Happy Heart Day and Levi's Frightening Illness

CHD Awareness Week

Happy Valentine's Day.  Heart Day.  Lots of emotions.  Today marks the end of CHD--Congenital Heart Defects--Awareness Week.  I knew nothing of congenital heart defects before Levi was born.  Nothing.  I had no idea that 1 in 120 babies are born with a heart defect--40,000 babies a year in the US alone and 1 million worldwide, making it the most common type of birth defect. Public awareness is a critical step toward improving access to care, increasing scientific research and educational programs, and passing laws that will allow for crucial early diagnosis and treatment.  

Levi - age 2.5 years

Levi's diagnosis of critical aortic stenosis at two days old was a total surprise.  We had a 20 week ultrasound and were told everything looked great and we were having a boy!  We were so excited and I continued to have a smooth pregnancy.  Then our world was turned upside down when the "innocent" murmur that was heard at birth turned into a life or death heart defect that needed intervention immediately in order for our baby to survive.  Levi was airlifted in the middle of the night to another hospital and underwent an emergency balloon valvuloplasty to open his aortic valve.  At one year old, Levi had open heart surgery to repair this same valve as well as an arotic aneurysm.  

I was thrown into a medical world I knew nothing about and was forced to learn more about the heart and the care and the surgeries that my son will require for the rest of his life.  I didn't know to ask not just about the four heart chambers during the fetal ultrasound, but also about the four heart valves and the flow of blood.  Our son's diagnosis was missed. My son's heart defect could have been diagnosed before his birth.  We could have prepared and chosen the hospital that could best meet the emergency needs of our son.  Thankfully he survived!

Levi is doing well.  Thank God.  His heart will always be monitored and a source of concern for us.  Most likely he will need future open heart surgeries and a valve replacement at some point.  We don't know when.  It's a waiting game from appointment to appointment.  

CHD Awareness Week helps bring pediatric heart disease to the forefront to inspire those who can make a difference.  Survival rates for children with complex heart defects have improved dramatically over the past few decades but early diagnosis and treatment can make the difference. 

Levi's Frightening Illness

a late night in the ER

Levi was scheduled for a routine cardiology appointment this morning.  Unexpectedly, we had to move it up two days to rule our several possible scary infections that could have been wreaking havoc on his heart.  Beginning eleven days ago, Levi started experiencing some bizarre and frightening symptoms.  All of a sudden, after a totally normal morning, Levi started complaining about pain in his legs and in less than an hour, couldn't walk or bear weight.  Over the next days this trouble walking came and went and was accompanied by a persistent fever, a hive-like looking rash, swelling of his feet, hands, knees, eyelids, lips that came and went, cough, oxygen sat was down to 91% at one point, and some odd swelling on his forehead.  It was super scary and new symptoms seemed to crop up every day.  What was happening to my baby?!

swelling

horrible hives

Levi is FINALLY on the mend and just has a little remaining rash and occasional stiffness or pain in his legs.  We don't know for sure what's been causing this, but we've had one urgent care visit, one ER visit, five pediatrician appointments, consult by the one pediatrician with a rheumatologist, one set of chest x-rays (normal), three days of blood testing, and a urine sample!  He continues to take antihistamines to help with the rash and ibuprofen and acetaminophen for pain as needed.  But like I said, he's finally just about back to normal.

swollen hands

waiting for more tests

Levi's cardiologist also squeezed him in early for an echocardiogram and EKG on Tuesday morning.  The best news is that whatever this is/was, it does NOT seem to be affecting his heart.  We were so scared it was.  In fact, Levi's heart looks as good as can be expected!  His heart function has not changed much at all since his last cardiologist appointment in May 2012.  He still has moderate aortic stenosis, but it has not progressed (mean pressure gradient of 28, peak gradient of 48).  His aortic insufficiency (leakage) remains trivial, he still has mild left ventricular hypertrophy, and his ascending aorta looks normal (previously he had surgery for dilation/aneurysm).  This was a huge relief that things are still holding steady!  The doctor says he can go a year till his next appointment!

swollen forehead above right eye

As far as Levi's blood work goes, two tests indicate he has increased inflammation in his body, but can't specify the cause.  His latest blood work shows that these levels are decreasing though, so that's good.  His other tests have looked normal so far and we're still waiting for one more set of results.  After ruling out things like rheumatic fever, Kawasaki disease, endocarditis, and juvenile arthritis, it seems this may just be some strange allergic reaction to a virus that's just really thrown Levi's body for a loop.  Ultimately, if symptoms such as joint swelling and fever return at a later time, then this may be a bigger issue, but for the time being we can't put an exact finger on it.  Up until about three days ago, before the echo and blood work came back, I was a nervous wreck, so afraid that my sweet little boy might have to endure another freak diagnosis.  He was such a sick little guy.  I am SO incredibly thankful that he is finally is on the mend and appears to be almost back to normal!

just about back to normal!

