Tuesday, December 31, 2013

Whats in a year?

Whats in a year? 

Well I could break it down by the 12 months, the number of days, the date, the money spent and the money made. But there are many things of greater worth to be told, ESPECIALLY within our little family. 

This year was like a complete 180 from last year. Where we found out we were being blessed with another baby, I lost my job due to severe hyperemesis (bad morning sickness, to the point of losing weight in my 2nd trimester). On the day we found out about the sex of our unborn baby, we found out something was wrong with him. And the a snowball of effects that lasted the rest of the year and into this one. 

But THIS year our baby boy survived another open heart surgery, where he was extubated by the second day. Our baby was finally brought home after living the first 5 months of his life in a hospital, and he met his family! 

This year we made more memories than any pay check is worth (and most of them were FREE). Our whole family cuddled on our big bed so many times I have lost count. I have traced my babies scarred chest even more than that. We hiked up a mountain to look over the Kentucky river, ALL of us, with baby strapped to my chest through 4+ miles of  hills, trees, rocks, bushes and some mud. All while our baby was outside of 4 walls with beeping machines that were hooked to him, he was seeing nature!

This year we did a 3 mile walk for CHD awareness and to raise money for an organization that helped us out the year before by getting gas cards for us, meal tickets in the hospital, helping to rent a car so we could bring our bundle home for the first time from out of state and offered emotional support. 

We joined other organizations with the same cause in mind and have grown to love them just as much and mommy now sits at a table with other board members striving to help CHD families. 

This year we have all began and ended our days the exact same, with all of us under one roof, in our own beds. We are so BLESSED. 

This year we were on CNN to bring awareness of just how important TRANSPARENCY  in a hospital is, and which hospitals aren't focusing on it. We lost some friends because of standing up for what we believe, but we helped MANY more!  And because of moms hard work she was asked to come to a big meeting out of state that combines multiple hospitals that do the same surgeries and care all over that Waylon now receives from Michigan, all in an effort to provide the best care for the patients and continue to grow. 

This year we took simple trips to the park and watched our kids run free and smile, instead of cry because our family was split apart in different states. 

 We celebrated birthdays TOGETHER, one inparticular that we were unsure we would get to have. Our baby boys! 

Our once 100% tube fed boy now eats from a bottle and snacks on small banana puffs and other things. NO more placing a tube that was pulled out or ready to be changed because a month is up. Tightly swaddling a moving/growing baby and shoving a tube down his nose, and the back of his throat then taping it down on eczema covered cheeks.
We were finally cleared to stop lovenox injections because his blood clot in a major artery had FINALLY disappeared. No more jabbing him in knotted bruised legs with another needle 2x a day.

This year we LIVED!! We had hope for a better future for our CHD baby, for our family, for our selves. We found strength we didnt know we had, and found things we are good at. 
We have helped other families and been helped by others. We have watched our kids grow, not only in pounds, but intellectually and as people. 

We have also lost. We have mourned for our friends who lost their babies. We have offered comfort and love to them. And we will NEVER forget their sweet babies, and vow to fight for them and their parents so peace will be found. So these parents will know their baby was loved. 

As I sit with my beautiful family this evening, even with the next year of procedures, events and another open heart surgery looming over our heads, I will smile and even shed a tear. Because THIS year, we SURVIVED!! 

Tuesday, December 3, 2013

Where it ALL began!

On this day 7 years ago my husband and I vowed to love, honor and cherish eachother until death do us part. Here's our love story!
Prom 2006

The beginning of the year 2006 was a very crazy one. I had just ended a relationship with a toxic boyfriend and found myself in a whirl wind of a mess in my head. My normal depression had greatly increased and I had began self mutilation. I found my self calling out for help and asking to be signed into a mental rehabilitation facility. I discovered I had lost my voice, my character had changed and I needed to center myself again and surround my life around those who actually gave a crap about me. I came out refreshed and found an inner strength I didn't know existed in myself.

