Monday, November 25, 2013

Mending A Broken Heart

"Its time to cut it out."

These were the words uttered with sadness by our beloved cardiologist.

These were the words I had prayed we would never hear.

"And soon."

Me: " before Christmas?"

"Soon. Like next week."

Wow. Ok. So this conversation took place after he read Lenay's echocardiogram and examined her. Her heart function had decreased, her blood pressure was up (higher than her normal high), and he had a really hard time finding pulses in her feet.

This trifecta sealed the deal for Lenay's heart surgery. To remove the device which was put in with the intention never to be removed. It sits in her PDA, which is an extra vessel that some preemies need to have closed between the aorta and the pulmonary artery. The device is made of titanium mesh and designed for the heart tissue to grow through and around it. It was designed to actually become part of her heart. It had fulfilled its destiny up until this point.

If only Lenay's aorta had held up its end of the bargain!

The device was put in when she was 6 months old, and it was the right size and in the perfect placement to plug her PDA. The only problem was that part of the (top hat shaped) device stuck up into her aorta a smidgen. A minor detail, we thought. As time went on it became more apparent that this caused an increased pressure gradient in her aorta, which caused her heart to work harder, her heart to get thicker, and her blood pressure to be higher. The docs anticipated that as she grew bigger, obviously her heart and specifically her aorta would grow as well. In theory, as her aorta grows, the space around that part of the device would get bigger and tada - everything would be good! The problem is that even though she has obviously gotten a lot bigger since she was 6 months old, the pressure gradient has stayed the same.

The crazy thing about all of this is that not only have they never seen this problem in Peoria, no one has seen it. Our docs have presented her case at several conferences with experts from all over the country, as well as talked with a group of docs specifically from Texas Children's (the leader in pediatric cardiology) and all they can do is speculate what they would do with this patient. The consensus has been to watch her closely with echos and EKGs, manage her BP with meds, and play the waiting game. If her heart began to show more stress, then the time would come to cut out the device.

And that time has come.

The other ridiculously crazy thing about all of this is that she has been asymptomatic. After reading her echo and having such a difficult time finding her pulses, he really pressed me: Has she been having headaches? Leg cramps? Belly aches? Is Campbell out running her? Does she get tired after being up for a while? Does she need to sit down a lot?

No. 1000 times no.

She's amazing really.

She has always been asymptomatic. And even when she was a tiny baby with a large PDA, where most kiddos with that kind of diagnosis have lots of respiratory and digestive issues due to lesser bloodflow to those areas, she had none of that. Her sister had a whole mess of those problems (and a closed PDA) - so much that I was convinced they had them mixed up! I had them double and triple check those echos to make sure we were talking about the right baby.

And now? We just got back from a week at Disney World. My fearless Lenay rode all the rides she was tall enough for. Even a couple roller coasters. And when she wasn't riding, she was off and running.

My tough little cookie.

We met with our surgeon, and he was very honest. He has never done this kind of surgery before. Sure, he has gone in and "fished devices out of the heart and lungs that have slipped out of place" (awesome!) but never have they needed to go in and cut one out the heart has scarred in and grown around. That being said, he was very confident that he could do it. I've talked with several mamas of heart kids and everyone says the same thing about him - that he is the best of the best, but he is also the first to admit defeat. So if he didn't believe he could do it, he would be sending us somewhere else.

There was some discussion about how to approach the surgery - if it should be open heart or thoracotomy - and he decided it would be a thoracotomy. His plan was to go in and try to just cut off the part of the device sticking up into the aorta, and if that didn't work then he would cut out the whole device and stitch up her PDA.

Surgery lasted about 3 hours. When he met us afterward, he told us that the device was so encapsulated within the aortic wall, and the scar tissue extended around the aorta, that it created only a tiny hole for bloodflow, versus a wide open aorta. His only option once seeing it, was to cut out that section of her aorta and stitch it back together. This is called an aortic bisection, which he does for kiddos who need a coarctation repair.

He gave us the pictures he took of the section he removed, with the device inside it as well as the scar tissue that not only enveloped the device but also spread around the aortic wall, almost pinching off her aorta. Seeing that tiny opening which all of her blood had been pumping through was simply shocking. And then the realization that her body had adapted to that bloodflow demonstrates the survival instincts which must be built into her very cells.

