Friday, January 28, 2011

A quickie surgery update...

I'm having difficulty finding time to update about what is going on with Eslea. Something has happened while we where here for her surgery that is so much greater then us.
But that, I will have to save for later.

Instead, a quickie update....because I must get back to hugging and kissing on a little buggie girl with a newly mended heart.

Eslea has done so well after surgery and seems to be recovering quicker then expected. She has already left the PICU and is on the pediatric floor.
On Wednesday, the surgeon was able to fix....wait for it....ALL THREE HOLES!
This is major.
Originally they thought they could only fix the two smaller holes.
But now, they are fairly certain that the VSD that was so large is patched for good!
Of course, only time can tell but I know how this happened.
How all of it happened.
The quick recovery and the ability to fix all the holes.
It was because so many of you kept her in your thoughts and prayers.
Prayers are greater in numbers.
I thank each and every one of you because I am now close to taking my little baby home with her complete heart.

Now excuse me if you will, the hugs and kisses are waiting... be continued.


Wednesday, January 26, 2011

Eslea's Birth Story

I post this on the exact time of Eslea's birth minute: 10:18am.
As I sit here waiting on my precious four month old who at this very minute is undergoing open heart surgery, I can not help but rejoice in the way she has changed my life forever. It amazes me how much I love this child when there was a time I honestly thought I never could.
So my friends, with that thought I would like to share with you...

the story of Eslea's birth.

How do you begin a story like this? Something that is so hard to put into words. Something that when I look back on it now I still cry. Not for the same reasons, but for the pain I was in and had to face. I have reviewed this story over and over again in my head. I have written it down and rewritten it hundreds of times. What do I share? Do I share it all? Do I confess the darkest emotions and thoughts that I tried to bury deep in the crevices of my broken heart?
It has been 4 months since my baby girl was born and I have changed. So before I begin, I must clarify that some of what you will read may surprise you. I adore both my daughters. Even the thought of losing either of them causes my world to stop existing. Yet, my goal is to recount the exact feelings and thoughts I had during the time it took to finally reach the point of love and acceptance. Although I no longer have such drastic thoughts, I chose to share them because I know that I am not the first parent to have these emotions and I know I will not be the last.

The Before
It took four weeks to reach the point of acceptance. Four weeks from the minute Eslea came into this world. The before was different. I was different.
My pregnancy was relatively uneventful. I had a quad screen which came back negative. The tech did a measurement of her nuchal fold which came back within normal range. We elected not to have further testing, because I thought it didn't matter.
Eslea was my daughter and I knew her already. I had spent hours picturing what she would be like. I knew she would have blond hair and blue eyes like her sister. She would have her daddy's eyes and my lips. Like her sister, she would get breast milk for at least the first year of her life. She would take dance, swim, and gymnastics. She would grow up to be a doctor or lawyer or activist or something equally fantastic.
The only news that scared me was that she was breech and no matter how many hours of crazy yoga poses I spent doing, she was not flipping. I dreaded having a c-section. I prayed about it for the month leading up to her birth day.

The Birth Day
Jason and I spent time laughing and enjoying the excitement of having another little girl to raise. Even having to be admitted into the hospital at midnight struck us as hilarious. Various couples lined up like ducks walking to the maternity ward with our overnight bags in tow. We spent hours laughing in the hospital room talking about what it was going to be like with Eslea. How beautiful she would be. The joy she would bring us.

Finally, the time came. It was 9am and they were wheeling me down to surgery. I remember being scared. Having to go in there alone and not being able to shake the feeling that something was going to go wrong. After what felt like hours, they let Jason in and I relaxed. It was time. It all happened so quickly. Before I knew it, the NICU nurse was standing next to me showing me my baby. I remember telling Eslea hello and watching her eyes look towards my voice. I remember having my picture taken. Then she was gone. And I cried. I missed her. I didn't even get a chance to hold her.

