Eight Months Later

Dear Baby Girl,

Today makes 8 months you've been on this earth.

The journey you've had is more than some people go through their whole lives.

You are the strongest and bravest person I will ever know.

I love you and I'm so grateful that you chose me to be your mommy.

A Reminder For When You Forget

Dear Sweet Baby Girl,

Don't ever forget that you are ALWAYS in His care.

Painting by Simon Dewey / Image found here

At Five Months...

My Dear Baby Girl,

At this very moment you are being held in your daddy's arms.
He is rocking you for a few minutes before he puts you to bed.
You have a tendency to put your arms over your eyes when you are about ready to fall asleep.
Tonight, whenever Daddy talks to me, even when it's a whisper, you move your arm and look at Daddy.
He apologizes for talking and you put your arm back over your eyes and go to sleep.

When you were just a new baby you loved to cuddle all of the time.
You still love to cuddle but only to a point.  When you're ready to really fall asleep you prefer to do it on your own, stretched out in your bed.
I hope that you will always let me cuddle you, at least a little bit.

In another week we will have had you home for longer than any other point in your life.
You are such a good baby.
You only cry when we have to clean out your nose or replace the tape on your feeding tube.
You usually sleep right through the night, and when you are awake you smile and talk.
Last night you laughed at me.  It was the most beautiful laugh I have ever heard.
I kept singing to you and you continued to laugh.
I laughed too, and then cried a little bit because there was a point not too long ago where I believed you wouldn't live long enough for that to happen.

Your little body has been through so much during the last five months, and I think that you are still just tired and trying to recover.
Whenever I watch you sleeping it melts my heart a little bit because I know that your heart is working so hard to be strong.

You still won't drink from a bottle and I worry a lot about that.  I know how much you dislike the feeding tube and my biggest hope is that one of these days you will wake up and decide that enough is enough and drink so well your doctor will tell us we can take the feeding tube out for good.

Baby Girl, now that you are past the worst of things for a little while, I have been able to let go of the really long breath I have been holding since you were born.  Letting that breath go is both good and bad.  Now that I have a chance to let go of some of my fear, I realize that I still have a lot of pain.  When you look at me with your beautiful smile, and see that I am crying, just know that it's because I love you so much.

We still have a lot of hurdles to cross sweet girl.  But Daddy and I will always be there for you, loving you with all of our hearts.

I hope your dreams tonight are happy ones Emily.

All my love,

A Letter From A New Friend

Dearest Emily,

It's a beautiful world we live in, where people who live thousands of miles apart get to actually touch each other's lives through their personal stories that are shared online.  Your mommy just told the story of how she met your daddy online.  Well, I met you online because your mommy writes you letters and shares your story with whoever reads it.  I'm not sure how I came across your mommy's blog, but I'm sure it had God's fingerprints on it.

My name is Kim.  I am not a mommy yet.  We have been trying for nearly three years and it's just not God's timing for us yet.  So we are waiting in Faith.  I hope one day to have a beautiful little girl such as yourself.

I have not purchased any baby items yet because I didn't want to get ahead of myself, but girl have I been tempted!!!  There are so many tiny beautiful little things out there, it's hard to resist sometimes!  Recently I purchased this beautiful handmade hat but wasn't sure who it was going to yet, but I just felt so compelled, I had to have it.  So I ordered it, which goes against my rules.

In between the time I ordered it and its arrival, I met you.  And when I saw your face and read your story, I knew all along that it belonged to you.  I believe that God knew exactly what he was doing when He placed that desire in my heart to make this purchase, not really knowing with certainty who it belonged to quite yet.

Emily you are my little hero.   You are such an inspiration to me every day.  I am always praying for you, that you do not have to suffer and that God heals you very soon.  You have shown me that we all have our battles to fight, and if your tiny little body and heart can do this, so can my big heart and body.

We may never get to meet in this lifetime, sweet little baby, but know that every day I am thinking about you, reading your story and praying for you.  You have some amazing parents, who inspire me through their faith also.  I am so glad I bumped into your family in this virtual world.  You will always own a piece of my heart.

Your Friend,
Kim
Dallas, TX

You Are Loved

Dear Baby Girl,

A little over three months ago you joined our family.  Your daddy and I thank our Heavenly Father for you every single day.  I'm at work today and I'm missing you.  Your daddy is with you though...we don't ever like to leave you alone.

