Welcome!

Welcome to my blog! This is mainly the story of my son, Brayton Cade Moak. His life is a testimony to me, and many others. I hope this blog encourages those of you who are going through difficult times, who have sick kids, who are lacking faith, and who need a reason to believe in miracles. I never thought that I would see a miracle, much less give birth to one. My son, my precious angel, is my miracle. His story, as well as his father's and my story, will hopefully fill your spirit with love! God is good!

Saturday, December 31, 2011

2 Corinthians 2:10

"That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

Ask my parents, nurses, doctors, Luke, or any other family member and they will probably tell you how amazed they were at how calm, cool, and collected I was during this whole ordeal. I had doctors and nurses tell me that I was so calm in the midst of all we were going through. I hate to admit this, but I was far from calm.

The night Brayton crashed, I was a mess until the nursing assistant grabbed me and prayed. Then and only then was I calm and able to take everything that was happening. My strength comes from the Lord. At my weakest moments, God makes me strong.

During days, God gave me the strength I needed to be strong for Luke, for Brayton, and for our families. I knew if I lost it, they all would too. I held it together and trusted in God completely to get me through it all.

At night, it was a different story. Every night, I argued with God, I cried, I prayed. I was so drained from being strong for everyone that at night, when it was just me and God, I didn't have to be strong. I let it all out. Each night, God helped me renew my strength for the following day.

I questioned God some nights... Why did he let this happen? After Brayton got the trach, I asked God how I was suppose to deal with not hearing my baby say "mama" or hear him laugh. How was I going to deal with not taking him to the beach his first summer which I have been planning since before he was born. How was Luke going to deal with not being able to take Brayton to dirtbike tracks? God's response, "I am here and he is here." The petty stuff I was worried about is nothing compared to knowing my baby is here in my arms. We can deal with the rest as long as he is healthy and God is there to lift us up when we are down.

God has also put people in our lives to help deal with the things we are facing. First, Luke and I are both blessed with Godly families who are there whenever and for whatever we need them. I can't express how thankful I am to have such a supportive and loving family. We are also blessed with some amazing doctors who are God fearing men.  We have a night nurse who is an absolute God send! She takes care of Brayton at night for 8 hours, feeding him, filling his machines, suctioning him, reading to him and much more. Our friends and our community who have prayed and prayed and prayed. Mine and Luke's bosses for understanding when we need to be off and for coworkers who have helped in numerous way. God used friends to point me to Easthaven Baptist church where there is a sign language class so I can learn sign to teach Brayton so we can communicate. Even strangers, who have sent messages on facebook saying they are praying for us.

One thing I have learned is that prayer is super powerful! We have had people in so many states praying for our precious baby boy! Words can't express our gratitude. It is amazing how just a message from a stranger saying, "I am praying for you" can make all the difference in the world.

Thank you, facebook and blog followers, for your support! Each and every person who has helped us, prayed for us, and contacted us are God's way of helping us. You are all angels. We love you all!

Wednesday, December 28, 2011

From one rare thing to the next...

I did not mention in my previous blog what exactly botulism is. It is a very rare toxin that is ingested which causes paralyzation. It starts in the GI tract, which is why Brayton was constipated first, and works its way out. It can be deadly if not caught because it paralyzes the respiratory system whcih is why Brayton struggled to breathe. The neurologist told us he has only seen one case of botulism and that was in 1990. Then all of a sudden, there were 2 in infants! The botulism in Brayton was confirmed a couple weeks after his stool was sent to California. I am thankful doctors got the medicine here quicker than that so Brayton could start to heal.

After Brayton got off of the ventilator, we moved up to a normal room. He still had an NG tube down his nose because he wasn't eating and had lost a lot of weight. He was still struggling to breathe and his oxygen levels continued to drop. I was constantly watching his monitors. Not only is there a monitor in the room, but there is one outside the door, and in the nurses station. Every time it would beep, I was on my feet looking to make sure he wasn't blue. One day, it kept dropping and we ended up with the resident, attending, and all of the students and nurses in our room watching him. They ended up moving us closer to the nurses station so Brayton could be monitored more closely.