The more I learn about the human body, the more reinforced my belief in our Creator becomes.

The hours and days after surgery proved to be very exciting. Lenay's color became more vibrant. And not that she ever seemed like a super pale kid to us, but we were just used to her complexion. The pulses in her feet were jumping. Pulses we could barely feel before became "you could feel them through the blanket!" according to our doc :) And as she was laying in her hospital bed, her feet were kicking and moving all the time. It seemed like she wanted to get up and run a marathon or something! And she felt so warm. All that new blood flowing is doing a body good.

We are once again reminded how very lucky we are to have the Children's Hospital of Illinois with the Congenital Heart Center in our backyard. There are families who drive hours to bring their kids here. We drive 15 minutes. We are so grateful to our cardiologist Dr. Bramlet and our surgeon Dr. Fortuna. They made the call and they got it right. To mend a broken heart.

Sunday, February 5, 2012

Van Nostalgia

So we got a new van this week.  Our old van was out of warranty and having some problems, so it was time to trade.

But I can't help but feel a little sad.

Its kind of like moving out of your old house into your new house.

Its exciting to move, but its also sad to leave the memories behind.

Which of course is silly, because you get to take your memories with you too.

But still, its easy to slip into the nostalgia.

We bought our old van in anticipation of the arrival of the twins.  Which turned out to be a huge lifesaver!  Because as it turned out, both girls needed to travel in carbeds instead of carseats.  And had we not had a van, we would have had to go everywhere in 2 cars.  (You cannot put 2 carbeds in the same row of seats.  They are designed so that they will only fit on the passenger side back seat.  So had we not had the third row of seats, they would not have been able to ride in the car at the same time.)  The only places we took them were doctor appointments, but trust me we had a lot!

This is me getting Lenay buckled her carbed in the day we left the NICU. 

She was 6 and 1/2 weeks old and still only weighed 3 pounds 15 ounces!!!  Craziness.  I don't know how we ever did that.

That van helped get our little babies around to the places they needed to be.  It not only brought the girls home from the NICU.  But when Campbell got pneumonia a month later, it brought her back and she stayed on PIC for a week.  It also brought Lenay to the hospital for her heart surgery when she was 6 months old.

It took Noah to swim lessons, soccer practice and games, baseball, basketball.  It carted his friends around.  It took us to Wisconsin Dells for Spring Break last year.

So many memorable moments.

But isn't my new van so pretty?

Sunday, January 22, 2012

Hearts, Eyes, and Preschool

We are heading back to the cardiologist this week.  Both girls will be seen.  Lenay will have an echocardiogram.  I double checked with the doctor, and she doesn't need to be sedated this time.  We will be looking at her heart to see if it has grown.  To see if there is more space for blood flow. 

We are praying that it has and there is.

She is currently on 3 cardiac meds.  One to thin her blood, one to help her heart squeeze harder, and one to lower her blood pressure.

The blood thinner is actually a quarter of a low dose aspirin.  She's been on it since her surgery (when she was 6 months old.)  Until a few months ago, we would crush it and dissolve it in water, but now I just give it to her whole and let her chew it up.  And she does fine with it.  I actually think she likes the taste.  Every morning after I draw up the other 2 meds, she asks for her "piece" - its so cute!

I just realized that I haven't posted anything about Campbell's glasses.  She has had them for several weeks now, and she is doing great with them!  I have to say I am very surprised.  When the eye doctor first told me she would need them, I asked him how the heck I am supposed to keep glasses on a 2 year old's face.  And he told me that she would realize that the glasses are helping her to see, and in turn she would leave them alone.  I was like, uh yeah right.  See, I got my first pair of glasses at age 3, and I constantly broke/lost them, consequently costing my parents lots of money.  But the doctor assured me that nowadays, glasses for little ones are made differently.  They are more comfortable, fitted just for them.  And therefore they leave them on.  Really?  I was skeptical.

He was right!  At first, she did say, "Hurt. Ear."  But after a quick adjustment, they fit her perfectly.  The nose piece is made specifically for little ones, and it is very comfortable in case she falls asleep wearing them.

