5 steps forward & 10 steps back

It seems like once Kayden gets better and has made so much progress, something happens that knocks him down again & we have to start all over...

Before he got sick this time, he was running around the house playing with all the other kids & he was eating very well. Just the Tuesday before he got sick we had went to Applebee's for Alexis' birthday dinner & Kayden ate like a grown man lol. Then he got sick and was in the hospital 10 days. Now he's still on oxygen & the NG feedings. He seems to only need the oxygen at night still so that's a good thing at least it's not constant and the feedings are for 12 hours so i usually run them from 8pm until 8am...He is feeling much better today! He actually smacked Tavion a couple times LOL no it's not funny because Tavy hates it but that's how I know Kayden feels better because he'll beat up on Tavion! He's also eating more well snacking I guess really. He ate a little dinner last night not much but a couple bites. Today he has been on a popcorn kick and ate probably a total of a whole bag by his self lol!! Well to make Kayden more comfortable & because I don't trust him & Tavion in a room with oxygen running and Kayden hooked to a few things, we have moved his bed into out living room. I really don't even care anymore what people think or say, for now until he is better I've got to make him comfortable & know he is safe. Since we've moved it though he has slept so much better <3 and is more happier!! He missed him own bed =[ lol!! I'm very sad though because through all of this, he has lost all of his hair in the back of his head and the sides. The only hair he has anymore is on top =[!! I don't know what has happened. He did go to the cardiologist today & I asked him about it, he said it could be from laying around so much but he said not all of it, he thinks it may be a vitamin deficiency or he also said when people are chronically ill they lose their hair sometimes..So he said I could try to give him a vitamin everyday & see if it helps him. He was very happy with the way he looked, he looks much better than what he did in the hospital & he said his lungs sounded very good! He didn't hear any arrhythmias so needless to say he's definitely gotten much better than he was a week ago! Now, Boston called me yesterday and said his surgery has been moved up a day which makes it May 11. I mean really 1 freaking day? WOW. So anyways, Kayden's cardiologist called them today and talked to Dr. Marx (card in Boston) and told him what has been going on and was telling him how worried he is about Kayden, so Dr. Marx is going to talk to Dr. Del Nido & go over the schedules with him and see if they can get Kayden's surgery in at the end of March or sometime in April. So keep your fingers crossed that this happens!! Also I want to thank you all for the prayers you are sending his way, they are much appreciated & very much needed!! My family & I certainly appreciate all the love we're getting for our little warrior! Kayden has a lot of determination & stubbornness in him so he'll keep fighting until he makes it through this battle <3 i love my little man

Kayden February 24, 2011

Kayden February 25, 2011

Every Heart Has A Story - How CHD has affected relationships...

When Life Hands You A Broken Heart

Here goes nothing:

Starting with my relationship with Kayden & my other kids father Philip. We broke up shortly after Kayden was born thanks to a lot of drama. We did end up back together again for a few months & the drama and us being off and on became pretty much a lifestyle with us until finally now I think I've given up. Not only for my own sanity but also for my kids as well. I think he knows that we can't keep going on like we were for our kids sake. Although I think we've became closer since Kayden's heart has gotten worse, it's really opened both our eyes I believe. We don't seem to fight as much like we did before, and I think we both are finally on the same page with our little boy. If not then I think we are close to being on the same page. He does what he can to help me, which most important is he is there for Kayden! That means the most to me! 

I think also me & my mom have gotten closer through all of this. I really don't know where I would be without her. My mom went through similar things when I was a baby. I was born with a diaphragmatic hernia & I had surgery at about 2 hours old. She was told I probably wouldn't survive. Obviously I made it, I was too stubborn to give up my fight & I have a wonderful mom who didn't give up either. So, when the doctors told me Kayden may not make it through surgery & he is barely pumping enough blood to survive, & every time his cardiologist reminds me that there is a chance of death & how hard it would be to resuscitate him, I feel the pain my mom felt when she was told that about me. Growing up I know I didn't listen to my mom & then I'm sure I thought I knew it all, I was untouchable as all kids are right?! Well now I see that she just wanted what was best for me. My mom has been there for Kayden & me since the day we found out I was pregnant with him. She was there with me when they confirmed his CHD & his cleft lip/palate. She has been there for Kayden since day 1, when I couldn't get to the NICU then my mom would be there & sometimes I'd let her go because she loves that little boy & she wants to be with him as much as I do!! My mom and I have shared a lot of emotional times through this journey with Kayden, and I thank him and his broken heart for bringing my to realize how much my mom really loved/loves me!! 