Eventually, the resident doctor following Brayton insisted on having ENT, ear nose and throat, doctors come and look at him. Brayton was still struggling to breathe and his cry was so hoarse. They did a small scope in his mouth to make sure his vocal cords were ok and not damaged from being intubated. Vocal cords were fine. Praise God! Otherwise, Brayton would never be able to talk. The ENT doctors schedule Brayton for his first surgery to run a scope further down his airway to see if it was swollen from being intubated for so long.

On a Tuesday, we went to the surgery floor. There we met another doctor who cares more than anything: Dr. Reed.  He told us they were looking for swelling and scar tissue. If it was bad, they would put in a balloon to dilate the airway so he could breathe better. He said that worse case scenario, he would have to put in a trach, but that was very unlikely.

Luke and I waited in the waiting room thinking Dr. Reed would find some swelling, know how to fix it, and we would be done. When Dr. Reed came out of surgery, he took us to a small conference room and said, "It is bad. I have never seen anything like it." Which is just right for us, because first we have botulism that no one gets, now we have something else. He explained that the cartilage in Brayton's airway was broken. There was a huge hole in it. He showed us the picture and I am not sure what an airway is suppose to look like, but this looked bad! Our only option was to put in a tracheostomy. They did it while Brayton was still in the back. The next time I saw my son, he was breathing out of his neck.

We left our home on the regular floor to go back to PICU for a week to make sure the trach hole healed. Once again, we couldn't hold him until it was well enough that we wouldn't mess anything up. Then we received another blessing from God: Brayton started smiling a true smile and he hasn't stopped since!

The resident and medical students from the upper floor came to visit us several times. One med student brought us a crocheted hat that his wife made for Brayton. He had told her about our son and that Brayton had made him decide that he may want to go into pediatrics. This hat will always be a reminder to me that there is a bigger picture. One thing happens, and leads to another.

After getting the trach, I had to go through 2 weeks of training. They had to train 2 people so my mother in law, who decided to stay home and keep Brayton while I worked, trained with me. We learned how to clean the trach, how to change it out, and what we could and could not do. We have to clean the trach twice a day and change it once a week. We have a humidifier that hooks to his neck, an oxygen monitor, and a suction machine at home. We learned how to use the machines and what to do if the trach gets stopped up.

One thing that is important to know is that Brayton can't breathe without the trach at all because his airway is so messed up. When we change the trach, he can't breathe for those few seconds. If the trach gets stopped up, he can't breath. It is scary and we are constantly watching him and making sure he is ok.

Before we could leave the hospital, Ms. Jean and I both had to change the trach out twice. We both did it without any problems and we were sent home with all of our equipment and knowledge of what to do. We have an ambu bag so we can give Brayton breaths if we need to. There is constant worry and fear that something may happen. It is exhausting.

We have to be careful in the tub because if anything gets in the trach, it goes straight to his lungs. We can't got to dirtbike tracks or the beach. We can't have candles or spray anything around Brayton because he will breathe in the fumes. It is a constant thing we have to monitor.

We will hopefully get the trach out one day. Dr. Reed said that Brayton will probably have to have a major surgery to fix his airway, but this can't be done until his is 22lbs and about 1year old. He is only 13lbs now so we have a long way to go. The only thing that keeps me going is knowing the trach will eventually come out and that other parents have gone through this for years. Some kids have trachs their whole lives. I just keep telling myself that if they can do it, so can we.

The reason Brayton's airway has broken cartilage is because when he was intubated, the doctor shoved it in and it broke the cartilage. Many have asked why we do not sue the doctor. The reason is simple: he saved my son's life. Had Brayton not been intubated while we were at the hospital back home, he would not have started back breathing, and therefore, he would not be here. I am thankful for the doctor who saved his life. Besides, if we sued, he would be terrified to intubate another kid and that would cause that child to die. The doctor was doing his job and although the world says sue, my heart tells me different.

Now that we have the trach, Brayton has fully recovered from botulism. He is smiling and happy ALL the time. We can't go many places because kids with trach get sick easily. In fact, just a few weeks ago, we were in Batson again for a few weeks with a viral infection. Every little illness puts us back in the hospital or doctor's office.

This past Monday, while changing the trach, I couldn't get it back in. Brayton turned blue until I got it in and he was able to breath. I almost had to bag him and call the ambulance. As soon as I got it in, he was fine, but we went straight to the doctor to make sure he was ok. Dr. Shann said this would not be the last time this happened and just to remember that even if Brayton passes out, all we have to do is give him some breaths. He also said that he would be glad to change the trach out for us. So next time, we are letting him do it. I am terrified of messing up now. But he assured me that I did everything right.

