Movie in the park...

We went and saw the Wizard of Oz tonight and one quote from the film stood out among all the rest -

"A heart is not judged by how much you love; but by how much you are loved."

I love you Sawyer.

All the places Sawyer went

Before I forget, I wanted to write out a list of places I had been over the 7 months I was pregnant with Sawyer. Wherever I went, he went. So here we go...

The beautiful park in downtown Morris. We went a lot with Sadie when the weather started to get nice and before I went on bedrest.

You were in a parade! In March, we rode the float in Manhattan's annual Irish Fest parade and we won the biggest clan award.

We also went with Aunt Mary and Jacob and your sister to the Little Red Schoolhouse. It was muddy and wet, but we braved the trails and had a really special time together.

At the end of March, we all went to our very first Easter Egg hunt. Sadie danced with you and Mommy to the fun music they played.

It was a really warm spring, so we went to the zoo with Grandma, Aunt Mary, Jacob and Sadie in early April. It was a lot of fun and we always had to stop in our tracks to find a bathroom. It was right around this time that I really started to show with you. I was so happy, maybe glowing is the right word instead.

One of the last places Sawyer went with Mommy and Daddy was to an Alan Jackson concert. We went just two days before we found out there was something wrong. You kicked along to the music while Mommy and Daddy danced and held each other close. I'm so glad we all got to dance together.

Most of all, we spent a lot of time at University of Chicago - visiting the doctor to always check and see how you were doing. I'm so grateful for all the ultrasound pictures we have of you - it's almost a complete documentation of every month of your life in the womb. A lot of mothers don't even get that. And I did. We're one of the lucky ones.

I love you sweetheart. And everywhere we go now, we know you are there with us. Forever.

Happy one-month birthday

My beautiful angel would have turned one-month-old today.

Would I have been able to hold him yet?
Would I have him held against my breast, nursing his fragile body into strength? Would his isolette be decorated with bright colors and warm blankets?

Maybe he would have smiled for us by now...

Instead, we will mark this occassion by visiting a monument company and picking out a headstone for our dead baby. Happy birthday Sawyer, here's a slab of granite.

Everyday, I pray to God for you. I tell him to let you how sorry I am for what happened. I miss you and even though my heart tells me that you're safe - my soul, my entire body - needs you here.

I want to see you just one more time. Just once more, God. Please give me that. I want my baby back.

I want so many things for him. Our dreams and hopes for our first-born son, our sweet baby Sawyer - are gone.

Broken hearts

I want to sleep forever.

We will always be together that way.

I could finally see your eyes.
Are they blue?

I'm blue. My heart is blue.
It's broken, just like yours.
But I keep living.

How is it possible that I'm here and you're not?
It's all wrong.

Take my heart.
Take me instead.

I want to die.

Sawyer's diapers

The other day, I finally received from Babies-R-Us a coupon for a free mega-pack of Huggies diapers. They have a promotion for "Rewards" card users that I couldn't pass up when Sadie was still in diapers - Buy 10 mega-packs of Huggies, get one free. How could ANY mom pass that offer up?

I was so excited because after purchasing the last-ever pack of diapers for Sadie, I realized that it was actually (finally) the 10th pack. I could use my coupon for Sawyer when he gets here! Hooray!

A week after we buried our son, and 3 weeks late of course, the coupon shows up in the mail. And it showed up with a looming expiration date. July 1st. July 1st?

I stuffed it into my coupon book, knowing that I had to go in there and use it, soon. I wasn't about to let a $45 box of diapers slip away from me.

Last week, I met my sister for dinner. Right across from Babies-R-Us. She was running about 20 minutes late. And I decided in an instant that I was going to go into that store and buy that box of diapers. "We can use them for our next baby," I thought.

The first thing I did was park in "Expectant Mother" parking. I should still be pregnant, and in my eyes - I was completely ripped off. So screw all the other "expectant moms" out there. I was parking in that spot and I didn't care.

I walked in and walked straight to the back and quickly picked out the best box for the value. Size 1 diapers, 216 of them - for free. I pushed my cart quickly through the store I loved to spend hours at a time at, looking through all the infant sleepers and onesies. I remembered holding outfits over my stomach and asking Erik if he thought they were just as adorable as I did...

Then, there I was at the register.

