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

Tuesday, January 25, 2011

April showers bring May flowers...

Isn't that how it goes? lol...Well April we'll be having a lot of showers if you ask me..Boston called me today about scheduling Kayden's surgery & MRI it will be in April, they haven't done the schedule yet so I'm not positive on the date but as it looks it may be on April 11. Which is the day after my niece's birthday =[..But it's okay, I'll know a positive date in a week or two once they give me a call back. So now in February & March he has no appointments with anyone, so I had to call UVA today but they didn't return my call I'm hoping they will tomorrow. I'd be very surprised if they don't want to follow up before the surgery or him to follow up with his regular cardiologist. I still have to ask myself WHY..why did all this have to happen to us? It makes me beyond sad or depressed to think it's possible I only have 2 months left with my child. I know 'DON'T SAY OR THINK THAT' but face reality guys, it's possible in my world & a whole lot of other families world!! Just like the military, someone's loved one is over their fighting for their lives (as our kids do everyday), their loved ones have to worry about seeing them again right? NO you shouldn't think that but in reality once again that's how it is in their world!! I think ever since I talked to them this morning, I've held on to Kayden tighter every chance I've gotten...I gave him a bath tonight and when he got out I just cuddled up with him wrapped in his towel then once he was dressed I cuddled some more with him..& when I put him to bed I sat on the end and was having a little conversation with him lol it's adorable I love his voice and love hearing him talk!! So please keep him in your prayers and I'll continue to keep you updated!

Today, Isaiah went for his one month check up so I'll update you on him. He's a little chunk LOL..He is above average in height & weight, weighing in at 11 lbs 2 oz and measuring 22.5 inches! His head is average at 15 1/4 inches! He's growing fine and he got 1 shot today =[ poor thing, he didn't like it much. So he's been a little more fussy but it's okay, tomorrow will be better I'm sure!! Good night =]

Friday, January 21, 2011

Fight for what you believe in...

So the other day I decided to send an e-mail to Virginia's governor to get a proclamation for CHD Awareness week which by the way is February 7-14 if you didn't know. I'm happy to say that today in the mail I received a copy of the proclamation & I'm proud to say that Virginia will recognize February 7-14 as CHD Awareness week. So PLEASE be sure you do something during that week to tell someone something about CHDs even if it's posting a website on your blog or your Facebook or ANYTHING! And if you're a CHD mom or have been blessed to know someone with a special heart, be sure to tell someone your story!! Also be sure to wear red all week or one day even!! I will stand up and fight for all of the broken & mended little hearts around the world and for those who fought and are our angels now! There is a lot one can learn from these kids or adults with a special heart! They really give life a meaning! I love my little one with a special heart, Kayden <3
Anyways, I did talk with UVA the other day. They've decided to cancel Kayden's appointment with them which was suppose to be on January 26. They've been e-mailing Boston & getting them all of his information. They are also trying to work out an appointment where we can make one trip, to do the evaluation & do the surgery. Which seems reasonable, that way they don't have to send him home & we come back up for surgery. Gosh this all just seems so unreal anymore!! I mean the doctors have talked for the past few months about surgery & what should be done, and it's right here at us! I don't know how to feel anymore..I just know that I've got mixed feelings about everything. I know the surgery has to be done or else he won't live & I also know that there is a chance I may never have him again after the surgery. I just have to have faith & pray & know my son is strong enough to fight, that is what will give me the strength to get through this surgery!! He has been fighting and he will fight for his life and I will be there fighting with him I will NOT let go of him that easily!! So please continue to keep my little man in your prayers, and I'll keep the updates coming!!

Tuesday, January 18, 2011

Let's get this day going..

