I just need a sign...

God just send me a sign that everything is going to be okay!! I'm not feeling it right now. Everything is depending on me! I can't do it, I've got enough with Kayden, and everyone comes to me for answers to everything else!! I CAN NOT DO IT!! I don't think anyone is understanding how I'm feeling through this. I'm breaking, seriously. I always thought that God doesn't give us more than we can handle. Well I'm overflowing! I have literally been crying for the past half hour and it just keeps coming. I can't stop...I don't know what to do anymore!! I have no answers of what to do with the other kids. I know I've got to see them every week, not just for them but for me also. I know my mom has to work so we still have a place to live. BUT NO ONE IS WILLING TO HELP WATCH THEM SO THIS CAN HAPPEN!! & If they are then they want freaking money. I'm sorry but in this situation why should you want our money when we don't have it to give. It's taking all we have to pay for gas, house payment, electric bill, water bill, etc. Cable & internet has done got cut off because it's not a necessity for the kids. GOD I JUST WANT KAYDEN TO BE OKAY AND HOME. THAT IS ALL I ASK PLEASE JUST SEND HIM A PRECIOUS NEW HEART!! 

People tell me 'Misty you're so strong'...No I'm not I really don't feel it anymore. This is so hard and it's breaking me I need help bad and I don't know where to get it from....

& finally the wait begins...or continues...

Kayden was officially listed on the transplant list yesterday June 28, 2011. I feel at least we made a baby step forward. But really does the wait begin..or does in continue? Because if you think about it he has been waiting for 3.5 years. His little heart was giving in everyday and each day was 1 day closer to getting a new heart, just now I guess it's official. Well I've been an emotional wreck lately. I feel like crying constantly. Today I went to a family support group at the hospital & I needed it bad. I've never been to anything like that, but it felt good to get it out. I've just felt everything building up inside of me & it needed out. I still have so much built up I just cry because I don't know who to talk to. I feel so bad because Kayden should be out here playing & having fun..being a kid. He should be home with his family not in a hospital with wires and tubes connected to him & tape all over him. I feel like we are being cheated, me & my family & Kayden. My kids should have their brother home & they should have me.

I do know that God is watching over Kayden while I'm away & while I'm there. I also have learnt in the past 3 years you can never lose faith, once you do you will lose everything. That is whats helped me get through is never losing faith. I also know that things will get worse before they get better & I know and hate to admit it but little man has a long ways to go & he will definitely get worse before he gets better. I miss his little voice. They took his paralytic off but he can't get off the ventilator they are trying but when they do his oxygen drops. So I can't hear him talk. I miss his voice so much, I miss his little 'me mad' or 'mommy stop it' or 'get way me'. I just want to hear it, I want to hear the quiet whispers of 'love you, night night, see you mornin' from him before bed. I just wish he was hope and okay. It's so hard knowing peoples lives just go on & my little boy is fighting so hard & most are just so unaware of things like this. I think it's important for everyone to know about heart defects & once my baby gets better, that will be my mission is to make people aware of heart defects. And I'll do my best to help families out and be supportive to families like myself. Thank you everyone who has continued to pray for my bubba. He's strong & he's a fighter, he's hanging in there <3 Just keep praying, God is listening <3

Stressed beyond words....

I feel like I'm constantly walking around with tears in my eyes from being stressed & worried. I don't know how to do this. I worry about my kids when I'm not home & my mom has to work. I don't like the fact she'll have to take them out at 3:30am to get someone to watch them because we have no one who will be willing to come to our house that early. My mom is almost 60 years old. So yea i definitely will worry everyday about her & the kids. I wish she could take a family medical leave so she can have the kids when i'm at the hospital. It would be so much easier and less stressful. I'm trying to rack my brain for fundraising ideas. So I hope I can find someone to organize this. I'm worried Kayden won't get a heart. Everytime a doctor comes in they say how fragile he is...as if I didn't already know. One said 'I sure hope we get this baby a heart, he really needs one'. So God please help my son!! How can I make you hear me because sometimes I feel like you don't hear a word I say. I pray every single night for one more day with my baby & thanking God I have him. I feel so lost when all my kids aren't with me. I just want all them here! I  want to feel all their touch I want their kisses & I want to hear their voices everyday. And Kayden I haven't gotten to hear his voice in days because he is sedated & a breathing tube in. PLEASE God answer these prayers from everyone. I know you are hearing his name everyday and night <3

I can make it through the rain....

