Where is my strength?

Today has been okay until I got a phone call this afternoon. Let me tell you how today went. First off, we got up this morning, Kayden was in a good mood he ate a little not a lot which is normal for him. Well I gave him his meds. About an hour later he throws up. So I was freakin out trying to be sure it wasn't his meds. Which it didn't look like it. So by noon I put Tavion down for his nap. Yesterday Kayden went to his GI doctor & cardiologist. To make that short. The GI doc wants to go up on his feeds & the cardiologist said he looked & sounded great & he needed a routine chest xray & blood work just to be sure nothing is going on...SO I took him for his xray & labs around 1 pm today. So, around 4:30 I get a call from his cardiologist, I was expected good news that everything looked fine blah blah. WELL, he said the chest xray didn't look great & it looked like the pleural effusion was coming back, not bad enough that he needs to be in the hospital thank God. But he told me to go up on his lasix to 3 times a day instead of twice. The lab results hadn't came back yet. So I'm praying that they come back good. I'm totally freaking out. I was NOT expecting this. I just don't know anymore...I know I can get through this, I KNOW I can. But the fact of the matter is I'm scared as shit & I feel like putting Kayden in a big bubble the rest of his life..Although I know I can't! I don't understand how I am suppose to stay positive though & think good things when this is the second time this effusion is coming up, & after surgery..I mean really? I thought he'd be good after surgery & wouldn't be in & out of the hospital. Here it is 6 weeks today since his surgery & he went in the hosiptal a few days after being home & we've been home from that time 2 weeks & the effusion is coming back! I mean really? This thing is probably going to continue coming back & I don't know what they can do about it unless they reverse the glenn & then I'm afraid his repair will be bad. And one thing leads to another...& he'll need a transplant because if this repair didn't work..Then the only other option was transplant. So I'm scared to death. I don't know how to stay positive anymore. I know I shouldn't have expected good news but since he sounded excellent yesterday of course I was expecting great news...Well tonight he was eating & threw up again. So I'm freaking out. I'm checking his oxygen & temp every so often to watch both of those. Last time his oxygen dropped into the low 80s & temp was 102-103...So I'm watching him closely. I know his cardiologist is going to keep an eye on this & he knows if I see one thing out of wack I'll call them & take him to the ER. I may be a little paranoid but I know Kayden. Kayden works this way...whatever is least likely to happen, will happen to him. So I guess only time will tell what will happen. Please keep Kayden in your prayers that his meds kick the fluid out of him. 

God, please watch over my son & keep him safe & healthy <3

Broken

Easter was amazing yesterday. I was so happy to see Kayden excited about something for a change!! Also I got him to go outside & find Easter eggs even if I was pulling him in his wagon. Anyways, today started out great I was cleaning & playing with my little ones. But then I got on facebook to check on the CHDers I follow. Sadly I came to one I've been following for awhile and I saw that she earned her Angel wings last night!! I literally started crying & I felt my heart fall to the floor. This baby was only 4 months old, her birthday is just 2 days after Kaydens & a week after Isaiah's. I didn't know what to say. I could never say I know how her family feels because I don't know. I only know the fear of not knowing what was coming. I know the pain they felt while their baby was fighting. I just know it hits home when I hear this. Because it was only 6 short weeks ago that I wasn't sure whether or not I'd have Kayden by the end of the week. It was only 6 weeks ago when his perfect little chest got cut open to fix his broken heart. And still to this moment he is fighting because his surgery repaired his valve from severe to moderate. He will still go through at least 1 more OHS. I also saw where 3 other children fighitng CHD got their Angel wings. So needless today in the CHD community it is a sad, sad, sad day. I still feel the pain that I felt earlier when I found all this out. I honestly don't know how to shake this feeling or if I can anytime soon. It just makes me want to fight harder for our children who are fighting for their life! I'll continue to do what I can and more so one day Kayden's story will help another family & I pray that Kayden helps another child one day!! My thoughts & prayers are with all of these as we are all family in the CHD community!!

 

If you could turn back time...

