I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Friday, July 29, 2011

Today's been okay.

Today has been a good day. Of course I miss my little man, but I've got some good support behind me who have kept a smile on my face today <3. I love my friends & fam. They are the most important people in my life. I'm so thankful God has put the most amazing people in my life! I'm going next week to try to get a job through a temp service. I haven't worked since April 2007 I believe. .I know it was when I got preggo with Kayden when I last worked. So that's what 4 years. Wow lol, this will be so much different that what I've been doing the past few years. I hope I can adjust to it. I'm kind of worried though about being around people, I think I may get overwhelmed being around people, sometimes just going to Wal mart makes me feel kind of off..I was going to take Kayden new flowers today but instead we are tomorrow because we have Lexi's heart from his service & we are gunna keep the shape & change the colors that way it'll always be from her. So tomorrow he gets all new flowers <3 YAYY!! And I'm going to eventually attempt to do a Spongebob Arrangement like the flower shops do the hearts lmao! That should be interesting but I think I can..

Thursday, July 28, 2011

My Angel

I miss him so much. Yesterday was 2 weeks and it seems like it's been a lifetime ago when I had him with me. I think of him every single day every second. Most of his flowers from his funeral are dying and getting ugly. He has about 3 left that look okay. I hate that flowers die =[. They start out so beautiful I wish I could keep them that way. Anyways so a little off topic. I still can't believe that he's gone. I accept the fact he is gone & isn't coming back. I know that, I don't like that EVERYTHING we have fought for in 3 1/2 years was taken away within like 10 mins. That is what makes it so hard, is it happened so quickly..no warning. I know it's bad to say but I can't wait until I'm with him again, I honestly wouldn't care when it'd be as long as I can be with my little love again <3. I try not to cry every time his 2 year old brother kisses a picture of Kayden or kisses Kayden's Mickey Mouse pillow and tells it good night, or how he gets SO excited to see a picture. It makes me sad when Alexis says, I miss seein Kayden. My kids didn't deserve to lose their brother just like I shouldn't of had to bury my son...MY SON SHOULD HAVE BURIED ME!!!

I hate all this. I hate CHDs. I hate that some of our kids don't make it. I HATE EVERYTHING ABOUT HEART DEFECTS. AND IT PISSES ME OFF YOU DON'T HEAR ANYTHING ABOUT THEM! It is the NUMBER 1 BIRTH DEFECT but yet we hear nothing of them. WOW. Really? What kind of world is this? I hate their is no cure. Transplant? NO that is NOT a cure it's a lifetime of meds, biopsies, possible rejection, blood work, etc. It's just another treatment. NOT a cure. I'll fight until it's my time to go for all of our CHD Angels, Warriors & the transplant survivors to raise awareness & help funding <3 I promised I would fight for Kayden until MY heart stops beating. And I intend on keeping that promise! I love & miss you baby boy <3 Always & forever