Because of the pain medication after surgery, much of the rest of the day went by in a whirl. But some very distinct events remain in focus. The first is the sound of the clock on the wall reminding me of the time that was passing without me even seeing my baby girl. The next was my husband coming in and out of the room to show me pictures on the camera. I remember him stopping to watch my face because he knew what I would see. He said that he saw it too. couldn't be true. That was not my daughter. Not the one I imagined. Time kept ticking. I have yet to meet Eslea.
Six hours after her birth, the NICU nurse arrives. Jason and I were alone in the room. I knew what was coming. The clock kept ticking.  Although I was yet aware but that nurse, Cathy, was already one of Eslea's angels. Cathy began by explaining that Eslea was receiving oxygen because her lungs had some fluid and she was having difficulty breathing. She also told us that a murmur was found in our baby's heart and most likely she had a defect....a cardiologist was reviewing the test. And then she paused....and said ....that our baby did "show characteristics of down syndrome...but.....she is perfect....and the most beautiful baby I have ever seen."
The clocked stopped. The room stopped. All I could hear was the sound of my own breathe.
Finally, Cathy's words broke the time warp I was in and somehow I heard her say "I know that it's a lot to take in. It's okay to cry. I would cry too." I looked up and her eyes were moist with the tears she was holding back. Time began again. And I cried.
Fourteen hours go by and I have yet to see my baby. It is 1:00 A.M. and I am ready. I don't care how much pain I am in, I have to see my daughter. So many people had seen her, yet I had not. I missed her. The NICU was empty except for one other baby and some nurses. My little girl was in the glass cube on the end. The first time I saw her she was covered in IVs, monitors and bandages. The nurse took her out and handed her to me....and I knew. I saw it. I saw what my husband already knew but was afraid to form into words. Eslea's eyes gave it away. My husband stared at me, waiting to see my response. But I didn't have one. What he couldn't see was the thoughts in my head. At that moment I was thinking that this was not my daughter. I did not know this child. This is not the little girl I had planned on. This was not the little girl I had carried for thirty-nine weeks. They were wrong. They asked if I wanted to nurse her and I said no. I wanted to go back to my room. So I did.

I have cried a lot since my Eslea's birth. But none so much as in those first 24 hours. That first night after she was born, I remember feeling numb. I remember waking up at 3 am and crying. I couldn't stop. My crying woke Jason up and he crawled into that hospital bed with me. He held me while I cried and cried. During those first 24 hours, I mourned my child. I mourned the little girl I was expecting. I yearned for her. I ached for her knowing that she would never come. I hated the people who worked at the hospital. I hated my husband. I hated everyone. I was mad. How dare they try to say this was my child. I wanted my baby. The one I had spent 39 weeks getting to know and rubbing her little head as it was pressed in my ribs. This was not her.

But, through all that, I must have loved her. Because although I couldn't believe that it was my daughter, there was an unseen force that kept pulling me back to that NICU time and time again. There was something inside me that made me want to try nursing and was proud when she took to it so easily. When her sister came to visit, I anxiously awaited Emma to lay eyes on her sister for the first time. I worried needlessly because for Emma, it was love at first sight.

Leaving the Hospital
The day we left the hospital, I was still numb. It didn't seem real. I had to leave without my true baby. I just wanted to be alone and mourn the child I had lost. But instead, I was going home with this new baby. A different one then I expected. One that I was ashamed of and scared of at the same time. Before I left, I expressed these concerns to Cathy. She listened for an hour as I cried and told her some of the shameful thoughts I was having. She did not judge. She had faith that with Jason and prayer, I would make it.
I so much dreaded the process of leaving the hospital with a new baby. It was drawing too much attention to me and this new baby in my arms. The flowers, the balloons, the wheelchair. I hated it all. I was so scared someone would see her. I was afraid to see the look in their eyes. The look of pity or whatever it is I thought was going to happen. We had almost made it into the car before it happened. What I dreaded. An older woman saw Eslea and said "she looks almost fake she is so big." My heart broke. That was the first of what I was afraid would be many comments made about this child....and I cried.
But I must have loved her...because it broke my heart to think that others didn't see the perfection that I saw. That very night I rocked her to sleep and kissed her head before putting her swaddled little body to bed.

The Next Three Weeks
It took four weeks to reach the point of acceptance with Eslea. Four weeks to the day she was born. I spent that time hanging on to dear life as my emotions went on a roller coaster with my thoughts as company. I spent time thinking about the before days. I so much wanted to go back to when it was just Emma and I. What had I done to Emma? What had I done to our family? I felt as if I had brought a burden on everyone.
I fought through so many stages during her first four weeks of life. These stages I refer to as chapters because they are so distinct and clearly defined in my mind. Every night I prayed for just one thing...acceptance. I never once prayed for things to change. I just wanted to accept my baby. I wanted to love and adore her as I did Emma. I wanted to feel like I was her mother.
The first of these chapters was Mourning. The feeling that this was not my child was overwhelming. That my child had died and now I am forced to raise this other person...or this half person they had sent home with me. Something was going to change. This can't be true. Any day now, I will wake up and it will be different.
But I must have loved her...because every night I held her close, I rocked her to sleep and I kissed her sweet forehead before putting her swaddled body to bed.