Other Heart Families

I was so excited and moved when I saw the cover story of our local newspaper this morning.  Lindsey Bingham, a nine-year-old girl from Oregon, whose story I have been following, is finally receiving a heart today at Lucile Packard Children's Hospital at Stanford.  After an 8 month wait in the hospital on a mechanical heart, this little girl is getting a second chance at life with a heart transplant that she so gravely needed.  It's her Heart Day.  Finally.  Unbelievably, she is the second child in her family to receive a heart transplant.  And while this is cause for great celebration, it also means that another family is grieving for the child they just lost.  What an extraordinary gift of life and hope this family has given, even in the midst of their own unfathomable grief.  Please pray for the donor family and for Lindsey as she begins a long road to recovery.  As I read the Bingham blog this morning, it was hard not to get choked up. What an awesome time of medical advances that we live in.  What an extraordinarily difficult road it can be for so many CHD children and families.  

Just after reading about Lindsey's special heart day, the sad news came that a baby boy in Oregon, only a few weeks old and born with a heart defect and recovering from surgery, tragically passed away yesterday.  I can't imagine that kind of loss and it happens all too often.  Nearly one-third of birth defect-related deaths of infants are caused by congenital heart defects.

I am forever grateful for the doctors who worked on Levi's heart and gave him a chance for a better life.

So, Happy Heart Day.  Hug the ones you love and hold them close.

all three munchkins at Christmas dinner

Grandma with her grandsons (and the matching shirts she brought them :))

New Job

James just finished up his fourth week of work at his new job!  Ours prayers were answered in a really big way last month.  Exactly one month from the day James was laid off, he was offered a new position at a great company only four miles from home!

The relief that he has a job again is huge and the fact that it's even better than the last is beyond wonderful.  Today James is mountain biking along the McKenzie River with a couple new friends from work.  I'm so happy to see James enjoying his job and his co-workers.  Thanks be to God!

Grandma Valerie and the boys' cousins came to visit

Happy Birthday Levi, School's Out, and Job Hunt

Levi's Birthday

2012 - Isn't Levi looking like a big boy?!

Sweet Levi is two years old!!!  I still call him my baby, but he's far from it!  He's an adorable, coordinated, opinionated, two year old with a smile to melt your heart.  We love our little guy and he is healthy, strong, and growing well.  He loves riding his balance bike, playing with cars, splashing in water, and running straight down the street whenever I turn my head!  He is busy, busy, busy, but oh so cute.

Levi is still having much difficulty with his speech, or lack thereof.  He continues to receive services from Early Intervention and I recently took him

2010 - Levi, three days old

to another speech and language pathologist in town who will see him once a month.  We still don't know if this is just a speech delay or if it's something more serious like childhood apraxia of speech.  Levi had an in-depth hearing test done a couple weeks ago, and his hearing is just fine, so it's good to rule that out.  In the meantime, I'm teaching Levi some more signs so he has another way to communicate.














June 24 marks the one year anniversary of Levi's open heart surgery.  I haven't wrapped my head around that yet, but will reflect on it as it draws closer.  I can't go there just yet.


Schools Out

Jacob's end of year preschool performance

The big boys are out of school for the summer.  Noah finished up kindergarten and Jacob completed his first year of preschool.  They both had great school years and we love that they both love school!

Now that summer has arrived, they spend their days playing outside with the neighborhood kids, having water shooter fights, and going on walks in Shevlin Park.  We'll mix in some swim lessons, a couple VBS camps, and some day trips to the Cascade lakes, and that's our summer.  Fun!

Job Hunt

Noah's last day of kindergarten

Unfortunately, in the midst of all the summer excitement last week, James was laid off from his job of five years.  Due to financial difficulties, the company had to make some drastic cuts, and that meant James was one of many employees let go without notice.

As you can imagine, this is a huge stress for our family as he was the sole income. It throws us into a lot of unknowns.  With Levi's ongoing health condition, maintaining good health insurance is a must, so that's just one of many pieces to this puzzle that we need to figure out.

James is spending his days working really hard to find another job.  He is such an amazing husband and a such a dedicated worker. Whatever company hires him will be so lucky to have him.  He does have a promising local interview set up next week and another couple possibilities, so we are hoping that something pans out soon.  Central Oregon is not a very big place, so finding a job could prove difficult.  We ask for your prayers that God will open the door to an amazing new job.  It's hard to see beyond the shock of this past week, but we know that God has carried us through some very dark times before and He will again.  I just wish I had that future perspective now, rather than that awful anxious feeling in the pit of my stomach that sometimes sneaks up on me.

