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.

Homecoming

Through this journey we have witnessed so many unexpected things. Many caused heartache that will forever scar us. Our family was separated for the health of our heart child when our local hospital was no longer able to care for his complex needs.

At times we often wondered how we would pull through this, how our son would make it through all of the extreme procedures he went through. He has been as close to death as one could be, and our family hung on the balance like a teeter totter, just waiting for news.

Days passed, sometimes his health could change in minutes, so we also struggled with the fear of "is our child going to be one that is lost to this terrible defect?". I have witnessed so many times parents by their childs side day in and day out, health changing up and down and they suddenly lose their precious little ones after all of the fight and pain endured. This still weighs heavy on me at times, because unfortunately I have also witnessed families whose little ones were doing wonderfully. They would be laid down for an afternoon nap, only for their parents to discover they have passed when they go to check on them. The unimaginable, the parents WORST fear hangs closely to our family daily. Its something true that we could face, at any moment.

We don't let this stop us from enjoying our happy times. Our moments of making memories. Recently we were finally able to bring our baby home. After five long months in the hospital, two open heart surgeries in 4 months, the first resulting in our son being placed on life support, brain bleeds, seizures, feed intolerance (multiple times), on and off of a ventilator or some kind of breathing support, infections, extreme swelling. Medically induced coma. After his first surgery he was almost unrecognizable. Our family was divided shortly after his birth and first surgery. I went four months without seeing my older children.

This journey has been filled with difficult decisions throughout. Beginning with deciding to fight for our sons life. We also had to decide to allow our older children to go with grandparents so I could be at the hospital with waylon during vital moments, and to ensure that they had the best care during all of this. On December 5th I traveled out of state to Ann Arbor Michigan to the #4 top rated hospital for pediatric cardiac surgeries. So once again my husband and I had to make yet another life changing decision. Our previous hospital had recently decided to re-evaluate their heart program and informed us that our son was in heart failure and that they could no longer care for him, especially since he was so complex with his other problems. We had mere days to decide, and so much to take into account. Our family was once again torn apart, my husband and I who are eachothers backbones and shoulder to lean on were now being split apart, because unfortunately life still goes  on around you while you have a sick child, bills still need paid, your other children need fed and need a home to live in and a home for our fragile son and I to return to. But we had to choose a place that could take care of all of waylons needs, and ones that may arise. Like heart transplant. Our state only had one other hospital that treated pediatric cardiac patients and they had recently stopped their transplant center. And we wanted something seemingly close, so Boston and chop (the best in pediatric cardiac) was to far away, especially for traveling back home with a child who couldnt be around to many sick people, making airplanes extremely unsafe for us. Even more so with the flu and RSV season on the rise.

We chose a center that deals with kids like our son on a daily basis, and are also ranked #21 for neurology. They offer transplant. And we knew families from back home who had went to them with their children and had great outcomes. Some people questioned our decision on the center since it was so far away and I wouldnt see my other children or vice versa..... they wouldnt see me. All around christmas!! This was not planned in our heads when we were diognosed, we thought we would all be together, be home way before christmas and better yet, have christmas together. But decisions had to be made and quickly for the well being of the child we had fought so hard for. We werent turning back so once again we made a tough decision.

Days went by. Time was spent talking through a fuzzy skype feed. Christmas morning was nothing near what we were use to. My heart broke into a million pieces watching my older babies open gifts without me, and that our littlest baby was to sick to be home to enjoy being around his family. I wanted to be with them, but I needed to be there with Waylon. I felt torn on the inside. Even though I knew I was were I had to be.

Waylon would begin to do better and we would get close to going home and then something else would pop up.

Before christmas we thought we would make it home just in time. But at Waylons discharge echo a blood clot was found in a major part of his heart. They were contemplating going ahead and sending us home and having us on blood thinners to keep it from dislodging, which would have been fine. Until later that night blood in his stools became apparent something more was going on. They felt he had what is called NEC.
So like a slap in the face we were handed with another week or more of care along with stopping feeds to do a seven day course of antibiotics. So while others enjoyed their christmas I was not only away from my family and my beautiful childrens smiles on christmas morning, but I had to console a starving baby because he hadnt hit 3 days yet (hunger pains go away after 3 days, yet another terrible thing families like us have to experiance and know).

Things like this continued to happen, intolerance of his feeds, fluid around his lungs. We didnt think we would ever get home. We finally got to a good spot and all looked well. Everything was taken care of back home with cardiologists, pharmacy etc. But I still felt something was coming, something big and I didnt know what. For days his oxygen saturations kept dropping and he continued to need more oxygen support.
Then the dreaded talk came into play..... the second stage surgery. He had outgrown his shunt placed in the first surgery and we had to make the choice to put him through another surgery.

Choice. Funny word in all of this, because we have never really had one. Its all been made up of must-do's. January 15th 2013 signed consent once again for our son to be hung on a balance of life and death. To be packed on ice,cut open, put on a heart/lung bypass machine and a life saving operation performed. The first time was difficult, he was a tiny baby whom we hadnt had time to really meet or see. He was fragile to sound, light and touch. Heavily sedated. But now we held this baby boy who had a personality, who smiled, who knew his mommy as comfort.

Surgery went extremely well, even better than the surgeon expected from his list of complications from the first surgery. He was extubated the next day and continued to do well after. And once again we hit that roller coaster we know so well of being close to going home and then getting stuck at the top for a while when waylon developed an infection in his closed wound.

But he pushed on, and so did our lil family awaiting the time when we would all be back home. It was all long awaited. And we finally got that day. February 15th we were discharged for the first time since Waylon was born.

The day of discharge was unreal, I was excited but scared at the same time. I had been present in every piece of care for this little one during our stay. Learned everything I needed to. But now we would be flying solo. For 5 months I helped nurses with the care of my son and then was comfortable doing most on my own, but we were still in a hospital setting, with nurses right outside in case something happened.

I also felt relief. The day before discharge he was taken off ALL monitors, this was a first. I had a "free" baby. I had never been able to pick him up from his bed without having to watch for multiple attached chords leading to a monitor, a lifeline. Checking his every breath, heartbeat, oxygen levels. I had a glimpse for the first time of life at home and our new norm. I was ready.

Waylon has been home for a few weeks now. He has continued to do well. He adores his siblings and they him. He has found a new best friend in his daddy and I see a light in my husbands eyes like no other. The way he loves our son with all his "flaws" as others would call them, reminds me daily why we married. Through all of this our family has stood strong. While others have tried to knock us down and have waited to see us fail, we pushed through the rubble and built our own normal. We stuck by eachother and have grown stronger than I could have ever imagined. Waylons half of a heart completes our family.

Care for Waylon is on going. While moms are devastated with their childrens immunizations, I have to inject Waylon twice a day with blood thinner in hopes that his clot dissolves and doesnt dislodge. I have to hold him down for multiple needle sticks in an attempt to get a blood draw. And with limited access from his heart condition making bad veins and blood flow and from the hundreds of IV lines, PICC lines and central lines, there isnt much left to draw from. Many moms pray for naptime to come so they can get a rest. I pray that my son will wake up from his nap. I have to keep a constant fear in order to keep a realization of what could happen. But I also have to keep it running parallel with good thoughts and moments of making memories. Because if God forbid it be his time. I dont want to look back and the only thing I remember is FEAR, and the wasted time on it that could have been spent making a memory.

 

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.