Far too long

It has been far too long since I have posted. I just posted the final post from Charles. I wrote it before he passed away. And then never had the guts to publish it. I need to finish my posts from his life. And start new posts from what we have been through and gained since his passing. Prepare for a ton of posts. Some long and some short I'm sure. It is going to be a long rainy week filled with writing all my memories from Charles and Clark. 

Get ready!

Charlyse Wilson

Life Flight Take Two

Charles, I have decided thinks that if he has to go to the hospital, he is going to make a statement. And that he did. 

On Tuesday October 14, 2014 he decided to go very big. All day Tuesday was a bit of a struggle for Charles. He was having a hard time staying awake and being roused. He was also having a hard time breathing. Well, he is on a vent. So you would think he would be able to breath just fine. Think again. I was with my mother in law, Karen, and we did an emergency trach change to see if that would help keep his oxygen sats up. Yup, nope. He threw up (which he never does!) and so we proceeded to call 9-1-1. They got there very fast... Let me tell you they know who he is by now... 

  So, the EMT's walk in and want to know what to do. Let me just explain. Almost all of them look too young to drive, and they all look completely on edge. When they arrive on scene they always ask me what to do. When I want to just break down and let them take over I can't. I have to be the strong one. Lame. Sometimes I want to be the one to be so worried and not know what to do. Ha ya right. I will always be the one they depend on when they get there. Good thing I know Charles so well! 

Ok, so the trach change happened. Charles vomited and the EMT's showed up. I worked on switching everything over so that we could transport Charles and just as I finished everything he started to turn blue. Now explaining the look of absolute panic and despair in Charles' eyes is impossible. I started to cry and just yelled at the room in general that he was blue. One of the responders handed me an am-bu bag and I ripped his ventilator off his trach and started bagging him. he slowly started to look better and we just had to get him to the back of the ambulance to wait for our ride. 

The task of taking Charles anywhere is a chore. Let alone up the narrow stairs with me holding and bagging and other various EMT's carrying items attached to Charles. Normally I can carry Charles and everything that is attached to him. Not this time. It was an experience... But we made it. We climbed into the ambulance and waited for the helicopter to arrive. Last time he was life flighted the ambulance took us to the park down the street and had the bird land in the parking lot. Not this time. They had police officers block off access to the intersection just a little ways down the street and had them land there. Let's just say that there was quite the crowd. 

Once the helicopter landed, a crew of three came to do an evaluation of Charles before wheeling us to the waiting helicopter. The evaluation didn't take long and they quickly strapped me to the gurney and I just kept bagging. The look of relief on Charles' face was amazing. He was so happy to be in my arms and to be able to breath. I was so afraid to let them take him from my arms and put him into the helicopter. After they took Charles, I went around to the other side and was strapped in. I felt helpless. I wanted to do something, but I couldn't do anything but watch the Life Flight crew do their job. 

As a side note, all Life Flight crews are Respiratory Therapists. At least from what I have seen. So they are very qualified to take care of Charles. The feeling of being separated, even by a few feet at a time that he needed me almost killed me. By the time we got to the hospital he was doing amazing. 

Strapped in and waiting anxiously to take off

Just before take off I believe. At this point Charles was relatively stable, but not stable enough to go by ambulance. 

Preparing to do blood work. Not looking forward to this particular bill...

Labs are being drawn and the lady (no idea what her name is...) is breathing for him. 

One of my heros! I doubt that she knows she is my hero, but I love her for taking such good care of Charles and helping him breathe. 

Yet another hero. Here he is getting blood work results. A crazy expensive thing to do in the air... But I am so grateful for him and what he has chosen to do with his life!

Get ready to cry. We flew past the Bountiful LDS Temple and it was gorgeous. Charles was an angel the whole way to the hospital and as we flew by the temple he seemed to want to look at it as long as possible. This picture just melts my heart and makes me cry. Families are eternal. 

This picture strikes me even harder than it probably normally would under these circumstances. Charles had been blue. He had been dying in my arms. If I hadn't done what I did and taken him off of the vent and started bagging him, we would have lost him. Absolutely terrifying. I am so grateful that this particular angel is mine for eternity!

This series of pictures does not do this scene justice. The number of people waiting for us as we landed was crazy. 