I feel like sitting on the floor, arms around my knees pulled to my chest & just SCREAMING. Would you hold it against me if i did that? Kayden has finished the transplant evaluation, here goes about the cath today that scared the hell out of me. Okay first off last night I had no sleep because I was so scared and worried because his cath in November from UVA his numbers were bad then. And there is one in his lungs they needed to be lower or else transplant wouldn't work & the only option was leave him on meds...and well we know where that would end up...So anyways he had the cath today & once they were done & i talked to the cardiologist. She said his pressures were all high & they were all surprised he has done so well not ventilated because his heart is barely doing anything. BUT the number they were wanting to be lower...WAS LOWER & he can have a transplant!! Now when they tried taking the breathing tube out, his oxygen dropped and his heart rate dropped into the 40s or 50s I can't remember what she said really, I was so caught up into the he will be able to have a transplant..So they had to re intubate him. Once he got upstairs and I saw him, his sats were still low but they suctioned and everything they could & gave meds and his oxygen went back up. So he's doing well for now. 

I did get to finally come home this evening and be with my other little loveys until Saturday =[. I miss them all so much. I'm scared Isaiah's is going to forget me =[.

OMG I still don't know how to really handle all of this. I feel so many things. My emotions are in overdrive..I feel happy, sad, mad, anxious, scared, etc,etc,etc!! I know it's normal to feel this way. But really..you could say hi & I will get tears in my eyes....that's bad! I am scared big time. I never knew it was possible to LOVE someone so much..I love Kayden so much and I'm scared to death. the thoughts of him having a transplant..taking his heart out of his body and putting a new one in..i just don't know, it scares me to death. I love my son so much and I do not want to lose him. I don't think I could go on without him or any of them. My kids are my life, they always have been and always will be. I'm so thankful for my friends and family who have been there for me through his journey..I thank all of the other CHD families who have supported us as well <3 I'm going to go finish my break down..so I can go back to Kayden Saturday facing this coming week stronger than I have been. I thank God for each night I have Kayden, I pray he keeps him safe through everyday and every night & I pray he will watch over him while he waits on & when he gets his new special heart <3 Miracles do happen..I've seen it..I live with a miracle everyday 

I am sure there was more I was going to say but I can't think straight right now =/

& the walls come crashing down

Kayden went to UVA yesterday & I'm cutting straight to the point. His echo results were TERRIBLE! His heart is worse than it was before surgery. Do you get how discouraging this is? It makes me feel like all those weeks in Boston were wasted! But really they were not. i know Boston did the best they could to try to fix his little big heart. I know that it helped for a little bit & I knew going into surgery it was so very possible he may not take to the surgery & may still need a transplant. Well here we go almost 3 months post op & he is in the PICU at UVA...he needs a transplant. First they have to get his other organs working before he gets one & his liver isn't too happy which we knew & his thyroid isn't either. The thyroid problem is probably coming from his medicine Amiodarone that was started after his surgery in March he is suppose to be on it for 6 months post op. So they have stopped that for now & are going to supplement his thyroid. They will also be getting antibodies from his thyroid to see if really it's his body attacking it..lets pray it's not!!!! They seem to be pushing to get him on the list so hopefully it won't be too long!!! My heart is broken. I love that kid more than life & my walls have came crashing down around me. I really wish things hadn't went this way, but I guess they didn't really see how bad his little heart was. I really don't know what to say anymore except for PRAY for him & when you don't think you can PRAY SOME MORE!! He needs it!! He needs as many prayers as he can get right now. Pray he gets on the list asap & pray for him to get his special heart ASAP & pray for the family who gives him the special heart as they will be going through a hard time as well!!

