NEW BLOG FOR SAWYER

Can you please all follow me over to "Sawyer's Heart" a blog dedicated to Sawyer about infant loss, working through this journey called grief and more. Thank you all for following this blog, but I feel that it would be more appropriate to have my feelings about baby Sawyer all in one place. We also have a fan page on facebook now too. Hoping that we can gain some followers thru that too! Thank you always for the continued love and support! xoxo


http://sawyersheart.blogspot.com

Cry

I've cried every day for eight weeks. It's not that I keep track, I just know there hasn't been one day that I haven't broke down. When did you have that first "tear-free" day? I want mine.

I hate this too Mammers

I can really only bitch on here because if I do it in another public forum, I feel like everyone will think I'm this ungrateful mother who doesn't know how to count her blessings.

Mammers came down with (seriously) hand, food and mouth disease (HFMD). Holy shit, is it awful. She has, not sores or blisters, but ulcers all over the back of her throat. I can't get her to eat or drink and giving Sadie her medicine is a battle within itself.

Ever since she was an infant - and I swear it's because she was in the NICU - giving her meds has been painful and heartbreaking process for us both. She fights and I have to hold her arms down under a pillow, then with my one free hand hold her mouth open (forcefully) and shove medicine down her throat. I HATE IT. Giving her medicine is so impossible at most times that I've resorted to Tylenol suppositories in most cases.

Now that Sawyer's gone, she's all I've got. And I hate seeing her so sick. I know she's not going to die. She'll be okay in a few days - but it is so hard as a mother to see your child suffer. I don't care how old they are. It's the second-worst thing next to losing your child. Trust me, I would know. And I can say that now with the utmost confidence. But, I wish I didn't have to.

Eight more weeks

On Tuesday, I would have been 36 weeks pregnant with Sawyer.

My doctor said she would have brought me in tomorrow to start an induction. I anguished over this day and that number for such a long time - even before Sawyer was born. Looking back on my blogs from May, my goal was to make it to 28 weeks. The actual day he came into the world.

I knew I was never going to make it this far. I talked to my nurse early last week and she said that she's "been doing this for 23 years, and there are the women we remember. The women like you who tell us the entire pregnancy that they know something is wrong. And they're always right."

I wish I realized it in my mind sooner. When I went to all those appointments week after week I would say the same thing over and over again - I didn't feel right.

I guess it wouldn't have mattered if Sawyer was born on June 1 or July 27 or August 24 (his actual due date). I know what the neonatologist said, "Even if he was full-term, the outcome may not have been much different."

But, to me the past eight weeks have been a blurry, painful nighmare. I could have had him eight more weeks. That would have been eight more weeks to get to know my baby. Eight more weeks to pinpoint what Sawyer's favorite food was. Eight more weeks that he would have felt my pure love and heard my heartbeat as we both waited, unknowingly, for the same end.

More questions, never any answers

I've recently started doing a dangerous thing.

I can't sleep at night, so I stay up, bargaining with God. Maybe he'll give me my baby back if I rewind my life and do things differently. Please God, I'll die. Take me instead, not my own child.

Then the crying starts. Followed by the sobbing. Finally, I'm so drained that my body has no choice but to sleep.

I don't know why my mind and heart play these games. I know Sawyer is never coming home. He'll never lay in his cherry wood crib. I'll never hold him in my arms.

Visiting the hospital and talking to his neonatologist made it all so real. And final.

As hard as it is to accept what happened, I can't help but search my soul for him and for answers.

Babies aren't supposed to die. I don't even know what the hell a "normal" birth is anymore. All I know is pain, suffering, heartache, grief. My babies rushed away, tubes shoved down their throats, tiny bruised hands. Sadness painted on their tiny faces. Where is our joy?

Sawyer's Angel Day

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