Ticking away the moments

I swear to God I've had literally no time to post here - or maybe I should say - limited time - since Landon arrived a little over 6 months ago.

Did I just write that? Six months?

Here are some random Lando stats:

Allergic to milk-protein and soy
On expensive, prescription formula
Already had a UTI and Pertussis (lucky me!)
Has TWO teeth that came in on the same day
Can say "mama" "dada" "nana" "lala"
Rolls from one place to another
His favorite toy is the Jumperoo
Loves taking naps with mommy

I couldn't be happier the past few months. Now that we've figured out some of Landon's quirks, likes and dislikes - it's been pretty smooth-sailing.

Sadie has taken on the role of "big sister" in ways that I never could have imagined. She loves her brother so much and looks forward to the moment he wakes up in the morning and every time he wakes up from a nap. He is enthralled with watching her play and showing him how things work. They are going to be best friends, and I am so grateful that they will have each other for the rest of their lives.

I still feel that so much is missing. Yesterday I took a nap with Sadie and Landon in my bed and Sadie asked me to lay Sawyer's blanket across all three of us. It was a moment where that crowded bed suddenly felt so empty. My mind wandered to my sweet baby boy, what would he look like? What would he be like? Would he have blonde hair like his brother or bright, blue eyes like his sister? I wish I could know. I ache to know every day.

May 29th, 2010

The last picture taken of me while Sawyer was still safe inside my womb. A blurry picture taken with Erik's phone. I was happy here. Happy because I could just lay back and listen to his tiny heart "woosh" with every beat. Little did we know, just how broken it was.

One year ago, my sister was having a birthday party for her son, he was turning three. Erik had just picked up Sadie the night before from my mom's house - that's where she was staying while I was home on bedrest.

I was so excited to see Sadie and even more excited for a long holiday weekend together. The days sitting here by myself were really starting to get to me. I was trying so hard to stay positive even though I knew something was just not right.

My sister had called to try and convince me to come along with Erik and Sadie to the birthday party. I wanted to go, so badly. But I was on strict orders from the doctor to stay put. My sister even offered to make up a place on the couch for me in her den, and bring me food or whatever I needed as the party went on - but, I didn't want to be stuck in the house, on a beautiful day with everyone feeling sorry for me. Alone, yet still surrounded by everyone. So, Erik headed off with Sadie to the party without me.

While I sat at home by myself I couldn't help but notice that something wasn't right with Sawyer. He was making his kick counts (10 within an hour) but the thing is, he wasn't exactly kicking. He was barely moving. Just enough for me to notice, but not enough to make me feel that he was okay.

We had known that my fluid was very low for the past month. I tried to relate that to the reason why he wasn't moving the way I felt he should be. But something in my heart kept telling my head to worry. And that's what I did.

I called over to the party and talked with my sister - crying between sentences, overwhelmed with dread. She said I shouldn't worry, and to call the doctor just in case.

Then, I called my sister-in-law who is a NICU nurse and explained to her how I felt. She has this very gentle way with words, and highly suggested I just go ahead and call the hospital. I needed that encouragement. I needed to know that what I was feeling made sense in some way.

By the time Erik came home and put Sadie to bed a few hours later, we were on our way to the University of Chicago. When I arrived, the standard tests were done. NST, BPP and everything checked out perfectly. The resident who took care of us that stormy late-spring night, reassured me that coming in wasn't a mistake. That she'd rather see us here and be wrong, than stay home and be right.

Two days later - she delivered our son, limp and gray, after my placenta abrupted.

Moments we miss

The ache to hold you in our arms again has been growing and growing the past few days.

Sadie and I picked out the cupcakes that we're going to bake for you on your birthday. White cake with yellow frosting and baby blue sprinkles. I think it's perfect.

Today, we were putting away a lot of Sadie's old infant toys after running them through the washing machine and setting them out to dry. Sadie dutifully helped put all of the toys carefully into your brother's toy box. Then she said "Can I play these with baby Sawyer when he comes home?"

It's moments like these that take my breath away. Moments like these that are a constant reminder of everything we have missed out on with you.

Sawyer, you are so loved - can you feel it?

We miss you so much. We love you.

One more time...