The side of the helicopter opens and I hear a chorus of "Awwww" from these ladies. And then what happens? Charles smiles... One of his great big hello ladies grin. Little stinker.... Such a ladies man.

I will say it is hard to be annoyed, everyone thinks he is so cute. And well, let's face it. He is adorable. 

Remember when I said earlier that I usually move him all on my own? Well let's play a game. It is called "How many medical personnel does it take to move an almost 5 month old?" The answer....Eight! There are eight of them to do what I do by myself.... Hmmm... Can I just take the tests and not go to school for my degree?

Loving me some proof to show Charles when he gets older... He knows how to make a scene. Whether he is making an entrance or an exit, this kid has all eyes on him...

During this entire process of moving Charles off the helicopter and into the hospital, I hear lots of things that are just encouraging Charles to want to keep coming back. The women thought he was just so cute and kept commenting on how he would smile. 

Why yes, Charles missed the ladies! He thoroughly enjoyed himself all the way to the ER. He had what he wanted. Cute nurses oohing and awing over him. 

So grateful for so many people who do this for a living. I am sure there are a lot of cases with very sad outcomes.  

Finally moving! This was no small task getting Charles where he needed to be. Yet this team did a great job getting him inside!

One last look at the helicopter that brought out a whole neighborhood and Charles to Primary's. I now know the difference between the two landing pads... Wow how I wish I could say that I didn't. This particular helipad is for the more critical patients. The other side is for stable patients. Unfortunately, we have been on both helipads. 

Charles just hanging out in the ER after making such a huge scene. He looks exhausted, but he looks so much better than he did before this. 

Why yes that is the cutest little arm you ever did see! He struck a pose as we took a picture to celebrate a happyish ending to what could have been a very disastrous and devastating night. We are just so happy to have Charles with us still. We hope to never have a repeat of this, but we know our scary close calls are far from over. This may be his second life flight, but it certainly won't be his last. 

Charlyse Wilson

Because of Charles Part One

So much has happened that my mind is having a hard time figuring out where to start.... 

I guess I want to start with some people I have met because of Charles.

For starters, we have everyone from the hospital. The nurses, techs, doctors, specialists and all the other behind the scenes people. 

We have wonderful friendships that came from our nurses and techs. The doctors and specialists were amazing. Some of the best in their fields. I have a scary working knowledge of the human body and brain despite never wanting to take anatomy.... 

We have many people we keep in contact with, and many more that we don't. 

There is one woman from the surgery waiting room who is one that we do not keep in contact with. I couldn't even tell you her name. But I can tell you what she looks like, I can tell you what her voice sounds like. But most of all I can tell you that she has a wonderful heart. 

This woman went out of her way to make sure that I was okay when I was alone and terrified.

 Charles had been in the ER to see the Wound Clinic team. They didn't have their own place so they met with patients in empty ER rooms. The day before Charles had thrown up. Just once, but that was unusual and a sign of a shunt malfunction. So I figured since we were there the Neurosurgeons should at least have a look at him. I knew in my heart something was off, I just didn't want anything to be wrong. I spoke on the phone with Wally, one of the best on the team, and he said the fastest way to be seen was to be admitted to the ER. That would put a rush on all of the test results and we wouldn't have to wait all day in the clinic. So I reluctantly agreed to have Charles admitted to the ER. We were taken to do a CT scan and sent back to our room to wait for results. Once we were back in our room waiting to hear back, Charles began to change his behavior. He became less and less responsive. 

Here he is just before going into surgery. He had almost no startle reflex and he just laid there. One of the scariest moments of my life.