So I figured I'd blog a little this morning. So far today has started out good. Alexis & Lyndsee didn't give me too much trouble about getting up this morning, they got off to school fine. Then I decided I would make Kayden & Tavion biscuits & gravy & bacon. Kayden LOVES gravy and bacon LOL. Tavion ate good too, until he started sticking his hand in the gravy hah. That wasn't good, but oh well how could I get mad!! So my plans for today consist of CLEANING ewww...I guess that's what I'm doing is putting it off lol!! Anyways my new favorite song  for Kayden is Rascal Flatts 'I Won't Let Go'..It's such an amazing song & it's got a lot of meaning to the lyrics! Not a lot of songs can explain too much of how I feel about this situation and how I feel towards him or what we've been through but this song is just amazing! Below is the video, so take some time to stop my music player & listen to this amazing song!! Have a great day, I'm off to clean house!!





Sunday, January 16, 2011

My weight loss plan...

Since I am done having kids or at least until I'm married & that is only if my husband and I want another one..Anyways that's beside the point..Since I had Isaiah, I've done good so far and plan on losing ALL my weight from ALL 4 kids haha!! No I'm still not HUGE or really I'm not big I've got the baby fat still obviously he's only a month but still I've got preggers like right after another LOL...Well anyways, here goes! The last weight before I had him I was 168 lbs I had gained 10 lbs which leaves me at 158 before I got pregnant with him. Before I got pregnant with Alexis I was 115 lbs and that is now my goal weight but if I get to 120 I'll be throwing a party LOL..After I had Isaiah I was back down 156 lbs so that's my starting weight..Now today January 17 I'm 146 =] SO before my 6 week appointment the pounds are going bye bye THANK GOODNESS!! I'm slowly starting to feel better about myself and as for us females we need to feel good about ourselves and comfortable in our bodies!! So I'll be tracking my weight loss in my blog as well =]

Created by MyFitnessPal - Free Calorie Counter

My plan is too after my 6 week appointment and I'm cleared by my doctor I plan on running or walking ALOT and eating well, I don't eat too much as it is so I'm going with the slim fast thing..that helped me lose weight after I had Kayden & I was down to 125 after I had him and before I got preggers with Tavion lol!

Any suggestions leave them here..Or if you're losing weight as well then let me know how your progressing so we can be some support for each other =]



The days are going by slower & slower

Are you kidding me? I don't know how much slower these days could feel. Okay so maybe I can..but still, most people love the weekend. Anymore not me, I can't wait for Monday or any weekdays. I'm hoping I'll hear from Boston this week with an appointment to come up there. I'm so scared something is going to happen while we are waiting for all the doctors to see him and do something. It's kind of frustrating. I mean you tell me how serious this is and there is a chance of death before surgery also..I mean really, then why don't you hurry up and get things moving is what I wanna tell them all. I don't want to lose my child especially waiting for doctors to see him. From waking up in the morning and not hearing him to putting him to bed at night I worry about him. I just hope we get that phone call this week or even a letter in the mail with the appointment.

12 years ago tomorrow the best man I've ever known went to Heaven. My grandpa passed away January 17, 1999. I miss him dearly, he was such a great man & Kayden reminds me a lot of him. My grandpa didn't have an enemy, he didn't raise his voice..nothing. My grandma is still here 12 years later and she is almost 84 (I think), she misses him so much. I don't know how she's made it 12 years without him. They were married for a loong while I know it was definitely more than 50 years, that anniversary was way back when I was a little girl and can barely remember, but we had them an anniversary party for their 50th. LOL...My grandpa meant a lot to me & I miss him each and everyday, I wish he would have got to meet my kids. I know he's seen them from Heaven & I know he's looking over my baby boy. He's not going to let anything happen to my baby.

Friday, January 14, 2011

Wow, it's almost been 2 years...(PIC HEAVY)

It's almost been 2 years since Kayden's palate repair! I can't believe it's already been that long. He's done so well since then & you really can't tell too much since you can't see his scars much anymore! I remember trying to feed him when he was in the NICU, we would get SO excited when he'd eat a half an ounce because of his lip & palate it was a challenge for him. And man, when he ate his first whole bottle in their, I could have threw a party when I got home haha!! When I look back at all that, Kayden has came a very long way. Before he had CHF he would eat all the time, he'd be carrying food around all day lol. Then once he started getting sick again he lost his appetite, & ended up with the NG Tube since he wouldn't eat. Then when they put him on the Revatio, he has felt so much better & back to carrying food around everyday or having something with him on the couch! I love it lol!! He may still be in heart failure & facing surgery, but he's not giving up, I'm so proud to be his mom!! 

