Unmasked

Today, I wont hide behind a computer screen with a mascara filled face and type how awesome everything is, how honky dory it is. I wont type that despite our journey with Waylons heart that all is well. 

 Today I take off my mask and show the raw emotion involved. Today I am honest and REAL. 

Honestly, I am struggling today. My heart hurts, my eyes hurt from the multiple spurts of crying for unknown durations. 

After yesterdays appointment I am broken down. I dont usually allow myself to get this low, actually there are very few times that I can remember ever being this low. The biggest recollection is when we were first diagnosed with Waylons heart defect. I stepped away from the outside world for a bit and shut off my notifications from facebook. I couldnt bare dealing with everyones "im sorry for your situations" or the "I will be praying for your family" statements. I just wanted to be alone. Alone to deal with what was really going on, that my child would be born with half of a heart. With a messed up heart, missing parts, holes, parts to small to function correctly. 

I through myself into research about this thing called Hypoplastic left heart syndrome. I reached out to support groups of parents for emotional well being and for more research since they would know first hand what I would be facing within the upcoming months. 

So much came with this defect, it wasnt just a bum heart, but feeding issues due to being intubated and never learning to suck, vocal chord paralysis from being intubated, developmental delays, infection, compromised immune system, eye problems from low oxygenation, heart failure, organ damage from medications or the hearts low oxygenation. Then add in muscle problems and risk of brain damage from low oxygenation and being on heart-lung bypass machine. If it was a possibility, I read about it.

Almost everything I researched became a reality for my boy. But there were things we weren't told about that occurred at our local hospital that I later found out about, through reading his records. 

Hypoxic-Ischemic Brain injury popped out at me from the middle of the page. I wrote it down to remember to research it after reading #3 of 6 packets. My heart sank when I typed it in and seen all of the things he will be at risk for in the future and what caused it. 

I knew of this injury now, but was never able to sit down with a professional and discuss just what it meant. Until yesterday. 

After two long years I was finally able to see the results from the MRI done one Waylon after he became very sick at our local hospital. He was lethargic, his liver was swelling and I didnt know if he would make it. She read off the findings and highlighted the brain injury, then went over the images. Each one showed something new, something worrisome. Empty parts of his brain that are dead, filled with spinal fluid and will never be re-gained. Parts of his brain that were enlarged and the brain bleed. My eyes filled with tears as she went over them, but it killed me just a little when she described the dead part of his brain. Who wants to hear that part of their childs brain, no matter how small, is DEAD? 

Even more upsetting is not knowing! Not knowing what this will mean for him in the future. He will certainly have delays (as he does right now) but we will not know how severe they are until we get there, and we don't know if it will make him "handicapped" in those areas that he doesn't progress in. 

It wasn't until yesterday that I was finally able to understand how severe this was, I knew from reading about it that it wasn't good but had not seen the images or been explained to how bad his was. I didn't know what it meant for him at the time. 

I feel like we were diagnosed all over again. Alone, and that no one else had experienced this. 

I feel guilt for not getting him to another hospital, even though we didn't have a choice at the time (or rather was told we didn't). I wonder how a hospital can withhold such information, information that can be critical for his progression in the future and in the technique used by therapists, myself and doctors. How can that not be seen as pertinent information?!? And why in the HELL did I have to argue with a nurse that he was having seizures when he was already diagnosed with this injury (which intensifies risk of seizures)? How can it be okay to leave a family in the dark over this situation and expect them to find their own way?

Its not! Withholding this information did not save me from stress, and it wouldn't have saved me during the times that he was so unstable. Rather, it has created more stress because we are just truly learning about it, and because we could have went about his therapies in a different manner that would have worked better for him at the time. There is no excuse for it. 

So today, I am truthful. I am putting my anger, frustration, fear and sadness out there. I am taking off my mask of "Im okay". I wont stay here forever, just as I didn't when we found out about his heart. We will pick up the pieces yet again and push forward as ALWAYS to ensure that he gets the best care that he can get. Ensure that we aren't missing making memories that we could never get back because we are sulking in the anger, frustration, fear and sadness. 

That scary F word!

That scary F word, for some its  a dirty word with a different meaning, but for heart families its that scary word. Its the one we have been gearing up for since we found out about our childs diagnosis (mainly HLHS and HRHS families). The one we have hoped our children made it to, but hated that they had to endure it. It makes us want to say that other F word, the vulgar, no-no word. 