The Mourning led into the Why Me? chapter. Why?? Why did this happen to me? I don't want to have to take care of my child when I am 70 years old. This is not what I wanted. This is not the family I wanted. How could God do this to me? How could I do this to Emma? To my husband? Maybe...just would be easier if she wasn't here. If she didn't make it. If somehow her heart just couldn't work hard enough to keep her alive. Or maybe, just maybe, Jason and she could live somewhere else. I could go back to life with just Emma and me. This stage lasted the longest. It was the most selfish time of my life. It is also the hardest to admit.
But I must have continued to love her even then. Even when I was so selfish and cruel....because each night I held her, I rocked her and I kissed her head before I laid her down to sleep.

Then came the Why Her? chapter. Why my baby? Why this baby? What had she done? She was so new. She deserved the same chances and life that others would have. Why her? What have I done to her? Is this the life she would chose? I spent my nights whispering in her ear "I'm sorry. I'm so sorry". I hurt for her. I was scared for her.
It was during this stage that I made a decision. I was not going to miss another second of infancy. Despite how I felt, she was a baby. A sweet smelling, soft and juicy baby. For several nights in a row I made myself block out my defeating thoughts and just focused on her. I smelled her. I nursed her. I rubbed her. I took in her sweet baby breathe.

And then it happened. It happened in a split second. I had placed Eslea on the changing table and she was completely naked. I stepped back to look at her and numbness engulfed me. Then she cried and her arms started to flail. She was scared. She wanted someone to pick her up. She wanted me, her mother. And then it happened. Exactly four weeks to the day she was born, it finally came...acceptance. I scooped her up and thanked God for her. For the first time, I told my new precious that I loved her. I whispered it over and over again into her ear. I finally saw her for HER. The same one who I spent nine months getting to know as she kicked and twisted in my belly. It was HER. There was no longer any doubt. My precious baby girl.
That night I did the same as so many nights before...I rocked her, I kissed her, I laid her down to sleep...yet that night, finally, I KNEW I loved her.

Can I say that I no longer cry when it comes to Eslea? No. I still cry. I cry when I think about her future. I cry when I think about her struggles. I cry when I think about the pain I went through during her first four weeks. Yet the crying very rarely comes anymore. Now, I thank God for her every day. I smile...I laugh...and I whisper "I love you" in her ear every night.

We all desire for our children to be happy. For so long, I thought that happiness meant she had to be "normal". I finally realized that she is not meant to be anything more then she is already. A perfect little baby with an extra chromosome. People will notice that she looks different. She may even talk different. Through her they will learn to accept the differences in all people and most importantly, they will learn to love her.

If you have made it this far, thank you.
Thank you for caring enough about our sweet little buggie to read her story.

Edited to add: If you are reading Eslea's birth story for the first time, please leave a comment. I would love to know more about you! Plus, I really like reading comments. If you're interested, Eslea's birth story has been featured in our local newspaper. It includes updated information too. Just follow the link Eslea: Reserved of God.

Tuesday, January 25, 2011


In just a few short hours, it will be time. Finally.

There was a moment tonight in which I almost took a step backward.
Back to the moments of pain and deep fear of what this surgery could mean.

As part of the preparation for her surgery tomorrow morning, I was given a surgical prep wash for Eslea. During bath time tonight, I used this soap to wash her torso. When the smell hit me, it reminded me of the hospital. The smell and the act of washing her was a very sharp reminder of WHY I was that exact moment. Preparing my baby girl for tomorrow. For her open heart surgery. It was also at that moment that I placed my hand on her breast bone. The breast bone that can be felt right underneath her skin. By doing that and holding my hand there, I was able to keep back the tears and the fears that were trying to surface.
Because as scared as I am about what may happen, my little girls needs this surgery.
She is quit frankly a skeleton.
That is not a life for her.
Sickly. Skinny. Struggling to breathe.

In 6 hours I will wrap my baby girl up in her prayer blanket.
I will walk her into the hospital and pray over her as we wait to be admitted.
I will be with her when she falls asleep.
I will wait on her until it is over.

Because now the only peace I have is in knowing...
Knowing that this time tomorrow night...
My baby girl will be in the arms of her father...
Be it her earthly father...
or her heavenly one.

Just a few of the supplies, goodies and items sent by friends to help us get through this next week or so.

Thank you to all that continue to pray.