We take Brayton once a month for a scope procedure. Brayton is put under anesthesia while doctors check to see how his airway looks. We are exhausted physically and emotionally. However, all it takes is one big smile from Brayton, and the problems we face seem insignificant. If he can make it through everything, then so can I! God has truly blessed us!

Tuesday, December 27, 2011

The Botulism Baby

Brayton was admitted to the pediatric ICU (PICU) at Blair E. Batson. Before I continue, I must first explain how the PICU at Batson works. Parents are given a purple band. They are the only ones allowed back in the rooms from 8am-7pm, and 8pm-7am. For 2 hours out of the day, during shift change, even parents can't go to the back. Parents can take visitors back from 12 noon-7pm. The rooms are set up with glass doors and windows. Curtains can be drawn for privacy, but the windows by the nurse's desks can't be covered. There is one nurse at a desk sitting between 2 rooms. That nurse is constantly watching the children in the rooms. In the room, the children are in beds in the middle of the room. There are 2 recliners in the back of the room for parents to sleep on. Two people that the parents choose receive supporter bracelets. These people can go to the room without the parents from 12 noon-7pm, and 8pm-7am.

When I first walked in the room to see Brayton, I was completely shocked at how small he looked. He was on a small table with a warming light above him. He had the breathing machine hooked to him and taped all to his mouth. The sight, honestly, reminded me of something you might see in a laboratory where experiments are performed. It was scary but the first thing I did was plant a kiss on my baby's head and hold his little hand.

Speaking of the breathing machine, I did not realize this until after we had gotten home, but the breathing machine is life support. Brayton would have died without it. Breathing machine sounds just like something that isn't a big deal. Once I got home and though about it, I realized it was the only thing that was keeping him alive. It was a scary thought. When we were going through this, I did not put that much thought into it.

The first day we were there, they performed test after test on Brayton. They did 2 spinal taps, MRI, blood work, CT scan, EEG, and several more. Every single test came back normal. This was probably the most devastating thing ever. I wanted to know what was wrong so bad so that we knew what we were fighting.

If you know our family, there were always people at the hospital. Since people couldn't go to the room, we always had a crowd in the waiting room. When a person is in the waiting room surrounded by other parents and families, you can't help but talk and get to know each other. You become a family.

Well, our family in the waiting room got to talking to another family. The first thing you usually is ask is, "Why are you here?" The dad said that they just found out that his son had botulism. My sister in law was curious so she looked up botulism online. The symptoms matched exactly what Brayton had! Luke and I ended up talking to the dad. Symptoms progressed the same way between both our boys. Every test came back normal for him as well. The dad gave us a doctors name and told us to ask for an EMG test. We told the doctor this, but they claimed that botulism was so rare that there was no way they could both have it so they put the test off. Finally, after they ruled out everything else, they called in the neurologist who performed the EMG. This test checks the brain waves and muscle use. The results showed that Brayton's brain was telling him what to do, his muscles just were not responding. He said that he was positive Brayton had botulism but a stool sample would be sent to California for confirmation.

The neurologist told the doctors to go ahead and order the botulism immunoglobin, babyBIG, to give Brayton. A few days later, babyBIG was flying to Jackson, MS all the way from California. Luke and I were contacted by the California Health Department and were sent tons of information on botulism and babyBIG.

BabyBIG had very specific instructions for administration. The next day after Brayton received the drug, his eyes started to open a little. Over the next couple of days, he started to moved just a little then gradually got better.

Since Brayton was still on the ventilator after receiving the drug, they started to wean him off. I decided that just praying for healing wasn't enough. I needed to be specific with my prayer. I began to pray this prayer: "God, please help Brayton be off the vent by Sunday." Those of you who followed my facebook page saw this prayer all the time! Well, my prayer was answered!!! On Sunday, September 11, 2011, the breathing machine came out and my baby breathed on his own! For the first time in 2 weeks, I got to hold my little one and love all over him!!! God is so good!