Kayden's Palate, he had his little mouth piece thing in too.
I just love this smile. This was a few days before his first surgery (4 months)

I still can't help but wonder what went wrong with his heart. I mean it was better or staying the same I guess I should say for a year or maybe even a little more. Then once he had that surgery in June for that cyst beside his ear, everything went downhill. His heart got worse & there was no explaining it. No one knows why even still and it's been almost 6 months since he was put in the hospital for heart failure. He's 3 years old now, and he has had 5 surgeries & done fine through them all, even the ear surgery he did fine through it. So yes, even when he has his heart surgery I do think he will do fine, but ya know this is also a more serious surgery so it scares me a LOT more so I still have that what if in the back of my head. But reading other CHD mom's stories about their babies & their surgeries. That gives me more hope than you could imagine! Our kids surprise us at how strong they really are. Kayden's been fighting for his life, but this surgery I'm afraid is going to be one of the biggest fights of his life! After I had Kayden, I was at my moms job & an older lady and I were talking about Kayden & I was telling her about everything he had. Before she left she told me 'Have faith in God & everything will be okay', that has been in my head now for 3 years. I'll never forget that & I remember it EVERY day!! I have a very special little boy in my life & God knows how much I love him & he knows what it will do to myself & my family if anything happened to him, so I don't think he will take his hand off of my little one. I know whatever is going to happen is already written & what's going to happen is going to happen. But I can't help but think, ya know I know I've done wrong in my life & I've changed a lot now and I really don't think he will punish me by taking my child away. That is one thing NO MOTHER should have to face. It's hard enough losing a parent for the kids. But to lose your child? That is pain no parent should feel. I know Kayden's case is bad & rare as his cardiologists say, but I do know there are CHD's worse and that's the bad part about it. I know somewhere, someone has it worse than me & I know how I feel each day, so I couldn't imagine how they feel!! So please tonight before you go to sleep, say a prayer for all of the families out their affected by a heart defect.

Right after his lip adhesion (4 months old)
Me and Kayden before his final lip surgery (10 months)
After his final lip repair (October 2008)

Kayden after his palate repair..January 2009 (13 months)

Kayden James...January 12, 2011

Thursday, January 13, 2011

Kayden..You're my Hero

So my little man had his check up today with his cardiologist. He did another echo and everything is still the same, no worse & no better. So I guess that's good right? I also told his doctor about the cardiologist calling me from Boston. He was very surprised they called me. He said the way that usually works is after UVA sent the information to Boston, then Boston sends a letter to UVA with their recommendations and then if he wants to speak with me he asks UVA if it's okay to call me. Well I don't know if UVA said it was okay since I haven't talked to them in a month. Anyways, his doctor definitely thinks it would be a good idea to go see them up in Boston. He was telling me how Dr. Del Nido is 'the man' with surgery & he's the top person up there in their cardiology department. So THAT is great to hear he's one of the best. And I want the best for Kayden!! Also, his doctor talked to us after the echo, he told me Kayden may not look like it, but he is a very sick little boy & his heart function is very poor. Which I already knew how bad it is. He also told me, which he knows I already knew but he wants me to KNOW that there is a chance of death with heart function as bad as Kaydens. He also said once again how Kayden's case is very rare & I need to still watch him and if he looks like he's going to pass out or if he does then I need to get him to the doctor right then. He said with kids that have heart function as bad as Kayden it's hard to resuscitate them. So he wants me to play it by ear with him & his office & he was going to e-mail the doctors at UVA & Boston because he said things need to get going now. So soon enough my baby boy will be having surgery to fix his broken heart =/

Now on with what the doctor from Boston told me. He said from talking with Dr. Del Nido & one of the other surgeons there, they think Kayden should have a Glenn Procedure done & I think he also said a 'Cone' Repair <--which I think that is to fix the valve that's leaking. So once I told his cardiologist that today, he was happy that they think there is another option that will help that isn't a transplant & he definitely wants to do it if they think it's possible. But since UVA didn't send the cath information over yet, I don't know what they'll think after getting that information. So it looks like we are going to be going to Boston for them to do an evaluation on him, & I'm considering doing his surgery there whenever or whatever it may be.

