"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. 

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. 

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!

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. 

Fathers day!!!

I havent posted in a while, been trying to figure out how to write down this whole journey and keep everyone updated. But with fathers day being tomorrow I felt a strong need! 

I want to shout to the world how awesome my husband is! Yes, he can sometimes be a butt hole, but what man can't be and I wouldnt have him any other way. He keeps me young (I know Im only 24, but intelligently aged above my years). 

Through this whole journey everyone remarks just how strong us heart mommas are, how we have to deal with so much and keep it together. But they quickly forget about daddy. I guess it's because mommy carried baby, birthed baby, etc etc. Their lives have been flipped upside down just as much as the momma, heck the whole family has, but people fail to realize the thoughts that dance through daddies mind also. 

You see momma has the job of carrying baby, all while knowing (in our case anyways) that something is wrong with their unborn. Daddy has to keep mommy healthy, making sure that she doesnt forget to eat with all of the everyday tasks of taking care of the other kids, keeping the house cleaned,cooking etc. 

They don't think about how it affects daddy, how he too has sleepless nights, heartache, depressed moods, all while holding down his full time job to keep the family afloat and surviving. My husband has always been my shoulder and my extra backbone, but when we found out about Waylon he also became a defender for me. Pushing away and standing up to anyone who may say something hurtful during my pregnancy to keep me from getting to worked up because we had enough to deal with. 

When Waylon and I had to be life flighted out of state to Michigan to keep him alive people thought how awful it must have been for me to be away from my family, my other two babies, husband, and anything I knew to be familiar. All the while my husband worked his job to keep the bills paid in our lil home so that we would ALL have a place to come back to when we finally got discharged. Bills still needed paid, other kids still needed taken care of and shown love. 

Just because life seemed to go on pretty normally (all except for mommy being there), my husband had the everyday thoughts of "what if something happens today", "would I make it there in time to see my baby boy before he passed". He had to deal with the day to day normalcy without me there too, all while wondering if he would ever see or hold his baby boy again because we were so far away and things could turn from perfect and ready to go home to..... well you get the picture. 

It has been hard on both sides, both of us had to deal with so much while being torn apart and dealing with the unknown. But we dealt amazingly. Our relationship has been stregthened because we both have put in the time and leaned on eachother without question, and BOTH of us were there to catch the other. 

I have seen my husband at his weakest and most vulnerable moments EVER through this, but I have also seen him at his strongest. Seeing him with our kids makes me love him more with each passing day. The love he pours into them is priceless. My husband has overcame so many things in his life, including a hard childhood, but he didnt let it tear him down, he used those hardships to mold himself into a respectable family man. I see his devotion to our three beautiful children and myself everyday, and I wouldnt ask for any one else in the world  to walk this journey alongside. 

To my wonderful husband; thank you for all that you do for our family. Thank you for working even when I know you are so sick you can barely stand sometimes. Thank you for loving me, and loving our 3 beautiful children. Thanks for choosing me and always staying so faithful, even when I drive you mad. I admire your strength, your cockiness, your intelligence (even when they bug the crap out of me at times). Thanks for being my shoulder through all of this and standing beside me. 

Enjoy some photos of Lucas, my loving husband, with our kiddos throughout the years.

Heavy hearts.

Today I my head has been all over the place. Thoughts that I just cant seem to get away from, that have slowly been creeping up on me for a week or so.

I look at my beautiful boy and I am so thankful for him being here. For his beautiful face. I hold him close, his smell like a drug to me that I just cant get enough of. For months my boy laid in a hospital bed, surrounded by machines helping to keep him alive. Wires hooked to and inside him. Constant beeping became our normal and silence became scary.

I go to his cardiology appointments and I wash my hands before pushing a med through his feeding tube. The smell of the soap flashes me straight back to that hospital room, with all the machines, all the fear.

Its been happening more frequently, a smell, a look he gives. I get brought back to those moments that my boy was so frail, and it reminds me that even though he is doing so well right now, that he has been at a weak point and could easily be there again. Reminds me that one day he will have to have another major surgery (if not more), and in the future, a heart transplant. I think to myself "how could I go on without this little being". I think of my other children, 5 and 4 years old, and all of the memories made with them. All of the good night kisses, hugs, and "I love you". I cant imagine getting him to that age and losing him, after getting to know him so well. I cant imagine losing him RIGHT NOW.

While shopping today I seen a beautiful baby girl around the same age as Waylon, sitting up alone in the grocery cart playing with her mommies car keys. A wave of emotion hit me and I wanted to start crying in the middle of the store. Because my baby doesnt do that yet, and with his condition (even though hes doing well right now) he could be taken so quickly without a moments notice and never be able to.

Tonight two others fell victim to the cruel monster called CHD. One of which I kept up with through facebook. I enjoyed seeing his adorable little face pop up on my newsfeed every day as I scrolled down checking up on family and friends. Looking at him tonight I see my son. The chunky cheeks, the fingers in mouth, the "old soul" eyes.It hits home even more!

This cruel beast has robbed again. Taking memories made and parts of those who knew of them hearts. Families never to get a moment with their precious lil one again. Only favored blankies, pacifiers and pictures left to remember them. Family photos are never the same. A photo of the precious child held by family members symbolizing that they are never forgotten and will always have a place.

So I cherish my sons every moment of being with us. Holding him close to my heart, feeling the rise and fall of his chest and the fast beat of his heart. Smelling that certain smell he has, pressing my lips to his head feeling the warmth of his skin and the softness of his light brown hair. Seeing him smile at his daddy and listening as his brother and sister giggle at his new trick of sticking out his little tongue.

