Awesome News! Heart Looks Great!

16 months old

This past Thursday, Levi had a much anticipated appointment with his cardiologist.  It'd been three months since his last check-up (the longest we've ever gone).  He's 4.5 months post open heart surgery and 16 months old.

The awesome news is that his aortic stenosis is only mild and everything about his heart really looks great!  


As you may recall, at his last appointment I was pretty bummed to hear that his aortic stenosis was back up to moderate only two months after surgery.  The cardiologist thinks that the variance in readings is most likely due to how sedated Levi was.  In August he was sedated with Versed (medazolam).  This made him groggy, but didn't put him out and he was still fairly active during the exam.  He also didn't come out of it well, and was very agitated, so we decided to try a different drug the next time around.  At Thursday's appointment he was sedated with a dose of chloral hydrate instead, the same sedation used for his echos at Stanford.  This put him fully to sleep.  The echo tech was able to take her time and do a very thorough reading since he wasn't moving at all.

an evening of trick-or-treating

I was nervous when the cardiologist came in.  But she quickly broke into a big smile and said his whole heart looked just great!  In disbelief, I immediately said give me the numbers and the specifics.  There must be something that's not quite right, there's always something.  I wanted so badly to hear only good news, but I also wanted to be prepared for disappointment.  Nope, she said everything looks really, really good!  Honestly!  His aortic stenosis is mild, his aortic insufficiency is very, very mild, his left ventricle is completely normal with no thickening or dilation, and his ascending aorta still looks good too.  His blood pressure was perfect.

I kept asking if she was sure and waited for the other shoe to drop.  It never did.  She assured me that his heart really does look great and there's nothing to worry about right now.  She doesn't want to see him for another six months.  SIX MONTHS!!!  I can hardly fathom not going in till next May.  He'll be nearly two years old by then.  It felt like we lived in that office for Levi's first year.  She even said that if he looks good in six months, then we'll stretch it to a year.  So far the repair is working well and we'll just see where things are at the next appointment.  It's possible it could be years though, before another intervention is needed.

playing with Mommy's hats this morning

This awesome news is just now finally sinking in.  What a roller coaster this journey has been.  I'm just thankful we're finally on an upswing.  Thanks be to God that Levi's heart is actually doing well!!!!  I can hardly believe it!

The doctor said Levi has no physical restrictions of any kind and he's not on any medications.  Oh how I hope this lasts for a long, long time!

Thank you to all who have come beside us and supported us and prayed for us on this crazy journey.  We're just so excited to finally breathe more easily.

I also can't help but think about Levi's amazingly gifted surgeon, Dr. Hanley.  He comes to mind quite often, and I'm incredibly thankful that he's given our son such a hopeful outlook.  To think that Levi still has his own aortic valve and it's actually working pretty darn well is amazing to me.

As Thanksgiving approaches it's overwhelmingly evident how much we have to be thankful for -- our health, our family and friends, and most of all, a God who is merciful, faithful, and loving.  Even when times are tough and the trials of this life seem like they're more than we can handle, He is there to sustain us and bless us.

And right now we're especially thankful for this period of rest from medical exams and the chance to just hug our three little boys and enjoy life together.

my sweet boy!

Three Months Post Surgery - 15 Months Old

It seems like forever ago that Levi had his open heart surgery to repair his aortic valve and aortic aneurysm.  It's been three months -- 13 weeks tomorrow to be exact.  The past three months have been filled with all the busyness that three little boys bring to a household!  Fall is now very much in the air with Noah starting kindergarten, Jacob in preschool two mornings a week, and Levi actually having his mommy all to himself for a few hours! 

I know it's been awhile since my last update on Levi.  With so much time and focus spent on Levi's surgery and recovery, once things started to let up a little, I just found myself wanting a little break from it all too.  For weeks now, I've been meaning to write an update, and for one reason or another just never get around to it.  I think I've also been avoiding it because I don't just have good news to share.  