  Its taken me a bit to be able to really sit down and put everything down on paper (so to speak). Partly because I just didnt want to relive it I guess, wanted it to be in the past (though it never really will, its apart of us) and partly because we have just been living LIFE to its fullest since it happened. 

  The Fontan is the third palliative (hate that word, but its true) open heart surgery in the three surgery series for HLHS and HRHS children. It doesn't give them a full heart, though some have that misconception. Its the one that rocked me to my core a few months back when I received the call for scheduling. We have prepared for this surgery for quite some time, emotionally, financially, physically. 

  I was so scared of the outcome. Would he struggle, would we lose him through the surgery, would it be another LONG stay? I cried for days, then cried some more. I felt my body being drained by the thought of handing my baby boy over again. After all he had been through, all of the complications, I was going to have to watch him be wheeled down a corridor again and know what was going to happen in the operating room. 

Everything had to be done strategically to prepare. Contact anyone who is in contact with Waylon (therapists, nurses etc) and tell them that we would stop all visits 2 weeks before we left for surgery. Make sure a rental car was held, a hotel room was booked and money for gas, food and necessaties were on hand. Then pack, and I mean PACK EVERYTHING! 

While packing half of my house I would stop and cry some more, always back to that same thought, "what if this is the last time he wears this, or the last time he plays with this". 

The night before we left for Michigan we took the kids to their grandparents, spending some much needed time together and taking tons of pictures. Before leaving for the evening I gave huge hugs to our older children, holding back tears because the last time I left them with their grandparents I didnt see them for 4 months. Our oldest knew the circumstances, and he understood all to well what could happen. He cried on my shoulder as I told him good night and see you soon buddy. My heart broke even more! I felt like a terrible mom, leaving them when they were needing me too. I knew it had to be done, and that they were safe, that all of it was for their baby brothers sake, to keep him ALIVE. 

The morning of departure was filled with me running around like a chicken with her head cut off trying to make sure NOTHING was forgotten. As we loaded into the rental car I snapped a quick picture of my little man smiling in the back seat, surrounded by all of his things. We headed out for our 6 hour drive. 

I cant lie and say that I wasnt just a little excited. I know that sounds terrible (when you live this life you have to find possitives in everything, otherwise you WILL be taken to a very dark place that you dont want to be!), the last time Waylon was stuck in the hospital. He didnt get to witness Michigan at its finest, and how beautiful it was. I was excited that his daddy and I would have some time to show him some of the things we loved while there the last time, what brought us comfort, and to say "we made it back!!". 

Days before surgery were filled with tests, tests, and more tests! He had his first sedated echo, in which they gave me the job to administer his "sleepy" medicine because of his oral aversions. I then rocked him for 5 minutes and his body across my lap, then went heavy and limp. He woke a few hours later, we redressed him and headed out for a day on the town! 

We walked around the wonderful Ann Arbors down town, hitting some of the shops that we enjoyed the last time. Our favorite was the homemade cupcake shop! 

One of the best visits we did while there was to meet Waylons runner, Devon. She came to us from a group I signed him up in. Runners are paired with buddies who have special needs, and they dedicate their motivation, love, workouts and miles to their buddies. We were so excited to meet this wonderful woman who had loved on our Waylon as if he were family, she had logged over 200 miles for him and sent him tons of special goodies (including buying him a star for christmas!)

The next morning was his heart cathetorization. Again I helped to give his "sleepy" meds. He started to giggle and look a bit dazed. They wheeled him away as he waved bye and laughed at any and everything. 

  He slept for quite a while after the heart cath, which was good because he had to lay flat for 6 HOURS. But when he woke he was MAD, he wanted me and no compression bandage, nurse or doctor telling him NO was going to stop him from sitting with his mommy. Sit with me he did, for a good few hours. My butt was numb, my back hurt, I needed to pee, but anything to keep him calm! 

 He was admitted after the cath as protocol and I spent the night by his bed, where I didnt sleep because I was too nervous. I just kept looking at him, in case it was the last time I seen him like that. 