Monday, July 25, 2011

Unconditional Love

My heart is aching for another family tonight as well as my own. I found out another little boy 3 years old named Kayden passed away at the same hospital as my baby. My heart is broken for them. It just brings back ALL the pain I felt that night when I got the call that Kayden was gone. I just remember riding the whole 2 hours to Charlottesville in tears, I was numb, I couldn't say anything except WHY GOD WHY? WHY DID YOU TAKE HIM?! That is ALL I kept saying and I remember telling Kayden before I had found out he was gone..it was after the call that said 'Misty, we're losing him you need to get up here now'....I was running around the house trying to get ready & get the kids up waiting for my brother & I was praying out loud to God to help him stay strong & I was telling Kayden to keep fighting to just hang in there. I just thought to myself riding though, that God did not listen to me, God didn't answer my prayers. He did NOT give me what I wanted....It wasn't until after things calmed down until I realized, God DID answer my prayers, and he did not do this to hurt me. God Answered my prayers because ALL I ever wanted was my baby to be okay. And Kayden is PERFECT now, he is not hurting & this way my baby will be with me ALWAYS. At first I was mad I was mad at God for taking bubba from me. But I guess all that is normal to feel. I didn't realize until a few days ago that, even if he had a transplant it would not have been over. I talked about that in the previous blog post about him still needing to go back for appointments to check for rejection. God has a plan for all of us, he will never give us more than we can handle. I truly believe that. Ya know and after hearing about this family it made me wonder, well DID they do everything to help my baby? But then I thought well if I question them, then I have to question God. Because if they made the mistake surely God wouldn't have taken Kayden. He had the power to help that little heart beat. I've never been a real religious person, or ever really went to church. But going through all this God is the ONLY place I've been able to turn for answers, the only place I can find peace. Because that is who is holding on to my baby right now. Kayden showed me how to love unconditionally. No matter what life threw at us, I never once thought of Kayden as a burden, or thought 'OMG we've got to go do this again'..I never once thought twice about taking him somewhere. Everything he went through if it's possible, it made me love him even more. He showed me what strength & courage was. He showed me to keep hoping even when you thought you couldn't . He taught me to pray even when you didn't think you could anymore. Kayden is an inspiration & I know what REAL LOVE is now. He will ALWAYS  be with me & my family. He will ALWAYS watch over other heart kids & he will always be there waiting for the CHD babies when they become Angels. He will be the one to welcome them into Heaven <3 I'm just so thankful I can realize this, because I'm sure there are people out there who can not accept any of this until many years later. <3

Sunday, July 24, 2011

10 days baby boy

It's been 10 days since Kayden became an Angel <3 I miss him so much it hurts. I wish I could hear him yell for me or at me. I wish I could just talk to him & him talk back. Because yes, I do talk to him EVERY day & I still tell him every night, goodnight & I love him..So call me crazy, that's okay because after all I've been through I think it'll be okay if I am crazy now. It all still seems so unreal. I expect him to yell for me to get him out of bed, or even see him walk through the hall to the living room & stop at the door for me to come pick him up. I've been to the cemetery every day since we laid him to rest Monday July 18. Even if it's only a second to be sure no one has messed with his flowers. They'll probably be getting his flowers from his service tomorrow, they are all ugly and dead from the heat. So we got new ones from Wal-Mart & 2 Spongebob balloons <3 I just know he would love them! All I keep thinking of is, he isn't hurting anymore but some days that doesn't help. I also have to keep believing and reminding myself, if it wasn't his time to go, God wouldn't have taken him. If God didn't want Kayden to be an Angel that early morning, he would have helped that big ole heart beat some more. That is one thing that has gotten me through all of this is my faith, I handed everything over to God & I knew it would be okay. He took care of Kayden, he took all of his pain away because he knew it would never be over. Even after transplant he would have had to still go back every year to be sure his body wasn't rejecting it. So it would NEVER be over even after transplant. I believe we are all here for a purpose, I also believe as soon as we are born God has our 'expiration' date written down. I don't know what Kayden's purpose was unless it was to make me see how strong I am, because he sure did & he made everyone around him strong. He showed us the true meaning of life. & I do believe when it's my time to go I'll see that beautiful smile again. And as bad as it may sound, that gives me something to look forward to. I love you my sweet Angel <3 Watch over all of us, we miss you to the moon & back plus more <3 xoxo

Thursday, July 21, 2011

Kayden James

I miss you sweet boy <3 I just wish I could see your sweet face once more, that smile that brightened up my day. I miss hearing your voice every day & night. I miss the feel of your touch when you'd hug me, I miss giving you hugs altogether, I know you hated them sometimes but I would still squeeze you tight and this is the reason why...because I didn't know how much longer I would have you with me. I am just so thankful I had you for 3 years than not at all....You touch my life baby boy & you made me stronger. Just guide me through this sweet heart <3 I miss you Kayden James more and more everyday if that's even possible. You are my life Kayden <3

Wednesday, July 20, 2011

I miss you more than words can say..

