CONSULTATION - CALIFORNIA HERE WE COME!

A few days ago I received a phone call from Levi's cardiologist.  She had contacted Children's Hospital Los Angeles, Stanford, and Boston to inquire about obtaining opinions on treatment for Levi.  Levi's records are being sent to each of those hospitals for review.

Here's where we stand with each hospital:

1.  I just got in touch with CHLA and on March 31 we have a consultation with pediatric cardiothoracic surgeon Dr. Vaughn Starnes.  We'll bring Levi in to be examined, but don't expect them to run any tests at this point.  Dr. Starnes will have looked at Levi's most recent echos, EKGs, and reports.  We look forward to hearing what he thinks about Levi's case.

2.  Dr. Frank Hanley at Stanford Children's said that after he reviews Levi's echos and records he'd be happy to give us a call and let us know what he thinks.

3.  Boston Children's will also review Levi's echos and records and will get back to us with an opinion.  When Levi's cardiologist called Boston, they said that in children born with aortic stenosis who have had a balloon dilation procedure and now have regurgitation, they prefer to do valve repairs using pericardial patches if at all possible.  At five years post-surgery, the freedom from re-operation is 70%.  That falls to 50% after five years.  It's all very valve specific, so we'll see if they think Levi's a candidate.  Levi's cardiologist said that a valve repair doesn't really address the two other issues Levi has besides his diseased valve -- a dilated aorta, and the intimal flap in the aorta that's been there since the original balloon procedure.

So at this point, we wait for two of the opinions and make plans for the LA consultation on March 31.  We also still have Levi's regular cardiologist appointment on March 15.

We're looking forward to a California visit.  This is the first time we've ever driven down with all the kids.  It will be a ton of driving, but we're looking forward to making it a family vacation of sorts.  We plan on being gone a total of nine days and will spend time in Coronado, OC, LA, and if we can somehow squeeze it in, Santa Barbara.  There's also talk of James and Noah sneaking in a Disneyland trip too.  James also has two days of business meetings in LA while we're there, so he'll be staying in downtown LA for a couple nights.  Hmm, I'm not so sure how we're going to fit everything in yet.  There are so many people we want to see and things we want to do!

Levi's been on the move for a week or two now.  He gets around by pivoting, rolling, and rocking.  Until today.  He started crawling.  Just a couple strides forward, but traditional crawling nonetheless. Time to baby proof again.  He's such a cutie though and we just love him so much!

A package in yesterday's mail made my whole week.  My Aunt Jani made Levi the sweetest, softest, most cuddly quilt ever.  It's so incredibly awesome and meaningful.  I know it will be a special comfort for Levi for years to come.  She even sewed in a pocket from my Grandpa Harry's pajama shirt.  He passed away last year, so you can imagine how much this means to me and how much it will mean to Levi as he gets older.

Tomorrow is our ten year anniversary.  Ten years!!!  I can hardly believe it.  What an amazing journey this has been.  I'm incredibly blessed to have James as my husband and partner in life.  He is the best of the best.  He is my rock, so loving, so solid, so steady, so gentle.  I also love, love, love that my three boys have such an amazing dad and role model to look up to.

 Cheers!

February 24, 2001

10 years later

Grandpa Harry

CARDIOLOGIST APPOINTMENT - SOME CHANGES - ALMOST EIGHT MONTHS OLD

On Friday, Levi turns eight months old!

After waking up to a foot of new snow this morning, Levi and I made a slippery trip across town to see his cardiologist for a routine check-up.  He had his vitals checked, an EKG, and an echo.  Dr. Tajchman reviewed the findings and gave me the latest update on how Levi's heart is doing.  The good news is that the aortic stenosis has not progressed since he was last seen in December.  The pressure gradient is about the same.

The bad news is that the aortic valve regurgitation (leakage) is getting worse.  It's now moderate-severe.  In December it was moderate.  Because Levi's valve cannot fully close, the backflow of blood with each heartbeat stretches out the left ventricle, causing it to dilate over time.  Dr. Tajchman said Levi has mild dilation at this time, but it is a little more than his last appointment.  Since his stenosis seems to be holding steady, it appears that it's this dilation that's going to cause Levi to need heart surgery.  We've never known exactly when he'd need surgery, but if this leakage and dilation continue to increase, it might be sooner rather than later.