  Morning came and we passed him around for snuggles between his dad and I, taking as many pictures as we could. They came in to tell us it was time, then proceeded to walk us down the hall to elevators to pre-op. Techs, nurses, doctors and anesthesiologist all came in one by one asking questions about his history, his delays etc. Then as I held him they pushed his first round of sedation through his IV (which luckily worked!). Again we snuggled a giggly boy and handed him off to the team as we met with his wonderful surgeon Dr.Ohye (no words can explain the admiration we have for that man!). I wanted to burst into tears as we left the pre-op area but I held it together. 

  Hours passed, we did the same old thing, get coffee, something to eat and post seat in the waiting room for updates! We watched people come and go, met another family who had transferred from another hospital and helped them to feel at ease. 

  Updates were going well, we updated our family and friends and kept up with updates from our good friends who were there  again and had just had surgery the day before. All seemed well with our friend until we got the news that he had to be put on life support (ECMO). My heart sank! I wanted to scream, I had been given those words from a team of doctors before about my own son. They were my friends, we had spent time in the same hospital many times before, and were friends from home. I knew how much they loved that boy, he was their life, and they his. And the thought quickly rushed over me that we could be in that boat again, we could get those same words told to us again. 

 Our updates slowed and the final one came through " he is DONE, he did beautifully. He is in recovery and you can go back and see him when he is settled in an hour or so." My heart still in my gut rose back into my ribcage for the moment. 

  Walking in to see him was a flood of emotions. There is was, alive, heart rate well, oxygen saturation was good and he was starting to wake. We tried to give a bottle of water and he just threw it up, his belly wasnt ready for it yet. I just wanted to hold him, kiss him, but I just held his hand and told him how proud I was of him. 

After visiting with him and asking for him to be placed in an actual room because the noise was to much for him, I went out for some food. I passed my good friend on the way out and the sick feeling overwhelmed me again. I hated what they were going through at that moment.

I found out the next morning that our good buddy wasnt doing well, that after many tests his parents had to make the heart breaking decision to take him off life support and let him be free. I wanted to run to her, squeeze her. She was the second GOOD friend I had made on this journey that I had ACTUALLY met and made a huge connection with that lost their child, while my child was in the hospital too. I felt survival guilt. While so happy about my own child I felt terrible that another family had lost theirs. To personally know the family made it even worst. 

 The next few days were the basic, pain management, administering medication, blood draws and hoping for POOP. Seems basic, but it can become dangerous. Waylon hadnt had a bowel movement for DAYS! He was bound up, his stomach was very bloated, he was in a lot of pain. We tried medication after medication, until he finally went! We were lucky that he didnt have a lot of fluid build up, which we were afraid would happen due to his past complications with it. He didnt want to drink, didnt want to take his meds. His stomach was very unsettled and anytime anything went in, it came right back out. 
  
  

 My husband couldnt stay long, but when he was there he was present and trying to help comfort him in any way he could. This even meant standing for an hour beside his bed rubbing his head and holding his hand so he would fall asleep. 

 He left and Waylon and I were there to get through it together, again. it really, quite frankly, SUCKED. I hated not having my husband there again, being seperated. But bills needed paid, we needed a home to come back to, and two children back home that needed their parents. I always say that just because you have a critically ill child doesnt mean your bills stop, trust me it is so true. You do what you have to, and we did it again. 

  I eventually got Waylon to drink more and take his medicine, though it was still hell sometimes because he was scared he would throw up the medicine (and sometimes he did, along with all of the milk or food I helped him  to eat). I started to work with him more, having him to reach for toys, helping him to sit up for small amounts of time to help with his chest tube drainage. Once those tubes were out he felt so much better!! I was able to get him to sit up for longer periods, and it was so much easier to transfer him into the chair with me from the bed (YES I am one of those moms who handle it myself, never knew it WASNT the norm until the nurses told me). 

 The team was so happy with his progress, and how his heart looked that we were discharged 9 DAYS post op! A record time for not only Waylon, but the hospital! We were ALL amazed! 
We made the travel back home the same day, it did not go without incident, trust me. Waylon cried so many times and was so uncomfortable (who wouldnt be 9 days post open heart surgery, and sternum shaving). We had to stop several times to get him out and help him. 

