Tuesday, August 31, 2010

"An Exact Replica..."

I just finished reading "An Exact Replica Of A Figment Of My Imagination" by Elizabeth McCracken. I bought it after reading the post from a BLM blog about how much she enjoyed the book and felt connected to the author.

I have to admit, the first two or three chapters were very hard for me to follow. She is living in France at the time of her son's stillbirth with her European husband. So there was a little bit of dialogue that was difficult for me to follow (and the fact that they named their baby Pudding), but once I got past that, this book consumed me and I loved Pudding too.

Here are a few entries from it that I found particularly moving and could relate with very well:

"I thought stillbirth was a thing of history, and then it happened to me, and yet now when I hear of a baby dying I'm just as incredulous. You mean they still haven't figured this out?"

"I want to hear about every dead baby, everywhere in the world. I want to know their names, Christopher, Strick, Jonathon. I want their mothers to know about Pudding. The dead don't need anything. The rest of us could use come company."

"When I returned for every successive appointment, the pregnant women in the waiting room made me sad: there they sat in the present, dreaming of the future. I couldn't bear watching. I wanted a separate waiting room for people like me, with different magazines. No Parenting or Pregnancy, no ads with pink or tawny or pearly smiling infants. I wanted Hold Your Horses Magazine. Don't Count Your Chickens for Women."

I've also found great comfort in the books Still by Stephanie Cole and Waiting With Gabriel by Amy Kuebelbeck.

What books have you read that helped with your grief or at the very least - reassured you that you weren't completely alone in this? My Amazon account is open and waiting for suggestions.

Monday, August 23, 2010

Tomorrow's broken promise

Tomorrow is Sawyer's due date.

August 24, 2010.

I remember sitting up after my ultrasound in late December, and thinking to myself, "I can't wait to meet you!"

I was so happy. My chest swelled with so much love at that moment. I knew I was pregnant and my little baby was so safe inside me.

Tonight, I'm up late and think about all the things I'm missing. It's easy to do when I think back on our time with Sadie. It seems like yesterday when we brought her home, after weeks of worry in the NICU. We were stuck in traffic coming home from Chicago, and I didn't care. It meant a long ride home, and I was sitting in the back with her and couldn't stop touching her soft face and smiling. No wires, no tubes - just our little miracle - all to ourselves.

Some days I think I kid myself. My head can wander to that place if I let it. The place where Sawyer is just in the hospital, and he'll be home soon. The place where we're worried, but happy. Because he's going to be okay.

Instead I'm here in a world without my precious Sawyer.

It hurts my heart so much to know that I'll never feel his skin against mine. I will never know how beautiful it would have been to nurse him against my breast. I cry myself to sleep at night, so sad that I never got to see his eyes. Oh, how I wish I could just have looked into them for one second.

I go through moments where I would do anything to be with him. I want to curl up, close my eyes and just be blanketed by his love. I want to die, I want to live. My heart has been shattered - I feel like I've only been able to put together some of the pieces. So many are still scattered all over. And sometimes, it takes so long to find one just one.

Grieving mother's brain

We have no water in the house, no bread. I assumed we had things like cheese and peanut butter on our last shopping trip.

But, I knew we needed vanilla extract for baking. Because it kept popping up in my head.

So I bought the vanilla.

When I got home, I put it in the pantry - next to the four other unopened boxes of vanilla extract that I've bought in the last three months.

So, who else stands in the middle of the store, trying to remember what in the heck you were supposed to go there to buy in the first place. Or who stands in front of an open fridge or cabinet? Wondering what you were supposed to be doing, but never remembering?

Saturday, August 21, 2010

Wishful thinking

Things I will never do again if I ever get pregnant.

Wish on stars

Knock on wood

Put the crib up

Wash and fold baby clothes

Keep the baby's name a secret

Throw pennies in a fountain

Assume everything is going to be okay

Thursday, August 19, 2010

Diagnosis hitting hard

I found an article regarding Sawyer's congenital heart defect - Tetralogy of Fallot with Pulmonary Atresia and VSD.

Here is a link - http://emedicine.medscape.com/article/899368-overview

I guess I'm mostly posting this for other CHD moms out there to see how severe Sawyer's heart defect was and that his chances of survival were very grim.

Some things that stood out to me, made me cry - brought so many more questions to a head that's already swirling with a million of them.

Pulmonary atresia (PA) with VSD is considered the extreme end of the anatomic spectrum of tetralogy of Fallot. Tetralogy of Fallot with pulmonary atresia is worthy of separate consideration. Because of the wide variability of pulmonary blood supply, diagnosis and surgical management of tetralogy of Fallot with pulmonary atresia is more difficult than that of classic tetralogy of Fallot.

The Baltimore Washington Infant study reported an incidence of 0.07 cases per 1000 live births. This condition accounts for 1.5% of all forms of congenital heart disease and 20% of all forms of tetralogy of Fallot.

