Finding understanding

Since the beginning of this journey my husband and I have been struggling to find understanding in this whole thing. Questions dance in our heads daily, and even still now. 

Did I do something to make this happen?
Why us?
How will we make it through this?
Will we have to bury our son?And at what age?

The world has seemed to be against us from the beginning. With ugly statistics and stories of heart ache from other families we've grown close to. 

I have seen first hand the heartache of those I have let in when a child was taken to early. And as a heart mom my heart has broken too. It hits to close to home. One day they are fine, your loving on them and they are smiling and the world seems right. Then the next day rock bottom smacks you in the face. They can fade so quickly. It leaves a permanent hole in the lives affected, and not a hole made from a heart defect. This hole will never be mended like the trials of "fixing" our lil heart warriors. But like them we have to learn to keep going and re-route our lives with what heart we have. 

True understanding of a CHD will never be there. We can find statistics, find surgical temporary remedies. But to truly understand CHD and how a mother or father of a child copes with CHD will never be there. There is no book on how things can pan out. There is no "What to expect when..." we just have to go with what we are handed, and let me tell you its a crappy hand! And for others to add in their input on how "they" are feeling through this and how much its affecting "them" adds insult to injury to us. We love our families, all heart families do. But no one can fathom the ache your body feels for your lil one. You can sympathize, have empathy etc. You can try and place yourself in our shoes, but our shoes are to big to fill. Our fears will never get to subside. We dont get to feel bad then go on with our daily "normal" lives like others. We don't get to chose to step away from this. We are forever in this whirlwind of our "normal" that only those in our community, the heart community or heartland as we call it, will understand. I know for some families that hurts. You use to be the one that we went to to talk to about our daily struggles. But when we got the diagnosis of "your child will have a hard life and need much care" changed our lives. And because you don't understand it's sometimes hard for us to talk about our struggle. I will say that you should be happy for us though, because through all of the struggle we endure, there are others out there who have been there, who can offer advice, a shoulder and they all understand what we have went through because they have been there too. Its not that we love you less because you haven't lived this life or fully understand it, hell we don't even understand it all. We love you the same as always its just harder for us to speak out to you about our struggles now. And honestly you never will. That's one reason for this blog. To help others who aren't living this life can better understand what CHD families go through on a daily basis. 

We know that you feel for us, that you to hurt because of what your neice,nephew, grandchild is going through. And you feel for your child who is a parent of a CHD child. 

I read a book recently written by a mother of a child with HRHS, the opposite of HLHS, were the right side doesnt form. It's one of the only books from a parents perspective on life wtih CHD. I read one of the last pages that I and many other heart families agree greatly with. 
There is a section for family members or friends reading the book that states how you should approach a heart family and their struggle, how you can help in their time of need and things NOT to say. It reads as this:

The only big no-no that cannot be excused is a foot in mouth, or misplaced concern is this:

Unless she is the mother of your child, or your own mother, never, ever,ever tell a mother of a child who is near to death how hard this is emotionally on you. You don't get to do that, I forbid it. No matter how hard it is for you to see a child like that, unless it's your child, zip it, lock it, and put it in your pocket. We'll forgive you for just about anything else.  

From amanda rose adams book heart warriors - a family faces congenital heart disease.

This is not to hurt peoples feelings, but to shed light on how we feel on this matter. We appreciate that you care, many people don't and we have lost people along the way on this journey because of it. We don't want to seem mean or hateful, but we don't have the time to feel bad for others because of them feeling bad for our situation. I know sounds horrible. But we are, and it seems this way, selfishly consumed in our own feelings through this. Feelings of fear, doubt, heart ache, anger. We are having a hard enough time keeping our selves together through this so we can raise a child with a life threatening defect. So we unfortunately don't have the time or means to feel badly for others feeling badly. All of our energy is spent holding our heads up and keeping strength in the face of CHD, in the face of our child and what their life may hold. In the end of the day we don't have energy for anything else. So we ask that you just be there for us, love us, love our children. Help us in this fight so other families don't have to face this. I know its hard to ask that after telling you how selfish we are. But out of everything this is ALL we ask for. 