  Being home at first was hard! I hadnt had to care for a fresh chest wound like his the last time and I was so afraid he was going to get an infection. Almost EVERYTHING set him over the edge! My phone would ring and he would start this blood curdling scream! I would change his clothes or diaper, same thing. Giving him his medication was a NIGHTMARE! He screamed the whole time and would throw everything back up, which meant re-drawling all of the meds again and cleaning up puke. 
  
 Eventually he got the hang of things again and became more settled. Which meant him being his silly self again, and showing us just how awesome he is! At just a few days after being home he was rolling back over onto his stomach again and trying to army crawl. 

  Things have been quite steady at home so far. We have had some scary times with new heart meds because his heart had weakened, and him getting very dehydrated at one point (months later) and becoming lethargic. We found out he had a common cold and enterovirus. He handled them decently (though we believe he had them for at least 2 weeks, it takes him longer to over come sickness). We have traveled out of state since being home for a day long family vacation. We have went on our 3+ mile hikes again, numerous times. 

  Update on our buddies family: After the smoke somewhat cleared in their situation, they started a foundation in Liams name. The funding goes to the childrens heart foundation which contributes to funding for research for our kids! They are amazing people, and through their heartache they are doing great things in his memory, for ALL of our kids. They held their first annual walk and we attended. We are so grateful to know them, and to have known Liam. 

Waylons 2nd birthday!!!!! 

Any photos taken from our site without our permission WILL be found, and the person WILL be prosecuted to the fullest extent of the law. All photos are owned by the Rainey family and are NOT to be used for personal use. 

Truth is.....

Since the beginning of our journey with Waylon I have done well to hold in my feelings for the most part. 

I have been strong in the face of his struggles while in the hospital. I wasnt the mom you seen breaking down on the elevator, because I sucked those tears back in, took a deep breath and held my head high. 

Each time the doctors came in to tell me that my son was yet again struggling with something, a medication wasnt working, he had a failed attempt of coming off the ventilator, fluid build up, collapsed lung. I wore my mask of medical proffessional/warrior mom and said "This is what we can do next" "I seen him heading down that path". Doctors were in awe with my togetherness and were at ease with coming to me when something else was going on because I didn't break down. 

The few times I did break down I was in the arms of my loving husband, and it was some of the toughest times. Like the elevator doors closing as I seen my baby boy being walked down the hallway to the OR, seeing my son on life support and then weeks later being told that there was nothing else they could do for my son besides putting him back on it. 

I was stronger than I ever thought I could be, was it my mothering instincts, my preparedness? I couldn't tell you, but when I was in that hospital I was in an entire different mode.

Since being home, I am still very much in that mode, but I can let go, I can let tears flow (still mostly when no one is looking). Looking at my amazing little warrior gets to me everytime, there are so many things we never knew if he would even be able to do, or even be here to do. 

In light of the past few months and hearing the words "Fontan soon" I have been on edge. I cant look at him throughout the day without tears falling. Especially since we got the call yesterday with THE DATE, which is only a month away. I have been preparing on things since last November. Calling social workers in Michigan to ask about insurance, what will be covered, what we can get help with, what we need to pay out of pocket. How will things pan out the days before, will he have a cath the day before surgery, a month before? Traveling from states away I wanted us to have it as together as we could this time. Last time I had to gather necessities in a small bag to fly in a helicopter and forgot a TON. 

Nothing could prepare me for the rush of emotions when I looked at my phone and seen "Michigan". I knew it was any day that we would be receiving the call about paperwork received, or the surgery date. But when I answered that phone and the surgeons assistant asks if I "have time to discuss Waylons surgery date, and pick a date?" I wanted to break down, and I wanted to throw up. It became REAL! 

All of the "what-if's" run through my head like a race track. I kept reminding myself to breath, just breath. 

From my room I could hear Anthony and McKayla playing with their baby brother and his therapist, laughing, running. And it hit me again like it does everyday, we will be split up again. Our happy lil year home together has come to an end and we have to seperate ways again. I thought how all of this has affected them, and how strong they have had to be.

Truth is: I dont want to be strong sometimes. I want to break down, I want to scream, I want to be weak

Truth is: I cant be. I have no choice BUT to be strong because Waylon has to be, and I chose for him to have to fight, so... SO DO I. 

Truth is:I hate all of this, it isn't fair that our family has to go through this, that our kids have to go through this. 