My relationship with my other kids has changed as well. I know Alexis is only 5 and Tavion isn't even 2 yet & Isaiah hell he isn't even 3 months haha!! But sadly they've had to go without me & there brother for weeks at a time especially Alexis & Tavion. Alexis recently while Kayden has been in the hospital called me a few times crying I'd ask her what is the matter and her words threw her tears 'I miss you'. That is heartbreaking, I wanted to cry and just reach out and give her a big ole hug!! I've told her soon the doctors will fix Kayden's heart and we'll all be okay. I know I can't promise he'll be okay but I sure as hell can hope & pray that God doesn't take this little boy away from us after he's changed our lives for the better!! I think I've also learned to cherish every single moment I get with all of my children, I've learned to hug them a little tighter and a little longer. I've learned to not lose my patients so easily like I use to, I've learned that they have feelings too & they need just as much of my attention as Kayden does. My daughter and my other boys have had to go through this too & I think people may forget the siblings of a CHD child because they aren't the ones with the scar. But really I think they have the scar as well, they have the scar of missing mommy & daddy & missing brother or sister!! They've got to go without parents & their routines get disrupted so our CHDers can get fixed!! So I've made a point now to try and take days out just for Alexis, Tavion & Isaiah, because they need me as much as I need them!!

So you see, when life hands us a broken heart, it hands us more than just one! It affects a whole family & it's also affected strangers who I don't even know. My son has affected nurses, doctors as well as friends or friends. He's had people praying for him that I don't even know. CHD's are a serious birth defect that I think people forget about. Mostly probably because the kids or adults look just like normal human beings!! When really under their clothes they may have a scar that reminds them they have been mended because they were born with a broken heart! CHD has changed my relationship with myself. I have learned to respect others more & I've changed my relationship with God. I never have been a huge religious person but I've opened my heart up & I've let him in my life & I'm letting him guide me through. I've said recently I feel like someone is having to push me through all of this now & that is because I believe God is holding my hand walking me through this journey. He's helping my family & myself get through all of this & I do believe he will have his hand on Kayden's heart the whole time the surgeons are doing their job to fix my child. & I know he will not take my little boy after changing all of our lives for the better!! I've learned also that sometimes we must fall apart in order to pull ourselves back together again, without falling apart a few times I wouldn't have made it this far. I've learned to love stronger & I've learned the strength a child can bring us. CHD's are not going anywhere they will continue to affect thousands of families. & When one heart is broken remember behind that one, there are a lot of other hearts breaking as well. And our relationships will continue to change so  I should probably say this blog is to be continued...

Hospitals have become a second home...

Well Kayden's been in the hospital since Sunday afternoon. He had been sick like the other kids, and on Sunday he was just running a fever, sleeping, coughing, weezing & what got me was his feet were swollen!! So once I saw that he was def going to the ER. It's bad that I already knew he would be put in there before I left the house. Well he was dehydrated so he was on fluids for a couple days. He gained a few pounds of fluid which isn't good since he is in heart failure. IV fluids are never good for him =[...But he started drinking which is great so now he is peeing good & getting all the fluid out of him!! His legs are still swollen some but not as bad & his face isn't puffy thank goodness!! I hate seeing my lil man sick =[..The other day he was making more noise in his lungs not good because he had some fluid on them & he had started weezing again. So I got really scared!! I never like it when i see that 'look' on his cardiologists face. And he had the 'look' like he was worried!! But today me & his nurse had him get up and walk around twice & she said he sounded much better so that is awesome!! He got so angry haha but it was good for him!! They did put an NG tube back in =[ but it's for his own good...His cough is so nasty though I hate it =[ I really wish he'd get better soon!!  But like his card said anything he gets is going to knock him down & this sure knocked him for a big loop =[!! We just have to support him through it & wait it out. I am concerned because he's on oxygen & this is the first time he has needed a lot of it. He's been on it since I took him into the ER & the other night his oxygen was down in the 80s so they had to keep turning it up!! They have tried weening him off of it a few times & everytime they go down they have to turn it right back up =[!! So he may end up coming home on oxygen now! So prayers are still needed for my little man <3

