"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.