My Changed Heart

Several years ago I was sitting on a rock that was jutting out of a river in the rain forest of Guatemala.
I had just come from an impromptu swim in the river, and as I sat on the rock drying out, I thought about my life.
I was quite certain that I had everything I needed in life.
I had a good job.
I had great friends.
I had a supportive family.
I was able to travel and see new places.
I was involved in what seemed to me then, the most important thing I could ever be doing: humanitarian work.
I was being pursued by a handsome, older dentist.
I was in great physical shape.
And as a side note, I had great hair.
I'm sure I have a picture...hold on a second while I find it.

Up to that point in my life, I don't think I had ever been more content.
And while marriage and a family would have been a great addition, I knew I didn't need it to be happy.

* * * * *

Yesterday Emily experienced a breeze for the first time.
It was warm enough that I finally dared to take her outside.
We stood on our front porch for a few minutes before we braved the big world of the street in front of our house.
I carried her in my arms, and watched her as she looked at the world through eyes that were as wide open as she could get them.
Every time a breeze blew across her face Emily would catch her breath and reach her arms out and draw herself closer to me.

Today I watched as Emily's eyes followed a flock of newly hatched chickens.  She wouldn't break her gaze away from those chicks for anything.

Tonight as Emily and I were snuggling in the rocking chair before bedtime, Jason came in to give Emily her medications.
Emily opened her drowsy eyes when she heard her daddy and sat up in my lap.
She watched him intently as he put the medicines through her tube, and when he left the room she stayed with her eyes fixed on the door.
After watching for a few minutes she decided that her daddy wasn't coming back.
She turned herself towards me and snuggled back into my arms.  She put her binky in her mouth and within minutes had drifted off to sleep.

* * * * *

When Emily was first born I was afraid to let myself love her.
The first 36 hours of her life had been more traumatic on me than anything else I had ever experienced, and I still wasn't sure that she was even going to live.
If I let myself love my baby I was afraid that I would never be able to endure the heartbreak of losing her.

* * * * *

Our hearts are where the greatest miracles occur.
And as long as our hearts are open for whatever it is that God has in store for us, whether it's joy or sorrow, it could be that a breeze on a daughter's face becomes infinitely more beautiful that a river in the middle of the Guatemalan rain forest.
It could be that a flock of baby chicks makes up for the hair that has turned prematurely grey due to the stress that life has been, and the love a baby girl feels for her daddy is a result of the best kind of humanitarian work there is.

I'm grateful...more than I will ever be able to say...that God took a chance with my heart.
That He trusts that I will continue to find a way to put the broken pieces back together.
And I'm most grateful that he gave my baby girl's heart a fighting chance.

The New Normal

Morning sickness.
Not me.
Emily.

This is Jason's explanation for the reason our little lady is still throwing up.
We had 12 days without it, and we were hopeful that Emily had grown out of a phase.
It was not to be.

For a week her schedule was every day.
Right now she's on track for every other day.
We plan our lives around her schedule.
When she throws up right when we take her out of bed we know that she will probably really throw up at some point during her next feed.

This morning she has a doctors appointment during the middle of her feed.
Call me crazy, but I don't want Emily throwing up while the doctor is trying to measure her head for a helmet.  (Last time she threw up she cried and her entire little body shook for 20 minutes.  It's not pretty.)
I'm going to change her schedule and feed her early, getting the throwing up out of the way, and then she should be good the rest of the day.

Sunday night I told my dad that my prayers in this regard were not being answered,
If they were she would not throw up.

Don't say it.  I know.  Kids throw up.  And if that's all it was I would be okay with it.
But the experience traumatizes my baby every single time.
I'm not okay with that.

My dad suggested that perhaps I needed to change what I ask for.
And so sometime this morning, between two and three when I couldn't sleep because of a migraine that is lasting way too long, I prayed and said, "If she's going to throw up, would you please, at the very least, help her to not be traumatized?"
We'll see what happens.

How is it that I can write an entire post about throw up and you're still reading?
Are you?
Still reading?

I hadn't planned on this post.
I thought of a story I wanted to tell you ... a really good story, and I had the post written in my mind.
I was excited to sit down at my laptop and write it out.
But then I was hit with the migraine from you know where, and that story is gone.
Seriously.
I can't remember even a little bit of what I was going to write about.

Here's something.
Yesterday I took three of my nieces to the store with me.
I told them that if they didn't ask for anything I would buy them a treat when we got to the check out counter.
Hah.
32 seconds into the shopping trip we passed the St. Patrick Day display and it was downhill from there.

"But Noelle, I don't have anything green."
"I need this for school.  You don't want me to get pinched do you?"
And on it went.

"Shoes!  Noelle, I need new shoes."
"Isn't this dress beautiful?  I really need a new dress."
"Can I have this and a treat?"

At one point I caved and told them that they could choose between a treat or a St. Patrick's Day headband.
My niece Gabi who is 7 carried two headbands everywhere we went debating on which one she wanted more.

"Noelle, I can't decide.  Can I have both?"
I said to her, "You really want two headbands?"
She didn't say anything for a few minutes and then asked, "So, when you said 'you really want two headbands' does that mean you are going to buy both of them for me?"

Here's how it ended up.

Gabi got two headbands.
Sami got a green shirt.
Erika got one headband and two candy bars.

I'm weak.  And now really behind schedule.  Have a great day!

A Pet Peeve

To

Too

There

Their

Are

Our

Know

Now

And on and on ...

My honk...I go batty sometimes when I'm reading.