Now I talked to Boston the other day & first they said his surgery would be in April. Well they called me back and said something was wrong with the scheduling. SO meaning now the cath & MRI will be on May 10, he'll stay over night then his surgery will be the following day which is May 12..his cardiologist isn't happy with them pushing it back to May & neither am I. I was so looking forward to April & knew it was almost the end of February..well kind of so I didn't have much longer to wait...but now I've got to wait until May & it's going to be a lot harder on me. Not only because I'm going to not only be worrying about Kayden, but I'll be VERY upset because I won't be with Tavion on his second birthday which is May 13 =[ also we'll probably have to leave to go to Boston on Mother's Day!! May will be hard & I dread it now!! I want it to hurry so my lil man will be better but I really don't know how to deal without my kids that long!! This will officially be the hardest time of my life!! Seems like I've had a lot of hard times, which I have but this will probably be the most difficult as of now!! And I try to think of someone has it worse than I do. But this is my reality & it's BAD so for anyone who has it worse than me, I feel for them because this isn't easy & I don't want to imagine how worse it COULD get & how close I am to that possibility coming my reality & you already know without me saying it, so I won't say it =[!!! Anyways, hopefully little man will be well soon!! PLEASE PRAY FOR KAYDEN <3 He's a CHD WARRIOR & he's fighting everyday for the day to become a CHD SURVIVOR!!!

Spring HURRY up!!

It's been kind of crazy lately!! My birthday was okay, not the best but oh well. I'm 23 so why should it be such a big deal anymore hah my kids matter & that's all!! Well me & my mom did make my 'Twilight' themed bday cake, it was more or less a Breaking Dawn cake minus the top decor haha!! It may not been a total success but it sure was good =]!! I've finally gotten myself registered & my financial aid set up for next term! I'm so very excited to get back to school, but also not sure how next term will end up since I'll be in Boston some with Kayden!! I just hope I don't miss too many classes to where I get dropped out of all them =/ but Kayden will come first always!!

LOL it was a red velvet cake, of course you know I loove my vampires =]

Anyways, My baby girl turned 5 February 9 =[..I can't believe she's already 5 years old it makes me so sad!! Me & mom took her & the kids to Applebee's for her birthday dinner. They enjoyed it except she was starting to get sick so she was def ready to go once she finished eating. She had a good birthday though & her party is on Saturday, we'll have her Hannah Montana cupcake cake she wants & open her presents. I got her a CD player & 2 CD's a Hannah Montana & a Taylor Swift. Yes she LOVES Taylor Swift. That's all that can stay in my car when she rides in it haha!! I wouldn't have it any other way I love when Lexi sings along to the music!! Her favorites are Love Story, Picture to Burn, & Mean!  I also got her a few new outfits (Hannah Montana) & some headbands she LOVES them! Oh and I found a cute little change purse HAHA I know weird right? But it's Hannah Montana. If you haven't noticed that's what she's into now!! Not much Dora anymore =[ so that tells me she is growing up. But tonight she made me smile by saying 'I don't wanna grow up, I wanna stay 5' =]!!