I had seen this boy everyday on the bus, setting alone, with head phones on sticking to himself. I knew of him because my best friend spoke about the guy she had JUST started dating the day before and he ended it within the same day saying they were more like brother and sister lol. It made me strike up conversation when he had to sit behind me one day and HAD to listen to me because his headphones had broken *score*. There was something about him, I just couldn't place a finger yet on what that was. Days followed and we spoke more, finding we had many of the same friends. The day came that my best friend tried to set him up with a freshman, he was a senior (I was a junior). She made the mistake of telling me her intentions. I smiled and volunteered to go with, but all the while in my head I thought "this chick isn't getting my man, Ive been working on this for weeks". I had to step in and take a chance. Numbers were eventually exchanged and deep talk about our intentions came into play pretty quickly. To many it seemed quick, and silly of such young people to talk about such things. But he and I were made to grow up early through our childhoods. I had to assume the responsibility of taking care of my younger siblings because my parents had to work to provide for us. And he, well that's his story to tell.

December 2006, Christmas.

Just on the cusp of our young love my parents informed me that we would be moving out of state for my Sr year because my grandfather was in bad shape. A discussion was brought up with my parents and he told my dad his intentions with me and that he would like to move out of state with us when he turned 18.

The day of his graduation he came over to help us pack our things and to say good bye for a little while. After breaking down about our circumstances he firmly tells me "MARRY ME". Yeah you got it right, no asking involved, that's his way lol. Months later we came back to pick him up to move out of state with us. He left his family, friends and all he knew for me, and all without me asking him to.

We had searched for a few weeks for a church and pastor to marry us but were very strapped on funds. Eventually we had my mom takes us to the court house to sign the papers, but I was only 17 so my mom had to sign me over. Even though we signed the papers my parents wouldnt let us share a bed because we hadn't said vows in "front of God", so after a few weeks searching we were set up with a family friend who would marry us.

The night before we had went to a dance at my high school and danced the night away. That school had never seen such dancing besides music videos lol. We didnt care who stared at us, we lived the moment up and held eachother close. The next night we laid on the bed talking when the phone rang and the preacher told us he could come RIGHT then to marry us. Talk about fast moving. But there was no question, we knew what we wanted and had already signed the papers. Who cared if no one else was going to be able to be there.

Standing in the living room of the house we shared with my parents, and two younger siblings we vowed our love for eachother and promised our lives to one another.

A crazy way to start out a life together and so many were against it because of our age or the fear of it not lasting. But here we are 7 years later. Our marriage hasn't been all glitter and pixie dust, we have had our ups and downs. The first couple of years were hard, just like with any other marriage. But we pulled through because we love eachother and we have learned lessons that 20 year long marriages have not learned from yet. Had we not had a lasting relationship and knew how to work together on things we would have NEVER made it through the things we have. Our families fighting with eachother, our families fighting with us, and especially not the required seperation of our family so that our son could get the best care.

Which also leads me to another fun fact of this date. On this day one year ago we were told that our son was in heart failure by our local hospital and that the surgical program for CHD kids there was at a halt at the moment ( we would later find that it had been on halt for a few months before we were informed). Instead of being able to enjoy our anniversary together we were making plans to split our family up for an unknown amount of time. 3 days later that conversation changed to action from the decision to move our son out of state.

We have been through so many things, this past year has been the hardest. But our strength and love for eachother has pulled us through. We are bumped, bruised and affected, but we are breathing and still holding eachother through it all. And we always will.

Our love story doesn't consist of a couple traveling the world together, having all of the riches in the world. But it consists of two people who are still madly in love with eachother. He is my back bone when I am at my weakest points. He has helped me to be a see my own self worth.

Lucas and baby Anthony, November 2007

Pregnant with ms.McKayla, april 2009

Pregnant with Waylon 2012

Happy anniversary babe. I wouldn't choose anyone else to walk this life with, even when you get on my last nerve lol.

Wednesday, November 27, 2013

Happy birthday my biggest little!!

On this day 6 years ago I was in a labor and delivery room waiting for my first child to arrive. Wondering what his sweet face would look like. Scared of what our new life would be like, how I was now responsible for another human being. Would I be a good mom, could I do this?

We had tried to walk him out on Thanksgiving day but he wasnt ready. He waited until bed time just as mommy was laying down for the evening to decided "Now is the best time!!"

Having back labor, I called my parents who were living in West Virginia to tell them to head out, then called my brother (who was my neighbor and our ride at the time) to take us to the hospital!

I looked a mess but was controlling my pain through breathing.

