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

STAYING THE SAME

This morning Levi had a cardiologist appointment.  After examining the echocardiogram and EKG, the doctor said Levi's heart looks about the same.  That's good news!  He still has moderate aortic stenosis, regurgitation, and a dilated aorta, but there's no apparent increase in any of those.  So things are steady and not worsening at this point.  Other than a miracle healing, that's the best possible news.  She'd like to see him again on December 16.

At four months old, Levi is starting to wiggle quite a bit more during echos and isn't just falling asleep like he used to.  I have to hold him down and try to get him to lie still, but it was hard to distract him today.  The echo lasted about 45 minutes.  He wasn't unhappy, just really squirmy (and very talkative, which was cute).  I'd imagine that pretty soon he may need to be medicated to get a good reading.  

Lately, I've been thinking a lot about where we'll take Levi for heart surgery.  Would we go to OHSU in Portland because it's an in-network provider and, at a 3-hour drive, the closest hospital to home?  Would we travel to another hospital out-of-state?  With so much family in So Cal, would we go down there?  We want the best care possible for such a serious and delicate surgery, so I posed the question to the cardiologist today.  In addition to OHSU, she mentioned a couple other hospitals with top-notch pediatric heart surgeons on the West Coast.  She's going to begin researching hospital stats and surgeons for this specific type of surgery (Ross Procedure), so we can be more prepared when the time comes.  

I also asked about James and I getting our hearts checked too.  She said at Levi's next appointment, she'd be happy to have the echo technician unofficially check both of us out.  How great is that?!  As I get to know Levi's cardiologist better, I'm extremely thankful to have her here in town and caring for Levi.  She takes her time in answering all of our questions and is very thorough in her exams and reports.  

I'm glad to have today's appointment over.  I never realize how worked-up I am about each one until it's over.  Even though it was a good appointment, I feel so drained.  

So, for now, we wait until Levi's next appointment in December.  

A big thank you goes out to our good friends who have helped watch Noah and Jacob during Levi's various appointments.  With drive time included, these appointments take a good 3+ hours.  It would really be impossible to take the older boys along.  Thank you again!

On a different subject, today we woke up to our first SNOW of the season!  A light blanket of white covered the trees, rooftops, and roads.  And to top it off, the sunrise was spectacular.  

As I stood in the front driveway taking in the awesome beauty and peacefulness of the morning, and thinking of the cardiologist appointment I was about to go to, I was reminded of the hope that God provides.  

The Bible tells us in Lamentations 3:22-24," Because of the Lord's great love we are not consumed, for his compassions never fail.  They are new every morning; great is your faithfulness.  I say to myself, 'The Lord is my portion;  therefore I will wait for him'."

A new morning will always come.  Night will always end.  The Lord stays the same.  He is faithful.  That's what brings us peace in the midst of all of the uncertainties.  


And what a beautiful morning it was.

Noah couldn't wait to stomp around in the snow

FOUR-MONTH CHECKUP

Levi had his four-month checkup with Dr. Hedges, his pediatrician, today.  She said he looked great!  He is growing and meeting developmental milestones right on track.  He also received three immunizations, but was a trooper and calmed down pretty quickly.  Levi's latest growth stats:  Weight:  14 lbs 13 oz (50%);  Height: 25 in (55%);  Head: 42 cm (45%).

As early as next month and continuing throughout the winter and spring, Levi will start receiving a monthly Synagis shot. This will help protect him from respiratory syncytial virus, or RSV, a common, seasonal and easily-spread virus. Most people with RSV disease suffer moderate to severe cold-like symptoms.  Preemies and babies with certain heart or lung conditions are at high risk for severe RSV disease, which could lead to serious lung infections like pneumonia and bronchiolitis.  So, more shots for little Levi!

At the appointment I was also able to obtain copies of the echocardiogram reports for both Noah and Jacob.  Back in July, both boys had echos to make sure that their hearts were healthy.  And they are!  So, I'm just adding these reports to the binder I've already started for Levi.

I'm so thankful today's appointment went well.  Dr. Hedges just really thought Levi looked great, and he sure gave her some really big smiles and belly-laughs!

Now we just wait for the big appointment next week...the cardiologist.  On Oct 26, Levi will have another echo performed.  Hopefully there won't be any major changes in his aortic valve or his aorta.

IN THE BEGINNING

It's been four months since Levi was born.  I've decided to keep a blog to chronicle Levi's journey and to more easily share updates and information with family and friends.