Cody was at work and I couldn't reach him. My cell phone coverage was spotty at best and I could hardly get enough coverage to make a phone call. I called my mom in tears. I was alone. My husband was at work, and even if he got my call he never would have made it to the hospital in time. My mom was all I had to try and keep me calm. They came in and they looked so nervous. Neurosurgeons never look nervous. They hardly show emotion. Not this time. All serious faces as they told me that Charles had too much fluid drained from his shunt and that it caused his brain to collapse inward. I was a mess. My child was unresponsive. There were grim faces all around me. And I was alone. Utterly alone. No one to hold me and tell me it was alright. No one to turn to for comfort. As they were waiting to take Charles into emergency surgery I had one thought. Charles needed a blessing. He needed it immediately. I needed it to happen to help keep myself calm. I asked our nurse to find someone to give him a blessing and within a few minutes two men arrived. One was the tech who had admitted us to the ER and the other was from another area in the hospital. The blessing was beautiful. I cannot recall what was said aside from the fact that Charles would be blessing lives into adulthood. That was all I could remember and that kept me sort of in control. I remember talking to my mom and having her tell me to hold my baby and take pictures. It could be the last time I get to do it. I did just that. I held on to him and took pictures of us. 

There is something about this moment that despite it's difficulty was beautiful. 

My poor baby was so sick. It had happened so quickly. I am positive that had we not been at the hospital when we were he would not have made it. I knew in my heart something was not right. I was prompted to insist on being seen. In this moment I was reminded that Heavenly Father is in control. He prompted me to seek medical attention when all seemed normal. And within a half hour it was a critical situation. I carried Charles to the OR. I didn't want to let him go. I cried and asked him to simply open his eyes and look at mommy. Just before going into surgery I begged him to do just that. And for one brief moment he opened his eyes and looked at me. I was so relieved that he could still hear my voice and respond to my plea for him to look at me. 

I told him how much I loved him and that I would be waiting for him. 

I don't know how I made it to the waiting room. I just remember sitting down and trying to get a cell signal. By now Cody knew and was on his way from work. His parents and his sister were also on their way. My dad had called his parents and his sister and they were also on their way. I called my mom back and was in tears as I told her that his brain had collapsed and that the doctors couldn't tell me anything. I remember telling her it didn't look good and that the doctors had been pacing in the ER waiting for an OR to open up. After I hung up with my mom, this sweet lady who worked the desk came and sat by me. She asked if I wanted a warm blanket and so I said yes. I hadn't realized how cold I was. As I look back I can see that I was in shock and she  recognized it and acted. She told me everything was going to be okay and that if I needed anything to ask her. Shortly following her returning to work, but still keeping an eye on me, Cody showed up along with everyone else.

Side note: This woman's kindness is something I think about all the time. She would still talk to me following this event whenever she saw me around the hospital. She always wanted to know how he was doing and to see pictures of him. Words could never express my gratitude to her at that moment. A moment where every eye in the waiting room was on me. No one dared say anything and feared that one day this could be them. Not helpful in a stressful situation. But this woman saw that I needed someones kindness. Not their stares. Not their pity. She chose to love where she didn't have to. She gave me enough comfort to last until Cody and our family got there. For that I will be eternally grateful. 

Charles came out of surgery doing great. They put in external drains so they could control how much fluid was drained. He looked so much better after his surgery and he was happy to see Cody and I. I was so relieved when we talked to the doctor and he felt that everything had gone well. They couldn't tell us much except that a total brain collapse in uncommon, and that it is even more uncommon to be perfectly fine afterwards. Charles was a living miracle. He stumped doctors. He was perfect! 

Charles holding his Daddy's finger after surgery... He still looked so tired from his ordeal but he seemed so much better. 

This is where it gets interesting. The scan on the right is from July 1, 2014 and the scan on the left is from exactly one week later July 8, 2014. I could not believe what I was seeing. This scan was shown to us side by side in the PACU(Recovery). We were in utter dismay. We knew that Charles had had fluid draining and his head had sunk and shown his bones protruding. We had no idea this would happen. Neither did the doctors... This was a complete surprise to them as well. 

We got to celebrate one holiday with Charles at home. The 4th of July. So we had pictures taken to celebrate that momentous occasion and I am so grateful that I have those pictures. They help show how much fluid drained from Charles' brain....

Charles discovered the mirror.... His first time looking at himself!! Such a cutie! What can I say? I am super biased... But he is the most beautiful baby I have ever seen despite his "abnormal' appearance. His eyes were so full curiosity and love.  

I insisted on these pictures :) Our little miracle baby home with us and in actual clothes! This happened very few times and this day was beautiful!! We had a picnic outside with family. We got to celebrate one holiday with our baby. This is still rough and raw for me. But I am grateful that we got that. One wonderful holiday at home together. 