You might as well highlight the improper use of the word in fluorescent pink.

There.

I've said it out loud.

* * * * *

Once in a while I have emotion that overwhelms me.

Sometimes it's happiness, sometimes it's hurt or sadness, and sometimes it's anger.

It scares me because I'm not an angry person.

Today, for a little while, I felt anger.

In the middle of the afternoon I stood up and handed Emily to Jason.

I walked to the cupboard, took out one lone yellow plate, and opened up the back door.

I stood on the patio and debated for about .25 seconds before I threw that plate as hard as I could against the concrete.

You know what?

I felt better.

I need more plates.

Not too long after (notice the proper use of the word too) Jason quietly went out and cleaned up my mess.

In the Last Six Months Emily Has...

...spent 86 days in the hospital

...had over 75 chest x-rays

...been put on a heart/lung bypass machine twice

...had three open heart surgeries

.. had one massive sternal infection

... had four bouts with necrotizing enterocolitis (an infection in the bowels)

...had two PICC lines

...been treated for c-diff (a bacterial infection in the intestines)

...been sent to the hospital once in an ambulance

...had 10 NJ tubes placed into her intestines

...had 5 echocardiograms

...had 8 different rooms in the hospital

...had one ph probe test

...had 3 swallow studies

...had 4 blood transfusions

...been intubated 4 times

and

had more IVs and blood draws than we can count.

But today...

Today Em's cardiologist told us that her heart is stable...

...that it sounds great...

...that it's likely she won't need her next surgery for four or five years,

and that he doesn't need to see her again until she's a year old.

We have other hurdles to cross and other battles still to be fought with our little miracle,

but our sweet baby girl has a heart that, for now, is working like it should.

And this mommy's heart can finally rest easy for a little while.

Once In A While...

...the perfect image comes along.

Even when all you're doing is sitting in an exam room waiting for your doctor.

Once There Was A Time I Made Cookies

I call my sister for everything.  (I'm a triplet with a girl and a boy.  The girl = the sister I'm talking about.)

Here is a picture taken many years ago:

If we need a babysitter...

If I need someone to run an errand for me...

If I don't want to change the sheets by myself and Jason isn't around...

If I don't want to go to the store by myself...

If I need a pedicure partner...

If I need a Coke to cure my migraine...

I think you get the idea.

The other night I called and asked if I could borrow something...I can't remember what.

I told her that Emily and I would come over when she got home from work.

"My roommate is there with her boyfriend.  I'll come to your house."

Poor Becca...she lost me as her roommate when I got married and she hasn't been the same since.

She brought me whatever it was that I had asked for and saw that I was going to make icing for some sugar cookies.

"Want some help?" she asked.

I did, as a matter of fact.

I had three icing recipes and I wanted to try them all to find my favorite.

We each used a different recipe and asked Jason to taste them.

When it came right down to it, I didn't like either of them so we threw them away and started over.

Four rounds of icing later we found one that all three of us agreed on.

Becca is so patient with me.

She would have used the icing because in reality it didn't taste bad, but I was looking for the wow factor.

Wow factor is important when it comes to sugar cookies.

Here's the finished result:

I took this picture with the Instagram app on my iPhone.

I kind of like it.

I think Becca and I should go on Cookie Boss...

Except that there is no Cookie Boss.

Shame.

(Becca iced all of the pink ones in the same time it took me to ice the yellow ones.)

((I have a problem with OCD))

Em played with her three favorite things while Becca and I were busy: her binky, her giraffe, and her feeding tube.  That feeding tube is going to be the death of me.  

Anyway...

There's no real reason I told you about the cookies...

...just thought you should know that once in a while I step foot into the kitchen.

On Being A Heart Mom

There's an article in the latest People Magazine that talks about a little girl born with a heart defect: hypoplastic left heart syndrome.  The writer of the article called the heart defect 'very rare'.  I think 'very rare' becomes relative, depending on your circle of influence.

Hypoplastic left heart syndrome means basically that your child is only born with half a heart.  It means that your child will undergo multiple surgeries to postpone the inevitable of a heart transplant.  It means that you as the parent will more than likely outlive your child.  The oldest living person with this heart defect is only in his 20s. 

In my world, HLHS is the most common heart defect I see, and it makes me sad.

Over the weekend I went to a dinner that is held annually for heart moms.
There were over 100 women there, all who have had a child or children born with broken hearts.
Almost every person I met asked the same question: "Is your heart baby an angel or still living?"

I know of four little girls who have the same heart defect as Emily.  All four of their mommies have been told that they have their daughter as long as they have her.  There is nothing more that can be done for them, and that at some point they will lose their fight against their heart defect.

One mommy is facing that reality a lot sooner than she planned on.

At the dinner I sat at a table with three other women.
Two of them have had to bury their babies.
The other one told me that she is fully aware that at any point her son could lose his fight.

I just stopped typing this post to read a text from a friend, another heart mommy I met during Emily's last hospital stay.
She was letting me know that a sweet two week old baby girl is more than likely losing her own battle and my friend wasn't sure if she should go and give the mom a hug, or leave her alone for now.

As I looked around the room Friday night, and watched the faces of all of these beautiful women, I knew two things:

None of them asked to be a part of this group, and every one of them are fighting their own battles for their baby...fighting every day of their lives.

If there is a blessing in joining the heart mommy group, it's that every single day I find strength in these women who are fighting.  I find joy in their successes, and I mourn with them in their losses.  And I'm honored to associate with some of the bravest women I will ever know.