 

Getting to the HEART of the matter.

As some of you know from being friends with me on facebook or apart of my sons page, today starts CHD awareness week. You will see posts about statistics, pictures of hearts filling up your page, and for some, you will get to see the many faces of CHD. 

Our kids look like regular kids. They play, laugh, and they love with every part of their pieced together hearts. Many will never know the struggle they endure. The agonizing pain they went through as babies, and yes even as babies no matter how much we try to help them forget, wether it be through play or drugs (yes they have them for our tiny lil babies) they dont always forget, and they dont always know why they are scared. Just to inform many, some end up with PTSD. I know right, isnt that what some soldiers get after being in war?! Trust me if you went through as much as these kiddos went through you would see why. But these kids, these miracles, they still smile, they still thrive. I guess this is why CHD is so forgotten about. Even though it shouldnt be!! 1 in 100 babies will be born with a CHD, from mild to severe. Can you imagine that? Being on the street, looking around a crowd of people and then thinking, 1 in 100. Kind of scary huh? But yet, its not known enough as it should be. When was the last time you seen a commercial with a child and their chest was cut open because they had a CHD? Never huh. Me neither, but I will tell you what I have seen. Sick children living with cancer. Its truly heart breaking watching the struggles of those children, especially ones that are as young as 6 months. 

Little secret.... my son had his first open heart surgery at 7 days old. Crazy when you think about it. Even crazier that twice as many children die from CHD every year than ALL childhood cancers. Yet funding for our kids is still bare. So we get this one week every year that we have to send of proclamations to our governors for so that we can spread awareness to the public. Its not like breast cancer awareness MONTH were everyone knows when its happening. We all know to expect the array of pink passing by. Store windows draped in pink tule, ribbons worn by men and woman. Merchandise that gives a percentage of proceeds to Susan. B. Coleman to help fight the war on breast cancer. I have NOTHING against fundraising for childhood cancer or breast cancer, let alone any illness that affects us as human beings. I have known a child with leukemia when I was a teen, I prayed for him every night to stay in remission, because no child should have to suffer. And breast cancer hits home to me, not only has my family been affected by it from my great grandmother to aunts. But I am a mother, a wife, a woman! I would be leaving behind 3 beautiful children and wonderful husband. I have fed and nourished children with my gifts, made them strong, healthy. I have a much larger chance of being diognosed with breast cancer even now at the age of 24 because of my families history. I also made another statistic though, 1 in 100! My child was one. I never expected it to happen, yet it did, and it has happened to many others. 

Let me put it like this, every woman was once a child. So it only makes sense to start with their hearts! 

So these posts you see "taking up your newsfeed", they're not just something someone like because it was cute, or was put out their to gain attention for the wrong reasons. It was put there maticuelously to make others aware of this terrible thief that's stealing our children away. 

Just like spreading the word of knowing the signs of breast cancer, there are also signs to know for a possible CHD. 

 So the next time you see a post about CHD, use it as a tool, share it and add some advice and knowledge for others!! Its simple, easy, takes 5 seconds. Takes as long as it does for you to hit share on some random ecard that you thought was funny or relevant to your life. News flash! CHD is relevant to your life! 1 in 100 people!! 

So I ask of you during this week to help spread awareness. Awareness gives knowledge to others who wouldn't have otherwise known, it can save a life, and it can help create more funding in hopes that one day our kids will out live us. Twenty years ago babies born with HLHS, waylons defect, were thought to be hopeless causes and most were sent home to pass. Now funding and research has helped these kids to live. And hopefully one day we wont have to worry about outliving our children! Advancements are being made, but not nearly as quickly as they could if CHD was more known. So please spread awareness!

4 1/2 hearts

In early 2012 my husband and I found that we would be adding another child to our lil group. With already having two other children we already had a routine down and was well established in making memories. We began telling those close to us of our new little bun in the oven, and the excitement to come. Including allowing our kiddos to tell my parents via skype and the official paper from the doctor. 
        
