Surgery and Firsts

Levi is 11 1/2 months old.  It's hard to believe he'll be turning one on June 18.  It's flown by so quickly.

To be honest, my heart is heavy today and I have a headache.  Levi had his cardiology appointment today and it's definitely time for surgery.  His left ventricle is much more dilated, so he needs to get his aortic valve repaired or replaced before things get worse.  We're scheduled for June 24 at Lucile Packard Children's Hospital at Stanford.  His pre-op appointment will be June 23 and we'll arrive a day before that.  That's only three weeks away.  The hospital stay should be around 7-10 days if all goes well.  Then full recovery at home will take about 6 weeks.  My mom will stay here with our other boys while we're away.  I knew this day was coming, but it's still hard.  I know tomorrow I'll be in a better frame of mind.  It just needs to sink in a bit more.

Between now and June 24 Levi needs to stay really healthy.  If he should get sick as surgery approaches, it will be postponed...a major headache.  It seems like we've had rotating colds at our house over the past several months though.  This should be interesting trying to keep a 1, 3, and 4 year old nice and healthy!  So as much as we'd love to see our friends and their kids, please don't be offended if we hibernate a little more as the date approaches.

Okay, moving on from this depressing topic, May was a really nice month for our family.  We enjoyed our time together and celebrated many firsts and special occasions.

First Steps
Levi took a few steps all be himself last night!  I don't know if he's quite ready to give up crawling, but I think he's on his way to making the switch.

First Haircut
Last weekend, Levi got his first haircut.  He's looking like such a big boy now.

before

during

after

First Fish
Noah went fishing with his daddy for the first time and caught his first fish -- a rainbow trout!  We barbecued it that night and the few bites it gave us were delicious.

getting help from a volunteer

First Podium Win
This is James' second year of cross country mountain bike racing in Oregon.  Last weekend was his first podium finish!  He got 2nd place in his category in the Sisters Stampede!!!  It was the first race that our whole family was able to attend and it was an awesome day.

First Trip to the Barber
Noah's had many haircuts, but never by a barber.  He went to the same barber shop that James goes to and he looked like such a big boy in that chair.  We love his new cut.

Birthday Celebrations
Jacob turned 3-years-old and James turned 34 just one day earlier.  We sure ate a lot of cake that week!

So here we are at a crossroads.  Summer is starting, Levi is going for surgery, and we're all growing up a bit more in so many ways.

We appreciate all of your prayers and support during this time.

Love,
Erika

Cardiologist Appointment - 10 1/2 months old

Yesterday was Levi's cardiology appointment.  The doctor wanted to make sure Levi's heart function wasn't decreasing so rapidly that we'd have to move up surgery from the June 24 date.  It turns out things have swung in the opposite direction, sort of.

The doctor has been keeping a close eye on how dilated Levi's left ventricle is.  The z-score for his dilated left ventricle is how doctors decide when Levi needs surgery.  (A z-score is used to determine how a patient's heart measures in relation to a population mean).   Three weeks ago it had increased significantly (a bad thing) and we scheduled surgery.  Yesterday's echo images showed that the left ventricle dilation is still increasing in measurement, but the z-score actually decreased, and got better.  How could this be?  The doctor thinks his height measurement was a little off last time, which affected his z-score.  So today, they double checked his height and weight to make sure his scores were accurate, and yes indeed, it's a better z-score this time.  The echo also showed that Levi still has severe aortic valve regurgitation and his ascending aorta is even more dilated.  So, his heart still isn't doing well, but it's not quite as bad as they thought it was a few weeks ago.

So what does this all mean?  We are now in a wait and see mode again...kind of.  The cardiologist wants us to keep the surgery date of June 24, but she also wants to see Levi again on June 2.  With his current left ventricle z-score it's possible the surgeon may want to wait just a little longer for surgery.  So here we go again!  We'll wait till June 2 and see what all of the numbers are at that point.