I've been meaning to write down the events that surrounded Levi's birth, the unexpected days in the NICU that followed, and the lifelong heart journey we are now on.  So, I'm starting back at the beginning....when everything went in a much different direction than I ever expected.


My pregnancy with Levi was very normal.  Since I had had a c-section with Jacob, my second son, a repeat c-section was planned at 39 weeks for Levi.  As scheduled, James and I woke up early on Friday, June 18, 2010 and headed to St. Charles Medical Center for the birth of our third son.  My mom had flown in from Southern California the night before and was home watching Noah, 3, and Jacob, 2.  


Other than feeling a little more of the c-section than I would have hoped, the surgery went as planned.  Levi was born at 8:04 am, weighed in at 7 pounds 3 ounces and was 19.5 inches long.  We were so excited to finally meet our little guy!  A little smaller than I expected, considering the size of my other boys, but still healthy and beautiful.  We agreed that our family was now complete, so I had a tubal ligation done at the same time.  Levi looked perfect and had two Apgar scores of 9.

When Levi and I were reunited in the recovery room, he nursed perfectly and was as sweet as could be.  Situated in a lovely and quiet room at St Charles, we settled in for what we thought would be a three or four day hospital stay.  I actually commented to James that this was like a vacation to me.  Room service, people waiting on me around the clock, and no toddler or preschooler tugging at me.  This was going to be a great few days of rest and a sweet time to get to know little Levi.

Later that day, Grandma Valerie brought our other two sons to meet their baby brother for the first time.  Noah just loved holding Baby Levi and was so gentle with him.  Jacob gave Levi a stuffed animal monkey and was excited to finally see the baby that was in mommy's tummy for so long.   After a while, Grandma brought the boys back home and would bring them again the next day.

Throughout the first and second day in the hospital, several nurses and pediatricians stopped by our room to check on Levi.  He was given a bath, footprints were taken, shots were administered, and it seemed as if everything was just fine.  With each exam, nurses and doctors would mention hearing a heart murmur.  That comment was soon followed with a statement about how that's normal and it should go away within 24 hours or so.

Our first time together as a family of five

Well, around 7 pm on Saturday, June 19, our boys' pediatrician, Dr. Hedges, was on call at the hospital and came by to check on Levi.  She listened intently to his heart.  After a few moments, she calmly turned to me and said that she still heard the murmur and just wanted to determine for sure what was causing it.  So, she sent us down the hall to the NICU and ordered an echocardiogram, an ultrasound of the heart.  At this point I wasn't alarmed and thought everything was going to be fine.  James was out having dinner, so I called to tell him and he met us there a little while later.

With the help of a pacifier, I tried to keep Levi calm on the exam table while the technician performed the echo.  The echo took much, much longer than I expected and the technician was very quiet throughout the exam.  Still, I never imagined that it would show anything other than a healthy heart with an innocent murmur.

When the exam was finally over, the technician stepped out of the room and I could see her talking to Levi's pediatrician down the hall.

This is where things start to get a bit blurry.  Dr. Hedges came back into our room and said she had spoken with the technician but was waiting for the echo to be reviewed by a pediatric cardiologist at Oregon Health and Science University, OHSU, in Portland.  After what seemed like a long time, she finally came back in the room and calmly explained the unthinkable.   Levi had critical aortic stenosis, a condition in which one of the main heart valves narrows and does not open fully.   He needed to be airlifted to Portland immediately to have a balloon aortic valvuloplasty done in the catheterization lab.  She reassured us that this was not open heart surgery, but a fairly non-invasive procedure that should help correct the problem.


We spoke by phone with Dr. Armsby at OHSU who would be doing the catheterization procedure.  She explained that she would enter Levi's femoral artery in his groin and guide a tiny flexible tube with a balloon on the end of it up to Levi's heart.  Once it was across the obstructed valve, the balloon would be inflated.  This should open up the narrowed valve and allow more blood to pump through.  The echo also determined that Levi has a thickened bicuspid valve instead of a tricuspid valve.  This would complicate things.  We didn't have time to fully digest or understand what had been explained to us at this point, but we knew that Levi had a life-threatening condition that had to be fixed right away. I think at that point we believed that it really could be "fixed" and he would be healthy for the rest of his life.  We would find out later that that isn't the case.