My heart was pounding and I literally started to sweat at that moment. I was scared shitless. The woman behind the counter just scanned the diaper box while I fumbled through my coupons to find my free diaper redemption. Tears welled up in my eyes and I blinked them back. "Please ask me about my baby. Ask me why I'm buying 216 diapers for no one."

"Do you need any batteries for mobiles, toys or maybe a bouncy chair? Anything at all?" she asked me cheerily.

I wanted to tell her, yes. Please. Give me a hundred batteries. I want to hear the soft sounds of the ocean coming from Sawyer's bouncy chair. I want to tuck him into his warm blanket while the soothing music from his crib's music player wafted over his tiny ears. I wanted my baby.

"No, not right now," I blankly said.

And I left.

Later when I got home, I grabbed the box out of the minivan (that we purchased for our expanding family. Another reminder of our sad reality) and asked Erik to help me carry it into the house. I followed him over to our linen closet, where we usually store all our baby items and I watched him try and try to fit that stupid box onto the shelf. It wouldn't fit.

I grabbed the box and ripped open the tape, telling him that we'd just put the diapers in there without the box. Big mistake. I took out one section of the pre-packaged, size 1 "Little Swaddler" diapers and lost it. They were so small, and so sweet. And they were supposed to be Sawyer's.

Who was I kidding? Mostly myself I suppose. It's how you live life after your baby dies. There are moments where I think he's coming home. He's just at the hospital. My baby will be here soon. But he's not. He's never coming back. My baby is dead. And it's the nightmare I live every single day.

All around me...

Is it just me or is everyone pregnant - and are there babies everywhere - and I'm just the sad, sickened mother of the dead baby in the corner noticing it all?

Still: A Collection Of Honest Artwork And Writings From The Heart Of A Grieving Mother

If you know anyone who has lost a baby, buy them this book. I wrote the author today who I only know through her amazing website and project - sweetpeaproject.org - Here is my letter to Stephanie Cole:

Stephanie,

I finished your book today in the shade of the public pool under a perfectly blue sky with the puffiest, white clouds floating high above. My husband took the day off work and we all went together with our two-year-old daughter, Sadie. I got into the water for a few minutes. But I couldn't stand watching everyone splashing around, looking so happy.

I'm so glad I packed your book.

I picked up where I left off and finished it in less than two hours. I wanted to thank you for what you've written, what you've shared. I've been keeping a blog online and writing in a few different journals - one I started before Sawyer was born and one that I received from the hospital. I try to be so honest, especially on my blog, that I sometimes worry about what people think of me - "The mother of the dead baby." And your book has inspired me to continue writing and sharing my pain, anguish, grief, frustration and whatever other emotion strikes me - with the world.

What you've done is more than brave - it has shown that we all have our own story to tell. And you told yours in the hopes that it brings some kind of comfort to another mother, facing the same nightmare that we all could never imagine living through - yet here I am. And here you are. And we are living through it.

Thank you again, and I do look forward to working with you in the future with your Sweet Pea Project and our (not-yet-named) bereavement box project that we are starting in honor of Sawyer. Much love and peace,

Michelle Williams

Please, God...

My mind allowed my heart to break down last night. I stood in the middle of my house sobbing. Asking God to please give me my baby back. Just begging him over and over for another chance. I was literally trembling as my mind and my heart spun out of control - or were they finally in control for the first time?

The death certificate

The saddest thing my eyes have ever read...

Age: 0 months, 1 day, 10 hours and 5 minutes

Cause of death: Cardiorespiratory Arrest, Congenital Heart Defect, Prematurity

Tears on our pillows

I'm sitting on the couch and I can hear Erik's cries from the bedroom. It's the same thing every night. It's either him or me. One of us breaks down - then we both do. We hold each other steady while the pain shakes our bodies.

Tonight, we talked about all the things we won't be able to do with Sawyer. Through Erik's tears he tells me that he won't ever be able to hold him again. That all he wants to do is kiss his little cheeks over and over. Erik's pain makes me so incredibly sad, that my crying soon turns into sobbing. How can I help take his pain away, when I'm so consumed with it myself?

I love you Erik. Although it feels that a part of us has been ripped away, always remember that Sawyer is forever in our hearts and engraved into our souls. I want you to remember that when the hurt is too much to bear. We will hold onto Sawyer's spirit together.