Hours went by and I slowly progressed to getting closer. People came and went to visit with us and to show their love. I remember my cousin asking if she could stay for my sons birth and that I was a bit hesitant because I would be a bit "uncovered" so to speak. But its a beautiful moment so I went ahead and said yes.

When my water broke there was maconium (babies first bowel movement) in the liquid so they had the nicu team ready for him. This was unplanned, I new things like this happend but didnt think it would (seems like a reoccurring thing huh?). He came out with a head full of black hair passed his shoulders, screaming. They suctioned a bit and handed him off to daddy because I was heavily bleeding. I watched as my newly born baby was making his way around the room seeing daddy, grandma and my cousin, while I sat scared something was wrong with me.

The bleeding was controlled but they whisked him out before I could hold him so he could be better suctioned and assessed by the nicu.

It was 5 hours before I got to see him and hold him!! But when I did I remember the feeling was so amazing. He was perfect in every way. With his tan skin and coal black hair, that was ALL over mind you, literally he looked like a little monkey lol.

Coming home for the very first time would be life changing. My husband and I had been married for 11 months and were now bringing home a new life to raise, to build up, to keep safe.

Watching him grow has been such a blessing. He is such a great kid, so loving, caring. He loves his family and his newest hero is his little brother.

When I became pregnant with our second, then third child I always worried he would feel "replaced", or forgotten. That he would become angry and act out. Amazingly he has been a HUGE little helper. Even when he rolled his baby sister off of the couch, who now in return beats him up (hes a lover, not a fighter). And making his baby brother smile is his main goal throughout the day, even when he is tired, or upset his "lil buddy" is his main concern.

Last year at this time Waylon was in the hospital still very sick, we sent Anthony and McKayla with my parents to West Virginia so someone could be with them and mommy could be at the hospital with their fragile little brother. We had to miss Anthonys birthday, there was no way we could leave the state to have a party for him when Waylon was so sick. So my parents had a small party for him and we skyped through him opening his presents and eating cake. My soul ached because I couldnt be with him on HIS day.

Some days I feel like he has had to grow up so quickly because of all our family has been through in the last year and a half. He and his sister have had to endure things they shouldn't have had to at this age. But they wear a smile on their faces, and they truck through the day!

I hope he never gets to big to have cuddles with his mommy lol. And that his attitude of spreading hugs and love to everyone (as annoying with the germs right now as it is lol) never leaves him.

HAPPY BIRTHDAY BUDDY!!!!!!!!!!!! We love you so much and we are so proud to be your parents and family.

Saturday, November 9, 2013

Underestimating Understanding. A siblings knowledge.

Our day was like any other day here at home with the three kids. We watched t.v, played, cleaned, etc. They made messes and destroyed the living room once again playing "the floor is lava, jump from couch to couch" game. 

We decided to sit down and watch a family movie together while daddy was at work and just enjoy eachothers company. I chose the movie Charlottes web, because why not, its a cute movie and I loved the book as a child. Kids enjoyed it and after the movie went off I went on to start dinner. 

Cutting potatoes for dinner my oldest came in the kitchen talking about the movie and informing me he didn't like it. I could't understand why and he seemed upset so I pried a little. He left the room but kept answering, mostly mumbling but upset. I had to walk to him and ask "what's wrong buddy, why didnt you like the movie?" "Is it because charlotte died at the end?". Finally getting an understandable response he informed me it was sad that they were friends and she died. I couldnt understand why he was sooo upset, I mean sure its sad, but he was full out crying. I started to put two and two together and said "is this maybe about something else, are you worried about something, baby brother maybe?" I could tell by his reaction this was right, he explained how they are friends and how Waylon could die, because he is sick. My heart sank and I had no other response than to just hold him tight. 

What do you say in a moment like this? How do you explain this to your almost 6 year old child, and how did he put these two things together. The only thing I could think was that THIS ISN'T FAIR!! He shouldn't have to worry about such things, and I shouldn't have to muster the words to explain it. And I think of how smart this little one Im raising is, sometimes for his own good. These same things race through my mind daily. CHD has spared no on in our family. Not even our other children.
Miss McKayla


They too have been through so much. No their chest wasn't cut open, sternum cracked, heart reconstructed, multiple tubes placed, drug withdrawl etc. But they have felt pain, and an immense amount. They were pulled away from mommy and daddy when their new sibling was born, the sibling was very sick and they never got to meet him. Mommy and daddy had to miss halloween, thanksgiving and a birthday. They were happy either way to be with their grandparents who they love so much, but they aren't mom and dad. They leaned on eachother, they were eachothers safety nets through this. 