There are so many others I have met because of Charles. This is just one story of how much one person meant to me. I have many more stories to tell. And many more people I have met because of Charles. What a blessing he was in our lives! We have wonderful people in our lives because of this little man! I am SO grateful to be his Mommy!!

Charlyse Wilson

Reflections

As I sit here, contemplating the events of the last three months, I am both humbled and grateful. First, we were blessed with a perfect baby boy. Second, we were blessed to be his parents for 5 whole months. And third, we have been sealed to him for time and all eternity through our temple marriage. 

Oct. 21, 2011
Logan Utah LDS Temple

Oct. 21, 2011
First picture as Mr. & Mrs. 

I have never been more grateful for the upbringing my parents gave me, in the Church of Jesus Christ of Latter-Day Saints. I am so grateful for my temple marriage and sealing to my amazing husband. He is so good to me, even when I don't feel I deserve it. He honors his priesthood and it is because of him that I am where I am today. 

My parents are amazing! I love you both so much! Thank you for all of your support and love the past 25 years!

If you had told me four years ago that I would be where I am now, I would have called you crazy. But, I would not have it any other way. 
In the last four years, since my husband and I met, life has been wonderful! We started dating on May 3, 2011 and were married by October 21, 2011. It has been so wonderful to be married to my best friend! We had a beautiful son on May 23, 2014 and he loved life! Despite all of his struggles and trials in his short 5 months. And now, only three months after Charles went back home to Heavenly Father and Jesus Christ, we have a house and two dogs.

Silver(left) and Shadow(right) getting ready for bath time! 

Life moves at a fast pace and it doesn't stop just because tragedy strikes. We had to get back into a 'normal' routine. At least a 'new normal' routine. We didn't intend to look for and purchase a home so quickly. The house became available just a few days after Charles passed away. When Cody and I walked in we knew we had to make an offer. It felt like home. It felt right. So we made an offer and it was accepted. We narrowly outbid another couple for the house! Our Realtor was amazing! We could not have done it without Lois supporting us the whole way through the long and tedious process!  

Our new home in Washington Terrace Utah! We love it!

Since we bought the house, we have been hard at work. It has been gutted for the most part and we are updating the plumbing in the bathroom and the kitchen. The whole upstairs had carpet and that is now gone. We have hard wood underneath the carpet and we will be staining it. The bathroom had carpet as well... Needless to say it is gone! Oh my it smelled so awful!! The kitchen had the weirdest combination of metal and wood cabinets... Those are in the process of being taken out. We are planning on slowly finishing the upstairs and making it our home. We are so excited for this next chapter in our lives! 

We miss our sweet Charles more than words could ever accurately describe. There is not a day that goes by where we do not think of him and ache for him to be back in our arms. Without the dedication of everyone involved in taking care of Charles and all of his medical needs, he would have left us many months before he did. We had the best neurosurgeons and nurses at Primary Children's taking care of him! There are so many who took care of him to name! But just a few of his nurses that we love so much are Brittany, Sadie, Mindi and Jonathan! We love you all so much! Without you I would have lost my sanity months before we lost Charles. The wonderful Rainbow Kids crew at PCMC was such a huge help for us as we struggled to make decisions about what to do next to help Charles. Without them I probably would have strangled a few doctors... So thank you to the whole team! Without you life would have been much harder with all those months in the hospital. Our home health nurses were amazing! We love them and miss having them in our home. We will have to have you all over for a BBQ to celebrate Charles' first birthday I think! These are just a few of the people who have been so influential in helping us through this past year. We love you all like family! 

This little handsome bug is the reason part of my heart lives in heaven! I miss his smiling face, trusting eyes, and his bubble blowing mouth! Every time I walked in the room he had the biggest lopsided grin to give me! I miss seeing the love in his eyes more than anything. I miss him gripping me as tight as he could with his tiny little hands. He was the happiest little baby and he suffered so much in his short time here on Earth. OH how I look forward to the day that I get to see his beautiful face again! I am so grateful that he is no longer suffering. But I am so sad to be separated from him. Even for a short while. These last three months have been so full of sadness, despair, hope, love and laughter. Without the knowledge of the gospel, I would be a mess that could never get out of bed. I know that Charles is looking out for me and watching over and protecting me. I love you my little bug! Just remember mommy loves you so much! 