Alexis Sky on her 5th Birthday =] wearing her new outfit & boots & headband lol

Well everyone around here has been sick =/ Alexis had a fever Tuesday night & Wednesday morning I gave her medicine & she went to school. I tried to get her to stay home but she was about to cry, she was fine when i got her from school & had no fever until Wednesday night at bedtime so I told her nooo school tomorrow which was today obviously. So she was okay with that. She has been pretty much fine all day playing some but yet laying around a lot. then tonight her fever is back up to 101.5 so I'm taking her to the doctor tomorrow so no school again. Lyndsee's better she's hardly coughing but her nose is getting stuffy now lol!! Tavion I think sounds worse than them all, his cough is terrible & his poor little nose I can't get it clean as soon as I wipe it, it runs more lolol!! And now he's starting to run a little fever & he threw up from coughing so much so I believe he'll be taking a trip to the doctor as well tomorrow!! For once though they all sound worse than Kayden!! Kayden is just now starting to get it I think he's been coughing a lot today and as the day has went on it's got worse but still not REALLY bad! So I'm def keeping my eye on him, we all know he doesn't need to get a fever & he really doesn't need this cough. & Now I haven't felt well since yesterday evening so I've been taking medicine & hopefully I'll feel better in a couple days & this cough & runny nose go away!! The baby & my mom are the only ones well LOL!! So yes, I want Spring to HURRY UP and hopefully everyone will be better soon <3

Life is a roller coaster

It really is, so many twists & turns, and like a bumpy road there are plenty of bumps!! Some days I feel like my world is crashing down around me. I felt on edge the other day but I pulled myself together, which I'm proud of that it's hard for me to do that sometimes. Anyways, Kayden's been doing great lately, he's up running & playing. He's acting like a normal 3 year old, and it's hard for me to believe sometimes that he is sick & in just a few short months he'll be back in the hospital. So my birthday is in just 2 more days, I told my mom that I want to make a Twilight themed cake HAHA...so we are probably going to attempt that, whether it comes out right or not who knows! But hey we'll have fun trying!! I went to the school last week to do my financial aid for next term, it's going to be a tough one but I think I can get through it or at least I hope so. All that's left is my schedule & getting my classes!

Next week is also Alexis' birthday, I can't believe my baby girl will be 5 already. It's such a milestone in my eyes. I mean she is no longer a toddler or a baby she's a little girl. A little girl who will be in Kindergarten in the Fall..I just never imagined how this would make me feel. And I'm happy & excited but at the same time it's sad and depresses me because I know she's getting older and one day won't need me as much as she has. Well, she wants a Hannah Montana cake which I found one online that is awesome & today we went to Wal-Mart and she saw the cakes they have & she picked out the cupcake cake shaped like a guitar (it is Hannah Montana), so that will probably be what she gets & I think she wants to go to Chuck E Cheese for her party. Funny how that place never gets old (not even to me) lol! Next Tuesday I plan on taking her to Applebee's for her birthday dinner & Wednesday is her actual birthday lol.

And finally, today is officially the start of Heart month and Congenital Heart Defect Month..So please whatever it is you can do this month to raise awareness do it!!! February 4 is red day for Heart disease! So WEAR RED!!! Tell all your friends & family!!!! Also don't forget CHD week is February 7-14 I don't care if it's telling someone about Kayden's story, just spread awareness tell people what to look for!! This is just as important as Cancers or even supporting our military & families!! SUPPORT OUR CHILDREN WHO ARE FIGHTING FOR THEIR LIVES, AND SUPPORT ALL OF THE CHD ANGELS AND THEIR FAMILIES!!! Just because they may look & act normal doesn't mean nothing is wrong!!!
This is 1 face of a CHD..Yes, one minute he's fine acting silly (left), the next picture he's not..To the right he's in the hospital due to an ear infection, his heart cath got put off that day, he ended up in the hospital for a week because of an ear infection & temp..how many kids do you know that actually happens to? See how swollen his belly is from his liver being swollen, the NG tube was in from him not eating much and the IV in his arms..and this isn't even the worse that he's had, I try not to take pictures of those too much because the images are so vivid in my memory that it makes me sad to think about. I love my heart baby & I'll fight for him until MY heart stops beating!