Thursday, August 29, 2013

Taken to soon, but never forgotten.

Along our journey from the very start I seen the scary stories of the little ones who came before my Waylon, those taken to soon. The videos on Youtube that I sat and watched just to get an inside look into the new world we were thrown into. Watching them made it seem as if we were thrown into a roll of the dice gambling ring, some make it out, some don't. 

I found many mothers to bond with, those I call my fellow heart moms, sisters, friends, family. We love eachothers kids as much as our own and we are connected on a level that no one else in the world is because we know the dark secrets that hide away in our minds, those thoughts to scary to share with the world. Those memories that others would never be able to fathom except for the fraction they feel from a picture of our kids hooked to the dozens of machines to keep them alive. 

We become attached to these woman, and especially their heart kids. We check up on them, worry about them, love them. I am reminded daily of the lil ones who were before my son, those who were sent out to battle, but didn't come back. I follow many families online, but some are closer to my heart than others. And tomorrow marks a day to remember a little one who I never had the chance to meet. 

Lil Connor Wilson passed 8/30/2012. Just a couple of weeks before my Waylon was born. He was at the same hospital Waylon was born at and cared for for the first 3 months of his life. 

I had the pleasure of meeting his wonderful parents after choreographing a story with CNN about our previous hospital (where connor passed, and waylon was cared for the first 3 months of his life).  I hated the circumstances. I hated that ourselves and another family had to stand in front of these grieving parents with our children, still alive and doing seemingly well. My heart ached for this family, we came close so many times to losing our Waylon, but here we stood with our fighter. Wondering why one child was sparred and another was taken. 

This strong woman standing before me I did not pity, my heart ached for her but there was not pity. I seen her grief, but I also seen with in her a light that her Connor had given her with his short life. 

I seen a mother much like myself still fighting for her child. And what a beautiful child he was.

I see my son in the pictures of connor, the happiness his family brought him.

And the love that his family had for him. 

I never got to meet this warrior, but I care for his family much more than they could 
possibly know.

I am amazed at the strength this momma has and admire her fight for him still to this day, when others were to scared to stand up with me she gladly ran to the calling. 

So even though these lil ones are gone, they are never, and WILL never be forgotten!! 
Their families have graciously shared their lives, no matter what the length of it was, with the world. 

Since my sons diagnosis I often wondered what would happen to me, how will I make it through this, will I make it through. It's a common question for any parent who is given this news. I hate that so many parents have to continue on with their lives without their babies
and unfortunately it is a sad reality that we could face. 

But we hold tight, stay as strong as we an and push forward. We uplift those we have befriended and grown to love when they lose their child, and then we hold our children a little closer because it hits so close to home and we are blessed to have another day, hour, minute with our warriors. 

Please think of this wonderful family as you embark on your weekend. Think of sweet connor and enjoy his beautiful pictures (all given with permission of his lovely momma). 

Fly high handsome one! 

And know that so many people are missing and loving you on this day, even those of us who didn't get the pleasure to meet you. 

To his family: thank you for sharing the life and fight of your warrior with us, thank you for continuing to fight in his honor. And for just carrying on!! 

From one heart family to another, you will always have someone to turn to!

Sunday, August 25, 2013

The birth of a heart warrior.

With Waylons first birthday slowly arriving, next month on the 13th to be exact, I thought it only fitting to give the story of the day he was born.

I was restless, I knew what was to come the next morning. All the anticipation of what our babies face would truly look like. We had seen DOZENS of ultra  sound photos of his button nose, beyond chunky cheeks. But they do no justice for the real thing.


I laid worrying all night "How long will this take", "will it be worst labor due to the induction, will I have a reaction to the induction, will HE have a reaction to it." And what about his HEART, will he be able to make it through this process, his hole in his heart was the only thing keeping him alive inside me right now, I want to see his face, cuddle him, but I want him to be alive, maybe he should bake for longer (I was only being induced a week before my due date). 

The morning came and I was ready, bags packed comfy clothes on and tons of stuff for baby, especially the things from sisters by heart.  I was as prepared as one could be to push out a baby! 

Fast forward a bit!