I know without a doubt that God breathed life back into Brayton that day. He gave Brayton the strength to breathe on his own. Some may credit this to the babyBIG, but drugs can only do so much. We had and still have people praying for Brayton all over the United States. I know without a doubt that God answered our prayers and HE is why Brayton is alive today!

The other little baby boy who had botulism received the drug a week before Brayton and was able to go home a few days later. He never got as bad as Brayton and was never intubated

This is no where near the end of Brayton's story. I will continue our hospital stay and talk about the tracheostomy in coming blogs!

Sunday, December 25, 2011

Brayton Cade Moak

At 10:31pm on July 25, 2011, Brayton Cade Moak was born! I was induced at 6am that morning so it was an extremely long day! However, it was all worth it and I gave birth to a healthy, 7lb 1oz, 21in long baby boy! Never have I experienced such a feeling than holding my son for the very first time! There is nothing like it!

Luke and I came home with our baby boy and got to experience the joys of parent hood: getting peed on, getting woken up in the middle of the night, trying to comfort a crying baby. Good times! Little did we know that those cries that woke us up every night would be short lived.

When Brayton was 4 weeks old, he became constipated. According to doctors, this happens to a lot of babies. We gave him juice and medicine and thought nothing else about it. By the end of that week, Brayton gradually stopped eating. He was eating about 4-5oz every 4 hours. Then he went to 3oz, 1oz, then stopped completely. He began to sound very congested, making gurgling sounds. His cry became very hoarse and weak. Of course, this happened on a weekend so doctors were out of pocket! On a Sunday, Brayton was just not acting right, he still wasn't eating, and still sounded congested. I called the children's clinic and got the nurse on call who told me to take him to the ER because he might dehydrate. We loaded up that afternoon and went. They sent us home saying it was just a cold. We went back home with a fussy baby who wouldn't sleep. My mom ended up spending the night that night. Brayton was not doing good at all so early Monday morning, I called the clinic again and got the same response. So we went back to the ER. Apparently, because Brayton was "not dehydrated yet" according to doctors, there was no need to admit him. It was "just a cold." By this point, my "mother's instinct" was kicking in and I was determined to get answers.

We waited until 8am and called the children's clinic who told us to bring him in ASAP. So we went there. Dr. Braden took one look at him and said he was getting him a room in the hospital. They admitted him with bronchitis on Monday, August 29th.  We had a very rough night at the hospital. My mom and I stayed with him that night because we thought it was nothing major and would be fixed soon. On Tuesday, Brayton was not any better. When Luke got off work, he came to the hospital and he was planning on staying that night. He and I talked about how Brayton looked worse than before. Brayton had started moaning and had become very floppy. He had no facial expressions or muscle tone. His oxygen level kept dropping. I literally stared at his machine all day watching the numbers. When Dr. Braden came by, he said if Brayton wasn't better by morning, we were going to UMC.

Later that night, Luke and I were talking to the nurses about going ahead and taking Brayton to Jackson instead of waiting. I am so glad the nurses were in the room because all of a sudden, Brayton's oxygen level dropped, his lips turned blue, and the nurse said it was about to get very crowded in the room. We both grabbed our cells and walked out while the nurse started CPR and the ER team came in to do their thing. I was a complete wreck. I called mom and told her I needed her there now that Brayton stopped breathing. Luke called his dad. It was a nightmare. I was shaking like crazy and couldn't stop.

The nursing assistant who takes temps and blood pressures asked if I needed a blanket. I told her no that I was just scared. She wrapped her arms around me and began to pray. I have never felt God the way I did in that moment. All of a sudden, I felt calm and I was able to pull myself together.

The first family member who arrived was my sister. I have never been more happy to see my loving sister in my life. In the next few minutes, my parents, Luke's parents and siblings, aunts and uncles and pastors (yes, plural. Living in a small town means you know and love every preacher around here and they are there for you even if you go to another church!) showed up. Thank God for such a great support system!!!!

By this time, the ER team and Dr. Braden had Brayton stable. I was able to go in and rub his hand. They had a breathing tube in my tiny little man. It was hard to see, but I wanted to touch him and let him know that his mommy was there. The Batson pediatric helicopter transport team came to transfer him to Blair E. Batson. We were unsure if anyone would be able to ride with him so Luke called his dad who was in Vicksburg and told him to go straight to Jackson instead of coming to us so that someone would be there when Brayton got there. I sent my parents on to Jackson too. The rest of the family waited with us.