I do need to rewind to early August though.  On August 4, Levi had his six-week post surgery appointment with his cardiologist.  He had a sedated echo which showed several good things.  His aorta was now a normal size after the repair and his left ventricle was no longer dilated.  He only has trace to minimal aortic valve regurgitation (leakage) now, instead of severe.  These are all great things!

However, it appears that his aortic stenosis (narrowing of the valve), measured by the pressure gradient, is up in the moderate range.  At Stanford, after surgery, is was noted as being mild.  I was shocked to hear that it was now moderate and questioned the doctor about it.  She was pretty confident in the reading though.  Because the stenosis is up in the moderate range, instead of seeing Levi in six months as hoped, the doctor wants to see him again in only three months.  So, Levi's next echo is scheduled for November 3.  I'm eager to see what this exam shows.  It may be wishful thinking or just denial, but I'm hoping that somehow the last echo was off and that his stenosis is really only mild.  

But what if his aortic stenosis is really in the moderate range?  Assuming that's the case, he will be monitored fairly closely again to see if it worsens and to see what effect it's having on the left side of his heart.  Over time, the extra work of pushing blood through a narrow valve can cause left ventricular hypertrophy, or enlargement of the heart.  Levi would once again need an intervention -- either a balloon dilation valvuloplasty to open the valve (this is a catheter procedure which is much less invasive than surgery, but carries the risk of causing more regurgitation...the same procedure Levi had when he was born) or open heart surgery again to repair or replace his aortic valve.  Hmm, sounds too familiar.

So when would an intervention be needed?  We don't know.  With aortic stenosis there are no good predictions for how quickly it will progress.  Everyone is different.  Levi's cardiologist said that she follows several patients with moderate aortic stenosis who have been stable for several years, so that's hopeful.  But really it's a "wait and see" again.

We know that Levi will have more surgeries in his lifetime.  We just really hope that he'll get at least two or three years out of this first surgery.  That may still be the case, but it's disappointing to see his stenosis already up to moderate just six weeks after surgery.  

Just like before, Levi is still asymptomatic.  You'd never know what's going on with his heart by looking at him.  He's definitely a little ball of energy!  He's go, go, go, and into everything!  He knows how to open all the doors in the house and is super fast, so we have to keep a sharp eye on him.  

He's a momma's boy for sure too.  He loves sitting on my lap while he sucks his thumb and holds his "monkey blanket" close to his face.  He's such a sweet boy!  

Levi's getting big and weighs in at almost 24 pounds!  At his one year pediatrician appointment, his doctor said he looked great and is right on track developmentally.  He did have a bout with croup a couple weeks ago, but is healthy again.

It's amazing what a year will do.  I remember last year at this time, I was still trying to find my balance in the world of raising a child with a congenital heart defect.  In the early days after bringing him home from the NICU, I wondered if he would live through the day or week.  (Unfounded worries, but still real to me).  He slept right next to me in a bassinet for several months and I remember checking on him throughout the night to make sure he was still breathing.  Fifteen months later, he's still with us and so full of life.  He has a smile and laugh that melt my heart.  I love watching him change and grow and I thank God for the time that Levi is here with us. 

We're enjoying our time as a family.  Really, I feel like I'm thinking about Levi's heart health a little less these days.  Though I still think about it daily, it's not nearly as consuming as it was before.

As I type this we're all enjoying one of our last warm evenings in the backyard.  The boys are playing with sticks, balls, and rocks.  Oh wait, Jacob's now being dramatic over something and I just wiped up pee spray in the bathroom.  And that's how life with three little boys goes.  I love it.  I really do.

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The Healing Process

I've been taking photos of Levi's chest incision to document the healing process.  For other heart families, I hope it's helpful to see what it looks like at various stages.  It's amazing to see how far he's come.  In time the scar should fade even more.  For me it's a reminder of how strong and courageous our "Levi the Lion" is, as he's lovingly nicknamed by his cousins.