This morning you are in the intensive care instead of your normal room.  I talked to your nurse a few minutes ago.  She had just given you a bath.  She told me that you were not happy when she put your lotion on.  I think it's because you know the lotion she's using is not the special lotion your friend Sandra made you. 

You've had a hard few days sweet girl.  You have been put through a lot of painful procedures, and some of them scared you a little bit.  A few days ago when your daddy was with you they did a really painful test to see if you had any problems with your intestines.  Your daddy stood right by your side and talked quietly to you.  Your eyes never left his, and you knew that he would protect you.  That same day they had to put in new stitches to secure your PICC line (the IV that goes into your arm) and they had to numb your arm to do it.  You cried a little bit, but your daddy held your hand the whole time.  Daddy said you slept in his arms the rest of the day.

A few days later your PICC line started to leak and your doctor felt it was best to try and replace it.  I went with you down to the special procedures room and stayed with you until you were sedated.  The doctors tried over and over again to put your new line in behind your knee but they couldn't get it, and even though you were sedated the doctors knew that you were feeling some discomfort.  They brought you back to the room and I held you all afternoon.  You would wake up and cry every few minutes and I knew that your little leg was still hurting.

Yesterday your surgeon wanted to do an MRI of your heart so he could get a really good look at it before he decided if he was going to operate.  In order to do the MRI you have to be completely still and so you and I went downstairs to the ICU and saw some of our friends on that floor.  I was sad because we were right next to the room where your sweet cousin Lucy passed away, and I really missed seeing her little smile.

The doctors gave you a lot of medicine to put you to sleep and then I left the room while they put a breathing tube down your throat.  You had your pink teddy bear next to you the entire time, and I made sure that your elephant binky was safe with me.  You were gone for three hours and then it took you another hour to wake up.  Your throat hurt you after they took the tube out and it took you a few minutes to start breathing well.  Even though you were asleep we could tell that you were sad.  Your daddy picked you up and rocked you in his arms, and almost immediately your heart beat slowed down and your oxygen levels went back up.  You knew that you were safe in your daddy's arms and so you were finally able to sleep peacefully.

I don't like to see you in pain sweet baby.  I always cry when you are hurting.  But I know that you have to go through these things so that you can get better and come home.  People tell me all the time that it's good that you are small because you won't remember what you are going through.  But you know what you're going through right now.  You know that when you feel something cold and wet on your leg the nurse is going to give you a shot and your body goes tense.  You know that you don't like anything near your nose because you remember how painful it is for you to have a tube put down your nose. You know other things too and even though you might not remember I always will.

When you get older and ask me to tell you stories about when you were a baby I will always tell you that you fought hard for your life.  I will tell you that you went through things that nobody should have to go through, but that you did it perfectly.  I will tell you that you brightened the days of the nurses who took care of you.  I will tell you that your story touched people's hearts.  I will tell you that you had people all over the world praying for you, and keeping you in their hearts.  And I will tell you that you are a daughter of God, and that He loves you.  God is real sweet girl, and I know that before He sent you here He took you in His arms and gave you a long hug.  He told you that it was going to be hard, and that you would go through a lot of pain and suffering.  But He promised you that it would be worth it...that the blessings He had for you would far outweigh the pain.

I promise you that it's true.

I love you Baby Girl.  The love I feel for you  is something that I can't put into words.  If you keep fighting, I will too.

A Reminder For When You Forget

Dear Baby Girl,

Some day when you're a teenager I want you to remember something.
You love your daddy.
And your daddy loves you...more than he's ever loved anything or anyone.

You smile more for your daddy than for anyone else.
You talk more for your daddy than for anyone else.
You love being held and rocked by your daddy.

You are a daddy's girl and I hope that never changes.

A Look Inside Mommy's Heart

Dear Emily,

Mommy shared your story with some of the people in this life who love you so much.  I hope that when you read it someday you'll know how much I love you.

It was nearly 36 hours after her birth that I really saw my Emily for the first time.
As I stood at her bedside I took in every part of her.
Her ears were small...like her daddy's.
Her toes looked just like her grandma's.
Her fingers were long and beautiful.
Her mouth was the tiniest mouth I had ever seen, but it was perfect for her.
She was mine...and she was alive...and I realized that the physical and emotional pain of the last few months, days, and hours had been worth it.