            I couldnt help but feel that something was different with this pregnancy, but couldnt really put my finger on it. My belly grew, planning continued and excitement was brewing. That twenty week anatomy scan was coming up and we were ready to find out about this squishy mystery. 

             I had high hopes of a natural birth this time and wanted my younger sister to be apart of the process. So it seemed only fitting to invite her to the big reveal. All three crammed into the ultra sound room. My round belly and I laid on the table and I welcomed that warm goo onto my bump. Waiting on the big reveal we watched as little fingers waved over the screen, four extremeties accounted for, and that beautiful profile of babies head and sweet little nose. Measurements were taken, kidneys,lungs etc all check. The tech glided over the heart a few times trying to get a good look, but no luck. So she went ahead and revealed to us a little boy! I had already noticed his wee parts when she rolled over his legs, but didnt want to tell dad yet. I look at my husband as he was gleaming, another boy, a brother for our oldest, a best friend and hubby another buddy. The tech slid me to my side, pushed,poked, and shook my belly to try and get a good picture. With every glimpse of his heart mine sank more. I only counted three chambers. With previous experiance in medical training I knew what certain things looked like on ultra sound, and I knew how a heart worked. This wasnt right, a heart has four chambers. With not much luck she printed keepsake pictures that we carried out to the waiting room so we could be called back to see our midwife. I mentioned that I had a strong feeling they were going to say something was wrong with his heart. My husband and sister tried to keep me calm and reassure me that he was just difficult and that all would be fine. So we sat, each passing around the pics of our little boy. 
         

           My name was called to go back. We sat in the room waiting. A knock and slowly our midwife walked in. This happend faster than any other appointment, which was weird. She told us we didnt get a good look at his heart so they were sending us to the diognostic center for a better ultra sound, more "high tech" she called it. "Don't worry just yet because this happens and he wasnt very cooperative, its all just a precaution". We proceeded home, informing everyone we would be welcoming another boy into our lives. We put our other kids to bed after dinner,warm baths and their excitement. As much excitement you could get from a 4 year old boy and a 3 year old girl. Hubby and I sat contemplating the list of names we had discussed weeks earlier (I like to prepare).
A few stood out but none more than Waylon Alexander. A bit reluctant at first because his initials would be W.A.R. So we held off a bit more to make a permanent choice. I took a warm bath and laid in bed, worrying " What about his heart", "what could it be?". So I took to the internet trying to figure out what could go wrong. Looking up images of fetal hearts at twenty weeks gestation and what they are suppose to look like. I found nothing that satisfied me. Days went by and I didnt speak about it because "everything is fine". 
              
            The day came for our appointment. We sat again in a waiting room. Flipping through those month old magazines. Skimming through baby gear and making mental checklists of what we would need for this baby and what we have left over from our last two ( kept ALOT). "Mrs.Rainey" my name had been called again, and older woman stood in the door, holding a folder that I could only expect was my chart. Lucas (my husband) was told to wait while they get me situated in a room. The normal weight check, blood pressure etc was done. And I was walked to a big ultra sound room and asked to sit. The tech rambled about the pregnancy, any weird symptoms, was man in the waiting room my husband, was said man the father of this baby and my other two. I wanted to say "duh" but in this day of age you never know, and this lady hadnt seen pictures of our children who look JUST like their dad. And I was anxious, so I just let it passed and answered her other million questions about wether any one in our families had birth defects. Finally they walked my husband in who took a seat beside me. We stared at the big screen in front of us, waiting to see our baby boy again, and I, waiting to find out what was wrong. She took measurements of his bones again, checked for all organs. Then slid to his heart. Carefully examining every section of it. I watched as it squeezed. Three chambers and one small one. Watched as blood flow mixed from red and blue to mixed. Narrowed ways were I knew was suppose to be much wider. I knew something was wrong and that it wasnt just my pregnancy fears. Light from the hall dashed in when two doctors opened the door and walked in. Words I remember from my medical terminology classes were spoken, I glanced at my husband out of the corner of my eye and could see he was nervous. He knew nothing they were talking about, but knew something was wrong. I, knew the specifics they spoke. The doctor stopped and looked at us saying "excuse us for a moment, we are just speaking our doctor jargon, we will explain in just a moment". I explained to him that I already understood what he was saying. He walked a diagram over and showed us what a normal heart looks like, then explained what was wrong with our sons. He diognosed him with Critical Aortic Valve stenosis. He also explained that his left ventricle was very small, so had four chambers but one wasnt working right and that from his years of experience, it would eventually grow smaller and not work. He went on about how it was so bad that it would eventually turn into Hypoplastic left heart syndrome. That our son would be a very needy baby and that percentage of life was low, but there was "some" hope, especially with the advancements in surgeries for this over the last twenty years.
     