Just before surgery, June 24, 2011

Just after surgery, June 24, 2011

4 days after surgery, the bandage is removed

10 days after surgery

2 weeks after surgery

2 weeks after surgery

4 weeks after surgery

4.5 weeks after surgery

4.5 weeks after surgery

4.5 weeks after surgery

4.5 weeks after surgery

9 weeks after surgery

9 weeks after surgery

10 weeks after surgery

12.5 weeks after surgery

12.5 weeks after surgery

12.5 weeks after surgery

X-Ray Results

I heard back from the cardiologist's office yesterday afternoon regarding Levi's x-ray results.  The chest x-ray showed that he has "mild pulmonary vascular congestion", which means that the blood vessels in the lungs are mildly enlarged.  The nurse said this is to be expected after open heart surgery and at this point in Levi's recovery.  She said he's still moving in the right direction and not to worry unless I notice any major changes in his demeanor (breathing rapidly, not eating, unusually fussy).

At his next appointment he'll have a limited echo, and then at the appointment following that he'll have a complete echo and another x-ray.

Yesterday and today all of the glue and scabs on his incision fell off!  I think it looks pretty good considering he's just two weeks out.

So all is well.  We hope and pray the rest of his recovery will go just as smoothly as it has thus far.

Cardiologist Appointment - Two Weeks Post-Op

It's been two weeks since Levi had his open heart surgery.  He's doing great and yesterday had his first follow-up cardiology appointment since returning home.  It looks like his incision is healing well.  He also had a chest x-ray taken and I'm waiting to hear detailed results this afternoon.  Preliminary results show that his chest isn't totally clear of fluids, which I was hoping it would be.  Though from what I understand, his results aren't abnormal for this point in time post-surgery.  I'll know more later today, but I don't think it's anything to worry about.

No echo at the appointment, just an EKG and check of his vitals.  The doctor is very pleased with his progress so far.  She said his heart sounds much different than before, in a good way.  I certainly hope so!

Levi will go in for another cardiology check-up and limited echo on July 19.  Then again for his six week post-op appointment in early August which will include a complete echo.  If everything looks good at that appointment, he won't be seen for another six months!  Wouldn't that be nice!

Levi has been practicing his walking a lot more the past few days.  I think it may become his preferred mode of transportation very soon!

We're loving being home as a family and are definitely loving this summertime weather.  We're expecting James' mom and cousin to come into town today for a visit.  Should be fun!

Fourth of July

enjoying Grandma Valerie time

A week and a half post surgery. He gets the one chest tube stitch out tomorrow.  The outer skin layer of the chest incision was glued together.  The glue and scab will flake off over the next couple weeks.

Happy 4th of July

4th of July boys

What a difference a year makes!

making friends with a bearded-dragon

festivities at Drake Park

Post-Op Day 5 (Discharged!) & HOME

This is our third day back home and I think we're finally starting to feel semi-normal again.  I can hardly believe that it's only been a week since Levi's surgery.  And what a crazy, tiring, emotional, and miraculous week it was.

Dr. Frank Hanley is a phenomenal surgeon.  We would go back to him in a heartbeat.  He has given Levi what we hope is many more years before needing another heart surgery.  The surgery went so much better than we ever expected.  Levi's recovery at Lucile Packard Children's Hospital was nearly flawless.  What an amazing hospital.  Everyone we met was kind and helpful, the nurses were excellent, and the facility and it's surroundings were beautiful.  I'm so glad we ended up down there.  I can't imagine having gone elsewhere.

Aunt Jani helping us prepare for discharge

I'm going to rewind a few days and go back to how our hospital stay ended.  The morning of post-op day 5, we received Levi's chest x-ray and echo results.  The x-ray showed his lungs were clear and the echo results remained unchanged from the one done right after surgery.  He now has trace to mild leakage and mild stenosis.  Levi's heart rate, which had been running high the day before, was now lower and closer to where it should be.  So Levi was good to go and the doctors wanted him discharged by 10 am!  It's hard to believe open heart surgery was on a Friday and we were out by Wednesday morning.  Totally amazing.