-So now, I've been wanting to cry all day just because I do know that it's possible Kayden won't survive the surgery or waiting for the surgery. I'm so worried, & I don't know if I'm that strong to live without my son. I pray everyday that God let's him make it out of this okay. Again I believe everything happens for a reason, and I believe God made Kayden like he is for some reason, & rather it be to straighten up people's lives, because he's touched many peoples lives and this Angel makes an impression on all of them. Or rather it be for all of these doctors from Roanoke to Boston to learn from Kayden to help another child who has a heart like his. It could be 10 years from now or it could be 30 years. Kayden's condition & what these doctors are learning could save another childs life. I just hope I get to keep my son in the long run. God's got his hand on Kayden & he's got a lot of Angels watching over him & he's got a good line of doctors & a very strong support system with our family. Kayden is my hero though, he's strong & he's been fighting this for 3 years and for the past 6 months it's been the biggest fight & I don't see this little boy giving up easily. He hasn't yet and I don't see it happening anytime soon! I LOVE YOU KAYDEN JAMES!!!!!

Kayden's Lullaby


Wednesday, January 12, 2011

It's that time again...

It's time for Kayden to go back to the cardiologist tomorrow. He has been since before Christmas since his cardiologist didn't want to have us running back and fourth between cardiology appointments with me about to have Isaiah at the time lol!! I'm pretty anxious to see how it goes tomorrow. He's been doing good with his eating. He has his days of course as any toddler does lol. He's been up playing for the most part, he still has days of laying around although he does still sleep more than the other kids, which I expect because his body still needs the rest because his heart has to work harder! Also, I had a phone call this evening at 6:17 p.m. from Dr. Marx at Boston's Children's Hospital. I missed the call because it was charging & we were eating dinner! Well he got Kayden's echo that UVA sent them, I'm very anxious to speak with him & see what he has to say. I'm very curious since UVA has already gave me all the blows at once like his hearts barely pumping enough blood to his body & he's too high risk for valve repair & probably wouldn't make it, oh and don't forget the transplant evaluation, which he will probably end up on the list since the other options seem like a big NEGATIVE now. But after doing some researching BCH seems to be the #1 in the country in pediatric heart & heart surgery!!

Well anyways, I'm on a few different forums & blogs as well as a lot of other heart moms. As I was looking at one of them tonight, I was reading some posts & stories of kids who are now older, well like 6 or 7. And it makes me happy & sad all at once. It makes me happy to see that they've done so well & it gives me and other moms hope as well. Hope for our little ones, that one day they will see that age. It makes me sad though, that moms such as myself, with younger kids & facing surgeries because I don't know what's going to happen with my little one. And it's sad we all have to live through everyday wondering whats going to happen. That's one thing about all this that I hate, I hate that I have to live everyday wondering what's going to happen with Kayden. I worry soo much about him, I look at him everyday and I smile because he's here and God's blessed me with another wonderful day with this Angel. I pray that he lets Kayden live to be an old man & have his own family, & I pray that he lets all the other CHD babies live a very long life & have families of their own. They deserve it, they all fight such a hard battle & I know some won't survive which is the worst part of it all.

Anyways expect an update tomorrow from the cardiologist appointment as well as an update about what the doctor from BCH says!

