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.