Leaving LPCH with our sweet baby boy

Once we received the final discharge orders, we tried to find a direct flight home.  But with the holiday weekend, there weren't any flights available for several more days.  So we rented a car and made the 9.5 hour drive instead.  We packed up, checked out of the Ronald McDonald House, and hit the road by early afternoon.  We made one stop for dinner at In-N-Out (yum!!!!) and arrived home at about 11 pm.  It was a long drive, but we were so glad to be home.  Totally, totally exhausted, but so happy to sleep in our own beds.  Levi didn't sleep well in the hospital but once he was in his own crib, he slept like a champ, right through the night.  He's almost totally back to his normal sleeping schedule, which is awesome.

At Ronald McDonald House just before we left.

Noah and Jacob were excited to see us the next morning.  Boy how we had missed them too!  I was still super tired and felt like I was walking around in a fog that day and the next.  We've been going to bed early to try to get caught up on sleep.  Today I feel much more normal.

Levi's doing great.  He's crawling and cruising all over, taking some more steps, and generally back to his normal routine.  I've noticed he tires a little more easily and is a little more cautious in his movements, which I'm glad about.  I don't want him to be in pain from over-exerting himself.  It will take about six weeks for his sternum to heal.  We're also supposed to keep Levi away from crowds for about two weeks to avoid illnesses.  As far as medications, he's on Tylenol as needed for pain.  That's it for pain meds, which is amazing to me.  He's also taking Lasix twice daily for a few weeks to help with fluid retention following surgery.

so glad to be back together

Levi has a follow up appointment with his cardiologist here in town on Thursday and then another one at the six week mark for a complete echo.  Other than that, we're just trying to take it easy, catch up on rest, and get back into the swing of things.  My mom is in town till tomorrow morning and it's been wonderful having her here.  Jacob and Noah had SO much fun with her while we were away and it's been so helpful for us to still have her with us as we adjust to home life again.  I'm keeping a closer eye on Levi and he wants to be held a little more than before, so it's not as easy to get things done around here.  I'm thankful for the holiday weekend too, which means James is here till Tuesday.

hardly even pausing after open heart surgery

always on the go

you'd never know what happened a week ago unless you lifted up his shirt

I can't tell you just how relieved I am to have this behind us.  We've spent the past year adjusting to Levi's heart defect, researching it, going to numerous appointments, finding a surgeon, and then just waiting and waiting to find out when surgery would be necessary.  Now we're all breathing a little easier and it feels like such a huge weight has been lifted off of us.  Levi will still see his cardiologist on a regular basis, but the time between visits should lengthen, and hopefully another surgery is way, way off in the distance.  I'm looking forward to a break.

Again we want to thank all of our friends and family, and even those we didn't know, for praying for us, supporting us, and helping us in both Bend and Palo Alto.  That was huge.  We couldn't have done it alone.  Thank you for lightening our load.

We give God the praise and glory for Levi's successful surgery.  So many things worked together just perfectly.  Even in the weeks proceeding the surgery, little things that I was frustrated by had a greater purpose that I couldn't see at the time.  God's plan is so much bigger and better than any of us can see at any one point in time.  That gives us hope in the midst of all of the difficulties we've experienced.  For now, being on this side of Levi's heart surgery, we are finally able to sit back and soak in the goodness of it all.  It's time to relax and breathe.

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A few extra pictures...

It was a very long drive home, but the views that evening were amazing.  This was the start of being able to relax:

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Yesterday, while I stayed home with Levi, James and my mom took the older boys to Petersen Rock Garden just outside of Bend.  The boys loved looking at the rock creations, peacocks, and other animals roaming the property.  A fun outing for a warm summer day.

And a video from today.  My mom taught Jacob this little song...