            We were told we had three options. 1: to put him through three very intense and advance open heart surgeries. 2: Heart transplant. 3: paliative care. The open heart surgeries would occur at 5-7 days old, for the first, 4-6 months for the second, and 18 months - 4 years for the third. Later I learned with research, that even with the three surgeries he would more than likely require more surgeries along the way and a heart transplant by age 18 due to anatomy. Many do not know that heart transplants come with their own problems. People believe that the transplant course is much easier and everything is fine and dandy. IT'S NOT. First another baby has to die for a heart to be available, and many forget that another family will be losing a life so that another may live. Second, you can be waiting for a long amount of time for it, because people dont expect to lose their baby. Also because it all depends on the way the baby dies, like if it passes from SIDS, the babies usually are not found until to late and the heart isnt viable. Third, baby has to be on rounds of drugs for immunity suppressants so their body wont reject the organ. And many also do not know that even years later your body can go into rejection. Fourth, they have a higher chance of having other organs fail, and to get cancer. So yeah, its not the perfect choice either, to us it was a last choice for if his heart was to damaged. Then there is palliative care. More less you keep baby comfortable and let them pass. 

           The doctor mentioned that there are certain birth defects (chromasomal) that could be a factor in his heart defect. So not only did we just find that our son had a heart defect that would most likely change to one of the worst heart defects, but that he may have something else wrong with him. Like down syndrome.  My mind raced with this news. How would we care for a child with this many problems. Selfishly I thought of how people would look at us, I know how many talk about children with mental retardation, and not all are very pleasant!! I thought of how others would blame my husband and I as parents, (later I would learn that we would get blame pushed on us anyways). I wondered how our other children would deal with this, with the heart defect that needed so much care, with mental retardation if he had it. I have taught my children to love all people, but would my teachings still find them. How would their lives be now, not only were we adding another child to our family, another mouth to feed, boo-boos to kiss, hugs to give, time to be managed between now three children instead of two, but, we were adding a child with great difficulties ahead. Difficulties that parents never imagine to happen to them. My poor babies, their lives were changing too. And I felt ashamed that I would be taking away their innocence far to early. My heart broke for them. Since the doctor mentioned a possibility of a chromosomal defect he looked through my chart to find blood test results that I had chosen to do weeks prior, the test tells if there is a possibility of downs and spina bifida along with other things. Mine results however, had not come back yet. So he gave me the option of doing an amniocentesis, and since there was a chance I might as well go ahead and get it done since pregnancy doesn't stall, and time was ticking, we needed all the time we could to research anything that could be wrong and to weigh our options of medical treatments. So I consented for the first time of our journey to put him at danger. Dad, the needle phobe that he is, stepped outside. I finally relieved my bladder and gowned up. The doctor talked to me once again about how much care this baby would need. He then went on to mention termination. I could not choose this route. I could not terminate this lil being that was was growing in me, even though his heart didn't get the memo on growing the way it was suppose to. This was something no one expected, or chose. This was nothing that could have been prevented, because I did what I was suppose to while pregnant, I ate what I needed to and got plenty of exercise from chasing my other two kids around. I didnt smoke, didnt drink while pregnant, hell I didn't even get in a tub of water that exceeded a certain degrees for fear of damaging this little one. So termination was not an option. 
   