Dr. Tajchman wants to see Levi again in one month for another echo.  March 15.  Lately we've been on a two to three month schedule, so the fact that she wants to see him again in only four weeks makes me nervous.  If the dilation continues to increase, she'll refer Levi for surgery.

Now the question of where to go for surgery is becoming a big one.  In talking to Levi's cardiologist today, we're now mainly looking at Dr. Vaughn Starnes at Children's Hospital Los Angeles and Dr. Frank Hanley at Lucile Packard Children's Hospital at Stanford.  This would be for the Ross Procedure (taking out his bad aortic valve and replacing it with his own pulmonary valve.  Then a replacement valve for the pulmonary valve would be inserted).  You may remember in a previous post I talked about a surgeon in Portland who recommended trying a new type of aortic valve repair on Levi.  I finally spoke with Levi's cardiologist about it and she didn't really think he'd be a good candidate for it for a variety of reasons.  This is more or less what James and I had recently concluded as well.

So, now what?  Dr. Tajchman will contact the two surgeons and see what they think about Levi's case.  She recommends that we try to meet with both surgeons, so we may be making a trip to California in the near future.  I've also asked her to see if she can find out any information from Boston Children's, so that we have yet another opinion (they have a new valve repair center and I'd like to hear what they have to say).

I need to start making phone calls to the possible hospitals as well.  It looks like both California hospitals are on our insurance provider list, which is wonderful.  But I need to double check all the details to see exactly what's covered.

So needless to say, today was a bit exhausting mentally.  Levi still appears to be doing well and is asymptomatic.  This is good, but it also makes it hard to believe he really will need major open heart surgery.  We're trying to not be anxious about it all, but to be still, knowing that God will walk with us through it all.  He will work all these things for His greater good.  We'd really appreciate your prayers during this time of waiting.


On a more positive note, we had a wonderful time visiting with my brother, Steve, and nephew, Luke, this past week.  They flew up from California and spent five days with us.  The boys LOVED playing with their cousin and uncle.  We played at the park, rode bikes and scooters, went tubing, Luke and Noah had a "sleepover", we visited the High Desert Museum, celebrated Valentine's Day, and hung out and played some more.  It was a sweet time together.  They also met Levi for the first time.  We really treasure the times we get to spend with family.

I'm kind of hoping tomorrow is a "snow day" again.  I just feel  like sitting around the house in my PJs and relaxing (that is, as much as I can with these three boys!).

Congenital Heart Defects Awareness Week: February 7 - 14, 2011

Did anyone see the cute Super Bowl Volkswagen ad with the little boy behind the Darth Vader mask?  Six-year-old Max Page suffers from a serious congenital heart defect (CHD) known as Tetralogy of Fallot.  He had his first surgery at three months old and then had a pacemaker implanted soon after.


In just the past month, two friends of mine have had their precious little babies diagnosed with congenital heart defects.  


Just yesterday James and I read yet another article in the newspaper about an Oregon student athlete who died suddenly during a wrestling match due to an undiagnosed congenital heart defect.  


Today begins CHD Awareness Week, an annual awareness effort to help educate the public about congenital heart defects.  


I want to take a moment to share some important facts:

• Congenital heart defects are the #1 birth defect and the #1 cause of birth defect related deaths.

• At least 9 out of every 1,000 infants born each year have a congenital heart defect. That’s almost 1 out of every 100 infants. 

• Sometimes the defect is so mild that there are no outward symptoms. In other cases, it’s so severe that the newborn becomes ill soon after birth. In still other cases, signs and symptoms occur only in later childhood or early adulthood.

• In the United States, about 36,000 children are born with a heart defect each year. Most of these children can be helped by surgery even if the defect is severe.  

• 1.3 million Americans alive today have some form of congenital heart defect.  About one-half of those are under age 25. 

         (American Heart Association 2010)

• Despite the fact that CHDs affect so many families in the US, a relatively small amount of funding is currently available for patient educational services, research, and support.