Then you finally get to go home and be with mommy and daddy and then you find that baby brother is really sick and has been sent far away and mommy.... she had to go with him. So she misses christmas with you. 

We forget so easy just how much these two have been through and underestimate their understanding of the situation. It just breaks my heart to know that my child is so sad because he is scared to lose his "lil buddy". And that he comprehends just how serious Waylons condition is. I can't take his pain away and I hate that. 

All I know is I have some amazing kids! I am doing the best I can to raise them to be smart, courageous, caring,self reliant people in our messed up society. Thats all I can do, I cant shield them from everything, especially on this unmanned road we are on. But I will love and show love to them each and everyday. I can't explain this one to them though, I have a hard time wrapping my own brain around it. 

Tuesday, October 22, 2013


On this day one year ago Waylon was still inpatient and doing "well" for the week so far. So I decided to stay home and put his bed together and sort through his clothes to have it all ready for him to come home to. I thought it wouldn't be long before he finally got to bless our house with his graces. 

I recall this day often, almost daily. The day started out with me happy, but I had an unsettling feeling that something wasn't right, I couldn't quite put my finger on it so I played it off as guilt for not being at the hospital that morning. Even though I was planning on going in that afternoon. Scrubbing house, folding clothes and jamming to music when my phone rang. I answered to an inconsolable friend on the other line. A woman I met while at  the hospital. Her baby boy was there in the PICU with Waylon. I met her husband and her handsome older boy. We spoke daily, and grabbed lunch together almost every afternoon like clock work. It was my normal, her normal. Our only piece of sanity within our world of insanity. Someone who understood every concept of what the other was going through. The daily rides to and from the hospital. The hours spent sitting in a room with our sick children listening to peeps, swooshes of machines and the army of doctors marching in and out of the room. We would text throughout the day. Peep in on eachothers lil ones when the other wasnt in the room and text how they were doing to the other in case they didnt make it in just yet. We became eachothers confidants and battle buddies through this war of CHD and the roller coaster it brought. We knew eachothers lil ones diagnosis and the dangers they had faced so many times. So I was used to her text and phone calls, they were regular check ups for both of us.

But this day was different. The day before she finally got to hold her beautiful boy Rayshawn for the first time in 53 days. She had seen him on ecmo (life support) numerous times, dealt with his complications and stood by his side before and after all of his unexpected procedures. So it was a wonderful day for her to finally hold her baby in her arms again. Something she had become acquainted with since he was home the first few months of his life requiring only check ups from his cardiologist. I admit I was a bit jealous of the fact that she had gotten to hold her baby, bring him home and he got to live a normal life before surgery. While the start to our journey started out so differently. But I knew they had struggled with his complications since his surgery, including other unexpected surgical interventions.
My heart went out to her just as her heart did for me. We were connected through this journey. So I guess it was only fitting I was one of the first people she would call on this day. 

I answered as I always would, but the response was not the same. She was incoherently crying. I got her to calm down enough to understand that something was wrong with man-man (rayshawn). He wasnt looking right, acting right. I felt my heart sinking and I just wanted to run to her, I felt as if she was calling to tell me my own son was doing badly. I had no way of getting there and then the guilt set in. I wasn't there for her this one time, why wasn't I there, why didn't I just go ahead into the hospital that morning like always?!?!!? I was counting the time for my husband to get home so I could get to her, but time was ticking away. 

She continued to text throughout the day but things weren't looking any better. By the time my husband got home I was a nervous wreck and was rushing out of the door to get there. Walking into the unit it seemed heavy. I found my friend in the consult room. A room we all hated, dreaded, due to the seemingly bad news that was always delivered there. But the room was packed with people. I walked in past everyone to hug her. To show her that I was there no matter what and always will be. 

At 9:37 October 22nd 2012 Rayshawn "man-man"  Lewis Smith passed away. I felt as if I had lost one of my own children. But I felt even worst for my friend and her wonderful family. Robbed of their childs life, of his future, of the joy of seeing him grow. A hurt that will never go away. I had only come close to that feeling. 