Patients with tetralogy of Fallot and nonconfluent pulmonary arteries are subject to increased morbidity and mortality related to the frequent need for multiple cardiac surgeries.

Many patients with tetralogy of Fallot with pulmonary atresia have associated syndromes and extracardiac malformations.

Sawyer had NONE of these - NONE!! And I had none of the maternal associations either

◦Conotruncal cardiac malformations associated with a chromosome arm 22q11 deletion have been incorporated under an acronym of CATCH22 (cardiac defect, abnormal face, thymic hypoplasia, cleft palate, hypocalcemia, microdeletion of band 22q11). Patients with tetralogy of Fallot with pulmonary atresia have a higher incidence of this syndrome than patients with classic tetralogy of Fallot. The prevalence of deletion 22q11 is 16% in tetralogy of Fallot with pulmonary atresia with confluent pulmonary arteries and 41% in patients with tetralogy of Fallot with pulmonary atresia and multiple aortopulmonary collateral arteries.6 Surgical mortality has been reported to be is greater among patients with tetralogy of Fallot with pulmonary atresia with a 22q11 deletion compared with patients with normal chromosomes, perhaps due to depressed immunologic status or other factors.7 ◦Other syndromic associations include the vertebral defects, anal atresia, tracheoesophageal fistula with esophageal atresia, and renal and radial anomalies (VATER) syndrome; the coloboma, heart disease, atresia choanae, retarded growth and retarded development and/or CNS anomalies, genital hypoplasia, and ear anomalies and/or deafness (CHARGE) syndrome; Alagille syndrome; cat's eye syndrome; Cornelia de Lange syndrome; Klippel-Feil syndromes; and trisomy 21.8 ◦Maternal diabetes mellitus; maternal phenylketonuria; and maternal ingestion of retinoic acid, trimethadione, or sex hormones increase the risk of conotruncal abnormalities. Infants of mothers with diabetes mellitus have a 20-fold higher risk than infants of mothers without diabetes mellitus

Tuesday, August 17, 2010

Triggers in the most unexpected places

I told a few close friends about this today, because I pretty much had one of those moments where I thought I was completely crazy.

I was with Sadie at Walmart (of all places) and we were shopping for veggies for a homemade pizza I was going to make later that night. I only had a $20 bill with me, so I had to be mindful of how much everything was costing us. I grabbed some green peppers, then a bag with three onions and weighed each one to get an idea of the price.

When I put the onions on the scale, it tipped just over two pounds. Actually, they weighed exactly 2lbs, 2oz - Sawyer's birth weight.

I was just standing there, holding the bag as it swung slowly, back and forth.

These stupid onions. These god-damned stupid onions!

I stood there with the bag in front of Sadie, tears in my eyes, asking her "How can these weigh as much as Sawyer? HOW?"

So I threw one back. I didn't want that last onion.


Mine were three onions today.

Happy holidays - not so much

I know it's only August, but who else is dreading Christmas and the holidays? I know I am.

We're already trying to figure out our escape plan.

I don't even want to pull out our decorations, but for Sadie's sake, we'll put the tree up this year. And that's probably all we'll do.

Sunday, August 15, 2010

The reason behind it

This past weekend, Erik and I were able to get away - alone - for a few days. It wasn't so much to escape our lives, as we are constantly thinking about Sawyer - but to simply be together, and grow closer through our loss and grief.

On Saturday, we decided to make reservations for dinner at a rustic lodge inside White Pines state park here in Illinois. It was straight out of a postcard - walls and beams made of logs, a table next to a giant stone fireplace and delicious "down-home cooking."

There was a wedding reception outside in a beautiful foyer between the restaurant and gift shop and Erik noticed a white, horse-drawn carriage taking guests from the wedding for rides through the pine forest. He jumped up in the middle of dinner to book a trip around the park before the driver and his horse packed up and left for the day.

Excitedly, we paid our check and hopped into the buggy for the last ride at sunset (my first carriage ride ever!). Our driver was a friendly man in his 60s, lean and tall with a light southern accent - he introduced himself to us as Jim.

Throughout the ride, we all talked and shared short stories of our lives. Where we were from, how long we've been married...

And then the topic of children popped up. The first time I had been asked since Sawyer died - "Do ya'll have any children of your own at home?" Jim asked us.

I told him we had a beautiful little girl that kept us quite busy. Then, hesitated for a moment, and said that we also had a son who had died in June.

Jim listened as I briefly talked about Sawyer and I noticed that his stature had shifted - and for some reason, I knew he understood.

He told us that he had two children of his own - a son and a daughter - grown with children of their own. And then he told us about his first child - a boy, "born sleeping" in 1976.