As I was making a video the other night for Kayden, the first one since his surgery, I was going through some old pictures of him & I started to cry. I felt bad for crying because I miss who he use to be. I miss him being a baby & I miss when it was just Alexis & Kayden. I miss the days during the summer when he'd go outside and play all day. I miss them so much that it hurts my heart & I can feel the pain stabbing me like knives. And I asked myself, does this make me a bad person? I think it does. I feel bad that I miss all of that. I shouldn't miss those days & I definitely shouldn't miss just having 2 kids because I love Tavion & Isaiah just as much as Kayden & Alexis. 

But then I look at everything that has happened since those days and I think I would have done a lot of things differently when he was playing outside, and when he was a baby, etc. I would have spent a little extra time with him, even if I really didn't have time. I would have taken him & Alexis more places just the 3 of us so they could have more time. I would have played outside more with them & not just watched. I feel like I've missed more than I should have. I know though that I can't go back. I can't rewind and stay in that time zone just to spend more time with him. I guess that is why now, I've changed a lot. I spend more time with all 4 of them. I don't let them too far away from me, which could be a little too over protective but Kayden has been through so much I do admit I'm VERY protective over all of my children now!! I just hate feeling bad and hurting like this & I don't know how to make those thoughts & feelings go away. Everytime he says he won't go outside or when he does and he won't play it makes me so sad & I can't help but think about those fun days & nights that he'd be outside & I couldn't get him inside. If only I knew then what was coming I would have let him stay out as long as he wanted!! I would have probably let him get by with more than I did haha!! 

In other words though, as much as I'd love to turn back time & go back to Kayden being little, I would only change certain things. But then again I may not because the things that we've done & been through has made us who we are today. And I think after his surgery & everything I can feel the bond me and Kayden have. I've always felt it with him but it is so much stronger. When he was in surgery & they told us the update of him being on the bypass, I remember closing my eyes, attempting to hold back tears I took a deep breath & opened my eyes & looked to the sky. I felt Kayden with me. He may have been in the OR but I could just feel him holding my hand still. & when he was paralyzed & sedated. When I'd talk to him I knew he could hear every word I said. Kayden has this thing about him. You always know when he is near, his presence is so strong & even him just lying there not moving you could feel him there. Even the first day we were in Boston, when we took a break to eat lunch from meeting everyone. Kayden, me & mom were the ones eating down in the cafeteria & every day I'd go eat there. I could just feel & see him right where we sat that day. His presence is so strong you can feel him anywhere he has been. Kayden is going to be someone someday, I just have that feeling about him. He is special in every way possible. 

Princess Parties, Puppies & Bows...

So my nieces birthday was April 10 and as you know Kayden was in the hospital last weekend, so today we celebrated her 5th birthday!! She had such a good day her cake was freaking awesome! It was a princess cake of course lol & it was beautiful I looved it & it tasted amazing hahaha! I can't believe her & Alexis are 5 years old, it seems like yesterday they were babies!! Where does the time go? Craziness thats all I have to say haha!!
Anyways, today is exactly 1 month since Kayden has his surgery. That proves right there how fast time truly does go. Just 1 month ago I wasn't sure if I'd have my baby boy with me anymore!! I cried like a baby as soon as I had to walk away, I couldn't talk to anyone for a little bit until I calmed down & still the tears would randomly come and go all that day!! I have been blessed with the most amazing children in the world & I couldn't be happier with my life!! March 17, 2011 has changed my life more than anything besides my babies. I have reflected back at my life & at the things around me & I know now what I want & what is important to me!!  Life is precious, & people should never take it for granted because I know I did and I won't now!! I'm thankful for every single day I have to be alive & have with my little ones!!

Anyways, we got 3 new puppies the other day lol! Well technically we have 2 & my brother in law has his puppy staying at our house lol!! We have 2 girls & a boy, their names are Prissy, Toodles & Buddy! LOL, Kayden had something to do with Toodles, because he LOVES Mickey Mouse so you know how they go 'OH TOOODLES' he says it all the time <3!! Prissy would be the one who follows Alexis everywhere lol!! They were kind of made for each other I think lol both of them are little prissy pants haha!! I'll have pics soon for you =]!!

Also I wanted everyone to know also, if you have a little girl or know anyone with a little girl who looves bows. If you have facebook please like my boutique!! It's myself, my friend Amanda & her mom who are the owners. We just started it up so not too many things have been put up! Please tell everyone about our business =]
http://www.facebook.com/pages/Peek-a-Boo-Boutique/154129271316642

Change is never easy...