There are no words I could say to her to bring him back, to make it "all better".  All I can do is reassure her daily that I am there for her and love her as family, along with her husband and son. While others unaffected expect grieving parents to "move on" and "get over it" or they are to afraid to speak the childs name in fear of upsetting a parent, when all they want is to know that their child is still remembered. I know that the pain will forever be there for them and there is NO time limit for them and the many others that I know who have been so unfortunate to have lost their child. No parent should experience this, but it is a sad reality for a parent of a critically ill child. That we could be stricken with the death of our miracles at anytime. 

So once again I hug my baby boy tighter. And I feel blessed in knowing this wonderful people and their warriors. But even more so blessed to have gotten to know this family. 

R.I.P. Rayshawn "man-man" Lewis Smith. You will never be forgotten.

Monday, September 30, 2013

"Your'e like an urban legend"

You never know the impact that someone is going to make in your life when you first meet them.
In my case the majority of my now close friends are ladies I had never met. Woman from across the U.S, dealing with the same day to day struggles as I am with my CHD baby.

Our journey has been a long one, with many ups and downs and these woman have been there since the beginning. There have also been a select group that have sought me out and have found common ground in fighting for the same cause as I have been since leaving our local hospital.

When I became a heart mom I vowed to spread CHD awareness, I didn't want another family to find out about their little ones defect right after birth like so many I know have, or to find out in utero like we did and know so little. But as life would have it, my journey once again changed when we found out our local hospital that was caring for our delicate baby was with-holding valuable information from us. I put my full trust into a facility that I thought was plenty capable of caring for my child because I knew no better. I was told to trust them they "have seen this many times". I asked for rates, statistics, numbers to go by to better understand their success rates of caring for children like my son. And in turn was given text book numbers and answers. Still blindsided by our sons diognosis we went along hesitantly. But after many complications, infections and a good friends CHD baby passing questions arose as to if we were in the right place.

Honestly those questions crossed my mind many times during and before our stay. Especially when I found the U.S list of top pediatric cardiothoracic centers, and our local center was no where on that 1-50.

December 3rd 2012 we found out our center had stopped their heart surgery program, it was also the day we found out our baby was in possible heart failure. Imagine the surprise it would give a parent, especially one who put all of their trust into a facility that they were giving the best care for their child. Not only was my child sick but my heart was crushed and I was angry with so many people. The hospital for not giving us this information, especially since they had decided to stop the program in october and instead of moving our "to complicated" child, they allowed him to sit in the PICU. I was mad at myself for putting my trust into someone. I am his advocate, his voice, his main lifeline, and I didn't get to stand up for him. And I was furious again for not being given the chance to stand up or given the chance to make the right choices for my son.

Online I found peace in woman fighting this same battle and I found there was a name for it. Transparency!! I didn't know at the time but I had already started my journey for fighting for transparency when I publicly spoke about our local hospital to a reporter. My fight began and a passion grew inside of me like nothing ever had.

Through my life I had always wanted to be something special, never felt like I was. I wanted to do something worth a damn. I never found that connection, came close to it when starting my career in the medical field. I never felt my true calling and pride in what I was doing until doors began to open in this fight for transparency.
On the set for CNN story, camera was waaay bigger than waylon.

We did a story months ago with CNN and I was asked to find other families to share their story, some where hesitant and some just plain said we cant do it. I didnt give up and I was happy to find two families willing to put it all out there with us even knowing that we would get backlash from people for it. And we did, slowly people began distancing themselves from us, some of which I considered to be like family. But this fight meant so much more and it only showed me who truly cares about not only my family but the many others affected through the U.S. I was hell bent and determined to fight for this and I have found many other woman willing to do the same.

Recently I was able to attend the National Pediatric Cardiology Quality Improvement Collaborative. For months after learning about it I tried to find every way in the world to get a way there. After persistence and some wonderful friends I was sent to the lead coordinator for the entire thing who I sent a link to the CNN story and our local news stories, along with the online petition I had started against our local hospital to release numbers. This collaboration is meant to pull healthcare teams and parents of HLHS together to find new ways to improve their care and help them to survive longer during interstage (the months between the first and second surgery home). While my son never made it home during this time I felt I could provide many things to this, along with my fight for transparency. Not to mention I would get to meet some of the people I speak to daily online and the teams of the hospitals I read about who have cared so greatly for waylon's CHD siblings.
making it to ohio for the collaboration
My traveling buddy, he couldn't stay home, was the only baby there!

