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...