Lately I've been reflecting on myself & things I've done. I've really came to the conclusion that I do not and will never regret anything I've done, although there are things I wish I'd made better decisions. But you can't change the past & I hate it when I see people who still remember and judge me from my 'past'. EVERYONE has a past, one that we are proud of or not so proud of. Mine I'm okay with some of it. But you know I've came to the biggest conclusion which is I wouldn't be who I am today if it weren't for the choices I have made. We live & we learn. Sometimes we may not learn the first time around but the second or third you definitely will. I've been thinking so much also about who I've become & who I'm becoming. I no longer give a crap what you or anyone thinks of me. It doesn't matter, I've never been the type to really care what people think a bout me but now I do think it's more obvious. If you can't accept me for who I AM, then you don't deserve me in your life. I've seen a lot just in the past year that really makes everything I've ever seen or been through seem like it's nothing. I've witnessed a mother's nightmare as well as witnessing miracles. My life has never been the same since I found out Kayden had a heart defect. And since he was diagnosed with Congestive Heart Failure my life has changed forever, I'm scared daily for things. I don't know what the future holds for him. I don't know if he'll ever grow up to be the man I want him to be or if he'll ever have his own family. I just have to pray and think positive. Kayden's heart has been mended for now but he is still on edge. I guess you could say we are kind of out of the woods now instead of getting deeper in. I don't know how to stress to people, but don't judge someone until you've  got to know them & know about what they've been through. I didn't have the easiest life growing up although my mom ALWAYS was sure we had what we needed. I hope to have a better life for my kids and I think that is why I'm in school is for my KIDS!! I'm anxious to get back to school in May but then again I'm not because I'll have to leave Kayden =[. I also have to start paying on my loans...which will SUCK big time lol but hopefully in the long run it'll be worth it!! The point of this blog is to prove that change it NEVER easy unless you let it be!! I've let most of my change be easy!! Anyways, Kayden's hospital stay is over & we're home & he's doing great!! Hopefully we'll be out of the hospital awhile this time!! Goodnight <3

Life Ain't Always Beautiful

Well Kayden made it oh about 5 days out of the hospital and had to go back. On Monday night he was very lethargic & he wasn't eating or drinking much, his oxygen dropped into the 80s & his temp got to 102.9 so needless to say I called the cardiologist on call at his office & took him to the ER. They were expecting him so they got him back ASAP! They got him connected to the monitor & on some oxygen, got blood & put an IV in & done an xray, ekg & echo. Come to find out he had a pleural effusion which is a pocket of fluid beside his lungs. It was on the left side & it was pretty big once they done an ultrasound on his lungs on Tuesday. So they drained it off & got 200 ml's off of him. They decided to check it in the morning which would be Wednesday. They did that and it was there again but not that big so it took the doctors all day to let me know what their plans were. By this time I had called Boston to talk to his cardiologist there who works with Kaydens surgeon. They told me it is in fact from the Glenn procedure they did & that they needed to put the chest tube back in & let it drain a few days. So I told the intensivist doctor what Dr.Marx(card. in Boston) had said, his response to me was 'He's not here & I am and he can't say what should be done without seeing it. I came in earlier to talk to you but you weren't here. We are going to wait 24 hours and see how it looks in the morning & go from there. It is possible we'll need to put a tube in but we are going to try to avoid that if we can because it won't make him happy. But if we do have to go back in and drain anything, then we are going to leave the tube in'. NOW let me remind you this...I NEVER LEAVE KAYDEN BY HIS SELF UNLESS SOMEONE IS THERE WITH HIM!! NEVER. I left one time Wednesday & that was to go home & take a shower & go get something to eat because I get sick of hospital food. My mom was there the whole time, from the time I left until I came back & she did NOT see this man until he came in when I got back and told the nurse I had spoke with Dr.Marx...so she said she'd go get the doctor & let me talk to him. But yea he really pissed me off I mean seriously dude, Boston is 100 times BETTER than this hospital and you're telling me this cardiologist who deals with this stuff EVERY DAY doesn't know what he's talking about. Oh lord if I could have gotten away with it I would have told him off...but yea you know how that goes....Anyways today, they did another ultrasound & the fluid is still there, they say its the same if not smaller so they were gunna go ahead and go in again, drain it & leave the tube (LIKE THE CARD IN BOSTON SAID)....To me the pocket of fluid looked bigger or like the first time..Let me tell you, when they went in fluid came out onto his bed they drained out about 250-560 ml's with syringes & on the bed was about 50 ml's so that makes 300 ml's JUST TODAY!! BUT YET IT WAS SMALLER?? Sounds to me like ya'll are douches!! But they left the chest tube in today & within a couple hours he had drained 100 ml's already. I have no idea how long this will be in but hopefully this effusion doesn't come back!! This kid just can't get a break though it seems =[ I hate it all but I know it's for the best!! I can't help but feel frustrated and think about how unfair this is to him..He should be outside playing and running around like a child!! It's not fair he has to be in a hospital & be in ICU every hospitalization because he is a cardiac patient....It's just not fair that he'll NEVER be a normal child. He'll have to limit his activity levels when he is older & he'll probably be on medications the rest of his life!! I love my heart baby more than life itself & I wouldn't change him for the world & in his own way he is NORMAL. I just hope people NEVER judge him for what is wrong with him or for what he looks like I hope they judge him for who HE IS!!  His heart disease does NOT define him & I hope he always remembers this!!! I am so thankful though that I've got an excellent support system and a great mom who is at the hospital right now so I could come home & see Alexis & get some clothes. Also I'm thankful for a wonderful sister who is keeping my two little baby boys =[ I miss them!!