It never occurred to James and me that our baby could be born with a heart defect.  But we were that 1%.  I had never heard of the term CHD before.  Now I know it all too well.  Thankfully Levi's critical aortic stenosis was found on day two of life and he could receive the emergency care he needed to live.  I'm beyond thankful that doctors did the extra testing on him to figure out what was causing his murmur, instead of being sent home thinking it was just an innocent murmur that was "nothing to worry about."  

We hope that greater public awareness will result in improved early diagnosis, more support and resources for CHD families, and additional funding for scientific research resulting in new and improved treatment options.

  

Levi's first ride in the backpack

SEVEN MONTHS OLD & ONE SURGEON'S POINT OF VIEW

I've been meaning to update the blog for quite a while now.  Somehow the days keep speeding by!


Levi Overall
Levi's still doing great.  There are no outward signs that his heart is bothering him.  On Jan 18, he turned 7 months old!  He weighs over 17 pounds and is more and more interactive and playful each week.  His favorite activities include sitting up playing with toys, rocking back and forth on his knees, smiling at his crazy brothers, bouncing in his jumper, being held on my hip, and splashing in the bathtub.   He loves eating oatmeal baby cereal, yogurt, and a range of fruits and veggies.  He takes two two-hour naps each day and sleeps about 11.5 hours at night, with one feeding somewhere in the predawn hours.  He's a happy little guy!

seven months old

He's been to the pediatrician three times in the last month or so.  Once for his six-month check-up, once for his Synagis shot (RSV prevention), and once for cold symptoms.  He goes again tomorrow for a flu shot and then next week for another Synagis shot.  We're really hoping to keep him as healthy as possible this winter since a respiratory illness could become serious for him.  Then he sees the cardiologist on February 15.  Lots of visits, but so far they have all gone very well.  Levi is right on track developmentally and appears happy and healthy.  The cardiologist appointments are always the telling ones though, so we eagerly await the inside scoop on his heart.


Family News
James is on a business trip to Mexico right now.  It's his second 4-day trip this month, which is more traveling than he's done in awhile.  When he's gone it's a bit more challenging in the mornings and evenings.  He's so good about getting breakfast for the older boys and then putting them to sleep at night.  Needless to say, it's been a bit busier for me this week!  


The weather has warmed up recently.  The snow is gone and it's been in the low 50s, which is "warm".  It's been fun to get outside!  Noah and Jacob have really gotten into riding scooters and bikes.  This evening they were outside playing with the neighborhood kids and had a great time zooming up and down the sidewalk.  Levi watched from the Baby Bjorn and a very sweet 4th grade girl from across the street hung out with us.  Then we ordered our favorite pizza and brownies from Pizza Mondo.  Daddy's away, so I don't feel too guilty about that!



Meeting with a Surgeon
First I want to clarify that Levi is stable as of now and does not need an intervention yet.  But he will need open heart surgery at some point.  Last month I mentioned that we were meeting with Dr. Langley, a cardiothoracic surgeon from OHSU who happened to be in Bend for a few days.  This is the first opinion we've received from a surgeon regarding Levi's condition and need for future surgery. 


Interestingly, he recommended trying to repair Levi's leaky and stenotic aortic valve using a fairly new FDA approved material called Cormatrix.  In overly simplified terms, this bio-scaffold material allows surrounding cells to grow onto it, regenerating the same type of tissue and doing it without scar tissue forming or any type of rejection.  Aortic valve repair is very complicated and it's possible that the repair would not work and the surgeon would have to move on to a "Plan B."  If the repair did work, it still wouldn't be a life-long fix, but it may buy some more time and give Levi more options in the future, especially since this is a field that is seeing lots of advancement.  There may be less invasive ways to replace valves in the future.


If you're interested in reading more about Cormatrix, check out this site and also this Q and A.


Dr. Langley said that in his opinion, there are basically three options for Levi at this point:
1.  Attempt a valve repair
2.  Replace the aortic valve with a homograft (preserved donor valve)
3.  Ross Procedure (this is the most common intervention for his condition and age and the one we've previously been told he'd need.  Levi's diseased aortic valve is taken out and replaced with his own healthy pulmonary valve that should grow with him and function normally.  A pulmonary homograft valve (from a donor) then replaces Levi's pulmonary valve and will need to be replaced periodically as it won't grow and will wear out eventually).