"What happened to Sawyer?"

Sadie woke me up this morning and asked "What happened to Sawyer?" and I could finally tell her and she really listened. It was sweet and sad at the same time, but I'm happy she can finally start to understand and that it's okay to be sad that he's not here.

Dreaming of you

I had a vivid dream about my Sawyer last night. I just wanted to share that Sawyer came to me in my dreams. It made me smile.

Our family

The storm

Rain drops slide down the window, reflecting on my face like tears when the lightning strikes.

When the sky flickers back into darkness, the real tears stay.

Dark of night

When the rest of the world is sleeping and the moon and stars come out, I find myself wide awake. Laying in bed, curled up next to Erik, all I do is think. My mind never drifts off from me. Instead, it's always there. Pressing. The same scenes play out in my head over and over - every single night.

I think about my son. Every single hope and dream I could have ever imagined for him. The feel of his soft skin against my beating heart. The anguish I felt after placing him inside the casket at the hospital. What it would have been like to breastfeed. The nurse who told me to "calm down" a few hours after birth - because she had a preemie and her baby turned out just fine.

Every night. The same moments come to me and never go. They are permantently etched into my soul forever.

As I turn on my side, my hands reach for my stomach. A lot of nights, I still imagine I can hold my growing belly and feel his sweet and gentle kicks.

But, there's nothing for me to feel. No blanket to swaddle my beautiful baby in. No bassinet close to my side. All I have are empty echoes of what should be. What could have been.

June 1st, 2010 - The story of Sawyer's birth

I've been putting off writing about Sawyer's birth for a while now, waiting for the right moment to come. I guess today's the day...

There is a LOT of background to this story, but I really don't think a lot of it matters at this point. All I know is that I had an instinct that something was really wrong with my baby. I had it for almost five days leading up to his birth. I was in L&D triage at University of Chicago Hospital twice within that period of time. Once becauase I just didn't "feel right" and the second time because I woke up the morning of his birth around 4 a.m. soaked in blood.

I already had an ultrasound and appointment scheduled with my MFM doctor that day. After leaving L&D with a clean bill of health (as far as they could see after monitoring me for a few hours, everything was okay with me and okay with the baby) I went to have my ultrasound at the clinic then waited to see the doctor.

Everything looked great with Sawyer on the ultrasound - my fluid was actually the highest it had been in weeks(5cm - still low, but better than 3cm) and he was moving, kicking and practicing his breathing just like he was supposed to. The only other thing that was wrong was his size, which - in recent days - had got me to thinking that we should go ahead with the genetic counseling because something was wrong and we wanted to be as prepared as we could be for what might come our way.

An hour later we were waiting to see my doctor. Erik was still with me because I knew something wasn't right and I didn't want him to leave me. She came in and went over my ultrasound results and we began talking about what had happened to me earlier that morning. She had no explanation at all for what happened to me. Over and over she asked if I was SURE that I didn't urinate on myself. I kept telling her that she must think I'm crazy, but I know what happened and she believed me.

After talking about our options for about fifteen minutes, she told me I could go home and continue with the bedrest. Tears started to fill my eyes and I looked at her and said "What if this happens to me again?"

She took a step back, paused for a few moments, looked at me and said "Okay. We're going to admit you for a 24-hour observation."

Obviously I wasn't thrilled about being admitted to the hospital - and who is? But, I knew it was the right thing to do because something in my body kept telling my head that I needed to be there.

Finally around 3 p.m. I got a room. Erik stayed with me until I was admitted and I sent him home, assuring him that everything would be fine and I'd be home by this time tomorrow. We gave each other a kiss and I suddenly felt a wave of exhaustion come over my entire body.

It was around 3:30. I put the head of the bed down as far as it could go and turned on the television for a little background noise. I was more tired than I had felt in months and couldn't wait to fall asleep. I closed my eyes and slowly started drifting off...

Within a few minutes, I felt the same gush of fluid that I had felt earlier that day. My heart sank and I pressed the call button while at the same time yelling out the door for a nurse from my bed.

Not even a minute later, my nurse was in the room along with a resident who said she was going to perform a vaginal exam to check and see if my bag of waters had actually broke. I started to breathe long, slow breaths. I continued doing that for the next 4 hours.