Truth is: I shouldn't have to be worrying about any of this. I should be worrying about what my 19 month old baby is getting into, what new words he is saying, and cherishing the days he is at home instead of school. NOT cherishing the days because I dont know how long he will be here with us.

Truth is: I wonder how I will deal if something ever happens to him. And it breaks my heart to even think about it. 

Truth is: I think of him dying alot, especially here lately. I have nightmares of it. I see a picture of a grave with a lil boy sitting next to it "playing" with his lil brother, and INSTANTLY think of how that could be something I could do for Waylon and his siblings. Then my heart sinks and I think how sad that is. I see little suits and instead of thinking for an outfit for Easter or Christmas I think how handsome my baby boy would look in that and it would be a perfect suit for his burial. 

Truth is: I know how crazy ALOT of this sounds. But it is real, it is my true emotions, and what its like to be the mother of a critical child.

Truth is: Even though I have these morbid thoughts, I dont let them overshadow the happiness of today with him here with us. And I dont miss a chance to make a memory because I am taking to much time feeling sorry for our situation. We have a normal schedule we follow daily, with random moments of crazy living room dancing with ALL 3 of my babies. We go out and see the world, within limitations to keep Waylons health safe. 

Truth is: My relationship with my husband is 10x stronger than it was before all of this. 

Truth is: My faith is not the same, my christian belief is almost non-existant. But that doesnt mean I am disrespectful to those who believe, or that I am offended when someone says "I will be praying for you" because they are thinking of my family none the less and that is huge for us.

Truth is: I get jealous and ANGRY when mothers smoke, drink and do drugs during pregnancy have healthy kids, and I did everything possible to be healthy in all of my pregnancy. But I realize those moms would never be able to walk a mile in my shoes, and they wouldnt be able to deal with a child in Waylons condition. 

Truth is: I dont take nearly the amount of crap I used to take from people. I am much more "bitchy" as some would say. But its a defense mechanism to care for taking care of  my family and myself. 

Truth is I am NOT alone. I have an amazing husband, family, and awesome heart moms who have my back NO matter what. They are not afraid to come to my defense if its needed, or to fight for my childs best interest if a hospital isnt doing what it needs to (have seen it happen (:  )

Truth is: I am scared. And that is okay. 

My princess, my hellraiser.

On this day 5 years ago I woke early to contractions. While my husband and baby boy slept I packed a bag for the hospital, breathing through contractions calmly. I waited a while to wake them up because I wanted them to get more rest, but went ahead and called my mother so she could meet us at the hospital and someone would be home to keep Anthony.

Arriving at the hospital we went to the labor and maternity ward where they told me they never received my paperwork and I would have to fill it out before receiving a room, go figure! So we sat in the waiting room while I filled out paper after paper, while breathing through full blown contractions. We were finally placed in a labor room!

A few hours passed and my excitement was getting unbearable. I was ready to see my lil princess for the first time and hoped her delivery went much smoother than my first child, and I wished that I would be able to hold her. Contractions got stronger, but I never made a peep, all while my hubby sat on the couch playing with the camera. My doctor came in and said they were going to set up so I could get ready to push, but they barely had enough time. This girl was making her grand entrance whether they were ready to not!! Two pushes and she was out, they hardly had time to pull the bed apart, and hubby almost didnt make it over in time to see lol.

I pulled her straight up to my chest and snuggled her, gooey mess and all. I was in awe of her beauty.

Hours later I finally got to hold her again while everyone flooded our room to get a glimpse of the sweet new baby in the family. In our family, babies are a huge deal and we take up an entire waiting room! We introduced our baby boy to our newest addition and he was just as excited as we were.

As a baby McKayla was very attached to me, and she seemed to have some problems eating. Each time she would feed she would projectile vomit the entire feed, like the girl from exorcist. It was frustrating, and scary at the same time, so we pushed for testing to make sure something wasnt wrong with our sweet baby. I didnt know what I would do if my child had something wrong (hindsight is 20/20, they say (:   ). Testing showed small reflux but nothing else, luckily she eventually out grew it and was able to tolerate.

Our growing girl hit most of her milestones on target, crawling at 6-7 months, walking at 12 months. But she never "really" talked until she was 3 years old. She has been a climber since BEFORE she could walk, and is STILL one today.