Other points of interest from our conversation:

- on average a child like Levi could need 5-6 open heart surgeries over his lifetime

- after looking at the echos, he didn't think Levi would need surgery in the next six months!

- he wouldn't speculate after that

- he thinks Levi will end up needing surgery due to the valve insufficiency (leakage).  It's moderate right now, but if it gets worse it could cause the left ventricle to enlarge, become thickened, and not work well. 

- once a series of echos shows his heart getting worse, then we'll schedule surgery.

- most likely the surgery would be planned months in  advance, not days or weeks (phew!).

It was certainly a very informative meeting and we walked out with our minds spinning with new information.  We're really looking forward to hearing what Levi's cardiologist has to say at next month's appointment.  She had previously said Levi would most likely be looking at a Ross procedure, and that may very well still be the case.  We're eager to hear what she thinks about this new repair procedure.  We'd also love to hear what other top pediatric heart centers and surgeons think about Levi's heart.  

I'm thankful that we are not yet pressed for time in making a decision.  We want to be as informed and as ready as possible when the time comes.  

For now, we're enjoying the day to day excitement of three busy little boys!

Brothers!  Levi turns 7 months old

Noah on a preschool morning

Jacob decorating a forgotten gingerbread man in Jan.

CARDIOLOGIST APPOINTMENT and SIX MONTHS OLD

How did the past half-a-year go by so quickly?!  Levi will be six months old in two days!  He is sitting up, playing with everything within reach, and loves to smile and interact with us.  He watches intently as his big brothers race around him, shouting and squealing SO loudly.  I can hardly stand it sometimes, but Levi just watches and smiles.  He is such a sweetheart!

just shy of six months old

This morning Levi went in for his regular cardiology appointment.  The echo showed that his aortic valve is leaking a little bit more, but not badly enough to warrant an intervention.  His aorta is slightly more dilated, but again, not anything alarming.  Everything else is holding steady.  His oxygen saturation is perfect at 100%.  He weighed 16 lbs 8 oz and measured 25 1/4 inches.  His cardiologist said he looks great, is very alert, and wants to see him again in mid-February.

During Levi's appointment, James and I also had echos to check our aortic valves and everything looks normal.  The other two boys' hearts were checked this past summer and found to be healthy.  Our cardiologist has gone above and beyond and was very kind to reassure us in this way.

Sweet Levi did very well at the appointment, which happened to coincide with his nap time.  That could have been a very bad thing, but he barely fussed at all and even fell asleep for the last few minutes of the echo.  After only a 10 minute nap, he was smiley and sweet for the rest of the appointment.  On the way home after the two hour appointment, he fell asleep in the car and slept for three hours.  Now he's playing, cooing, and sucking his thumb.  What a love!

Happy Boy eating his food

The other big news is that tomorrow at 4 pm, we're meeting with a pediatric heart surgeon from Portland, Dr. Langley.  He happens to be visiting the Bend area, so our cardiologist set up this appointment for us.  I have to say I was a bit shocked when I received the call on Monday asking if we wanted to meet with the him.   I knew we'd be speaking with surgeons at some point, but I didn't think it would be quite yet.  But this is a good thing.  We need to start getting prepared for Levi's future heart surgery to replace his aortic valve.

We've been told that Levi will need a Ross Procedure.  Interestingly, our cardiologist gave us a heads up that Dr. Langley is going to present us with another option.  We're curious to hear what he has to say, that's for sure.  I'm still working of preparing our list of questions.

Our cardiologist also spoke with a well-respected surgeon in San Diego regarding Levi and the Ross Procedure.  Though he does do this type of surgery, he highly recommends cardiothoracic surgeon Dr. Vaughn Starnes at Children's Hospital Los Angeles.  That's a name I've come across as well.  If we need to travel out of state, Los Angeles would certainly be somewhat convenient in that we have a lot of family in Southern California.  For now, we'll continue researching our options.

In other family news, we celebrated Thanksgiving with James' sister, Colette.  We had a wonderful time catching up, playing, eating good food, and drinking lots of lattes together. She's now in Haiti, helping with the cholera outbreak.  She'll fly back into Bend when her assignment is over, so we'll look forward to a little more Aunt Colette time.