During the vaginal exam, I felt the same warm gush of fluid as I did before. I kept asking the growing number of nurses and doctors gathering in the room what was going on. Everyone told me to keep breathing and that I had to go downstairs to labor and delivery. This is it, I thought. My water broke and Sawyer is coming. Please God, let my baby be okay.

When we got downstairs, I continued to feel these gushes of fluid. Everytime I did I told a nurse or a doctor - whoever was there. No one EVER left my bedside. There were always at least two people in the room. It was after the third or fourth gush that I actually saw the pad that was underneath me - it was completely soaked in blood. And this was after it had been changed several times in the past hour. I asked my nurse - who was actually retiring that day and didn't leave my side until delivery - "what is happening to me?" I already knew, but I needed to hear it from someone, anyone. I had to hear the words.

She grabbed one of the residents who came over to talk to me about what was happening. They told me that I was having placental abruption and that the baby had to come very soon. Another nurse had my phone and was calling my mom and Erik for me, explaining that they needed to get to the hospital immediately. I couldn't feel my hands, arms, feet or legs. I kept breathing long and slow. My contractions were coming faster - at first every four minutes - but by this point every two. I prayed Erik would get there in time.

It ws 6:30 when Erik finally got to the hospital. He rushed in and hadn't missed the csection yet. Several anesthesiologists had come to explain to me the dangers of doing the csection while I was awake. Since I had my lovenox injection earlier in the day - it was too dangerous to do an epidural or spinal. Equally dangerous was putting a woman under anesthesia for a csection. After they consulted with each other while waiting for blood to arrive from the blood bank - it was decided around 7:30 that they couldn't wait any longer - and I was going to have the baby. Alone, under anesthesia and without my husband by my side.

The doctor, anesthesiologists and nurses left the room to give Erik and me a few moments before the surgery. After everything I was told, I knew what I had to say to Erik. You would think it would be the hardest thing I'd ever have to do in my life, but a feeling of calm and peace came over me as I took my husband's hand to tell him goodbye.

I told Erik that if I didn't make it, to do all the things we wanted to do with Sadie and Sawyer. I asked him to promise me to take them to the mountains and to let them know that I'd always be there to watch over them. Erik asked me to stop talking like that, but I honestly thought at that moment, I was going to die. And that I wanted him to know how much I loved him and how much I loved my babies.

A few minutes later, a huge group of people came in to take me to the OR and I kissed Erik goodbye. I wasn't scared or nervous - at all. And to this day, I don't know how or why I felt the way I did.

When we got into the OR - they asked me to move from the bed onto a smaller table. I layed down as they strapped my arms down for surgery and began prepping my stomach for the delivery. I closed my eyes and the anesthesiologist put an oxygen mask over my nose and mouth.

All of a sudden, I was overcome with this pure, white light and feeling of warmth I have never felt in my entire life. It was so beautiful. So peaceful and pefect. I wasn't under any kind of anesthesia or drugs at this point so I know that what was happening to me was real and that I wasn't crazy. I know a tear rolled down the side of my face I was so full of this feeling of purity and light.

Two or three minutes later, the doctors said I would start to feel the medicine working and would go to sleep. This light and warmth never went away and was with me during the entire procedure.

When I woke up from the surgery - I saw Erik on my right, my mom and sister on my left in recovery. I called for my mom to come over, took her hand and told her what I saw.

While I was enveloped in this light, a baby came to me. I knew it wasn't Sawyer - and I told my mom it was James - her second son. The baby she lost at birth over 40 years ago. With tears rolling down my face, I told everyone what I saw, and that James came to watch over Sawyer...

Now I know, that James was there to take Sawyer home. And I know that I saw everything Sawyer saw, because he was still inside of me when God came to take him home.

Our beautiful baby boy, Sawyer, was born with a rare congenital heart defect - Truncus Arteriosis - and died nearly two days after his birth. The NICU team did chest compressions to get his heart beating immediately after birth. How long he was without a hearbeat, we don't know. But I'm thankful that we were able to have the precious few moments with him that we did.

One of the only things that gets me through all of this is knowing that what I saw and experienced before and during the c-section was completely real. It was so real that there are almost no words to describe it. And I know that when Erik and I were faced with that heartbreaking choice of taking Sawyer off of all forms of support - that he would be safe in the grace of God's love and light.