A nurse stood nearby and heard Jason and I talking about our baby.
In a matter of 10 seconds that nurse changed my world.
"You know she's being tested for Di'George Syndrome don't you?"
I did, but I was uncertain of what that had to do with the conversation Jason and I had just had.
Everything we mentioned: the small ears, the tiny mouth, the long fingers...they were all signs of Di'George Syndrome.

Later that night Jason sat on the edge of my bed and held me while I cried.
"Why do they have to take everything away?" I asked in a broken voice.
"For once, why can't they let my baby girl just be a baby girl?"
"Why does she have to be a medical condition every single time?"
And in my mind I was thinking back to all of the ultra sounds we had had...to all of the follow up appointments with the cardiologist...to the echo cardiograms...to the non-stress tests...
Pregnancy milestones that were supposed to be filled with happy anticipation, had been filled with bad news and worry for me...and now, when we were supposed to be filled with peace and joy at the birth of our baby girl, we were filled with dread.

The next few days I healed physically but not emotionally.
I scoured the internet for information about Emily's possible syndrome, and with everything I read, my world crumbled.
If you have any love at all for my little Emily, and if you're reading this you do, don't Google Di'George Syndrome.  I promise it will break your heart, or at the very least, hurt it a little bit.

I knew that Emily's test would come back positive for the syndrome; Jason knew too.
But neither of us shared that with each other until after we knew for sure.
We were standing next to Emily's bed in the NICU when the doctor came and pulled the curtain around us to guarantee privacy.
She put her arm around me and said, "I'm sorry but the tests came back positive.  Emily does have Di'George Syndrome."

Di'George Syndrome holds a wide spectrum of possibilities...from really bad to really manageable.
Although we won't know where Emily falls on that spectrum until she tells us, we've been told that Emily has what they call partial Di'George.  That word partial gives me peace.

In a nutshell...Emily is missing a part of one chromosome.
That small deletion is the reason Emily has her heart defect.
The deletion means that Emily's immune system will most likely be compromised.
The deletion means that Emily will probably have developmental delays: with her crawling, her walking, her talking, etc.
The deletion means a lot of other things too...
And all of it burdens my heart more than I can ever begin to tell you.

It took days...probably weeks...before I could look at my baby girl and see something besides the syndrome.
One night, when the heartbreak was especially bad, I called my mom.  She could barely understand me through my sobs.  She waited on her end of the line until I could get the words out.
My mom has been on the other end of that line more than once.
She's held me in her arms more than once.
She's cried with me a lot more than once.
And more than once my mom has shared with me this simple truth:
"It doesn't matter what Google or the doctors say.  It DOESN'T matter.  Emily will be exactly who God intended her to be."

I've had almost 2 months of loving my baby girl, and I am secure in the knowledge that my mom is right: Emily WILL be who God intended her to be.
However, my heart is still fragile.  The heartbreak is still there...on almost a daily basis.
There are times when I look in my baby's eyes and the pain I feel is so raw I don't know how I can make it through.
The uncertainty of Emily's future eats at me until I think I'm going to go crazy.

Jason has been my rock through all of this.
Jason has no fear for Emily's future.
He barely even thinks about Emily's possible challenges.
He lives in the moment and enjoys everything about it.
And he knows that if challenges arise, we'll handle them.  We'll love our baby girl through them.
And on a very regular basis he assures me that Emily will bring us nothing but joy and happiness.
I believe him.  I do.  But there are times I have to cling to his words like they are my lifeline.

I have hope that one day the pain won't be so fresh.
I have hope that one day I won't feel like I'm living a really bad dream every single day.
I have hope that one day Emily's setbacks will seem like that, a setback, rather than something so much worse.
And I have hope that one day I will feel like smiling every day, all day.

I cling to the good moments like they might never come again, and I thank my Heavenly Father for helping me to recognize them.
I celebrate every positive step my baby girl takes and I thank Heavenly Father daily for my blessings...because they are many.

Not too long ago I worried that if people knew about Emily's syndrome they would treat her differently or love her less.
I've since learned that if anything, people will love my Emily more.  Not because of the syndrome, but because she is Emily...my little fighter, my little angel, and my incredibly huge gift from Heavenly Father.