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.

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.

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.

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.

Aneurysm

That's a scary word.

And its become all too familiar a topic of conversation in our house here in recent times.

In the last four years, four of my family members have had aneurysms.  Three of which were cerebral, one aortic.  All from my mom's side of the family.

The first one was a shock.  My uncle, 4 years ago.

The second seemed all too familiar.  My aunt, 2 years ago. 

The third happened right after the second.  My other uncle, 2 years ago. 

And the fourth was perhaps the most concerning.  My 22 year old cousin, this year.

So, when I saw my doctor for my annual physical last week, we discussed my concerns about this family history I now have.  And she told me she would like to have a look at my own brain and aorta.

Let me tell you this is not good for my hypochondria.

My dad died of AML at age 57.  And you should know that because of that, every time I get a bruise of any sort, I watch it like a hawk to make sure it disappears. 

Kind of morbid, I realize.

So I am looking forward to getting some peace of mind in regards to this aneurysm threat.  In 2 weeks, I am scheduled for a CT scan of my brain and an abdominal ultrasound to check my aorta.

My mom has been tested, and everything checked out okay.  What a huge relief.

I'll be okay too.

Prepared for a Throw Down

Campbell has been doing great with her eating! 

I am so proud of her :)

We've been having ice cream at least 3 times a day.

Even so, I've been dreading her gastroenterologist appointment.

This would be the first time we would see him since the surgical consult, when the other doc vetoed his decision that Cam needs a g tube.

He wouldn't be happy about this.

And honestly, I'm a huge chicken.  I made sure Eric could meet me so I didn't have to face him alone.

We went in prepared.  Prepared to be told off.  Prepared to tell him off.  Prepared to walk out of his office, never to return.

As we waited in the exam room, I had some weird thoughts.

Do we still stop at the desk on our way out after we have our big throw down?

Will the other patients hear us screaming at each other through the walls?

Is Eric going to physically assault this doctor?

Do we need a lawyer?

Just then, there was a familiar knock at the door.  Eric and I looked at each other and put our game faces on.  Expecting the worst.

And we could not have been more wrong.

He came in, Campbell's chart in hand, smiling from ear to ear.

Well, I don't know what you are doing, but you are doing something right!

I stared at him, dumbfounded.

I also heard, I am so proud of her!

And pinching her arms, Look at this fat!

Not a word was mentioned about the surgeon.  Not a word about the g tube.  Not a word!

He shook our hands like five times I swear.

He said to keep up the good work, and come back and see him in six weeks.

Eric and I walked out of his office smiling and laughing.

Pretty much the opposite of what I had pictured in my head :)

Sweet Relief

We went to the surgeon's office first thing Thursday morning.

Campbell was weighed.

I held my breath.  As I do everytime I set her on a scale.

The digital scale was flashing as it calibrated her weight.

Blink.

Blink.

18 lbs 12 oz.

Two weeks before, she weighed 17 lbs 11 oz.

I let out the breath as my slow brain was registering the math and the shock.

That is over a pound in just 2 weeks!

That is huge!

Amazing.

God is so good.

I breathed a little deeper as we walked to the exam room to wait for the doctor.

Eric and I were armed with 3 things.

Campbell's growth chart, courtesy of our pediatrician.

Her speech evaluation, which Campbell scored very high on for her actual age, not adjusted.  (This is a big deal for a preemie.  Preemies are measured by their adjusted or corrected age until they turn two.  So the fact that she is doing so well for her actual age is very exciting for us.)  This would help to prove she has good cognitive function.

Her developmental evaluation.  While she does have a couple delays, she has improved greatly since her last eval a year ago.  Last summer, her adaptive care domain was at 100% delay.  Now, it is only at a 35%.  And in order to even qualify for Early Intervention services, kids must present with at least a 30% delay.  Therefore, 35% is very low on the spectrum.  This eval would show that she is really coming along with her milestones and catching up.

(I do want to point out that it really was God's perfect timing in all this.  We had these evaluations scheduled months in advance because Campbell's annual IFSP meeting is coming up in July.  It just so happened that her PT, DT, and speech evals fell right in between the gastro appt and subsequent surgical consult??  Evals that would provide crucial and imperative information regarding her development??  Looking back on all this now, I am just completely amazed by how He worked all that out for us.)

The surgeon came in.  He remembered Eric right away from when he operated on Lenay almost 2 years ago.  He repaired her inguinal hernia when she was still in the NICU.  I found it absolutely amazing that he remembered him since he has literally operated on over 15,000 kids.

He studied Campbell.  He studied the paperwork we presented him.  He looked at her growth chart for a long time.

Well, she's not excelling in her growth now is she?

Definitely not, I said.

I explained that she had been sick before her last gastro appointment.  And we pointed out her whole pound gain in 2 weeks.

He asked about her milestones, and we pointed to the evals, showing that she is making strides and catching up.

He looked down at the chart again.  Then took a long look at Campbell, who was chomping on a Ritz.

Well, I think she's bought herself a pass.

I felt myself sit up a little straighter as the weight lifted up off my chest.

I wanted to kiss this man.

Now, she has no margin for error.  She needs to continue to gain weight at a steady rate in order to keep me away.

Got it.  No offense, but we hope we never have to see you again.

None taken.  I get that a lot.

He thanked us for bringing in the paperwork.  He had referred to it throughout our visit as being very helpful information.

We walked out of his office in complete and utter relief. 

No g tube for this girl.

And so we headed down to the Spotted Cow to buy her a big cream cheese cinnamon roll.