Home is where the heart is

We made it home. Instead of leaving Thursday we decided to leave Boston on Wednesday night lol! Mostly because back at the hotel, Kayden kept sayin 'i wanna go home' and HOW in the world could I turn him down & say no!! He is just so precious & I can't tell him no! It breaks my heart to know I'll have to correct him at some point. He has been through so much that I just hate to tell him no, or tell him to stop doing something. Because I will know in my heart that not long ago he wouldn't do whatever it is i'd be telling him to stop doing!! I have been doing a lot of thinking the past few weeks! I've realized so much what is really important and what really isn't so important!! I've realized that all the problems I thought were so big and bad that they are NOTHING compared to what I've gone through & what people have gone through. I saw babies fighting for there life. Because mostly in the CICU I saw babies and only a few toddlers & 1 teenager!! The CICU is a scary place to be. You see little ones connected to wires, on breathing machines, getting IV's, having 3 needles in them at a time. And I think the worst of it was the ones not moving. Knowing they had probably came out of surgery a day or so before & they were still sedated & paralyzed. That was the worst for me seeing Kayden like that. It broke my heart because I talked to him & I was hoping he'd say something back..but in reality I knew he would not answer me. But yet I was hoping to hear that cute little voice of his!! It all seems so unreal but yet it brings you back to reality real quick.
I was sitting there that night and beside us a little baby passed away and the mother you could hear crying and she couldn't speak good english so it was just so heartbreaking!! I just wanted to ball my eyes out because it could have very well been Kayden. And while I was sitting there holding his hand telling him to stay strong & keep fighting, that heart mommy was having to walk out of the CICU facing all of our worst nightmare!! And next year when I am celebrating Kayden, she will be grieving over the loss of her child!! I just couldn't help and still can't help but think about right this second someone will be told there child will be born with a heart defect. And when we walked out of the hospital, some other family was walking in. It's all so sad if you realize that. There are just SO many children living with a CHD, there are so many adults living with heart defects, and more and more are being born each day!! Families and peoples lives are being changed forever!! I can not help but hold all my other 3 children much tighter and thank God EVERY second for all 4 of my kids! I will always continue to tell Kayden's story to other people & I will FIGHT for all of the CHD survivors, warriors and all of our CHD Angels until awareness is spread throughout the world! I will continue to speak for those who can not speak any longer or for those who can not speak yet!! I will forever be a part of a community bigger than myself! And that is the CHD community, we are ALL family connected by our children. We are a family who understand each others silence or understand each others feelings even though we have never met once...we do UNDERSTAND each other!! I like to think that one day, Kayden's story will be of help to another family!