At first we were told by hospital nurses that either James or I could accompany Levi in the Airlink helicopter.  Then, due to weather conditions, it was determined that an airplane would be used instead, which meant two ground ambulance rides as well.  Since I had had a c-section the day before, I couldn't drive myself to Portland, so I was going to be the one to go with Levi.  James would have to make the middle of the night three hour drive over the mountains alone and would meet us there.  I wasn't thrilled about that.


I headed back to my hospital room to pack my belongings and prepare for the trip.  As I was packing, a nurse appeared and informed me that I couldn't go with Levi after all.  A nurse-in-training would be on board and due to weight limitations, I wasn't able to come.  I was devastated and very teary.  The thought of our newborn being flown to Portland for a heart procedure without either of his parents was more than I could handle.  


When I finally returned to the NICU room where James was waiting with Levi, doctors were already preparing Levi for the flight.  They had placed one IV in Levi's right arm and another one in his scalp.  He was fairly calm through it all, which I'm thankful for.  Next he would be intubated in case he stopped breathing, a risk from the medication that was to be administered to keep his ductus arteriosus open.  We needed to get on the road so we could try to get to Portland before Levi went in for the cath procedure.  We kissed Levi and said a tearful goodbye to our sweet baby.  


After leaving the hospital, James and I decided to stop by our house to pick up extra clothing before driving to Portland.  While driving home, we called our moms to tell them the news.  When we arrived at home, we quickly threw some clothes, food, and toiletries in the car and filled my mom in on a few more of the details.  I wanted to kiss Noah and Jacob goodbye, but they were already asleep and having just had abdominal surgery, I couldn't walk up the stairs.  It was hard to leave since we didn't know when we'd be back.


After stopping to get gas in the car, we were finally on the road by 10:30 pm.  We called a few close friends to let them know what was happening and to ask for prayer and their help in sharing the news with other friends.


The drive to Portland felt like an eternity.  We desperately wanted to make it there before Levi went in for the catheter procedure, but knew that we probably wouldn't make it in time.  After driving over the highest point of the mountain pass, we hit a really, really thick fog.  We couldn't see more that a few feet in front of our car.  We had to slow down to a crawl and carefully wind our way down the mountain.  


We finally arrived at the OHSU emergency room at about 2:15 am.  We were escorted up to the twelfth floor to the Doernbecher Neonatal Care Center, DNCC (their version of a NICU).  After checking in and scrubbing in, we were taken back to Pod 4, Bed 1 where Levi was situated.  We were shocked and so happy to find that he hadn't been taken away for the procedure yet.  He was asleep from the medication and had lots of tubes, wires, and monitors hooked up to him.  We couldn't hold him, which was hard. 


At about 3 am on Sunday, June 20 (Father's Day), Levi was wheeled away to the cath lab.  A nurse told us that it would probably take about an hour and a half and that once it was done, Levi's leg may have a blue tint to it for a day or so.  We were taken down the hall to a very small room with a futon in it.  It was a bit like a closet, but we were thankful to not have to find a place to stay in the middle of the night.  The next morning we would have to be out of it by 7 am, but a social worker would try to get us a room at the Ronald McDonald House a block away.


I had a hard time falling asleep, and don't think I slept more than about 45 minutes.  I also had to pump breast milk every couple hours and store it.  By 6 am, we still hadn't heard any news about Levi, and were beginning to get concerned.  I asked at the nurses station and they still didn't have any updates.  The scary thought crossed my mind that he hadn't made it.  


Around 6:30 am, we heard a knock on our door.  Dr. Armsby who performed Levi's procedure came by to tell us that he was okay and that the procedure had improved the blood flow through the aortic valve and out to the rest of his body.  We were relieved.  She crouched down, and using the futon as a table, drew a sketch of Levi's heart and explained exactly what she had done.  Though the balloon dilation had worked, it was not perfect.  Levi was still left with moderate aortic stenosis and now had moderate aortic insufficiency too, or leakage back into the heart.  This insufficiency means the left ventricle has to work even harder to get oxygenated blood out of the heart to the rest of the body.  But for now, moderate aortic stenosis and insufficiency is something that Levi can live with...critical aortic stenosis is not.