Charlyse Wilson

Pregnancy Portion

**Pictures will be coming as I can get to a computer. So check back periodically!**

Another extremely long post. But this post is all about my pregnancy. I recommend using the bathroom and getting a snack before settling down to read. 

We found out in early October that we were expecting Charles and we were thrilled! We had our first ultrasound October 8, 2013 and we loved hearing his strong little heartbeat. As the pregnancy continued I became more sick more often. I had several visits to the ER only to have them tell me I was fine and sent me home. 

So despite me feeling I'll so often we were still so excited that we were having Charles. We had names for both a boy and a girl picked out and we were anxious to find out what we were having. Each time we had a doctors appointment we would get our hopes up that this was the day we were going to find out what we were having. And each time we were disappointed. They would try and get Charles to move his legs out of the way, but he never would so we just figured he was being stubborn! (Not stubborn, simply unable to move his legs!)

Finally our targeted ultrasound arrived on January 27, 2014. I was 23 weeks pregnant and anxious. I had been increasingly concerned because I had still not felt movement. Whenever I was asked if I had felt the baby moving I would sadly say no. The doctors attributed it to being a first pregnancy and I probably didn't know what I was feeling. 

We had made up our plan for the day after our doctors appointment. We were going to go to the visit, find out if we were having Charles or Lilly and then we were going to go to lunch and buy the first gender specific outfit. That day did not go how we had planned. Not even finding out the gender of our baby. 

As we were watching our ultrasound of our baby the tech would point out all of the good things to us. We were so excited to hear our baby's heart beating and to see so much movement in the arms. She told us the baby had broad shoulders (she also thought that maybe Charles was a girl but she couldn't be sure) and then proceeded to point out a great heart, good looking organs etcetera. She then said, ''Now I am showing you all of the good things.'' At that moment I knew something was seriously wrong. She then proceeded to tell is the baby wasn't moving its legs and that there was something in its spine. 

We were devastated to say the least. We had about 3 hours before we could meet with our doctor, so we went home and just held each other as we cried. (This is saying something since it is very hard for Cody to cry!!) We had no words for the pain we were feeling. We had no knowledge about anything that was going on. Those 3 hours were miserable. We could hardly speak. We were in complete shock because we had been told for so long that everything looked good. No one wants to hear that something is wrong with their child. But it is even harder to hear it when everyone had been saying how good the baby looked and how strong the heartbeat was. They were right his heart is strong just like his little spirit! 

While we were in the waiting room I was thinking about the fact that our baby couldn't use their legs and I had a very strong thought, ''What if it isn't just the legs? What if it is the brain?'' This particular thought that seemed to come out of nowhere prepared me for our next talk with the doctor just 10 minutes after this thought. Once we were finally able to meet with our doctor she told us what was wrong. Our baby had Spina Bifida. A birth defect that develops by 28 days gestation. (For more detailed information on what Spina Bifida is look at my other blog http://whatisspinabifida.blogspot.com/) We were in shock. Everyone wants a healthy baby. We had envisioned a healthy baby and our dreams of teaching our baby to crawl and walk were crumbling. Despite taking prenatals and doing all that I could to keep our baby healthy, we had a child with disabilities coming to us fast. Even though my doctor and Cody told me not to blame myself I couldn't help it. For a long time I would mentally beat myself up over it. I would go through everything I had done and would ask myself ''If I hadn't done that or if I had only done this would my baby have been ok?'' We had been told that aborting the baby was an option (except once there was a defect they no longer called it a baby, it was just a fetus then). To which my immediate response was ''It was absolutely not an option'' and Cody completely agreed. It makes me sick to know that to the doctors that was an acceptable option. To this day it still makes me sick and it makes my heart hurt. Looking back on the events of that day I know that Heavenly Father was giving me little promptings that I now know were tender mercies. He was preparing me to hear the news that our baby would need extra special care. 

After we met with the doctor we were scheduled to meet with a perinatologist at Ogden Regional the following day. 

When we got home from our doctors appointment we were both completely drained. Our bodies and our minds were exhausted. That night Cody and I received a Priesthood blessing. It helped a little bit but we knew we wouldn't feel completely better until we had a few more answers. 