       I laid on the exam table, Dr on one side, ultra sound tech on the other. Wand in hand she watched carefully were the Dr would jab a needle through. I knew of the procedure from my earlier medical training, and from my earlier pregnancies when I once again prepared myself by reading everything I could, amazingly enough there was no material on how your babies heart could malform. I knew of the risks of this procedure but I also knew the benefits. I laid as still as possible and tried to keep calm so baby wouldnt get aggitated from my heart rate and start squirming, because well he had enough going on. A small needle went in "a little bee sting" the doc said. It burned, but I stayed calm, this was nothing compared to what my baby would have to face in the future, so I took the small blow. Then a MUCH larger needle was presented in front of me, I cringed at this. I watched back and forth from the needle in my ballooned belly to the screen were my baby was, hoping that he didnt move, willing him to stay still so to not be punctured by this huge object. 

            We went home with our news like a black cloud hovering over us. We spoke about our options and my husband voiced that we can't take our son home to just die. We have to give him a fighting chance. So we chose the three surgeries with a possibility of a heart transplant in the future. Our hearts shattered as we drove to our other kids, wanting only to hug and cherish them and their health. We knew that from this day forward our lives were changed and that for now on we would have to take things day by day. 

               We gave the news of our baby and could tell that it affected so many, but knew that none of them could ever fathom the pain that we were enduring. I chose to inform everyone and to take a step back for a while. Away from social media, phone calls, anything that may stress me. I wanted to focus on what was going on and to give my time to my other kids who would be thrown into this whole messed up situation. I just needed to gather myself and allow myself to grieve. Grieve for the normal pregnancy I wasn't going to have from that day on, from the birth I had been planning for. For the normal life that I imagined this baby having, our family having. Nothing would be the same and I needed to grieve for that. And I needed to be angry, for all that was being taken away with this. For what my baby would have to go through and my little family. My husband and I were heartbroken, but we had two other kids to keep healthy and we had a routine to keep. So we marched on, to a different drum beat now, but still marching none the less. 

   I still remember the day we met with our midwife after the diognosis. She came in, sat on the stool and wheeled herself close to me. Grabbed my hand and looked at my husband and I, locked eyes with me and spoke so softly saying "Im so sorry, I hate that this has happend. You have done nothing wrong to have made this happen, it just does and its not fair". She too had been robbed of a normal pregnancy when she found out that her babies kidneys weren't right. She shared our pain and she sympathized with us. She knew our devastation. Our time was spent full of fetal echo's of our sons heart. Consisted of lying down for an hour or more at a time while the tech dug into my swollen and already sore belly bump because our little boy wouldnt cooperate. I spent days at home with the other kids trying to fill their days with fun and memories before we were thrown into a new lifestyle. I ran to the internet searching for support and for anything that would give me an idea of what we would be in for. I made sure to only check reliable sources, like mayo clinic, so I could get the latest outcomes for kids with this defect and wanted it to be true. Some outcomes I found from other parents werent what I wanted to hear, but I needed to prepare myself for whatever may come. I wanted so badly to hide away from everything, to show up at a visit and the doctor to look at me and say " oh, we are so sorry, we were wrong, your baby will be just fine". But those days would never come, so I had to go with the flow, I couldnt stress out over tiny things anymore because I had to keep this baby as calm as possible in hopes of a better chance at life. So I eventually cut out any person that caused un-needed stress to our lives. Other peoples miniscule problems and their whining only made me mad. I sometimes wanted to smack some sense into people and scream "wake up!! my baby may die, and your whining about spilling your drink!!" But it wasn't others faults, they weren't going through this. Their lives were unchanged, ours was derailed and on another course down a dark trail were some never make it out alive. They were naive and lucky. In a way I felt sorry for them because they hadn't learned the deep dark secrets of life and what it can TRULY have in store. It can be much worst than ever imagined.