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!

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.

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.

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.

Floaters

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.

Yet.

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.

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!

Recipe: Barbeque Meatballs

Trying something new here: posting a recipe to my blog :)

This recipe, along with many others in my recipe box, comes from my dear friend Kathie Quisenberry, who is one of the best cooks I know.  She has cooked many times for my family over the years, including weekly meals when our twins were in the NICU.  This recipe is Noah's absolute favorite and the girls love it too.

Okay so I even took some fancy pictures as I was cooking today, so you can get the full effect.  Well, not the full effect I guess, since you didn't get to smell how awesome my kitchen smelled today while they were cooking!

Barbeque Meatballs

Ingredients:

2 lbs hamburger
8 oz evaporated milk
2/3 cup old fashioned oatmeal
2/3 cup cracker crumbs
1 large egg
1/2 cup diced onion
1/2 tsp garlic powder
1 & 1/2 tsp salt
1/2 tsp pepper
1 & 1/2 tsp chili powder



Mix all together using hands.  Roll into balls.  Place into baking dish.

Sauce Ingredients:

2 & 1/2 cups ketchup

1/2 cup diced onion

1 & 1/4 cups packed brown sugar

1/2 tsp garlic powder

1/2 tsp chili powder

Pour sauce over and bake 1 hour at 350 degrees.

And enjoy :)

Couple tips:

If you follow the recipe as is, it makes A LOT of meatballs.  So this is great if you have a large family to feed.

But for us, halving the recipe works just fine and makes plenty for the 5 of us.

Also, this is a great recipe for freezer cooking!  Sometimes I will make up a whole batch, then only cook half, and freeze the other half.  If you are going to freeze the meatballs raw, I would recommend setting them on a cookie sheet and placing them in the freezer overnight.  Once they are frozen, just pile them into a freezer bag marked with the date and freeze them for up to 6 months.  The sauce freezes great too.  Just pour it into a freezer bag and freeze.  When you are ready to use it, just thaw it out and cut a corner off the bag to make pouring over the meatballs super easy. 

So that's it!  Let me know what you guys think :)

Lenay's Little Heart

Lenay saw her cardiologist this morning.

We were there for about 3 hours.  Luckily I brought lots of snacks! 

She laid very still for her echocardiogram.  I was shocked!  It takes about 25-30 minutes so thats a long time for a 2 year old to sit still.  But they had cartoons on and Mommy was feeding her little princess grapes (literally) so that helped.

She also tolerated her EKG extremely well.  Another shock.  A test that should take a total of one minute usually takes more like twenty along with the help of several adults.  This time, she acted very interested in the whole process, and then even helped to attach and detach the cables when asked!

She's such a big girl.  But I mean come on, she is two now.

Our doctor peeked his head in after he reviewed the tests and told me he needed to get more blood pressures on her.  He wanted pressures on her arms and legs.

She has had elevated blood pressure for a while now, due to the increased pressure gradient in her aorta from the obstruction, and we knew this.

But it dawned on me today that I have never asked what her pressure should be.

Turns out her top number should be right around 100.

And hers is consistently in the 130s.

The good news is that according to the pictures from the echo, her heart is unchanged.  It is no better, but it is no worse.

We thank God for this, because if it was any worse, meaning any thicker, then we would be talking more surgical intervention.

But since it is no worse, we can continue to play the waiting game.

Patience.

And since we are in "uncharted territory" as the doc said today, we can't really know how long it will take.

He is concerned about her pressures, so he prescribed a blood pressure medicine for her today.

She is now on 3 cardiac meds.

We will go back in a week for blood work to see how she is reacting to the new med, and then we will see him again in 2 months to see where we are with her blood pressure at that time.

The funny thing about Lenay is that you would never know she is a heart baby.  I've had several medical professionals read her chart and then tell me they are shocked when they see and observe her.  Because she just doesn't let it get her down.  We could all take a lesson from her. 

I mean just look at her.  Singing and snacking while she waits.

Love you babe.  I am so blessed.