Our thoughts and hearts are with families who have lost. The children taken so soon have been looked at as our own, and have become family. They understand more than anyone day to day struggles with our childrens medical needs, the aggrivation of insurance companies, medical supplies, the hundreds of medications, the dirty looks, and the criticism from those who dont understand or agree with us choosing the fight for our children.

I will never feel that my husband and I's choice was wrong. We have given our son the chance that any person has deserved. I see a miracle every day before my eyes, and I am happy to call it MINE.

Acceptance and understanding, or lack there of.

For a few weeks I have rehearsed in my head just how I would word this post. I know that either way its going to affect people in different ways, wether it be mad, sad, who knows. But I have to write it, I have to have some closure from the words dancing around, from the overwhelming feeling that "it needs to be said".

I find myself so angry sometimes here lately. This whole situation is not what someone would ask upon their family. Who would want their child to struggle, to worry about the outcome of their childs life, worry how the things they went through as babies would effect them so greatly. Like, will the brain bleeds and seizures affect development, muscle usage, inteligence? Will he be taken far to early.....

Will he be taken early. This one really gets me. Whatever delays arise I can deal with, I will make it work. But that whisper of reality comes to me daily. And rightfully so with my childs anatomy and the fact that there isnt enough funding just yet for his condition.

Long ago I accepted his condition, it is what it is and there is nothing I could do or could HAVE done to change the outcome. We just have to be in this and take everything it throws at us so we can see this little face! When given our diognosis I first blamed myself as any parent would. I went over and over in my head what I could have done wrong to have made this happen. I have medical training, a college education. Aced anatomy and physiology 1 and 2. So I did just as I did in school and threw myself into research. Looking at outcomes for children born with HLHS, for the statistics, the complications that can arise, developmental delays, feeding issues, strokes, and so much more. But there was something I never expected through all of this. Acceptance and understanding from others.

No matter how much I researched and prepared myself, no one else (except my husband and others who have been this journey long before us) could understand this. I have fought so hard for my son to live, for the right decisions to be made from doctors, constantly working along side them to make sure that no stone was unturned on any diagnosis. I put the info up for everyone to learn, I have advocated to pregnant friends and family so they know the signs and what to ask. I have implemented strategic guidelines from the very beginning with my sons best interest at the top of the list. But people still dont understand it.

Its hard to understand the anatomy. How a simple cold can take Waylon down. I believe some think Im just being overprotective, overly cautious, blowing things out of proportion. Im here to tell you now, Im not. I have seen the devastation first hand that simple cold can bring. How everything can be going so fine and turn around just as quickly as you blink. I have set on the phone with a mom all day while her son was fading away, when just the day before she was holding him and there was so much hope.

I have been told I need to chill out, calm down. I say this... When you have walked 1/4 of the journey I have walked with my son to keep him alive,set by his side as he struggled to breath, while his chest laid open due to severe swelling, watched your 3 month old have a seizure, watched them try to cry out for you but they couldnt because they had a tube down their throat because otherwise they couldnt breath. Then maybe, just maybe you may have the right to tell me to "chill out". I know the precautions to take to keep him healthy. But even with the best efforts of this it still couldnt stop a harsh infection getting to him in the ICU, even when we had to scrub, gown up and glove up before we even entered our sons room. Precautions were always taken, and he still got a severe infection, one that left him lethargic and in a comatose state for 3 days, resulting in another brain bleed and being intubated again because the infection was so bad he couldnt breath on his own anymore. All while strict precautions were taken.

This is why I ask that people not come over if they are even sniffling because it can be more than allergies. To not come if they have been in contact with someone sick because most viruses take at least 3 days to show symptoms. And so much more, all to keep him safe.

I think people forget because he is doing so well right now. Because he is home, smiling, growing. So people forget quickly that he only has half of a heart, one that needs to last him the rest of his life, one that already has decreased function in the side that does work. If at anytime he were to get sick it would take away more function of his heart because it would be on overload due to the sickness. Or could give his heart an infection that could result in major complications, such as needing a transplant sooner or death. And FYI not all are candidates for heart transplants, and they hold their own mess to deal with.

Lets put it this way, if you were to buy a cheap battery that only had half the charge it needed (we all know how those dollar store batteries are lol), everytime you used it more of its charge is gone, it works less until no more. This is how waylons heart would react.

So yes, sometimes I may seem a lil anal about people coming around sick, with even the slightest of symptoms of something, because we never know what it could be. And I need to protect him the best I can. If people cant understand it they may have to stay away. I know it sounds harsh, but I have to do what I need to to keep him safe, and if other people arent going to be on board with me to keep him here on this earth than I cant take that chance. I need willing and loving people who want to make sure everything is in his best interest. I dont mean making him everyones main priority, but it doesnt take but a second to think "hey Im not feeling well, Im not going to go around for a few days until I know im feeling better", or "I was around someone sick today so Im going to hold off before going around just in case because those germs could get to him quicker and easier than a healthy person", "I went and seen lil Waylon today and now im not feeling so well, maybe I should give his mommy or daddy a call and give them the heads up just in case it is something".

I can no longer feel bad about hurting peoples feelings or making them mad if I know im doing what I need to to protect him. People dont realize that it doesnt just affect Waylons health, it also takes away from our family. If waylon were to get sick again I would have to go out of state again for his care, leaving behind my husband and other two kids again. So no I dont take things to lightly anymore. And Im not the same Tabitha that I use to be. I use to sit back, be quiet for longer. But I cant do that anymore, especially when it comes to my sons health/life. I am doing what I need to as a mother, and if another parent cant understand that....., well then I have no words for them. I have done what I need to to inform people about Waylons condition and the precautions needed to keep him healthy, it is their decision to listen and learn the info and my duty to implement it.

Help us keep Waylon happy and healthy. Take the precautions, make the call if you need to. We want this smile to last forever.