Hooked to monitors of all sorts, Iv drip with fluids and pitocin (induction med to start labor). I laid talking to my husband. Family came to visit and a discussion about our lil one to come began. "He will come out and there will be NOTHING wrong" these words stated by my uncle, though well meant, stung like a knife in my heart. I knew of my sons defect, it wasnt just what doctors seen on a screen and told me, it was what I HAD SEEN on that screen. I know his words were meant for comfort, but they brought me nothing but a scary reminder that I was getting ready to give birth to a baby that only had half of a heart. I was angry with those words while I tried to focus on this scenario I was in, I felt he was saying that I was stupid and the years of studying and training I had were interpreted wrong by me. That all of the multiple ultra sounds I sat through with my lil bundle being the center of attention were pointless, and so were the tears my husband and I had cried meaningless. 

I pushed it aside and focused on what his face would look like. I watched his heart rate dance on the monitors like a ballet. He was squirmy and kicking the monitors and I thought to myself "this is the last time I will feel him kicking while so close to my heart, and maybe the last time he ever kicks" I cherished every jab along with contraction. I held out on an epidural until labor was moving along quickly, and then only got it just in case they had to wisk me away to have an emergency c-section because he wasnt tolerating the birth, they would have quick access to administer drugs if needed and no time would be wasted. 

My water broke on its own but Waylon didnt hold out on his first bowel movement so the amniotic fluid wasnt clear but tainted with meconium. So we were told that we may not get to hold him after he was born (something we had already prepared ourselves for, but still it hurt).

I was checked and dilated to 10 but the NICU team wasn't there yet and were 15 minutes out so the nurses told me to wait, hold it in. Like a pee, I was told to hold it in. But Waylon wasn't waiting anymore and my lovely doctor told the nurses she wasnt making me wait any longer (it had been 10 minutes!!). 4 pushes and our warrior was born. I only seen the top of his lil head, full of black hair just like his brother and sister. He was whisked into the next room to be assessed and I could hear him crying out, whaling. I cried on my husbands shoulder. The birth was over, I had no baby in my arms. I just pushed him out into the world to struggle.

Daddy was only able to get a quick video of him while they did his apgar scores before taking him to the NICU to begin his meds (prostaglandin, keeps the lil hole open until he can have surgery, only thing keeping him alive). I watched that video over and over until I would be able to see him. In the mean time family came back in to say their congratulations and good-byes for the evening. My thoughtful sister bought me gifts to cherish the moment and make me feel more comfortable while there (a world announced thank you to you lil sis ). 

A doctor came in to tell me that he was stable and they got a line into his umbilical (belly button) to administer his meds. He was 8 pounds 2 oz, which would work greatly in his favor within the next few days for surgery (pat on the back to mommy for packing it on for him, and daddy for pushing her to eat even though she was so sick she was actually losing weight instead of gaining). 

Hours later we were able to go to the NICU to see our baby. My heart raced as my husband pushed me down the hall to the elevator. And even more so when we made it there to see him lying in his cozy open incubator. He looked ginormous, but then again he shared a room with a micro preemie (gorgeous lil one might I add). I wanted to pick him up and hold him in my arms, feel his warm little body, but couldn't because his umbilical line was to sensitive, and could easily come out causing him to bleed out. So I just gawked at our beautiful baby, my heart breaking for the unknown journey we were ALL about to embark on.

After returning from visiting him we were moved to a mother baby room to settle in for the evening. Two beds, a tv and in the corner a rocking chair. I cringed as I was wheeled in to see the sight of something that is meant to be so perfect, but only made me think of the baby I was without. 

The phone rang around 2 am. The NICU informed me that our little Waylon had to be intubated due to apnic (stopping breathing) episodes. My heart sank, and even more so when early morning hit and the crying of hungry babies through the unit was heard. I wept for my little one to be with me. It was plain torture! 

Walking into his room I just wanted to hit my knees. My baby was not only intubated, but he had blinders over his eyes and ear muffs on his ears. He was so sensitive that ANY disturbance resulted in decrease in his oxygen levels and heart rate. Not only could I not touch my baby, but I couldn't speak to him to let him know I was there. 

Over the next few days he calmed a bit. Mommy was discharged and had to leave him in his little room in the hospital. I made it to rounds with his doctors and was told that he would be moved to the PICU the next day and surgery the following day after that. The roller coaster was beginning and I just had to bare down and strap in.