When the pediatric team got Brayton stable and ready to go, they asked if I wanted to ride with them! That was a given! I wish I could say riding in a helicopter was awesome, but really, I do not remember much. I was given a headset so I could talk to the guys in the back and the pilot. The guys in the back with Brayton got the pilot to put them on private so I couldn't hear them. I don't know what happened and it is probably a good thing! The main thing I remember is seeing a shooting star. It dropped right in front of the helicopter. I think that was God's way of telling me he was there and closer than I thought. The entire ride took 15 minutes!

Getting to Batson is a blur. I just remember having to wait until they got Brayton set up in a room before we could see him. When we did get to see him, he looked so small and fragile and the machine was breathing for him. It was scary.

Every time I remember this night, I remember how lucky I am to have my son. Because it all went by in a blur, I never realized how close we came to losing him until I looked back on what happened and let myself remember the details. Praise God for saving my son's life and for doctors and nurses who are amazing at their jobs!

Before I end this part of my story, let me just say that this was by far the hardest thing I have ever been through! My one and only son died for just a few seconds, and I was never so afraid in my life. Looking back, when I think about this, it reminds me of God sending his one and only son to die for us to save us from our sins. He knew Jesus was going to suffer and die and he let it happen. I know for a fact, it is not an easy thing to watch your son struggle. I have a whole new outlook on what God and Jesus did for us!

Through this entire experience, God has revealed himself to me. First with the nursing assistant praying, second with the shooting star. As I continue my story, you will see that God was there. He was, is, and always will be...

Friday, December 23, 2011

Naming Brayton

Before Luke and I decided to have kids, I told him we had to go to Disney World first without kids so we could do what we wanted. We ended up going with my sister's family and my mom in October of 2010. We had a blast. I rode every ride!

The next month, during Thanksgiving break, we found out we were going to have a baby!!! The next thing we did was tell everyone we knew.

Once we found out it was a boy, we had to make a super hard decision: pick out a name! Picking out names for children is definitely the most stressful thing I have ever done. I was dreaming of names and trying to find the perfect one! I wanted a cute name, Luke wanted a dirtbike name. We went through several that our parents didn't like. (I eventually stopped asking their opinion! Haha) I liked Cade, Cannon, and several others. Luke didn't like any.

Finally, while watching a race, Brayton flashed on the screen to show Justin Brayton's score. Luke asked what I thought about it. I wasn't crazy about it, but at that point, I just wanted a name! So we took Brayton and stuck one of my favorite names to it and ended up with Brayton Cade. Simple, unique, and special! Luke got his dirtbike name and I got one of mine so we all ended up happy. The name grew on me and by the time he arrived, I loved it!

Thursday, December 22, 2011

Continued...

Continuing my story...

Luke and I went through high school as friends. When we got to Co-Lin, when he got to Co-Lin rather, we hung out a few times. One of these times stands out in my memory because it was the first time that I actually thought of him as "a perfect guy."  He had to meet his brother at Burger King for something so I rode with him. We rode around for a while after meeting his brother and he grabbed my hand and sang "Broken Road" by Rascal Flatts and every other song on the CD. It took everything in me not to laugh my head off because the poor kid can't carry a tune! Haha. I was so embarrassed for him! When I got back to my dorm room, I sat down and replayed the night in my head and for the first time, I thought to myself, "He would be the perfect guy, but I just can't see myself with him." I went and bought the Rascal Flatts CD the next day and listened to it all the time! To this day, if I listen to that CD, I remember that night!

A few more years went by. I moved to Hattiesburg to go to school. He stayed in BC.  When I got to Southern, things really got started. Out of the blue, Luke called me to talk. He told me all of his girl drama and what was going on in his life. I gave advice and listened. I complained about school and boys. He gave advice and listened. We talked for hours on the phone. One weekend, he invited me to a bon fire at his house. It was close to Valentine's because I was at my church's Valentine's Banquet. I decided to go after I left church. He was actually shocked that I actually showed up! We hung out that night with everyone and had fun.