Cody called out of work. Obviously he was still in shock and we both just needed to comfort each other. It is impossible to put into words the way we felt those first few days. Many tears were shed because the future we had been dreaming of was no longer our reality. (Now I am not saying we were mad that this was happening to us. We were going through the grieving process. We had to mourn the child we had been imagining so that we could be prepared for the child we were receiving). Each and every child is a special gift from God and he was trusting us with one of his extra special children. (As a side note I had always felt that I would have a child with special needs and lo and behold we have Charles!) 

The morning of January 28, 2014 as I was lying in bed thinking over the last day, I began to feel movement. I stopped thinking about the day before and concentrated on my stomach. I had definitely felt movement. I began to cry and began thanking my Hevenly Father for allowing me to feel my baby moving. With tears streaming down my face I called out to Cody (he was in the other room at the time). When he came into our room and saw my tears he immediately came to help me, not knowing that they were tears of joy. I told him I could feel the baby moving and that they were not small movements. (By that night Cody could feel the punches from the outside of my belly). 

This tender mercy was an answer to prayer. When I first felt Charles move I was overwhelmed. I knew he was just trying to tell me that he was alright. I felt like Charles (although we still didn't know the gender at the time), was saying, "Mommy, I just want you and daddy to know that I am here and that I love you and I am ok". Thinking back on my pregnancy I get to have those sweet feelings in my heart all over again, and they remind me just how blessed I am to be Charles' mom. 

When we met with the perinatologist we were finally able to learn that we were having a boy! We were thrilled! We could finally use a name not just calling him baby. We were able to learn a little more about what Spina Bifida was, but we wouldn't know much more until we met with Paula. She is the expert on Spina Bifida at Primary Children's Hospital. 

As I reflected on what we had been told, that abortion was an option, I had many thoughts and feelings. My initial response was shock and then anger. How dare someone tell me I could get rid of my baby! It deeply upset me and it was something that I truly struggled with. As I was going through this I remember asking myself, if we had aborted what would have happened. (Let me clarify, aborting the pregnancy was NEVER an option!) I very distinctly remember feeling my answer to that question. "You would never have had any children." Plain and simple. I felt that in giving me Charles and in giving us the choice to keep him or get rid of him, God was asking us, "Will you take a child any way I give them to you?" Of course I had no trouble with that. I wanted our baby just as God intended him to be!

Now, we have been asked many times if we had known about what was wrong with Charles before he was born and if we had the option to abort. I cannot express in words the sadness that this brings into my heart. Despite everything we have been through with Charles, I would never change our decision to keep him. I know and Cody knows how special Charles is and how many lives he has touched. I also know that even though this life will be rough and that I will never get to teach my son to walk in this life, the next life will be that much more amazing. To know that one day he will be healed is absolutely amazing! And the day that I get to see Charles walk and be without pain will be a wonderful sight. I look forward to that day more than words will ever be able to say. 

This knowledge at times is hard to remember. Especially when things do not go as planned or as we had hoped. But, that knowledge will never go away and I am so thankful to know that through the Atonement my son will be made whole and will one day walk and that his brain will be healed and he will no longer rely on hardware to keep him healthy. Times have been extremely difficult these last few months. But, there have been moments of happiness and hope as well. I struggle everyday to find the good in what is happening and sometimes I see it and other times I don't. I do know that I will always be able to rely on my Father in Heaven to help me when I don't feel that I can go on. 

We met with Paula at the end of February and got so many answers. They had looked at the ultrasound and determined that the defect was on L-1. Which was a good thing. The lower the defect on the spine the better. (See my blog What is Spina Bifida for more information). We transfered my care to the University of Utah, because that is where we were told we would have to deliver. After every doctors visit we would meet with Paula. She would sit down with us and explain exactly what we had just been told. These meetings were great! We usually couldn't remember everything the first time around so having Paula re-explain was so helpful!