Going in I had no idea what to expect. Warmly welcomed and set down at the Michigan table I listened contently about ways to improve feeding, weight gain etc for future kids. Ways to work on getting parents to stay on top of the daily weighing,checking of oxygen saturations and calling them in to their team back at the hospital. I was in ah of the room full of dedicated people putting their best foot forward to improving babies lives during this crucial time.

Most of these teams I had never met but knew so much about from the numerous posts I read from other heart parents about the "miracle" work they had done to save their children, the articles I read about their facilities new techniques for the 3 stage surgeries etc etc.

Time went on and discussion soon made its way to the topic I was ready for. I could see the division of the centers when a Dr. whose specialty is cystic fibrosis spoke about her fight for this very same thing (the article about this was given to us in email prior, and let me just say I cried while reading it, so much hope). But her take was a little different. She felt centers should open up to eachother first about their numbers and rates before making it public, in an effort to better themselves first. It struck me as she continued and I seen the wonderful lady who made it possible for me to even be there motioning for me to take a mike and speak out. It took no pressure for me to make this choice because I felt a parents perspective needed to be said.

"Why did all of you in this room choose the profession you chose?!!?" I led my rebutle with this. Stunned faces looking at eachother and I seen some nods throughout the room who understood exactly where I was going with this. You chose your specific profession to save lives, not for a certain facility, to put their lives above anything else, just as parents have. Parents know more about the things going on than what you would expect and they are more involved in their childrens care than what you may think or see. These numbers of your facilities need to be made public so parents can know just how your center is performing and they can make the best decisions for them. You have to also ask yourselves if your family was hit by this defect would you take your child to your center, or somewhere else, and if not your center why not, what needs to change at your center/how can you change it. I went on about parents fighting for numbers and how I had done this very thing with our local hospital in an effort to make local parents more aware so they could make the right decisions for their children and how if the numbers didn't come out there would be more of this happen throughout other centers with other parents because I wasnt stopping until they were released. How presumptuous and a bully I seemed, but it is all true words. Parents have to stand and fight for their kids to receive the best! Discussion began about a CNN story that had been seen and heard of and how this reporter was calling their centers for their numbers/rates. Many seemed scared throughout over this, and who wouldn't be if it was your facility and a public figure with many followers was calling your facility asking for this! Especially if you are a center that knows things need to change and your number on mortality rate is high. Again from across the room I see the coordinator,Kay, motioning for me to speak again.

But what followed I don't think anyone expected, not even myself! " I am the mom from the CNN story" gasps filled the room as people began standing up to see where this claim was coming from (I had to sit, rocking a baby and publicly speaking doesnt work well standing up!). I told them how I petitioned for our local hospital to release numbers and how I will continue to do so. My child came from a hospital who didnt even have a heart center for their heart patients, and that the time line they were speaking of it taking to get their facilities "up to par" was to long for children sitting in "crappy" facilities who don't have their stuff together and need alot of work. Its not fair for them to sit there unknowingly when there is another center that could take them on and care for them. We werent given the choice of this until the center shut down and my son was in heart failure, because of his insurance we were told we had to go to this local hospital who was not equipped to care for him, and yet they not only took his case on, but kept him there even after they knew they couldn't care for him.

My chest pounded, not from fear, but relief because I got to stand up and tell the story of my child and the many others like him who arent being given the chances they deserve in centers unequipped for them, something needs to change. I was honestly a bit afraid of what some would say after but was met with open arms by not only my fellow heart moms thanking me for saying these things to these people and stating that I was the person their facilities were likely fearing but by different hospital staff telling me how proud they were that someone was standing up, and thanking me for doing this because their centers didn't want to release until they received that call from Elizabeth Cohen (lovely woman might I add). And the one that got to me the most was a staff member telling me excitedly thank you for saying those things, we had heard about the CNN thing and pushed our board to release numbers and they were so hesitant, even though our numbers are awesome, and as soon as we got that call we released our numbers the next day!  "We didn't know if you truly existed, we thought you were some kind of made up urban legend, and now I can go back and tell them , yeah I met that mom, shes real!!"