My heart is broken...It's almost been a week since Kayden's been gone. Everyday continues to get harder. I miss him more than anything in this world. The pain I feel is just explainable. He was my life for so long & all of a sudden he was gone from me in a matter of like 10 minutes. How is that? I know I can't ask myself why or say I wish this was different, because I KNOW in my heart and in my head that it will never change a thing. I know Kayden is gone & isn't coming back. I know I can never hold him again. I can talk to him but I can't ever hear him talk back to me. The hardest time of the day is bedtime I think. Kayden had a special thing every night. He'd always take his medicines, then I'd ask him if he needed more drink or wanted chips or anything to take to bed. Then we'd sing his moon song; 'I see the moon & the moon sees me, the moon sees somebody I want to see. So God bless the moon & God bless me, & God bless the somebody I want to see'. Then we would whisper 'night night, love you' I miss that little voice whispering to me. I just wish I could hear it...I will never be the same person EVER again. I can't even look at his meds in the evening, night because it makes me cry to see his name. I miss him so much. Kayden knows I love him & he knows I would have done anything for him. God knows it as well. I just wish I had longer with him. I've been to the cemetery everyday to see him & will continue that for awhile....I know eventually there will come a time I can't go everyday because I've still got 3 other children who need me. I know & Kayden knows I have to take care of them as well. I sometimes feel like people look at me weird because I don't cry all the time...I KNOW I can't sit around and cry all day everyday..of course I can make myself, but I also ask myself, would Kayden want that? And my answer is no he would not. I also know that Kayden will ALWAYS be with me any and everywhere I go. Because no one can ever take my memories from me, he will always be in my heart and in my mind. And even at night if I think really hard and concentrate I can heart that sweet little precious voice telling me 'night night, love you'. My heart just aches, my arms ache to hold him as well. My sweet boy is flying high with the other little Angels tonight and I hope he'll soon visit me in my dreams <3 or even come kiss me on the cheek one night <3 I love you Kayden James <3 12.21.07-7.14.11

Friday, July 15, 2011

Broken & I'm never gunna heal..

Sadly I have to say my sweet little baby Kayden James lost his life in the early hours of Thursday morning. He fought a tough battle with a CHD. He passed away at the young age of 3 1/2.  For those who knew Kayden they knew how much he enjoyed his self! He always wanted to see his own pictures lol he loved his sister & his brothers. Right now I'm broken my heart is shattered and if I go crazy I guess that'll be okay as well..I never wanted to see this day and I still wish i could wake up from this terrible nightmare...I do know though, that Kayden is no longer in pain, he is no longer hurting..I know I would ask him sometimes if anything hurt, I can see him just shake his head yes, and when I'd say where?, he would take his little finger and point to his heart =[...I miss him more than words could ever say. I do know I was blessed to have 3 years with my sweet Angel & I'm so thankful he had amazing doctors who looked out for him and who will remember him as well. Kayden impacted many many MANY lives and those lives will be changed always! There is nothing I wouldn't do for my son & I know he had a good life <3 I know now that I'll now not be afraid to pass either, because that is when I'll see my Kayden again <3 until then I'll see him in my dreams <3 I love you so much Kayden James ALWAYS AND FOREVER I WILL STAND BY YOU! I hope everyone remembers my sweet Angel <3 Fly High baby boy <3 12/21/07-7/14/11

Tuesday, July 12, 2011

Everything's gunna be alright...