She is the beautiful blonde haired girl wearing her pink tutu, with rain boots, digging in the dirt with cars. She is the screaming, loud, jumping lil girl you see in the front yard that most of the neighborhood kids are intimidated by. She is loving, always thinking of her brothers and making sure the snack she steals from the pantry is also enough for her big brother. She is stronger than any lil girl her age should have to be, yet she does it with a smile and grace. She is simply AMAZING! I didnt expect to have a tomboy for a daughter, though the thought crossed my mind many times while pregnant since I always was growing up. And I secretly hoped she would be so she would be so strong and I wouldnt have to worry about certain things. She is more strong willed than I ever expected, and more times than not, thats a great thing!

Happy birthday beautiful girl!! We love you so much more than you would ever know!

There is NO safe place.

The heart community (parents,family, of children with heart defects) woke to tragic news this morning as one of our own lost their child last night, we lost one of our own. These children that we may never meet, that we watch grow, learn and thrive through our computer screens, they are as our own children battling this terrible thief. We fight for our own children along with these children. Fighting for awareness, for research and funding so that one day, maybe, just maybe there will be a cure for the #1 killer of birth defect related deaths. The killer that effects 1 in 100 babies every year, that robs a high percentage of parents from their child reaching a year old.

My heart aches for this mother. It feels torn in-two.
And at times I just feel numb.

I feel scared for my own child, scared of losing him. With his next open heart surgery coming up it hits hard, as I have already had anxiety, and nightmares of him passing through the night, or coding in his recovery room. The thought of seeing him so weak and vulnerable again is truthfully.... sickening. Literally I feel sick to my stomach to think of what he has to go through again. That I have to hand my beautiful child over AGAIN.

To have his body poked and prodded on, his body full of lines, cannulas. A tube down his throat to breath for him, his body cooled and his blood cycled back through his body by a machine, his chest cut and sternum cracked and his tiny imperfect heart re-routed again to help him to sustain LIFE.

All while he is 18 months old!!

This life is not fair, what he endures to survive is NOT FAIR.

And its not fair that we have to constantly worry about losing him, no matter how good he looks, no matter how well he is doing right now, it is a HUGE possibility. The odds are stacked against us. These surgeries were never made to FIX him, he will never have a whole heart, and he is not eligible for the surgery that would make his heart whole because his heart does not qualify. The side that is sustaining him is already diminished in function. This side has to last the REST of his life or he will require a transplant. But even then, not all children are qualified for a transplant, and thousands die each year just waiting on one. And not to mention SOMEONE HAS TO DIE for my child to get a heart, meaning someone else will have to lose their child.

There is no break from this. There is no getting over it and moving past like a bad break up. It will ALWAYS be in the back of our minds, the what if its his heart, what if he doesnt wake up. What if today is the day I lose him.

Everytime our community loses a child we ALL mourn, we all hurt, there are no dry eyes amongst us. Because a piece of us died with them, because we see ourselves in them, we see our kids in them. They are our kids heart brother/sister. They are OUR KIDS.

And everytime it is a slap back into reality that NONE of us are immune to this. No matter how well our kids are doing, we can lose them at a moments notice. This beautiful boy who had his 3rd surgery (the same that Waylon is getting ready to have) and has been doing so wonderful, then out of the blue a cough and a trip to the emergency room for a check up.

You read that right. A cough. So YES the crazy, narotic, germaphobe that you call me has a reasoning behind it all. A reason to worry when her child starts acting a lil funny, starts coughing, a lil more blue than normal.

I have not been able to hold back tears today. Each time I look at my son they flow down my face. Each time I pick him up, I hold him tighter, study his face more and burn the image of him into my mind again trying to remember that very moment. I smell his lil forehead and his soft hair, smelling the vanilla pediasure he dripped into it just minutes earlier as he smiled and laughed because he thought it was hilarious. Oh and the sound of his laughter, gold to my ears.

And then I think, how can I live without this lil being. How can our family get through losing him. How can my heart withstand that, and the empathy for so many of my friends in the heart community comes through. And I think of how strong they are, how beautiful in their own right they are.

I know this stuff doesnt mean much to others. Their lucky. They get to worry about a new movie with a hunk coming out and how thats the highlight of their day. They get to worry about gas money, bills, how their hair looks this morning, how someone said something not so nice about them.

