My son got a hemi!

NO seriously he did! One year ago today my husband and I snuggled our beautiful 4 month old and signed paper work as we prepared to hand him over to doctors. We signed papers that stated all of the risks and that we "understood" them all, again, for the second time in his short life. We were handing him to doctors again to help redirect the blood flow in his heart so he could live a little longer. Its never a "fix" for our son and the many others like him, but more of a bandaid to help them get through a few more months on the anatomy they have.

We met the surgeon for the first time that day and oddly felt at ease. Maybe it was the way they spoke to us, maybe that we were at a more experienced hospital this time. He explained everything to us, went through every step of the surgery and what to expect. Shook our hand, smiled and left to prepare to scrub in.

It had been a long few weeks since seeing my husband, and felt like even more to him since he hadnt seen his baby boy. Lucas had only held Waylon once since he was born, the day before his first open heart surgery they handed him over to his daddy.

A nurse, and two anesthesiologists came in to wheel him to the OR. Still holding him tight, rubbing his head I kissed him and put him back in his bed. Gathered our things and followed them down the hall way to the double doors. It was as far as we could go with them. Before making it out the alarms sounded! They had a new security program and someone had forgotten to call the front desk to have his ankle bracelet deactivated. Security ran in, everyone laughing at the silly mistake, and for one split second I thought of running off with my lil one. But I knew this surgery had to be done to SAVE him. He watched me all the way down the hallway and starred back as they turned the corner to part with us.

I had spent months in the hospital with this once fragile baby, who now had a HUGE personality and who LOVED his momma. They were taking part of my own heart with them, wheeling it away and I didnt know when or if I would see it again.

We left through the double doors, I choked back tears but held it together. We went to get coffee and a bite to eat before heading to the waiting room. The first lil bit takes the longest, getting him sedated and new access lines in to administer everything, breathing tube placed etc. A sense of calmness was over me, even though we had just handed our baby off, its unexplainable really.

Sitting in the waiting room we watched goofy videos on our laptop (its a lifesaver really!!) and read through crazy things that made us feel old. ANYTHING to keep our minds off of the matter at hand. We watched families come and go, we watched tears from scared mothers flow and we counted the hours waiting for updates, that came like clock work and each one was good news. We spoke about our other two kids who I hadnt seen since October, it was now January. We talked about family members and the craziness back home, and the fellow heart mommas who loved on me (and I loved on them) while being here. How they helped me through some tough times and we created a strong bond together, like family.

News came that he was closed up and the surgeon would be in soon. All had went well and we were excited to hear the report and see our baby boy within the next few hours. Our surgeon walked in, hes pretty cool, looks like a laid back samarai surfer dude, and we loved him!! He explained that the cutting took longer than the actually redirection/repair because of a procedure done at our last hospital and all of the scar tissue that had accumulated. He was very pleased with how it went. Later in the room it was explained to us that his heart rate was a bit low and that he had to be shocked during surgery because it got so funky so his pacer wires would stay in until his heart rate was at a safe place and there were no problems. But he looked AMAZING, compared to the first surgery, he was barely swollen, his chest was CLOSED, and he only had 2 chest tubes in.

Waylon did wonderfully! And they were able to do a Hemi-Fontan instead of a Bi-directional Glenn (explained by the surgeon, the difference is more of the way things are sewn in together during surgery for blood flow, and has a better success rate and easier for better Fontan surgery/success). His breathing tube was out early the next morning after surgery which was a big deal since he was oxygen dependant for so long, and had a hard time coming off of the vent. He was put on CPAP which is a crazy looking contraption that forces air in through the nose but is less than the breathing tube down the throat. He was off in no time and was doing great. Our only hiccup was a day before possible discharge Waylons xrays showed some plueral edema (fluid around lungs) and they were concerned. When put into another room I noticed redness around his chest scar that was healed together. He was put on antibiotics and responded quickly. We were finally discharged a month later.

The red around his chest was the infection that was being handled with heavy antibiotics

6 days post op!

After 5 long months in the hospital our son was finally well enough to come home (3 in our local hospital, 2 in Ann Arbor Michigan).

Thank you so much to the wonderful nurses, doctors, nurtitionists, therapists, surgeons etc, from C.S Motts childrens hospital. They were all terrific and helped our beautiful baby boy have great quality of life. We are going back in march for an echo from his local cardio and sending off the info to Michigan so they can decide when to set up a heart cath and 3rd surgery for Waylon. We are nervous, but feel he is in the BEST hands there. (Would also like to thank the wonderful nurses at UK who took care of our baby boy, there may have been a falling out of sorts between us and the hospital, but you guys did your best to care for our boy and you showed him nothing but love, thank you!). Because of a wonderful medical team our baby came home finally, he has quality of life, he keeps people guessing just how he does it while being so LITTLE. We get told all of the time by local doctors they never expected him to look this good, they didnt expect him to make it.

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!! 

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.

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.

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

Anthony!

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. 

"Man-Man"

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.

"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.