Grandma Arrives
My mom arrived from California and is staying with us for the week.  I'm super excited to have her here as it's always so much fun for the kids to have grandma-time, and I love getting out and about with her during this beautiful time of year.  She couldn't have come at a more perfect time too as she always puts a smile on our faces.

Crater Lake stop on the way to Southern Oregon for a mountain bike race in May

Lithia Park in Ashland, OR

Rogue River Gorge, Southern Oregon

Jacob at the Sisters Stampede Mountain Bike Race (daddy and boys raced)

Our Family

Six Month Cardiology Check-Up: Looking Good

Next month marks the one year anniversary since Levi's open heart surgery to repair his aortic valve.  It's been six months since his last cardiology appointment, a record length between check-ups.

the sternal scar is hardly visible almost a year after surgery

Today's echo showed that Levi's heart remains fairly unchanged from his last appointment in Nov. 2011.  That's GREAT news!  His aortic stenosis is still in the mild range, based on a variety of readings that show it's either the same or just slightly elevated. His aortic insufficiency (leakage) is still only trivial.  Prior to surgery it was severe.  Levi's ascending aorta looks fine (not dilated like before surgery) and he doesn't show signs of excessive narrowing below the valve due to sub-aortic stenosis either.  According to the EKG, His left ventricle does show a little hypertrophy, or thickening.  Because of the aortic valve stenosis, his heart is working harder to pump blood out to the rest of his body, so the muscle thickens.  This is expected with aortic stenosis, but it's nothing to be concerned about at this point.  So all in all it was a great appointment!

The doctor said Levi can go a year between appointments, but she also said if we want one in six months for peace of mind, she's fine with that too.  I, of course, want one in six months just to be sure things are still okay, and James is leaning more toward a year, since "if the doctor's okay with a year, then so am I."  I get it, but we'll see how I'm feeling around the six-month mark.  ;)

Sedation today, as usual, was difficult.  Levi is a typical 22-month old toddler, who won't hold still for an echo or any other poking or prodding.  I hear about other kids being fine with just distractions like TV, bubbles, music, toys, etc, but Levi is a mover and a shaker with a strong will!  So we opt for oral sedation.  However, he has a really difficult time (a) keeping the medication down--it's nasty tasting, and (b) falling asleep with ease.  We arrived at 8 am, but it took over two hours to get him mellow enough for an echo.  He was groggy and on the verge of sleep for so long, but just fought it so much.  We've tried two types of  oral sedation in the past, and neither are very easy on Levi.  So our appointment from start to finish stretched almost 3.5 hours.  Phew!  It was a very long morning and I always leave cardio appointments with the biggest headaches.  But, it's all worth it to get accurate readings and know how Levi's heart is really doing.  The nurse said that around age three, echos become much easier and sedation is rarely used.  We're almost there!

the boys LOVE riding bikes

Developmentally, Levi is a very normal almost-two-year-old.  He loves playing outside with his brothers and zooms around on his little push car or in his foot-powered "cozy coupe".  He likes dogs, trucks, buses, and frozen peas.  He's also our escape artist when he's outside, so momma has to keep a very close eye on him!  My mom suggested fastening a bell to him or making him wear squeaky shoes.  I'm really thinking about it!

The only area where he's behind is expressive language.  He'll be two years old on June 18 and he's not talking yet and doesn't make very many vowel or consonant sounds.  He'll say "mama" and "u" for "up" when asked to, but not much else.  He understands everything though, so that's a good sign.  He's enrolled in Early Intervention and has a teacher who comes out to our house to work with him twice a month.  We're not sure if this is just a typical language delay or if it is caused in part by trauma the first year of life, i.e. heart surgery and a cath procedure.  So we continue to support Levi in this area and hopefully he'll start talking soon.

What a relief to have today's cardiology appointment behind us.  We were anxious and nervous about what we might find out and I couldn't help but play the different scenarios through my head.  What if things have worsened?  What if he's facing heart surgery again? What if...?  What if...?  So if you just heard a big sigh of relief, it was probably coming from our house.  We are once again given the gift of a good report and a good chunk of time before the next check-up.  For now we can get on with living a life of normalcy around here.

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not harm you, plans to give you hope and a future."    Jeremiah 29:11

                                                               

Jacob and Noah out for a bike ride with daddy

I turned on a yoga video and the kids took over!

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