Every night when I go to sleep, I close my eyes to try and imagine that light again, to feel that warmth and love. And I can't. Part of me wonders if I was supposed to go with Sawyer while the other part of me is thankful to God that I'm here now with my husband and daughter.

Sawyer is home now. He is free from the pain and suffering. He will always be loved and I know he has his wings. Angel, you were born to fly. I love you Sawyer - for all eternity.

Sawyer's hawk

We had a fantastic day today. Erik goes back to work tomorrow, so we tried to enjoy the day as much as we could for all of us.

The first thing we did was visit Sawyer. Sadie immediately ran over to his grave and giggled excitedly over the pinwheel Erik and I placed there a few days earlier. She knelt down and kissed the grass and told Sawyer that she loved him.

After that, she went skipping about the graves in a way that only a child could be so happy and carefree. While I was sitting on the ground next to Sawyer and watching Sadie, I heard this beautiful bird. I looked up and there he was - the same hawk that was there through Sawyer's entire service - the same hawk that glided in circles around the cemetery last week when Erik and I were there.

I yelled for Erik to come see and we just couldn't believe our eyes. He was perched in a tree right above Sawyer's grave making the most beautiful sound. We watched him for a few minutes, until he looked down at us and flew away. After walking through the wet grass with Sadie for a while longer, we left - without tears today and with smiles on our faces.

Empty nest

The mommy bird hasn't been back to her nest outside our window since they trimmed the bushes a week ago. I wonder what happened to her? I wonder if she's sad too...

Congential Heart Defect (CHD) facts

A congenital heart defect (CHD) consists of an abnormality in the structure of the heart that may have life-threatening effects.

CHDs are the most common birth defect,affecting nearly one out of every one hundred babies,or approximately 40,000 babies per year in the United States alone. Worldwide,the problem is even bigger.

CHDs are the number one cause of birth defect related deaths—responsible for nearly one third of all birth defect related deaths.

Twice as many children die from CHDs in the U.S.each year as die from all forms of childhood cancers combined.

Each year in the U.S.CHDs result in 91,000 lost years of life.

Care charges can annually exceed 2.2 billion dollars for inpatient surgery alone.

There are 35 different types of CHDs. Little is known about the cause of most of them and there is not yet a cure for any of them.

To date,The Children’s Heart Foundation has funded $3 million towards 34 research projects led by the nation’s best and most promising research teams.

More than 50 percent of all children born with a CHD will require at least one invasive surgery in their lifetime. Sadly,20 percent of these children will not survive past their first year of life.

www.childrensheartfoundation.org

Every day...

I ask myself what would life be like right now if Sawyer was still here? How would he be doing? Would he be growing? Would he open his eyes for me?

I would be 30 weeks tomorrow. Which is a crazy thought because I should still have another 10 weeks, over two months, to go with my pregnancy. August 24th is such a long time from now. I wonder if that date will bring some closure or just make things worse?

It seems like every single day gets a little worse. Some days, it feels like every hour hurts more than the last. People tell us to stay strong and keep our heads up - but it's almost impossible at times when the overwhelming sadness consumes you. It's just the way it is. I can't change anything, I can't change how I feel.

Every night I pray to God, then I talk to Sawyer. It brings some of the only comfort I've been able to find. Erik and I cry to each other every night before we fall asleep. Then we pray together.

We have all his things in a chest in our closet. At first, we would go through it all the time. Now, I can't even bring myself to open it, fearing what the smell of his little blanket would do to me. At the same time, I ache for his things and his smell.

I just miss our baby so much that the pain is surreal. Life is constant tunnel-vision.

Sawyer's letter

To my beautiful son, Sawyer,

When God came to us, I didn't understand why. We both felt the warmth and peace of his grace and light and I knew we would always be safe. When you started to get sick, I know God's light came to you again. Calling you home.

I never wanted to let you go Sawyer, I want to hold you forever. I love you more than anything in the world. When you need me Sawyer - come to me. I will come to you in my dreams and we will be so happy. I will protect you and keep you warm. Feel me in your heart - I will always hold you in mine.

Love forever,
Mommy

Sawyer's spirit

Even though Sawyer's never been here, it feels like there is a ghost in this house - in general terms.