I know this should only be taken as good news, and, really, I am thrilled that Levi is not so much worse that we have to move surgery up, but the planning part of me has a hard time not knowing if June 24 will be the date or not.  I've been preparing myself for the surgery and trying to plan for all the details.  Hmmm, maybe a reminder that I'm not in charge?  I think I just need some time to adjust to yesterday's news and then hopefully I'll be able to patiently wait till his June 2 appointment and enjoy each day in the meantime.

Cast all your anxiety on him because He cares for you. (1 Peter 5:7)


Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. (Phil 4: 6-7)


I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through Him who gives me strength. (Phil 4:12-13)

10 1/2 Months Old

After trying to sort through my thoughts and feelings about yesterday's appointment, Levi surprised me that afternoon.  He got right behind the boys' push car, stood up, and started walking all over the place!  As comfortable and confident as could be.  My heart was so happy!  It was so much fun to watch!

Levi now weighs 20 lbs 4 oz and is 28 1/4 inches tall.  He's getting so big!

Play time!

Loving the sunny days

Levi is our little thumb sucker.

Surgery Date - June 24th

Levi is scheduled for open heart surgery with Dr. Hanley at Lucile Packard Children's Hospital at Stanford on Friday, June 24.  The day before, June 23, his pre-op appointments begin at 6:45 am (sedated echo, EKG, labs, x-ray, meeting "the team", etc).  We hope to stay at the Ronald McDonald House next to the hospital, assuming there's room when we arrive.  My mom will fly here to stay with the older boys while we're away. With travel time, we may be gone around two weeks, assuming all goes as planned.

On Tuesday, May 3, Levi will have another sedated echo here in Bend.  The cardiologist wants to closely monitor Levi's heart.  If the echo shows that his heart is rapidly enlarging or if something else looks off, then surgery will be moved up.  I'm thankful that she's being extra cautious.

Earlier this week I spoke with a mother whose children, all with heart defects, have gone through ten heart surgeries.  Many of them were with the same surgeon and at the same hospital.  It was so reassuring to talk with someone who's walked down this path so many times before.  To hear helpful hints and the what-to-expects has really put me so much more at ease.  Just when I needed it the most, her unexpected phone call came.  What a gift!

Levi turned 10 months old on Monday!  And oh has he entered the head bonking stage.  He loves to pull up to a stand and then cruise the furniture.  Unfortunately, along with this really cool new set of skills comes lots of bonks, bruises, and even a little blood.  As careful as we've been, he's still managed to give his poor face a pounding recently as evidenced by the cut on his nose from the bookcase, and the bruises from the dining room stool and kiddie table.  Poor little guy!

We are so appreciative of all of the support we've received and the many prayers spoken on Levi and our family's behalf.  Thank you!!!


Looking for a ride:
 - Most likely, we'll arrive at San Francisco International Airport (SFO) on Wednesday, June 22.  We're looking for a ride from SFO to Palo Alto, CA (Ronald McDonald House, Stanford area).  We'll also need a ride back to the airport once Levi is discharged, around the first week in July.  

Ten Months Old

Notice the scab I'm sporting on my nose?  This learning how to get around thing is tough.

BONK, again!  Mommy, stop taking pictures and hug me! (Yes, I came right over after snapping this)

TRIGGER POINT: SCHEDULING SURGERY

Levi will be 10 months old on Monday.  I just returned home from Levi's cardiologist appointment.  James is usually at Levi's appointments too, but today he is on a business trip and returns late tonight.

It's time for surgery.  The echo today showed that because of his severe aortic valve leakage, his left ventricle has dilated to a z-score of 3.  Four weeks ago it had a z-score of 2.  That's a significant increase and the main trigger we've been waiting for.

It's been a hard waiting game, knowing that surgery is imminent, but not knowing when.  Going from appointment to appointment, wondering if this is the appointment.  As much as we really, really hoped Levi would be older and bigger before he needed surgery, in all honesty, there's a little part of me that's relieved to have the waiting somewhat over.  But, I'm so sad for Levi.  That he has to go through this surgery, a slew of appointments and tests, plus he'll have to go through these things for the rest of his life. Because there is no cure for aortic valve disease, this is only the beginning.