You are so beautiful Sawyer. I am aching so much for you right now. I want to feel you squeeze my finger. I want to know what color your eyes would have been.

All I want is to hold you one more time.

Just once.

But, I know that if I had the chance again, I would never let you go.

Sawyer's Tulips

Standing over Sawyer's grave today, I still feel like I just had the wind knocked out of me. That I'm still trying to catch my breath.

A new baby kicks inside of me and here I am, standing over the grave of the child that I had to let go. I sometimes feel like a statue. Frozen in the moment, nothing moves except the wind through my hair and the tears down my face.

Sawyer's tulips are already coming up. I bought some potted tulips last Easter when I was pregnant with him. When they died, I made sure to dig out the bulbs and save them - we planted them at his grave last fall. I bet they'll be blooming for him again by Easter.

Sawyer's Heart

Today we met with Sawyer's neonatologist to get a better understanding on his short life and the heart defect that took our baby too soon.

A healthy heart has four chambers. Between two of those four chambers, the left and right ventricles, there is a wall that separates the blood. In Sawyer's heart there was a "large subaortic anteriorly malaligned VSD" - simply put - a large hole where there was supposed to be a wall.

The American Heart Association defines a VSD as "A ventricular septal defect (VSD) is a defect in the septum between the right and left ventricle. The septum is a wall that separates the heart’s left and right sides. Septal defects are sometimes called a “hole” in the heart. It’s the most common congenital heart defect in the newborn."

Sawyer's VSD, the doctor explained, was large (between 5.6 to 6.0 mm).

Healthy hearts also have two main arteries that take blood to different parts of the body. The aorta, which takes oxygen-rich blood to all parts of the body - and the pulmonary valve (which branches into two arteries), which carries oxygen-poor blood to the lungs to become oxygenated.

The doctor went on to explain that Sawyer had "Pulmonary Atresia" - sadly, this meant that his pulmonary artery/valve was completely missing.

The American Heart Association defines Pulmonary Atresia as "a congenital malformation of the pulmonary valve in which the valve orifice fails to develop. The valve is completely closed thereby obstructing the outflow of blood from the heart to the lungs."

To make up for this catostrophic defect, Sawyer's heart formed several small "MAPCA's" which are small arteries that develop to supply blood to the lungs when pulmonary circulation is underdeveloped (Pulmonary Atresia in Sawyer's case).

His official diagnosis was "Tetrology of Fallot (Pulmonary Atresia) Truncus Type IV". Again, here is a better definition to help you understand the severity of Sawyer's heart defects.

"Tetralogy of Fallot with pulmonary atresia is a severe variant in which there is complete obstruction (atresia) of the right ventricular outflow tract, causing an absence of the pulmonary trunk during embryonic development. In these individuals, blood shunts completely from the right ventricle to the left where it is pumped only through the aorta. The lungs are perfused via extensive collaterals from the systemic arteries, and sometimes also via the ductus arteriosus."

All of this put together, meant that Sawyer's little heart - as hard as it was working and even with the maximum amount of help that the doctors and nurses could give him - would never function well enough to survive. If he had been full-term, there may have been surgical options for him, but this would have been if he could ever have gotten stable enough to handle open-heart surgery - to which the neonatologist explained "the outcome may have not been much different."

Sawyer was a very sick baby. With his prematurity and heart condition combined, there weren't any options for our son.

Over the past few weeks, I have felt immense guilt over the choice that we made to take Sawyer off of life support. Today, his doctor explained to us that it was only a matter of time before his body gave out. They were doing everything possible to keep him stable, and even then - his stats continued to drop rapidly.

The doctor told us something today that I will never forget as a mother. She said "There was only so much we could do and what he really needed was you."

And that was it. Erik and I quietly cried as the realization of what happened to our baby boy was finally understood.

No parent should ever have to sit there and hear the things we were told today. It was painful and heartwrenching to fully understand and comprehend just how serious and fatal his congenital heart defect was.

Our journey is just beginning. And as we begin this walk down a new road in our lives, our hope is to honor Sawyer's memory by working to fund research on all congenital heart defects and premature birth.

Again, thank you all for the continued love, prayers and support. We need them now more than ever.

Love - Erik, Michelle and Sadie Williams