While we, in the heart community, have to worry if our child will even make it through the day. How we will pay the bills if they end up in the hospital for a long period. Where we will send our other kids when that happens and how we will be without them for who knows how long. They dont have to worry about these things, and they are lucky.

But my life has been touched by an amazing child, a child with more strength than half of the adults I know.
And I will fight for his story and ALL of his heart siblings stories to be told. I will fight for his survival as much as I can and without the help of those who want to turn their eyes to something that can affect them, and I will fight for them to understand this life because it too can be theirs one day. They too can be effected by CHD.

There is no safe place, not even after his third surgery. The time when we are suppose to breath easy and feel like we will be able to live life without as much worry. And it hurts, and truthfully, pisses me off that people dont understand that!

I only wish I had known of CHD before my son was diagnosed, I knew some, but not nearly enough. And neither does the general public. That needs to CHANGE!

My son got a hemi!

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

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

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

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

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

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

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

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

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

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

6 days post op!

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

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

Whats in a year?

Whats in a year? 

Well I could break it down by the 12 months, the number of days, the date, the money spent and the money made. But there are many things of greater worth to be told, ESPECIALLY within our little family. 

This year was like a complete 180 from last year. Where we found out we were being blessed with another baby, I lost my job due to severe hyperemesis (bad morning sickness, to the point of losing weight in my 2nd trimester). On the day we found out about the sex of our unborn baby, we found out something was wrong with him. And the a snowball of effects that lasted the rest of the year and into this one. 

But THIS year our baby boy survived another open heart surgery, where he was extubated by the second day. Our baby was finally brought home after living the first 5 months of his life in a hospital, and he met his family! 

This year we made more memories than any pay check is worth (and most of them were FREE). Our whole family cuddled on our big bed so many times I have lost count. I have traced my babies scarred chest even more than that. We hiked up a mountain to look over the Kentucky river, ALL of us, with baby strapped to my chest through 4+ miles of  hills, trees, rocks, bushes and some mud. All while our baby was outside of 4 walls with beeping machines that were hooked to him, he was seeing nature!

 

This year we did a 3 mile walk for CHD awareness and to raise money for an organization that helped us out the year before by getting gas cards for us, meal tickets in the hospital, helping to rent a car so we could bring our bundle home for the first time from out of state and offered emotional support. 

We joined other organizations with the same cause in mind and have grown to love them just as much and mommy now sits at a table with other board members striving to help CHD families. 

This year we have all began and ended our days the exact same, with all of us under one roof, in our own beds. We are so BLESSED. 

This year we were on CNN to bring awareness of just how important TRANSPARENCY  in a hospital is, and which hospitals aren't focusing on it. We lost some friends because of standing up for what we believe, but we helped MANY more!  And because of moms hard work she was asked to come to a big meeting out of state that combines multiple hospitals that do the same surgeries and care all over that Waylon now receives from Michigan, all in an effort to provide the best care for the patients and continue to grow. 

This year we took simple trips to the park and watched our kids run free and smile, instead of cry because our family was split apart in different states. 

 We celebrated birthdays TOGETHER, one inparticular that we were unsure we would get to have. Our baby boys! 

Our once 100% tube fed boy now eats from a bottle and snacks on small banana puffs and other things. NO more placing a tube that was pulled out or ready to be changed because a month is up. Tightly swaddling a moving/growing baby and shoving a tube down his nose, and the back of his throat then taping it down on eczema covered cheeks.

We were finally cleared to stop lovenox injections because his blood clot in a major artery had FINALLY disappeared. No more jabbing him in knotted bruised legs with another needle 2x a day.

This year we LIVED!! We had hope for a better future for our CHD baby, for our family, for our selves. We found strength we didnt know we had, and found things we are good at. 
We have helped other families and been helped by others. We have watched our kids grow, not only in pounds, but intellectually and as people. 

We have also lost. We have mourned for our friends who lost their babies. We have offered comfort and love to them. And we will NEVER forget their sweet babies, and vow to fight for them and their parents so peace will be found. So these parents will know their baby was loved. 

As I sit with my beautiful family this evening, even with the next year of procedures, events and another open heart surgery looming over our heads, I will smile and even shed a tear. Because THIS year, we SURVIVED!!