All in all it was a wonderful experience and I can't wait until my next oppurtunity comes along. Meeting these heart moms was like meeting long lost sisters for the first time, was an unforgettable experience. I am so humbled by the many thank you's I receive for the work I am doing. I am far from a saint, and I am not alone in this fight. I have heart families backing me daily, and some standing right beside me. I also have heart centers backing me passing along the word to continue this fight because they whole heartedly believe this needs to be done!

I was so happy to be able to meet these woman I felt so connected to yet had never seen in person until now. I cant wait until the next time we get to work together on something. And I am so gracious for the hard work the coordinator and Motts childrens hospital did to get me to that collaborative giving me the oppurtunity of giving parents a voice. The work in that room that day was life changing and I would recommend it to any hlhs parent to try and make it next year, your voices and experiences need to be heard. 

Friday, September 20, 2013

Going to battle for the first time.

I can still remember the heaviness on my shoulders when I woke up on this day one year ago. The smell of the small room inside the hospital where my husband and I were bunked up for the evening awaiting surgery day.

The last few days still so fresh in our minds, as if they were a continuing circle, no day or night, just one long nightmarish day. Little did we know there was even more to come.

A few days before our lil one was taken from the NICU and placed into the PICU to settle in and get ready for surgery the next day, my husband called giving me the report that he was stable and successfully moved and settled in and that our sons nurse seemed so nice. We planned to get back there within the hour to see him and meet his new nurses and maybe, just maybe get to hold our beautiful/frail baby for the first time.

Entering the PICU seemed so different, yet familiar, we didnt know at the time that we would spend 3 months here on our CHD rollercoaster.

There he was all tucked in his incubator bed, with his machines and jewlery made up of wires. Extubated with a nasal cannula on in hopes that it would help after surgery to come off the ventilator quicker. His beautiful fat cheeks and perfect little chest. A wonderful nurse soon walked in telling us she got it approved for us to hold our little one since he would be going off for his first open heart surgery the next day. The joy that ran through me is undescribable. I would finally get to have my new baby in my arms.

They brought in a comfortable chair and pillows to help prop him up. My sister got to be there for the memorable moment and to take pictures. Joyful, we sat patiently waiting for him to be place in my arms. But something began happening, his machines began to beep, I seen his oxygen dip low and a slew of nurses,doctors and respiratory therapists came in. Rubbing his feet, sternum and head, shaking his leg and then bagging him pressing gusts of air into his lungs to trigger him to breath. We sat in awe that we were going through this. My husband and I grabbed eachothers hands, we didnt know what was going to happen, and honestly we were just waiting to hear that we needed to leave the room. Was this it, were we going to lose our baby before he even had a chance to fight, to show us what he was made of and everyone else in the world. Were we going to witness our child pass right in front of our eyes. With a critically ill child your mind often goes to these questions and you ask yourself what you would do, how you would react, when will it happen and which would you rather it be (not at all that you ever want it to happen). Would you rather them pass in your arms peacefully or when you stepped out for a bite to eat and you dont have to witness anything.

I watched his machines steadily go into the range he needed to be at, he had began breathing on his own and we too began breathing again. Not today, we told ourselves.

My husband was hesitant to hold him after the drama that just unfolded in front of us, afraid that something would happen again and that maybe he was to frail for us to hold right now. But the nurse and I reassured him that they would be right there if something happend and that we needed to hold him and bond with him in case something happend the following day during surgery, and because we didnt know how long it would be before we held him again after surgery. 
Placed in my arms the universe finally felt right, I felt complete. And he was content, it was the best we had seen him sleep since he was born.

I would have to tear myself away to go home, I didnt want to, but I had to. We needed sleep and we needed to see our other two kids. The next day was surgery day, or so we thought until we came back to the PICU and were told that he had "buggies" in his breathing tube and it could lead to infection so they started him on a round of antibiotics for the day and would hope for the next day. Hesitant if this was okay or not, we felt scared and relieved at the same time.