Monday, January 24, 2011


I am working overtime these days to remind myself to...

because with so much to do and so much going on, it is easy to forget.

I am asking again for my friends to pass this post on by sharing it with their friends.
So that others may read about Eslea HERE and why she needs surgery HERE.
When it comes to my baby girl, I'm not afriad to ask for prayers for her.

Forty-eight hours from now, it will all be over.

I hope and pray that it goes through this time.
I am scared.
I am ready.

Prayers continue for James Eunice

Just a quick post to write that the student I referred to in THIS blog post, his name is James Eunice.
His story is making national headlines.
For up to date information about the search for him, you can go HERE to the Come Home Safe James Eunice page on facebook.

Thank you.


and those that miss him...

Sunday, January 23, 2011

Underneath it all (and a surgery update)

(NOTE: Before viewing this post, please be aware that some of the pictures may be disturbing to some people. Do not scroll to view the pictures before reading what this post is about.)

It has been almost a week since I last wrote about the surgery.
I have honestly not known how to put anything into words.
It is disappointing and sometimes discouraging not to have it over with by now.
I was so ready to hand my daughter over to people I have never met and allow them to stop her heart.
I had found my peace and then lost is so quickly.

Eslea's surgery is scheduled for this upcoming Wednesday.
By 8:00 A.M. on Wednesday morning, those same doctors and nurses that I have still yet to meet, will be working to heal my buggie.

We have started getting ready..again.
More prayer.
More packing.
More everything.

I was thinking how blessed we are to have so many friends and caring people that are keeping our little girl in their thoughts and prayers.
So, I decided to explain (and show) a little more about exactly why the prayers are so very needed for our buggie.

Eslea is now four months old.
She was born in September of last year with congential heart defects.
Three to be exact.
Her ductus arteriosus has not closed since her birth (PDA). Her second hole is caused by an atrial septal defect (ASD); a form of congenital heart defect that enables blood flow between the left and right atria via the tissue that separates the left and right atria. She also has a ventricular septal defect (VSD) in the wall dividing the left and right ventricals of the heart. This hole is the largest and takes up about 70% of that tissue. She is in congestive heart failure.

Basically, all that to explain that her lungs and heart are starting to fail. Her lungs have to work overtime to pump the blood that the heart just can not push through. She is still under 10 pounds yet she is almost 23 inches long. She is on three types of heart medication.
Did I mention, she is only four months old?

There are so many other families that have been through this before. Yet others, like me, did not know how often this defect occurs. Almost 8 out of every 1000 newborns are born with a congential heart defect. That is almost 35,000 babies a year.

I do not write this post for those that know this information such as those parents that have been through the same. I do this for those that do not. Those people out there that do not realize what a struggle these babies go through every day just to take a breath.

I am posting pictures of my baby in just her diaper. I only have four to show becuase it is so very hard for me to see her this way. I try to keep clothes on her all the time. Not only because she gets cold so easily but because I cry when I see her bare for too long.
The fact is, even the pictures can not truely reflect her appearance in real life.

With that said, here is my buggie, underneath it all....

Well, that's her..all of her.
I hope you can now see why I value every prayer sent her way.
She, just as all the litttle blessings like her, need them.

Two more days.



Tuesday, January 18, 2011

Bumped...and torn

Our surgery has been bumped...again.
I'm having a difficult time processing this.
For those who have been there, you know how this feels.
I have spent weeks preparing for the day my daughter has open heart surgery.
I have prayed.
I have begged for others to pray.
I talked to others who have had similar experiences.

Yet this, THIS, I did not prepare for.
It took so long to get to this place.
This place of peace.
Knowing that I was turning my daughter over to HIS care.
To the guidance of doctors and nurses whom I had just met.

I don't know if I can do it again.
The fear and anxiety came rushing back in the second we were told that her surgery would not be tomorrow.
I feel like I am starting all over.
How do I get there again?
How do I ask for help again?
I feel as though I have let the people down who have been there for us.
Those who have prayed for us.
Those that have driven a great distance to sit with us during the surgery.

Mostly, I feel as though I have let down my little buggie...

I am torn.
Torn between being angry that yet again we must wait to heal her...

and between the urge to pray for the baby that did have surgery today.
The baby whom at this very moment is STILL in surgery and thus causing Eslea's surgery to be moved.
I do not know the child. I do not know if it is a boy or a girl.
All I know is that there is a baby who is only 4lbs that has been in open heart surgery since eight am today. That baby, that baby needs my prayers too.

How do I handle that?
What do I feel?