After receiving all the opinions from the various centers, we've decided to put Levi in the hands of Dr. Frank Hanley at Lucile Packard's Children's Hospital at Stanford.  We spoke with him for the second time by phone just yesterday morning.  He's known as an outstanding surgeon and one that we're very comfortable with.  He has graciously answered our many, many questions and we feel like we can trust him with our baby boy.

As far as what he'll do during surgery, it's still not 100% determined yet.  He'll repair Levi's ascending aortic aneurysm for sure.  Then after beginning surgery and getting a good look at Levi's aortic valve, he'll determine if a durable repair is possible or if a Ross is needed instead.

So from here, our cardiologist will contact the surgeon's office with Levi's latest results and start the ball rolling for scheduling surgery.  She asked me this morning what would be ideal timing for us.  In a perfect world (which this is not!) it'd be after my mom gets out of school (she's a teacher) in mid-June.  Then she could fly up to Bend to watch the older boys while we fly down to Palo Alto, CA for Levi's surgery.  Recovery time, if all goes well, is 7-10 days, plus travel time.  I'd also love it if Levi could make it to his 1st birthday on June 18, without surgery.  It certainly may need to be sooner than that, and we'll do whatever is best for Levi.

We'll see what the surgeon has to say about timing once he sees today's results.  In the meantime, Levi is scheduled for another echo in three weeks on May 3, assuming that surgery is not scheduled before then.

I feel like I say this a lot, but it's hard to imagine sometimes that Levi even has a heart defect.  He is developmentally right on track, active, alert, adorable and happy as can be.  He's crawling everywhere and pulling up and cruising on everything, exploring anything within his reach.  He's babbling and eating table food.  This is such a fun age!  How can something be so wrong inside his little body?

We pray that these seemingly overwhelming challenges facing Levi will only make him stronger as a person. That his life story will be used to impact the people around him and glorify God.  As we approach the year mark of Levi's life, I know James and I are not who we were a year ago.  Our lives took an unexpected turn.  Though we wouldn't have chosen this path for Levi, it has shown us that God is in control and goes before us each day. Our priorities have been rearranged and are more clear now than they were before.

I've been listening to a new song on the radio lately, entitled "Blessings," by Laura Story.  These words about life's struggles have been an encouragement to me.

What if Your blessings come through raindrops 

What if Your healing comes through tears 

And what if a thousand sleepless nights  

Are what it takes to know You’re near

What if my greatest disappointments 

Or the aching of this life 

Is the revealing of a greater thirst this world can’t satisfy 

And what if trials of this life 

The rain, the storms, the hardest nights 

Are Your mercies in disguise

For now it's one day and one step at a time.  We trust God with the tomorrows.  He knows what's ahead and just what we need.  He is walking this journey with us and already knows the story of Levi's heart.

A FEW MORE PICS

I brought a couple cameras on the trip to CA and realized I hadn't downloaded a few pictures from my point-and-shoot.  We drove right by Mt. Shasta as the sun was setting and it was a spectacular sight.

Yesterday at preschool, Noah received a citizenship award for demonstrating faithfulness.  He was so excited about it, and so was I.  We celebrated by going on a mommy & son dinner date to Red Robin, his favorite place.  He's 4 1/2 but seems to be growing up so quickly.  He's such a sweet and thoughtful little boy and I can hardly believe he'll be in kindergarten this coming Fall.

ALL THREE OPINIONS ARE IN

It's taken me longer than I would have hoped to get an update up.  Over the last two weeks we've received a lot of information and we're still in the process of sorting it all out.  The long and short of it is that we've finally heard back from Boston, Stanford, and LA.  For so long we'd just been wanting to get opinions from these major centers so that we know what the next step is for Levi.  Now that we have them, we wish they all had the same opinion!  That being said, we are getting closer to figuring out the what and when of Levi's heart surgery.