On 9/20/2012 we arrived for the day awaiting if it would be "the day". Meeting with surgeons we were told it was a go and he would be sent down to the OR within the hour. We made quick phone calls to family who was coming to wait it out with us and just enjoyed our time with him before we handed him over.

It was time and numerous people came in to take him away, and we were told we could follow so far. I stayed close by his bed watching his lil chest rise and fall and he looked peaceful, poor thing didnt know what was about to happen to him. A last good bye kiss was granted, but I was to short to reach over his lil bed so I kissed to fingers and touched his warm little head, telling him "I love you, be strong, mommy and daddy need you here lil man" something I had requested of him all morning. Stepping back on the elevator with my husband we hugged and wished to ourselves that we would see our baby alive again.

Waiting room filled with our family and we sat in the middle awaiting our hourly update. "He's under, and stable", "His body is cooled and they will begin the first cut within the next 20 minutes","Hes on bypass and the repair has begun, hes good so far and they are finishing his aortic arch reconstruction". All the while images danced in my head and thoughts of how my baby was the one I was getting these updates on, my baby was cooled, cut open, chest cracked open and they were cutting his tiny heart and reconstructing it to help him survive. I knew the images well, I studied the heart often while in school and even more so with his diognosis, including watching a youtube video of a norwood procedure being done. An hour went by and we heard nothing, another 30 minutes and I began getting a little scared. Most of our family had already began heading home so there were only a few of us left waiting when I recieved a call from the nurse saying that all was fine they just got caught up and didnt get to call. Talk about a heart attack and sigh of relief. But then it happend again, and longer this time. By this time my in laws were the only ones left and my husband walked outside for a moment when the nurse practitioner came to tell me that he did well through surgery but they couldnt control the bleeding and his heart was very weak so he had to be place on heart lung bypass machine or ecmo. I knew what this meant, and asked frankly that he was now on life support. My world crashed when she answered what I already knew, and there I stood alone with this news. I had to explain to my husband, and it was just hard to muster to words out of my dry throat. I wanted to cry, wanted to scream but I felt I had to hold my composure and he wasnt dead yet, there was still hope to have.

Surgeons finally came to give us a run through of what happend, but by this time my shirt was soaked with my own fluids. I had been pumping for my lil man since I had him but was to afraid to pull myself from that waiting room for fear of missing an update or a chance to see my dying child if something happend. So I sat for 12 hours waiting and now hurting and cold!

By the time we got to go back to see him we were told that he would be puffy, which we imagined from the other parents we had talked to, but we were'nt prepared for what we would see. Gowned up in our fancy plastic blue gowns and gloves we walked into a room with a machine we didn't expect and new people we hadn't met. But the sight of our son was the hardest to deal with. I have seen many things in my life but had never seen this, and for it to be our own child it just took our breath away and broke our own hearts in two. We weren't prepared for this, we hadn't been given the statistics of this happening or the imagery of what it would look like, and even if we had I don't think it could have saved our hearts.

My husband leaned over to tell me how hard this was for him and that he felt faint, and it took everything I had to keep from falling down on that hospital floor. We didn't stay long because he needed rest and less risk of infection with people in and out.
This was a few days post op, he was off ecmo but still not stable enough for chest closure

We walked into our room across the hall reserved for us that evening for the most severe kids there (how lucky we were right?). I made it two steps in the door after shutting it and I couldn't hold it anymore. I had been so strong through everything, I had my bouts of crying during the day and any parent in our situation would but nothing like this. I couldn't hold it in anymore and rightfully it was my time to break down. That machine was the only thing keeping our son stable enough to sustain life at the moment and the realization that we could very well lose him hit us like a ton of bricks. There would be no machine to help us go on and be stable if that happened and that was horrifying.

Today I look at this newly 1 year old laughing and smiling at his big brother playing peek-a-boy behind the window shades and I sometimes cant believe all that we have been through and how this once so fragile baby is sitting here so full of life and so unbelievably happy to be with his family, he doesn't know just how happy he makes us, and how complete we are with him here. He no longer has machines breathing for him, his chest rises and falls on its own with out mechanical support and so does his heart, beating to the sound of a washing machine all without those ecmo cannulas sticking into him pumping his blood through his body.His chest may no longer be "perfect" to those around us, but to us its a testimony of his strength and how he fought with every fiber of his being, even when he was so small. 

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.