We had an MRI done before Charles was born. The MRI showed us that he had never moved his legs. They were able to know that for sure because there was no muscle on his little legs. We had been told that with where his defect was (L-1) that it was possible Charles would eventually be able to walk. Everything we were told pointed to the fact that Charles was a mild case. (We know now that his case is very complex and baffling to some degree. More on this later!) Despite their optimism I felt in my heart that he would never walk. **Mommy always knows! Don't doubt the mommy!** The MRI showed us that his legs were twisted like a pretzel. When my doctor saw the MRI images she told us we had to have him cesarean. 

The last few weeks of my pregnancy I had a doctors appointment twice a week. Because Charles was a high risk pregnancy they wanted to monitor him for any signs of stress. So I got to have a NST (Non-stress Test) done where I could just sit and listen to his heart beating. I came to cherish those moments and often times his heartbeat was so relaxing and calming that I would find myself falling asleep. I would record his heart beating so that I could listen to it again at a later time. Hearing Charles's little heartbeat put me at ease knowing he was still doing well and I could stop worrying for a little while. Those videos helped to calm me as I found myself starting to really stress! 

At one point I was showing the video to some family members and my niece, Scout (2), fell in love with the video. She took it around to everyone and had them listen to it. She walked around telling everyone that it was, "Baby Charwles' heart". Seriously the stinking cutest thing ever!!

One great thing during all of my pregnancy was knowing that Cody and I were trusted to raise such a special spirit. That has been both humbling and terrifying. I have always been the person that always tries to control everything. With this pregnancy I had to learn to let things go. Otherwise the stress and the worry was going to kill me. I had to completely rely on my Heavenly Father to take my worries and to help me learn to relax. Once I have my stress over to the Lord I became a much calmer person. This took months to do. The first two months we knew about Charles all I did was worry and I almost went crazy over it. Turning over my stress to the Lord has helped me remain calm, despite everything that has happened. 

Charlyse Wilson

The Day the World Changed Forever... Part Two

***This post contains pictures that are quite graphic***

**Viewer discretion is advised**

Most of this post is pictures with a few things written underneath. Most of our day is best explained through pictures rather than words.

Charles was taken from the University of Utah to a room on the infant unit where he waited before going into surgery. 

 This is the first view we had of Charles' birth defect. They wrapped him up in plastic to keep germs out. This was a direct path into his spine and ultimately his brain, if an infection was to get in it would have been disastrous.

 Cody had to go with Charles. They needed a parent or a guardian to accompany him while they took him to Primary's. Seeing as I was in no state to go with him, it fell to Cody. 

Remember that long hallway and bridge? Well this is it... 

 Transport is almost done. 

 The room Charles was in before surgery was 4319... We are very familiar with this unit now. Much too familiar... This is just one of the many rooms he has been in...

 This is an open warmer that they had Charles in to help keep his body temperature up before surgery. Everyone working with Charles was in a gown and wore gloves to help keep infection out of his spinal fluid. 

 The nurses got Charles going with his sucking reflex, knowing that this is such an important thing for him to start practicing. He is only a few hours old here. (My timeline is a bit fuzzy the first few days...)

 When I first saw these pictures of Charles, I was a bit taken back. I wasn't able to really see Charles clearly when he was in the incubator and on the stretcher. He honestly looks like he has a torso. His little legs were so contorted, it was hard to see the rest of his body. 

 This was the photo I absolutely had to have. Since I wasn't going to get to see Charles' back before he went into surgery I wanted to know what he looked like when he was born. Some may say this is a morbid photo to have. To me it is perfect. This is how Charles came to us.    

 This is a view from the other side. The opening on Charles' back was much bigger than the doctors anticipated. It was also much higher on his spine. Charles' defect was on T-12. Being on T-12 means that his case is much more severe than they originally thought. We were told after an MRI, before he was born, that his defect was on L-1. That is only one vertebrae different from T-12... Being only one off I would think it wasn't much different in severity. We knew that being in the lumbar was important. It meant less problems for Charles. That one vertebrae makes an enormous difference. (For more detailed information my other blog http://whatisspinabifida.blogspot.com/ will have more shortly).

 If you look closely you can see how Charles has his legs. They look like they are on backwards and his club feet are very noticeable. They have him all bandaged up while they wait for an OR to become available to perform the necessary closure in his spine.   

 Precious. These photos speak more words than I could ever say. Seeing my boys like this brings tears to my eyes still. Cody is sending Charles off into the OR for the first time. 