Her need for glasses has nothing to do with her prematurity.  Like the doctor said, it is a result of my bad genes!  Which, believe it or not, I find comforting.  I was concerned about the fact that she was on oxygen until she was 7 months old, because I had read articles about kids on O2 having eye problems down the road.  But he explained that those problems have to do with blood vessels at the back of the eye, and that we are past the window of opportunity for those problems to arise.  She is however, farsighted.  And her left eye doesn't always track exactly with her right.  So these glasses will help both problems.  And the doctor thinks they will just be temporary. :)

A question I am asked constantly is "How can the doctor tell she is farsighted?  She can't read an eye chart."  Well, the best way I can explain it is that the doctor holds different strengths of lenses up to her eye and shines a light through the lens.  He can tell what her prescription is by observing the way her eye reacts to the light through the lens.  Pretty nifty, eh?  I find it amazing actually.  And I have really noticed a change in her activities since she got her glasses.  She will sit and color for much longer now.  And she looks at her books with new intensity.  Being farsighted, she probably feels like she is seeing them for the first time.  Before, when she would quickly move from one activity to another, I figured she just had a short attention span.  But now after observing her since she got her glasses, I can see that everything seems to hold her interest longer.  Plus her OT is already very impressed with the improvement in her fine motor skills!  And her PT thinks that the glasses will help with her goal of walking up and down stairs as well.  Her depth perception was probably thrown off before.  It all makes sense.  So grateful for the advances in technology that allow my daughter to see and in turn, progress through her milestones!  Go Cam!

We met for her semi-annual IFSP meeting last week with all of her therapists and her Early Intervention care coordinator, and we learned a little bit about transitioning into preschool.  Which just seems crazy!  But at age 3, her services will be handled by the school district.  So we have an appointment at the school in March, where she will be evaluated for services. 

My babies are just growing up way too fast!

Friday, January 20, 2012

From a Different Time

Hello 2012.  How did you sneak up on us so fast?  When I was in high school (class of '97!) and the underclassmen started wearing letterman jackets (do they still have those?) that said "00" and "01" on them, I remember it looked so WEIRD.  I remember it was a hard concept to wrap my small brain around.  Yes.  Time is marching on.  Right into the 21st century.  It will be ok.

Now my 7 year old giggles when I talk about my childhood.  You know, back in the 1900s.  And I've realized that not only will our kids find us to be the regular kind of old you just automatically think of your parents as being, but throw in the fact that we were born in the previous century.  And the previous millenium. 

Yep, we are officially ancient.

My mom tells this story about her grandma, who was born in the 1890s.  She was raising her family in a tiny country town in southern Illinois during the 1920s, when some people came down their road, offering to hook up electricity to the different houses in the neighborhood.  And great grandma didn't really think they needed it.  I mean, what would they do with it?  See it was enough voltage to light ONE LIGHTBULB.  Who cares?  We have kerosene lamps for that.  Duh people.  No thanks.

So Noah is listening intently to this story.  He can't imagine it.  So my mom is telling him.

See Noah, they didn't have refrigerators, or phones, or air conditioners, or televisions or computers back then.

His response?

"Are you saying they didn't have iPods?!"

No Noah.  Sadly there were no iPods in the 1920s either.

So as crazy as electricity seemed to my great grandma, Noah found it equally as crazy that great grandma couldn't buy Plants vs. Zombies in the App Store.

At a recent PTO meeting, we were discussing how to spend certain funds on new technology for the school.  And we had a technology expert come and speak to us about our different options.  And talking about the future, he said that as crazy as it sounds, down the road he sees our kids having all their textbooks loaded onto an iPad (or similar device.)  There would be no need for actual textbooks.  No backpacks.  No paper.  Everything you need is right here on this device.

I left that meeting thinking - Wow. 

I felt a little closer to my great grandma that night.

Friday, December 2, 2011

Great I Am

There is a song that we sing in church that gets me every time we sing it.

Its a beautiful song. 

Very powerful.

Maybe you've heard it.

Its called "Great I Am"

And one lyric in particular just pierces my heart.  Every single time.  In a good way.

Its a line that, had I not lost my dad, would probably not have much meaning.

And honestly those who have not experienced a loss like that, might even find those words grotesque.

But they bring me great comfort.

I want to see dry bones living again.

I well up just thinking them.

When I sing those words, I think of my dad and other loved ones lost.

Living again.

The day my dad died, my idea of heaven got a little sweeter.