Here's a summary of the opinions, in the order in which they were received.

Boston:  (we spoke with our cardiologist who spoke with doctors in Boston)
Even though Levi's recent CT showed no dissection of the aorta, they are still very concerned about the significant dilation of his aorta.  They feel that surgery for his dilated aorta should be performed soon, whether or not intervention for his valve is imminent.  Then, in addition to fixing his ascending aorta, they would also try to repair his aortic valve.

Stanford: (we spoke with Dr. Hanley by phone)
He believes that Levi's dilated aorta is not of major concern in and of itself, and just needs to be watched for now.  The consensus of his group is that Levi does not require any intervention at this time.  At some point he will need surgery, but this will be based on either the progression of his leakage, and/or increasing left ventricular dimensions (dilation of the left ventricle).  When the time comes for Levi's surgical intervention, his preference is to perform an aortic valve repair.  If a repair is not possible or successful, then a Ross procedure would be performed.  This decision would be made at the time of the surgery.  He wants Levi followed closely for now.

LA: (we met with Dr. Starnes last week)
After looking at Levi's echos, he believes Levi needs a Ross procedure.  Based on how malformed Levi's valve is, he doesn't believe a repair is a viable option.  Even though Levi's left ventricle is functioning fairly well at this time, because the aortic valve leakage is severe, he believes it's better to do a Ross before the heart function worsens and there is irreversible damage.  He'd fix the dilated ascending aorta at the same time.  He recommends surgery in the next few months, between now and July.

Now that all the opinions are in, we'd like to talk to Levi's cardiologist again.  Right before we went to LA, after hearing from Stanford, she said she'd recommend Stanford.  She also said she'd be comfortable if we chose either of the other centers too.  We also felt really good about Stanford after speaking with the surgeon there.  Then we went to LA, and now we aren't sure and have more questions.

So, tomorrow I plan on speaking with Dr. Tajchman about what we learned/heard in LA.  Then James and I would like to set up another phone consultation this week with Dr. Hanley at Stanford.  After that, we hope to have a more clear picture of what the best course of action and timing is for Levi's surgery.

On April 14, Levi has another echo scheduled at his cardiologist's office.  We'll see how his heart is dealing with the severe leakage and we'll go from there.

We pray for clarity and wisdom in this sea of information that keeps on flowing our way.


[For those of you who may want more specifics from Levi's last appointment:]

• aortic insufficiency is in the severe range
• mean aortic valve gradient is 30mmHG (moderate aortic stenosis)
• left ventricle remains mildly hypertrophied subjectively
• ascending aorta is 2.2 cm (z-score of 6) 
• otherwise asymptomatic
• blood pressure 90mmHG systolic
• weight 8.45 kg, height 69 cm as of 3/15/11 (steadily in the 20th percentile)

CALIFORNIA

Our road trip to southern California went really well.  It took about 17 hours to drive each way and the kids did surprisingly well.  We had a jam-packed schedule and very little rest, but it was a wonderful trip filled with family, friends, the beach, Disneyland, and a business trip for James.  We didn't get to see everyone we had hoped to, so that was the biggest bummer.  We could have used another week down there!  That being said, there's no place like home.  We are finding rest and relaxation as we get back into the swing of things here in Oregon.

boys with great-uncle Craig and great-aunt Wendy

A day on Coronado Island with cousins - so much fun!

Levi's first visit to the beach

Uncle Steve and Aunt Lisa love on Levi

Noah LOVED the water!

I love this picture of all the cousins

 I think the kids called this a "cousin sandwich"

We had such a fun time!  The kids were so good too.

Noah went on Big Thunder and loved it

the end of the day

bath time after a sticky hot day at Disneyland

playing piano with Aunt Annie

the boys with Grandma Valerie

the last evening of the trip...enjoying the warm weather and green grass