Actually, the house feels more empty than it's ever felt.

His spirit is gone.

An old, white sheet covers his bassinet and all his things are carefully put away under the stairs and out of sight. But, we all know where they are. We all know that when we walk into Sadie's room, Sawyer's crib would be where her bed is and that the smell of baby lotion should be wafting out of the linen closet.

I think that's why we want to move so badly now. Sawyer was here. And we miss him more every day. It gets better, but it gets so much harder at the same time.

Donating milk?

I'm really considering it since my milk came in and I'll be off antibiotics in just a few more days. Is it even possible to do this for another baby or mother? Is it too late to start pumping? Or am I just insane?

Angel, you were born to fly...

Today's plan

After an eventful morning full of potty training mishaps, Sadie ate her lunch and is sleeping now. We're going to the pool in town later today to swim - I'll just be watching, but anything is better than being here by myself.

We are going to start going to the "Empty Arms" support group for parents who have lost a baby at Morris Hospital starting in July. It gives us enough time between now and then to prepare for what group therapy is going to be like. By then, we'll be more than ready to go.

Tomorrow we're driving up to Merionette Park to a monument company to pick out Sawyer's tombstone. It's amazing the things you never in a million years thought about doing, let alone thought you'd ever do in your own lifetime. As much as I don't want to go, Erik and I have already tossed around a few ideas on epitaths and hope that the finished product is perfect for our son. Having control over a few things helps believe it or not.

A friend of mine who was also facing similar complications in her pregnancy (low amniotic fluid) had her son last week. While we were saying goodbye to our son, she was giving birth to hers. His name is Gabe and he is beautiful. He's a preemie, but holding up really well - even tolerating bottle feeds. I hope she knows that Erik and I are truly happy for her and thank God that our prayers for little Gabe were answered. He really is a blessing from above and we wish them all the love in the world.

I don't think the routine of our days will change anytime soon. We have our ups followed by deep, sad downs. Grateful doesn't even seem like a big enough word to describe how I feel about my husband. We listen to each other, we cry to each other, we hold each other. I couldn't do this alone and I'm so thankful for Erik and Sadie. I know the pain won't sting forever...

August 24th

That was supposed to be my due date with Sawyer. The hardest part of all of this are the little things. We might wake up, brush our teeth, dress Sadie for the day, make breakfast, fill up the gas tank - but everything is wrong. Everything is so painfully different.

I don't know how I'm going to get through the next three months knowing that I should still have my beautiful baby growing inside of me.

First you're numb, then you try to let go. Now, everything stings.

Truncus Arteriosus

Here is detailed information I received from the March of Dimes today that better explains Sawyer's congenital heart defect and why it was too much on his little body.


Truncus arteriosis is a congenital heart defect (CHD) that includes a large septal defect under a single great artery. It happens when the two large arteries that normally transport blood away from the heart (oxygen-poor blood to the lungs, oxygen-rich blood to the rest of the body) don’t develop as they should. Instead, only one large artery exists. This single artery (the truncus) carries blood both to the lungs and to the body. It is positioned over a large hole,called a ventricular septal defect, between the lower chambers of the heart. This defect can cause the blood to circulate improperly, combining oxygen-poor blood with oxygen-rich blood. This causes the heart to work extraordinarily hard to carry oxygen throughout the body. The lungs become overtaxed from all the extra blood flowing through them resulting in pulmonary hypertension. Sadly, this overburdened system is too much for babies, especially a preemature baby, to handle.

I miss you

I miss you so much Sawyer. I can't stop hurting.

Loving hands

Dear God

Dear God,

Are you watching over Sawyer? Is he happy? I miss him so much, my heart is so empty I don't know or can't imagine how it will ever feel full again.

I want to hold my baby against my chest one more time. I want to feel his soft head against my chin. I don't want to forget his face or how he smelled. I want to remember how his tiny fingers felt in my hands. I want my body to warm his sweet head and kiss him all over just one more time.

Sawyer can you feel me wanting you? Can you feel me touching you? I feel you come to me at night and I don't ever want to let you go. I love you sweet angel. Always.

Love,

Mommy

Baby Sawyer

Born: June 1, 2010 8:13 p.m.
Weight: 2lbs 3 oz
Died: June 3, 2010 7:21 a.m.