I do want to see dry bones living again. 

I desperately do.

Sunday, October 2, 2011

Walking For Our Babies

Its that time of year again.  October.  Time for pumpkins.  Hoodies.  Bonfires. 

And the Small Wonders Miracle Walk :)

Its the annual fundraiser for the neonatal intensive care unit at the Children's Hospital of Illinois.  It was started 5 years ago by a group of NICU parents who wanted to give back to the NICU.

Its hard to describe the connection that we, as parents of NICU graduates, have with the NICU staff.  I mean basically, they were like the 3rd parent to our babies at a very critical time in their lives. 

It is a connection that will always be there.

I can't and don't even want to imagine what our lives would be like today, had it not been for the neonatologists and neonatal nurses who took such awesome care of our babies.

The Children's Hospital of Illinois NICU is a Level 3.  That's the highest level.

It is one of the best NICUs in the country.

Do you know that our NICU serves 24 counties in Illinois? 

24 counties!

That means literally dozens upon dozens of hospitals are sending their smallest and sickest babies to Peoria.

750 babies come through the NICU each year.

There are many families traveling long distances.  Just to be with their babies.

How fortunate are we, to have this awesome facility right in our backyard!

The Small Wonders Miracle Walk and Silent Auction will be Saturday, October 15 at the Riverplex in Peoria.  Auction opens at 9am.  Walk is at 10. 

We have an amazing silent auction committee that has been working very hard getting donations together.  We have Disney tickets!  And Continental Airlines tickets!  Along with lots of great local business donations too.  There's something for everyone :)

We also have a lot of fun things going on for the kids.  We have inflatables.  The Unique Twist will be doing balloon creations.  Zoo Lady will be face painting.  And new this year, the Glitter Fairy will be doing glitter tattoos!

Its also a really neat opportunity for families to reunite with the doctors and nurses who took care of their babies in the NICU.  As you can imagine, this can be a very emotional thing.  Its my favorite!

Money raised through this event will directly fund patient and family centered programming specifically in the NICU.

Consider this. 

No one ever PLANS on needing the NICU.  We certainly didn't.  But the moment our babies were born at 29 weeks and 5 days, weighing just 3 lbs and 2 lbs 9 oz, suddenly we DID need it, in a tremendous way.  And they were there for us when we did.

Join us in supporting a wonderful cause.

Babies.  The tiniest and sickest ones.

If you are unable to come to the event but would like to make a donation, you can click here.

Sunday, September 18, 2011


A few months ago, we were out to dinner with friends.  You know, having some adult time.  And yet, being the parents of small children as we all are, the conversation of course went south quickly. 

To the oh so appetizing topic of pooping in the tub.

See, our friends' daughter is a notorious tub pooper.  And her older brother does not find it amusing.  So each night before bathtime, they have a little ritual where they go around and say: Mommy's not going to poop in the tub, no she's not.  Daddy's not going to poop in the tub, no he's not.  And on down the line. 

So everyone gets the idea that pooping in the tub is not cool.

As they were telling this story, I was laughing hysterically.  I mean, who ever heard of this?   It was something we had never encountered before.


I am not kidding, that very week.  I had the girls in the tub.  And you know there are lots of things in the tub.  I mean, besides 2 girls, you've got washcloths, soap, toys, and books.

The girls are standing up, sitting down, switching places.  You know, standard bathtime fun.

Well as they were scooting past each other, toys and books were swirling from one side to the other as well.

And poop.


Yep.  There it was. 

Several turds.

Just floating along in the bath water. 

Trying to blend in.

There is poop in my tub!

I stared in shock. 

What do I do now?!?

My instinct was to yell: Mom!!!!  Help!!!!

And then it hits me.

Oh, wait.  I'm the mom.

Oh poop.

Get the babies out first.  That's the first step.

Then the toys.  Put them in a bucket.

Then the poop.

What's the best way to get the poop, you ask?

A solo cup.

Do not use toilet paper.  Seems like common sense I know, but in a moment of panic, you might instinctively reach for it. 

Bad idea.  It disintegrates immediately of course, leaving you with a handful of poop.

Once the poop is out of the tub, drain the water.

Break out the bleach.  Disinfect the tub and the toys.

Draw new water. 

Wash the babies (again) and get them the heck out of there before the other one poops!