After Dr. Armsby left, we went to see Levi.  He was back in Pod 4 and resting quietly.  He hadn't come out of the anesthesia yet and was still intubated and on the respirator.  The nurse noted that the color in his legs looked good, which isn't always the case after a catheterization procedure.  It was hard to see Levi non-responsive and I couldn't wait for him to wake up.  We stayed with him throughout the morning and in the afternoon received word that a room was available for us at the Ronald McDonald House.  The nurse assured us that she would call our cell phone as soon as Levi started to wake up, so we went to check into our room.  After getting settled, we received a call from Levi's nurse in the early evening.  He had finally awakened and was extubated!  We rushed over to the hospital and were finally able to hold our sweet baby.  He was hoarse and had what sounded like a lot of congestion from being intubated, but otherwise was doing great.  I was able to breastfeed Levi right away.  It was amazing to be able to cradle our sweet son again.


We would end up staying at OHSU for the next six days.  Since I was feeding Levi on demand, I decided to stay with him more or less around the clock.  At night, James stayed at Ronald McDonald House, while I slept in a reclining chair in the "mother's pumping room".  Levi's night nurse would come and wake me up whenever he was hungry.  When Levi wasn't eating, he was mainly sleeping.  I was worried that he seemed too calm for a newborn, since my other two boys were so much more fussy.  The doctor's assured me that Levi's temperament was not due to his heart condition and that he was getting enough blood to function normally.

Levi had poor distal pulses on his right side, the side that was accessed for the catheter procedure. He was started on heparin in his IV. Heparin acts as an anticoagulant, preventing the formation of clots and allowing the body to work normally to break down clots that have formed.  It was important for the artery to be clear of clots so that Levi can have future cathiterization procedures.  Levi would continue on the heparin for the next six days. That also meant numerous heart-wrenching blood draws to monitor the heparin level in his blood.

It would have been possible for Levi to go home after only a couple of days, but another complication arose.  A linear mobile density in the ascending aorta was noted on one of several echocardiograms.  This was a major concern because it looked like a possible dissection of the aorta which could lead to an aneurysm.  A CT angiogram was performed and confirmed that there was no dissection.  But the CT scan and repeated echos did show what was assumed to be either a blood clot or an intimal tear in the aorta.  Still not good, but better than a dissection.  Doctors decided to monitor Levi for several more days and keep him on the heparin treatment.  Once he was discharged, his treatment changed to taking a quarter of a baby asprin once a day.

We had a wonderful team of professionals caring for Levi at OHSU

Since four months have now passed, it is thought that Levi probably has an intimal tear in his aorta since the flap is still visible on echos.  This still poses a serious threat to him, but the risk  has diminished some since so much time has passed. 


We received many encouraging phone messages, emails, and texts from friends and family while we were in Portland.  We were so drained and overwhelmed that I could barely talk on the phone without breaking down, so I ended up mainly talking to my mom and had her share the information.  I managed a few Facebook updates, but that's about it.  We are extremely thankful for all of the prayers and support from everybody. 

So what can be done for Levi's heart?  Once the aortic stenosis gets to a critical stage again, some sort of intervention will be needed.  A balloon dilation catheterization procedure may be attempted again, but would most likely worsen the leakage.  If that doesn't work, Levi will need his aortic valve replaced.  His cardiologist is also watching his dilated aortic root.  Most likely he's a candidate for the Ross Procedure.  This is where the aortic valve is cut out and replaced with his own pulmonary valve.  A cadaver valve is then used in the pulmonary position.  Over time, this valve will eventually begin to fail and will need to be replaced again.  We want Levi to get as big and old as possible because once you start replacing valves, they don't grow with your body.  So as he grows up, he'll need bigger valves, which will mean more heart surgeries.  It's hard not knowing when exactly all of this will happen.


Since leaving the hospital, Levi is now closely monitored by a pediatric cardiologist in town.  He's had four echos since leaving OHSU and the next one is scheduled for October 26.  Hopefully he won't need an intervention yet.


The week we spent at OHSU in Portland with Levi was the most difficult and emotional time of my entire life.  My baby wasn't the healthy little boy I thought he would be.  He had congenital heart disease.  My world was turned upside down.  He will have to endure multiple heart surgeries over his lifetime.  This was a lot to swallow in the beginning.  I still have moments when Levi's unknown future is overwhelming.


Levi's heart defect has really caused us to stop and readjust our lives.  We are thankful for each day we have together.  We are confident that God has a plan to use Levi's heart condition for His greater good.  There is a much larger perspective that we can't see right now.  This has been a hard year for us in several big ways.  But, God has provided and we rest more easily knowing that he loves us and has a unique purpose for each of our lives.  


What will Levi's impact be?  I can't wait to find out.