Even as young as he is, Charles still knows who his daddy is and wants to hold on to him. Seeing how tiny he is, compared to his daddy's hand, puts into perspective his little 5 pounds and 13 ounces. 

Our first real time together as a family. 

I was told that I could not leave the maternity ward at the U of U, until I was able to get up and walk around. I was up and walking by 4 pm. As soon as I walked from my bed to the bathroom, I was free to go. My mom put me in a wheelchair and ran (yes she ran), all the way to the waiting room at Primary Children's. I was able to get here before Charles was out if surgery. Being able to see his sweet face was amazing. There are no words to describe my joy at being together with my boys. It was after they took Charles, that I realized how much I missed him. I wasn't so fond of not being pregnant, because that meant that I could not protect him in the same way I had been. 

My boys were with me again. Things were going the way that they should. For the moment things were perfect. I love my boys!!

Charlyse Wilson

The Day the World Changed Forever... Part One

As usual, long and emotional! Better have those tissues handy...

Cody and I woke up around 4:30 am on Friday May 23, 2014. We had to be at the hospital by 5:00 am. My mom had also stayed at the hotel with my grandma(my dad's mom). Their room was also compliments of my Uncle David. (I better stop talking about how great he is, it might go to his head...) My mom took pictures of us as we headed to the hospital. 

 Outside of the hotel headed to the hospital

 At the first sign headed up the hill to the U of U.

 We took a sign at the hospitals main entrance. As soon as we finished taking the picture, we turned to walk into the hospital and saw the most beautiful sunrise.

 Cody and I walked through the main entrance knowing full well that our lives would be changed forever. We just had absolutely no idea how much!

 This is the bridge between the University of Utah Hospital and Primary Children's Hospital. We knew that this would be the path that they took Charles in just a few short hours. Looking at this picture now, reminds me how long the road ahead of us is. 

 I just love this picture. I love Cody so much and we have just grown closer together through everything with Charles. 

 We began our check in process at 5:38 am. My stomach was churning I was so nervous. I was so worried about what the rest of the day was going to bring. 

 The check in desk where we waited anxiously for a room to begin our journey with Charles. 

All ready to go! Moments before we were taken into the OR.  

 My Uncle Jim was in the OR with us and took pictures to help us remember the biggest moment in our lives so far. 

The moment that Charles Timothy Wilson made his entrance into the world. He was born at 8:05 am and immediately taken to the window(in the background) that goes straight into the NICU. 

Before Charles was born, I lay there on the table(we had to have him C-Section), unable to see anything but the cloth in front of me. Tears were slowly leaking out of the corners of my eyes as I waited for the birth of our son. As soon as I heard his first little cry I was in love. I remember asking Cody what it was. We didn't know for sure that we were having a boy. I heard the doctor say, "It's a .... boy", as they finished removing him from my stomach. The pause really was dramatic, just not intentional. Charles was born with his legs twisted like a pretzel and so it made it difficult to tell if he was a boy or a girl. I heard three little cries from Charles before he was taken from the room. That was it. It was over. I couldn't believe it, our son was finally here. I was so relieved that he was doing ok and that I would get to see him in a few hours. I was so emotional and just had tears constantly leaking out the corners of my eyes. 

I was sown back up and taken back to my room to recover. Cody was able to take everyone who was there back one by one to meet Charles. I must admit, this hurts me to this day. Everyone got to see my sweet angel, who I had carried for nine months, before me. I had only heard my sons weak little cry. I didn't even know what he looked like. I had not been able to see his beautiful face. 

Cody and Charles in the NICU at the U of U.

When Cody took his dad back, Charles did an amazing thing. He heard Cody's voice and he looked for his daddy. To watch the video makes you tear up. It is a beautiful thing to watch as Charles looks for his daddy. 

***check back for videos***

My first look at my precious baby!

The first time I saw Charles, he was in an incubator and on a stretcher with all sorts of medical equipment. All I could do was stick my hand through the hole to touch him. I was still completely numb and couldn't lift myself up. My mom pushed and held me up. As I held my sons tiny hand, all I could do was cry. I only had a minute or two with Charles before they took him away. It was both the best and worst day. 

Charlyse Wilson