As the sound of the horse and carriage moving through the woods echoed off the canyon walls, he told us all about the baby that he and his wife lost. He said that things happen for a reason, but what that reason might be, we'll probably never know.

He offered us his condolences, as we did for him and I thought about how beautiful the moment was. That we could share such an intimate part of our lives with a total stranger would have seemed crazy just a few months ago.

And now, it will be a memory that I will treasure in my heart for a long time to come - and know that somehow, Sawyer brought us here to that moment...

For a reason.

Friday, August 13, 2010

The Nothing

Sadie knows Sawyer.

She knows he is a baby and knows that he is her brother. She is a big sister, with no sibling. An only child to most people.

Sadie keeps asking for Sawyer. She doesn't ask if he's coming home, instead - she demands.

"I want my baby brother! I want Sawyer!"

Her demands come with tears and anguish. Do you know what it's like to see your two-year-old child look at you with that kind of unimaginable hurt in her eyes?

Sadie sees other children with their baby brothers or sisters and wants to be with hers.

She loves Sawyer so much. I can tell you for a fact that she hugged and kissed him more than any of us ever got the chance to. Constantly lifting up my shirt to hug and kiss her baby brother.

She was full of the same anticipation that we were bursting with. And now she's full of nothing. The nothing posed a lot of questions at first, and now, the nothing wants what it can't have.

God, I wish she could have seen Sawyer. I wish she was there to hold him. To say hello and to say goodbye.

We miss you Sawyer. Sadie loves you so much. She was going to teach you so many amazing and wonderful things. We were all going to marvel at it.

And we were going to live happily ever after.

A letter

A mother came to me. She lost her son - same heart defect. Same tragic ending. She asked me about Sawyer. This is what I wrote.

We were told Sawyer had Truncus Type 4 - which is also classified as a severe form of Tetrology of Fallot. He also had pulmonary atresia - which meant - his pulmonary artery never formed. It makes me sick to my stomach.

I didn't know any of this. When I was 24 weeks along, my fluid was very low - so low that they couldn't see the heart. So I was put on bedrest and I waited. Unfortunately, I didn't wait very long.

At 28 weeks, my water broke - then my placenta detached - I started to bleed out. I was rushed in for an emergency c-section and was not awake. Sawyer was born - limp, no heartbeat.

Somehow, they managed to revive him - only to have the cruel hand of fate deal us a bad card. The day after he was born - they told us about his heart. And how there probably wasn't anything they would be able to do. So we waited.

That night, Sawyer got worse. And worse. Finally, nothing they could do would help him any more, and we took him off life support. He died in my arms while I cried, my tears fell upon his face. He was gone.

I don't understand it. I still can't figure out how a baby made with so much love could have a broken heart. I've cried so much that the tears have made a permanent path down my cheeks. And they are huge tears. Tears only a mother cries for the baby she doesn't have in her arms.

Every day, I carry it all, while carrying him.

Wednesday, August 11, 2010


I was having a chat with another babylost mom last night and she brought up the topic of things she now hates.

There is a dresser, full of her son's baby clothes that she has yet to put away - there is hate there. In preparation for a long stay in the NICU she bought tupperware to conveniently bring food back and forth to the hospital. She hates that too. At one point, she said that it sounded silly to hate tupperware, but - I get it.

I hate going into my daughter's newly painted room. It is a bright and sunny yellow. The day before Sawyer was born, I helped my husband tape the walls because my dad was coming over the next day to paint. It was going to be the baby's room and Sadie's room. And the color we picked was a beautiful sea green.

So, in my closet, sits this bucket of paint. Oh, I hate that bucket.

I bought these cute white baskets - with a checked green liner - just for Sawyer. I had them full of his things, neatly arranged in our linen closet and filled with his little ducky towels, blue bath rags, burp cloths and blankets. I hated those baskets so much that they were one of the first things I begged Erik to take and hide behind the basement stairs after Sawyer died.

I hate the minivan we bought because our family was growing. Now, the seat next to Sadie sits empty. It's ghostly almost.

I hate how Sadie's bedroom feels so empty to me now. There is supposed to be a crib, a changing table, a baby swing. It looks almost barren with just her bed and tall, narrow dresser.

People say that hate is such a strong word. But when your grief takes over you, the hate comes along with it.

Tuesday, August 10, 2010

Once upon a time...

Sadie woke up crying this morning.

I was in the shower and could hear her on the monitor. I turned off the water and stepped out to dry off while her crying continued to get louder.

I quickly wrapped a towel around me while my mommy instincts kicked into overdrive and I rushed into her room.

I asked her what was the matter and she was sitting straight up in bed, trembling and kept repeating to me over and over, "I want my baby brother, I want Sawyer."

Since this has all happened, we've tried to be very gentle with her in explaining what happened to Sawyer - while being very honest at the same time. She asks me to tell her the story of her brother and I tell it in the only way a two-year-old can comprehend...