I am confused.
I am mad.
I am sad.

Sometime tomorrow, we will find out just when Eslea can finally have her heart fixed.
Until then, we wait.


One day...standing on the threshold

Our bags are packed.
My eyes burn at times with the tears that want to surface but I keep them away somehow.

I'm going to miss Emma.
At the same time, I am grateful for those that will take care of her while we are gone.

I am also thankful for the support of those that have kept my buggie in their thoughts and prayers.
Thank you.

As I stand here on the threshold of her surgery, just one day now, I reflect on the vast difference of love I feel for her as compared to the day she was born.
Her birth was so hard for me. Accepting the fact that I now have a child with special needs was a true leap of faith. It's a leap I will never regret.

I have always told people that my first child, Emma, taught me how to love. Before her, I never knew how to truly love. I never understood how great the love parents have for their children. Most importantly, she taught me how my heavenly Father loves not only me, but everyone.

Eslea taught me something so much more. Her birth opened my eyes to the different types of people in this world. Through her, I see people that I never noticed before. Through her, I see more clearly how HE sees us...

Emma taught me how to LOVE.
Eslea taught me to love EVERYONE.

Again, thank you for the continued prayers for Eslea and for our lost student...James.

Sunday, January 16, 2011

A Prayer Request ( and a baby dedication)

It has always amazed me how things in life tend to flood in all at once.
Eslea's surgery is just 2 days away.
I am spending the time praying and packing and everything else I can think of to get ready for it.

At the same time, I am sad for other reasons.
One of my students and his family also is in need of my prayers.
I feel that I am being pulled to be there for them and yet I can't.

But I can make a prayer request or two...
If you are reading this, I am asking you to pass it on.
What I mean is share this with your friends and family and anyone else.
Because there are two kiddos right now that need your prayers.

The first, is my student, James (scroll down to see his picture).
He is 17 and a senior at the high school at which I work as a counselor.
I feel blessed to have known this brilliant kid and his parents for two years now.
As of Saturday morning, he is missing.
He went hunting on a local pond with a friend and did not return home.
His friend was found ( he also needs your prayers..for strength) but James still has not.
That was almost three days ago.
My town is turning out for prayer vigils whenever possible.
Yet, those who can not attend those meetings can help also.
Through prayer alone.
Pray for him and his family. For their strength.
Prayer, like so many other things, makes such a great impact in masses.
Even if you can not be a part of the prayer meetings, you can take faith in knowing that your prayer will be lifted up to join in with the thousands of others.

The second request, is for my buggie...

today was her baby dedication.
I thought it was important to have this done before her surgeries.

Thank you to my friend Leslie for taking pictures. Thank you to Pastor Chris for everything!
I used to feel uncomfortable asking for prayers for me or a family member. But it is amazing how much that has changed since Eslea's birth. I will not only ask for her prayers, I will beg.
I'm beginning to find peace with the surgery now and it is only two days away.
Yet that peace has come only because I know that others have been praying for her.
I thank you for that.

I celebrate today...the GIFT of her...a gift from my heavenly all of us.

Thank you all again for the prayers.
Not only for my buggie but also for my student and his family.


Two real beautiful kiddos that need you.
Prayers mean so much right now.
Thank you.

Friday, January 14, 2011

Skipping a beat (4 days...)

No. I still know how to count backwards.
It is the date that has changed.
This morning Eslea's surgery was moved up one day.
To the 19th.
One less day I have to worry.
One less day I have to fight off the negative thought buggers.

Butterfly kisses between sisters.

I am so amazed and blessed by the show of support surrounding us.
Sometimes in life it takes an event to remind you of what and who are the most important things in your life.

Like friends, family and caring coworkers.
I am blessed to be surrounded by all three.

Today, some of the most considerate and God fearing people I know gathered together at my place of work for a prayer circle. There were 15 of us.
I do not want to write their names, but they know who they are.
I am eternally grateful for them. For lifting up my Eslea in prayer and continuing to pray for her.

I have been struggling to hand this one over to Him.
It's harder when it's your baby girl.
I am the mother. I am the parent.
I should make things better.
Yet there is a parent greater then me.
A Father who knows what is best.
That prayer circle today helped remind me of that.
My load feels lighter.
I trust Him.

With only four days left till her surgery, I want to celebrate the LOVE of those that surround her...

I do not know why I find this so scary. It feels like the hardest thing I have ever had to do.
Thank you to everyone that continues to show support to our little girl.
Thank you for the comments and the prayers.