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...