Once upon a time, there was a little girl named Sadie. And she had a Mommy and a Daddy and a baby brother named Sawyer. One day, God saw that Mommy and Daddy loved each other so much, that he put a baby in Mommy's tummy. One day, Mommy and Sawyer got very sick and they drove in the car to go see the doctor. Mommy went to sleep and the doctor took Sawyer out of Mommy's tummy. Mommy got better, but Sawyer was still very sick. Soon, God came to Sawyer and said it was time to come to heaven. And Mommy and Daddy were there when Sawyer became an angel. He is watching over you and he loves you very much. And now, Sawyer is forever an angel in heaven's sky. The end.

Over the past week, Sadie and I have visited a some friends with little babies at home. It's also been the first time that she's been around other babies and hasn't pointed to them and asked if they were her "baby brother!"

I think she finally understands that the other babies aren't Sawyer, and that Sawyer really is gone and that he's not coming home. I tried so hard this morning not to cry in front of her, but I couldn't hold back the pain of seeing my little girl so upset and missing her brother so much.

I wish she could have held him. I know she would have loved every moment of having him here in our lives. She is an amazing big sister. And she loves her Sawyer so much.

Sunday, August 8, 2010

Fear takes over

I am afraid.

Afraid to get pregnant again and afraid for every pregnant woman I see. When I look at pregnancy now, all I see is a ticking time bomb.

Mothers walking around, their faces glow and beam. And I think to myself, you have no idea.

One of the most beautiful and precious gifts of life is tainted. My body failed me, and there is no reason why. My son is buried and my arms are empty.

I feel everything hitting me so much harder now. I've heard that it gets better, but I'm still waiting and waiting.

Sadie plays alone. Sawyer's crib is hidden behind the stairs with a white sheet draped over the top. It shouldn't be like this!

I've been focusing a lot of my anger into organizing a walk for mothers to honor and remember their babies that have been taken too soon. I can't just sit here, idly waiting for life to get better. And I'm trying so hard to just try.

And again, life goes on - and I'm still trying to adjust to the "different."

Saturday, August 7, 2010

The first "Sawyer's Heart Memory Box"

Here is the first memory box made in Sawyer's honor. The news of the baby and family that were in need of this came so quick, that I had such little time to put it all together.

I wanted them to have something special - something like we had. It's cruel enough that we have to leave the hospital without our babies, but to leave with nothing would be the worst thing of all.

So, included in the first basket was a plaster kit for the baby's tiny feet. A beautiful, pink blanket, "When Hello Means Goodbye," a box of "no-more milk tea" and a book that we read to Sawyer named "Sleep Baby Sleep."

I know this was our first box, and I didn't have much time to put it together (and trust me, I'm going to be more prepared from now on) - but what types of things did your hospital or bereavement counselors provide you with when your baby died? I want to make these even bigger and better for the future and am open to any suggestions.

xoxo ~ Michelle

Thursday, August 5, 2010

Fly high

A beautiful couple that attended the same birth class as we did, lost their baby girl this morning.

I don't know details. And really, does any of that even matter?

I am calling on all of you for prayers. Pray as hard as you can for this mother who has yet to deliver her daughter. Pray for her pain, her anguish and the soon-to-be-overwhelming grief that will consume her.

Pray for her to have strength. The worst days are yet to come.

Pray for her to have comfort. It is all she will have to hold on to.

Please, share this blog with as many people as you can. I want her to feel our prayers, thoughts, vibes - whatever it is that you do - please give them to this mother who is living the nightmare that is infant loss.

Sunday, August 1, 2010

I will carry you

Overcome with exhaustion, I decided to lie down late this afternoon. I fell asleep almost immediately and had a dream that was so vivid and alive that I woke up instantly when it had ended. Stumbling - consumed with fatigue - I had to grab my journal off the dresser and write. I didn't even know what I had written until I finished.

It was a moment where the words poured out of me - rare - and one I won't forget...

August 1, 2010
2 months since you've been gone.

Days and days with no sleep and I finally just crashed, collapsed.

I don't remember falling asleep - it was instant.

I had a dream. Same life as I live now. Sawyer is dead - life has moved on - but we never buried him. It was my choice.

Wherever I went - I would take his tiny body and carry it with me.

He wasn't anything awful to look at. It was just, simply, Sawyer - and he was dead. And I didn't care - and I loved him - and I carried him around to prove it to every single person that could see me.

And as I furiously write, to not forget, I realize, that is exactly what I have doing the entire time - this unthinkable image is real.

You might not see Sawyer - but he is here - and I am carrying him with me everywhere I go. Every single moment of every single day for the rest of my life.

And this dream has helped me to realize that he really is with me - and it is a beautiful burden that I must endure.

And life goes on - and I carry Sawyer through it all.