Tuesday, August 30, 2011

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.


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.

Monday, August 29, 2011

Cam's GI update

Campbell went back to see the gastroenterologist last week. 

She gained a pound and a half in six weeks!

She is now just shy of 20 pounds.

He said I don't know what you are doing but it is working!

I said we are doing ice cream three times a day :)

He thinks that if she continues on this path she may actually be on the growth chart here very soon.

I am just absolutely amazed by her.  A short couple months ago they were talking about putting a g tube in her.  And just look at her now!  She is doing such a great job eating.

God is so good.  Our prayers were answered :)

We also saw the pediatrician last week and it was a big day for Miss Lenay.  She is now in the 10th percentile for height and weight!  Who knew something as simple as gracing the growth chart would be such a milestone?  The things we take for granted when we have a healthy baby.

Lenay goes in to see her cardiologist tomorrow.  She will have an echocardiogram and EKG.  We will see how that little heart of hers is doing. 

Praying for more good news.

Sunday, August 28, 2011

I Will Carry You

I just read the most beautiful book.

Its called "I Will Carry You" by Angie Smith.

Angie tells the true story of she and her husband Todd's 4th child, a daughter they named Audrey Caroline, and how they found out during a routine ultrasound that she would not survive beyond birth.  She had conditions that were deemed "incompatible with life."

It was recommended that they terminate the pregnancy.  But they made the decision to carry the child anyway.

Their story was heart wrenching.

Angie and Todd never wanted to give up on their daughter.  Their faith in God was strong as they prayed for a miracle.

Audrey Caroline lived for two and a half hours after she was born, which was a miracle in itself.  She was tiny, weighing in at only a little more than three pounds.  And she was beautiful.

I believe this story would hit home with any mother. 

Unfailing and undying love for your child.

From the moment it is known that she exists inside you.

And the grief and loss when the unthinkable and the unexplainable happens.

It was God's perfect timing that this book was placed in my hands within the week of the anniversary of the loss of our second pregnancy.

8/28/07.  A date I have tattooed on my body in memorial of a baby we never had the chance to meet.

We sisters in Christ know that we will see our babies again someday.

Todd Smith is in the Christian band, Selah.  And they wrote this song for Audrey.

Friday, August 19, 2011

August Chaos

The most important events in our lives all happen in 9 days.  Our three children's birthdays and our wedding anniversary.  Throw in a trip to Vegas and the start to a new school year and you can get a glimpse into our crazy life :)  Oh, and why not add a CT scan and abdominal ultrasound?

Noah turned 7 years old.  He wears size 10 jeans.  The kid is gigantic.  :) 

He had his friend party at a Chiefs game.  We had 7 kids.  And 6 adults.  When I was planning this out, I thought that was a good kid:adult ratio.  Turns out a few more grownups might have been nice :)  The kids had a good time though.  Noah got to throw out the first pitch and he thought that was pretty cool.  The weather was perfect and it was a fireworks night.  So fun :)

Eric and I celebrated our anniversary by going to the Miss Marigold Pageant rehearsal (super romantic I know) and out to dinner at Granite City, my fave.  We also celebrated the week before by going to Las Vegas with 6 of our closest friends.  We had a lot of fun, but were glad to get home.  Especially since the flight home was a little scary.  On our descent into Peoria, the guy across the aisle from us had a seizure and passed out.  People were panicking but luckily there was a nurse on board to help.  Keep in mind this is happening while we are going down.  I think the pilot may have been a little rattled by this medical emergency, and we hit the runway hard (I don't want to say we crash landed...but it was rough) and then the pilot was putting on the brakes but we were still racing down the runway at what seemed like full speed.  We were looking out the window at everything flying by, thinking are we ever going to stop?!  We did, just in time, but it was seriously frightening.  Never so glad to be back on the ground and in one piece :)

Lenay and Campbell turned 2 years old.  2 years old!  We did a family party for all three kids.  I said gifts were optional, yet now my house is somehow filled with new toys?  Its crazy how spoiled my kids are.

I made a new video for the girls' birthday and put it on youtube.  You can view it here.

Noah started the first grade this week.  He loves his teacher, loves going to school all day, loves riding the bus, loves lunch and recess, and loves earning "Kober Bucks."  I'm so glad :)  I just pray that it continues.

Last week I went in for my CT scan and abdominal ultrasound.  I was thankful that Eric was able to get time off work to go with me.  The ultrasound was no big deal. 

Have you ever had an ultrasound before? The tech asks me as I pull up my shirt.

Um, tons.

This was different than anything I've had in my life though.

As she starts the sono, Eric leans over to her and says:

There better not be a baby in there.

We laughed.

Next was the CT scan.  They had to start an IV, which is never easy.  They ended up calling in the veteran, and she got it on the first try.

They told me that when they inject the dye, I would feel a warm sensation all over, and it would feel like I peed my pants.  Nice.

I went through the machine 3 times.  Once before the dye, once with a little dye, and once with the bulk of the dye.

What a weird feeling.  I mostly felt it in the back of my throat.

We went out for bagel sandwiches and headed home.

I got a call the next day from my doctor.  When I saw the caller ID, I was initially worried.  See they had told me it would be 3-4 days before I would hear back since it was such a specialized scan, and I know from past experience that when they get back to you right away with results, it can be bad news.

I was wrong.

No aneurysms!!  Woo hoo :)

We've got more craziness coming up.  The girls will see the pediatrician, Campbell sees her gastroenterologist, and Lenay will see the cardiologist for an EKG and echocardiogram.

Will keep you posted.