On a second note, I told Alexis today about what's going on. She understands to a point of what is going on. So I told her Kayden's heart is sick again & they have to find him a special heart. She asked me why his heart was sick again & I told her because it was sicker than his doctor's up north thought. So I had to explain they'll put a new heart in Kayden & it will make him better again. I'm going to try my best to get her up to UVA & see him at least once a week. He does good with her around & she misses him. Out of all 4 kids I do believe Alexis & Kayden will be the closest. She looks out for him & even being sick when Lynds or someone was mean to her, Kayden would knock them over or yell at them lol!! He's a great little & great BIG brother!! Isaiah loves him so much & I'm sure he's wondering what's going on not hearing my voice everyday. I miss my other kids so much. I'll be so happy to be together again. Please pray for Kayden & my other kids as they are going through a hard time as well without their brother or mommy <3

Just one of those nights...

Tonight's just one of those nights where everything is running through my head.

I still wonder why did all this have to happen to us. I am scared to death whether it shows or not. I know I put off like everything is okay & tell everyone, Kayden's going to be fine. But I don't know if everything will be okay. God knows I love my son & I would like to think he wouldn't take him from me, but he's done it before to other heart families. I'm scared to death. I live with death everyday STILL even after his surgery. He hasn't gotten much better. & in someways he is worse. HE HAS SLEPT BASICALLY ALL DAY TODAY!! He got out of bed at around 5:30 & then went back to bed at 10ish. I just don't know what to do but I know that's not normal. I know he needs his rest..But does he need that much? I want to spend as much time with him as I can & when he does this I can't, so I go lay in his bed with him & try to talk to him, but sometimes he just turns around lol. He likes to be alone & that makes me sad. He's 3 1/2 years old, he should be up running around getting into crap like Tavion lol!! So tonight as I'm about to go to bed, my whole world comes crashing down around me. I think about how things use to be, how things should be, how things are. I just know I love my babies so much it hurts me. I really can feel it sometimes & it makes me smile so much & brings so much joy that I can get tears in my eyes for no reason at all..Or is there a reason & those reasons are because I love them so much & don't want them to grow up & ever leave me. I want things like this forever I wish we could freeze time sometimes.

You're My Strength When I am Weak

So much has happened in the past few days in the CHD community. Sadly some is heartbreaking. While one family was getting a gift of life, another was still fighting. A little baby went back to Heaven today to be with our Lord. He has been fighting a very tough battle for the past 2 months. I haven't been able to get him or his family off of my mind all day. I wish I could do something to help but I know I can do absolutely nothing. Just pray. That's all I've been doing lately. I pray every night that God let's me keep my baby boy & lets him live to be 100. I pray for all of our CHD warriors who are fighting to live. & I pray for the families of Angels to find the strength to get through each day. I can't imagine & hope I never have to know how it feels to lose a child. I just know from following these kids it breaks my heart when I hear bad news. I can't help but cry, because like I've said all along. You just don't understand this long long hard road unless you've been on it. It's hard to be a mom to a sick child. You can never lose faith. If you lose faith, then you're pretty much screwed.

Anyways, so here is what's up with Kayden. Since last week he gained a pound and some ounces WOO!! That's great because he was losing which was BAD. So I'm so glad he gained and is now back to 31 lbs. Hopefully he will maintain around this weight. We still haven't heard anything from UVA or Boston & it's killing me..the waiting. His cardiologist sent 4 echos & his last week office note to them both. He has been feeling ok for a few days. Today he was a little off but still tried to keep smiling as much as he could. He tries so hard to feel good, even when he feels bad. I can't get enough of him though. I always find myself touching his feet or hands or face. I always hug him & kiss him. I always tell him how much I love him, & our new thing is muscles haha we do the 'flexing' thing & say 'look my muscle' 'me strong' LOL. He is so adorable <3 I love that little boy if hurts <3. He gives me the strength to get through my days. When I don't want to get out of bed I know I have to because Kayden needs his meds in the morning. Kayden needs to eat a good breakfast so he can grow to be a big strong boy.

Please tonight say a prayer for all of my CHD family <3 The CHD warriors & Angels <3
Go check out my website I'm working on www.helpheallittlehearts.weebly.com

Here is a gorgeous picture I want to share. One of my friends took it & it's like the Angels are looking down at us. You can see 2 baby faces in it. One where the sun is shining through & the other at the blue towards the top.