One weekend we watched movies. Our friendship kept growing. I guess we were "talking" but I straight up told him that because he just got out of a relationship, I did not want to even talk about being a couple. A week later, he called and said he had a new girlfriend. I told him that was fine and I would leave him alone and let him focus on his relationship. He, of course, freaked out and told me not to stop talking to him. I told him that he was on the rebound and I understood and I was going to let him do his thing. We texted every now and then, but I made sure the long phone calls stopped. About a week or two later, Luke's grandpa had to come to the hospital in Hattiesburg for something and he called to see if he could come see me. We sat outside and talked for a long time. He said he knew what he needed to do; he broke up with his girlfriend not long after that.  ;)

I still wouldn't let us be officially a couple. We hung out and talked. After a month or two, he asked me to be his girlfriend. I think this was in June 2008. I said yes, but that I could not promise it would work and that I did not want to hurt him. He said he completely understood which blew my mind because most guys flip out and say, "fine. You just don't care. Forget it." Not my sweet Luke. He understood. So we took it day by day. It only took a few months for me to realize I loved him.

The very moment that I realized Luke was the one for me and that I loved him, we were riding 4 wheelers at Copiah Creek. We were covered in mud and we had gotten separated from everyone. We were lost and just kept picking trails trying to find our way back to everyone. While we were riding, it hit me that I could live like that forever.

Our friends just kept saying how they couldn't believe we ended up together. Luke always told me our story was like Corey Smith's song, "From a Distance." Check out the lyrics, it really fits our story!

One day in December, it snowed, and Luke begged and begged to come to my house. I was hanging out with my mom and told him to just wait. He was kind of driving me crazy so I finally told him to come over. We went to my grandparent's house and built snowmen. When we got back to my house, he walked outside to talk to his dad on the phone. He came back in and told me to come look what he found. I was wearing pajama pants, a big sweatshirt, and had no make up on. When I got outside, he had written in the snow, "Will you marry me?" I said yes! Six months later, July 11, 2009, we got married! Best day of my life. We wore shades when we walked out of the church and we left on a street bike. We had an awesome honeymoon in Chattanooga, TN. I loved him so much and loved him even more today!

God truly made us for one another and He has blessed us both!

I love you Luke Moak!

The beginning...

In hopes that one day my children will read this, I must first start at the beginning. No, not from the moment, Brayton was born. I am going way back! Had Luke and I never gotten married, we never would have had a child and never experienced our miracle. So, I must tell our story first. Then I will begin will my precious baby!

Luke and I have known each other pretty much forever even though we weren't best friends. We went to the same school; our sisters played ball together; our parents knew each other. (When you live in a small country town, it is a given that you pretty much know everyone.) Nothing significantly stands out in my memory of Luke until high school. However, he claims we wrote letters to each other and swapped Nintendo games in the third grade. I vaguely remember this. I do, however, remember us playing together when our sisters played ball and at his cousin's house. It just so happens that his first cousin was my best friend growing up. Since these memories are not very important, let's fast forward to high school...

Luke was a sweetheart in high school: tenderhearted, kind, always willing to help someone. He was a year behind me in school, although only a few months separate us in age. He played baseball and basketball. He was scrawny and slightly awkward! (haha. I love you, honey!) He was the guy I said I wouldn't date, much less marry! Then there was me: cheerleader and softball player. I was outgoing and always smiling. Luke claims he knew he was going to marry me when he was in the 7th grade. I am not sure how much I believe that. As much as I would love to say this is where we fell in love, it's not. Like I said, I wouldn't date him. In fact, the one who would become the love of my life, was brutally rejected by me once! I am not an evil person, but I must admit, this was pretty cold:

A school dance, just what every student waits for. Who are the boys going to ask? Who do the girls want to go with? We were no different. I loved dances. Luke worked up the courage to call my house and ask me to a dance. (There is no telling how long he practiced asking me in the mirror!) I got on the phone and there was a little small talk, then he popped the question: "Will you go to the dance with me?" I was completely caught off guard and without thinking I said yes! After we hung up, I completely freaked! What was I thinking?!?!? What would my friends think?!?!?!?  So, I did the only thing I could do...I called him back and told him I couldn't go with him. Luke claims he was eating fruit loops, was scarred for life, and could no longer eat fruit loops. We joke now about our "fruit loop" story. However, I wonder what would have happened if I would have given him the chance back then.

That is all the time I have for today! I have to get ready for Christmas at my mom's!
To be continued...