Aunt Colette with the boys

It's hard to believe Christmas is next week!  We're staying home and will be joined by some of James' family.   We're really looking forward to family time and the boys are super excited for Christmas morning.  Noah's really into dinosaurs right now and is hoping Santa will bring him an Elasmosaurus.  My best Christmas present is that James in on vacation for two weeks beginning this coming Tuesday!!!

May you and your loved ones have a wonderful Christmas.

Love,
The Kerr Five

Second choice for the Christmas card....we met a grandma in the park who snapped a few shots!

decorating our tree

Santa Jacob

A morning of sledding with friends!

James and Jacob racing down the hill

Levi, content to watch it all

FIVE MONTHS OLD

Levi is already five months old.  I can hardly believe he's sneaking up on that half year mark.  It's all gone by so quickly.  Levi's doing great as far as I can tell.  In December he has both a cardiologist and pediatrician appointment, so we'll know more about how his heart is doing at that point.

What's new in the last few weeks?  Levi is finally sleeping in a crib in his own room.  Up until about three weeks ago, Levi slept in the co-sleeper attached to the side of my bed.  I liked it that way.  I was able to keep an eye on him and quickly attend to his needs.  But it finally came to the point where he was physically outgrowing the co-sleeper and needed a bigger place to sleep.  He seems to like the crib and sleeps well in it.  He's still up at least a couple times during the night, eats well and goes right back to sleep.  I seem to be even more tired though, now that I'm apart from him.  And so it goes!

Yesterday he had his first bit of solid food.  Rice cereal.  He seemed to like it, so that's good.  It will be nice to have something that daddy can feed him too.

Levi is starting to sit up on his own!  I love this stage.  It seems like a whole new world opens up to babies at this point.  The can reach, grab, and play with their toys so much more easily.  He's still a happy, sweet, and easy-going little guy.  We just love him so much.  He is the best little baby.

Levi loves watching his big brothers play.  He lights up when Noah and Jacob smile and talk to him.  And they certainly love their baby Levi.  I often hear them saying, "Levi's so cute!"  They're very sweet brothers.

The weather is definitely changing here in Central Oregon.  We loved watching the leaves change this year, but now they are just about all gone and the snow has set in.  Noah and Jacob love to stomp around in it, but I'm not sure I'm ready just yet!

winter brings a new job for James before work in the morning

My mom came to visit earlier this month.  The boys loved spending time with Grandma Valerie.  Noah showed her his preschool class and demonstrated what he's been learning in swim lessons.  Plus there was lots of time to read and play with Grandma at home.  I've been playing around with my camera lately and was able to get some good shots of the boys with Grandma.  That was fun.  It was a great visit and she is missed already!

Last week James flew to the island of Trinidad, off the coast of Venezuela in the Caribbean, for a business trip.  His trip went well, but boy did I miss having him at home and so did the boys!  It was a very long week on my own with the kids.  As much as I love them, I do not love getting all three ready for bed at the end of the day (or up in the morning for that matter).  I am so thankful to be married to a man who is such an amazing and involved daddy.  I was definitely reminded of that when he was away.

We're looking forward to celebrating Thanksgiving with James' sister Colette, now that she's back in the states for a little while.  She was recently on assignment in the Congo as a nurse with Doctor's Without Borders, so we're always excited when we have a chance to spend time with her during her work breaks.

Happy Thanksgiving to all of our family and friends.  We certainly have so much to be thankful for.  We are especially blessed by our three little boys.  We thank God for Levi's continued good health and the quality care he is receiving.  God has provided and continues to each day.

FALL FUN

The days are getting cool and crisp in Central Oregon.  We've visited the pumpkin patch, baked pumpkin bread, carved pumpkins, and trick-or-treated.  The boys love watching the leaves change color and collecting them is a favorite activity.  I can hardly believe it's already November though.   I'm hoping winter doesn't arrive too early this year. 

The big boys liked the feel of the slimy pumpkin insides.  Levi had a front row seat.

My little pumpkins

First Halloween.  Didn't last long in the tiger costume, so we went for Plan B, polar bear.

After a fun-filled night of neighborhood trick-or-treating