wanted to wait until she was bigger so that her blood vessels are larger and there would be less need for potential surgery to replace things that don't grow along with the body. This surgery will involve using a Gore-tex tube to connect Shrav's inferior vena cava (big vein that returns blood to heart from lower body) to the pulmonary artery (PA). Most of you just said "huh?" or reached for a handful of chocolate chips to drown the confusion - or was that me?! The Gore-tex doesn't grow/expand along with the body, so this is the reason for waiting.  The surgeon did mention another possible method of connecting the big vein to the big artery but that requires more jargon and another handful of chocolate chips.  Will only go there if needed, later :).

Most heart doctors are very conservative and only recommend surgery when it is absolutely necessary. Although Shrav is not in a crisis, if we wait too long to do this, her lungs could lose their capacity for accepting the higher pressures that will follow it and the 'fix' could fail. Right now she is a good candidate because blood flow to the lungs is exactly how it should be in order for the Fontan to work.

Later I will try and talk more about the heart and all the stuff that will be affected, and try to give pictures. Don't feel obligated to read or look at any of it, I am doing it for those who have asked.

Love to everyone!

Shrav Earns Her Next Belt in TKD

Shrav earned her yellow belt in pee-wee Tae kwon do recently - this is her first new belt.  Very exciting!  The teacher, Miss Sarah, took off the old belt, placed it over her shoulders, and then puts the new belt on.  Very cool ceremony.  These kiddos can stand at attention for 5 minutes, without talking, moving, laughing!  Most of us parents had no idea how much self-control our kids are capable of....now that we do know, the whole discipline structure at home has changed.  Kids really do need to have something expected of them, and they will rise to the occasion.

Very proud of my baby girl!

Summer Here We Come!

School is finally out for summer!  

We went to the zoo last night for Dreamnight at the Zoo!  It was a great night! We rode the train, visited the peacock and wallabies in the Australian habitat, saw the new sea lion/seal exhibit which is a  beautiful, concrete donut shaped pool that has been painted white.  It makes you think of the photos of greece that travel agencies hang in their front window.  Beautiful.  

Dreamnight at the Zoo is sponsored by Variety Clubs of Iowa, University of Iowa Hospitals, Mercy Hospital, Blank and several corporate sponsors as well.  Children who have faced life-changing medical challenges are invited to attend. 

Shravani's medical condition is very well hidden behind a very active personality and bright smile most of the time.  Although we've been thinking about it for the past five years, her heart doctors say it is time to finish what was started in India.  There she received two life-saving open-heart surgeries, which increased her oxygen levels and allowed her to grow and thrive.

The three-step process culminates in a final surgery called the Fontan procedure.http://en.wikipedia.org/wiki/Fontan_procedure;  The Fontan process will increase her oxygen levels and decrease the work her heart muscle has to do - and we hope avoid the need for a heart transplant.