This morning I was feeling a little rough when my mom told me Kayden's temp was 103 & that his kidney function was down from yesterday & his sodium was high so the ICU docs wanted to go down on the milrinone. As the day went on I couldn't help but keep my little man on my mind, as he always is anyways. But I just couldn't really get much done until about 5 lol! Anyways I talked to my mom throughout the day seeing how he was and his temp was normal & the kidney doctor just said to increase his fluids & cardiology said not to go down on the milrinone. & they never did drop him down on the list thankfully. I don't really know what happened this evening but I just felt a big relief like something was lifted off of me & I just feel everything will be okay soon. My Kayden is a little warrior he has fought since before he was even born & he has overcome so many obstacles & I know he's going to hang in there until he gets his Angel heart! And I know I won't stop fighting for him until MY heart stops beating! God has a plan for us all, & I know he has a very special plan for Kayden, I just don't think he would have put Kayden through so much in his last 3 years to just take him away from his home here on Earth. He has had his hand on Kayden for 3 1/2 years now & got him through his close calls like in Boston & like the other day when his heart rate got up to 215 because his potassium was high. He brought that little heart rate back on down and it has finally gotten into the 140s-150s. God is greater than ANY CHD & I know he will help Kayden beat this!! All I can do is ask you all to continue the prayers & keep him on your prayer lists at church, so God HEARS his name on a daily basis and he knows just how many people want Kayden to make it through this!! Prayers work miracles & Kayden is one of those miracles I believe in them because of him! He has proven doctors wrong & I am TRULY BLESSED to have this boy in my life!! Please continue to pray for little man while he fights his toughest battle for his life right now <3

Friday, July 8, 2011

No words..

I have no words for how I feel. Well actually yes I do I just can't explain it. I don't know what to do anymore..Ever since extubation and after the nap he took, Kayden has been moving uncontrollably, he will not talk and he doesn't recognize anyone. He doesn't respond to his name, he doesn't know what is going on at ALL!!! He improved a little where he actually focused for a little bit on tv these evening and this morning he wasn't doing that. But by the time they gave him meds to help him rest, he was back to moving around and actually like 'trying' to sit up but he is so uncontrollable that we are afraid he's going to fall out of the bed. They have no idea what it is. He had a CT scan last night and nothing showed up on that. They got some blood & are planning to do an MRI in the morning so they will have to reintubate him. I just don't know what is going on. They said they've seen this behavior when someone has a stroke. But the CT didn't show signs of a stroke so maybe the MRI will tell more...I just don't know what it could be. But the stroke scenario sounds a little more realistic than anything else they have said...I have prayed and prayed & prayed when I can't do it anymore. And I'm waiting for God to answer those prayers and for Kayden to be okay and for Kayden to get his new heart. And when things get bad after praying for them to get better how can I not be frustrated? God doesn't give us more than we can handle? Why is he testing me so much right now? I don't know what to do I've handed this all over to him but I can't let go myself I can not. I will not let go because I'm his mother and I will do whatever I can even if it is analyzing him and trying to rack my brain for answers..like I have been doing all day even if my theories sound stupid i still ask. I know how Kayden is and  I know to always expect the unexpected with him which I have told doctors over and OVER again.. I just don't know when they will start listening to me. They have said since day 1 that Kayden is a very unique case and they haven't seen anyone like him & I'm starting to believe them more and more now.
Please just continue to pray for Kayden and pray this gets resolved soon & he gets re activated on the transplant list <3

Sunday, July 3, 2011

I've always been an impatient person...

This is so not good for me..I hate waiting. I always have and always will. It's the worst part of it right now..the waiting..the not knowing..I get told so often that they don't know how I do what I do with 3 other kids at home..I honestly don't have a choice. I mean I guess I do but I won't have it as a choice. My kids are my life now & if one is sick or hurting I will do what I can to make it better but also be sure the others are okay as well. I don't know how I do it. I kind of have that 'it comes natural' to me feeling. I guess because I've been doing it for 3 1/2 years now. Because when he was a baby I had to balance my time between seeing him in the nicu & Alexis at home. Then it was doctors or hospitals when he wasn't home. So I know Kayden needs me most right now but I also know my other kids need me as well.

I'm praying day and night that his special angel heart comes soon <3 I hope a family can find it in their hearts to give other children a second chance at life <3 This is so sad all of it is. I love kids and I would NEVER want anything to happen to anyone's child. And now here I am praying my little boy gets a heart and in order for that I know what has to happen...Does this make me horrible person? Or does is just make me a mom wanting their child to be okay? I keep going over that in my mind.