Monday, January 10, 2011

When Time Stands Still

"When Time Stands Still" 
by Debbie Hilton-Kamm

It starts with news impossible to hear
It conjures up your every fear
It's when they say your child is ill
That's when time just stands still
In that moment, that suspended time
A thousand thoughts run through your mind
Will he ever laugh and play?
Will I see his wedding day?
All the planning, the hopes and dreams
Are put on hold -- just what does this mean?
His crib is empty, his toys alone
For now, the hospital will be his home
This is a place where time stands still
Where the void's too large to ever fill
For in a hospital's intensive care
Children lie, some unconscious, some aware
And time is measured by a new yardstick
Every second marked by a monitor's tick
Noting every breath the child takes
And every beat his tired heart makes
Just a moment of watching a child writhe or strain
In sedated confusion, or fear or pain
Or pleading for a drink to which you can't oblige
Seems like far more than an entire lifetime
And the children who live far too long
In hospital gowns, trying to be strong
They have old souls, that's what they say
Because in each moment they've lived a thousand days
For those who say time goes by too fast
Sit with an ill child, and see just how slowly time can pass

Sunday, January 9, 2011

Confessions of a Twilight junkie...

OKAY I'll admit..YES, I am a Twilight JUNKIE!! I love it & can't get enough!! I've finally read all of the books, I actually never thought I'd like The Twilight Saga, I saw previews for the first movie and I was like OMG that looks so stupid..Well who know I'd freaking love it!! So I finally watched Twilight & New Moon ohh like 10 times then I decided I wanted to know what was going to happen. So I read Eclipse & Breaking Dawn haha..Well I actually got my mom to buy me the first two books & I've finally finished reading them it took me like a week to read them both lol! I'll have to admit I like the movies better! But the books are amazzing I think! Stephanie Meyer has some talent IMO. Well today has been what I call a "Twilight Day" lmao. It's when I start early in my day & watch all 3 movies..So now I think I've saw Twilight & New Moon now like 20 times (literally) and Eclipse probably about 7 times now haha! I saw it in theaters umm two or three times I can't remember. So now it's got me VERY eager to see Breaking Dawn when it comes out I believe in November. So I think I might go ahead and read that book again when I get some time. I also today found 95 reasons to hate Twilight, I couldn't help but read them and laugh. I love it but the reasons were just funny..You can Google it and you'll find the reasons. All in all today has been a good day & I'm not looking forward to tomorrow because I've got to get up too early to get Alexis & Lyndsee up for school lol! When can they wake their selves up again? hahah..I hope you all had a great weekend =]! Now I know everyone has an addiction to something..What is yours?

Saturday, January 8, 2011

Kids say the funniest things...

Tonight for dinner we had spaghetti, salad, & these cheese stick bread things they are really good lol! Well, Alexis is very picky when she eats, so we asked her what all she wanted on her plate. So she says this, 'I want spaghetti, bacon bits, bread, and salad withs no salad, no tomato, and no onion.' LOL...she calls lettuce salad, so thats what the no salad is. I couldn't help but laugh & say, umm Lexi do you know you can't eat a salad with no salad, she just looked at me LOL..Kids can say the silliest things. It's adorable when we go to Taco Bell, if I get the boys tacos or myself taco's then I get no lettuce..So she's started telling me when I get her food she'll say uhh I want a taco with just meat and cheese, no salad, no tomato, and no onion..she's just adorable! And Kayden, I love getting him to talk, he has the cutest little voice, if I ask him a yes or no question, he doesn't say yea or yes, he'll go 'yep' or 'noo'. Now my mom she loves some limeade and Kayden is the same way, so when I ask him what he wants to drink if he wants that he'll call it 'yimeade' it's so cute! I love the way they mispronounce words when they are young...I know I should correct him since he is 3 but it's just adorable! And he can say his L's just not on that word...Which brings up his speech, I'm happy to say he is done with speech therapy for now, we took a 60 day leave from it or maybe it was a 30 day, I don't know it was either in October or November when his speech therapist & I decided it was time, because he started getting bored and not wanting to talk or do anything plus he'd met all his goals..So when we talked in December she felt like it was okay to go ahead and discharge him and he get speech therapy through preschool this fall when I send him..THAT IS IF I GET HIM POTTY TRAINED UGHHH!!! So I'm proud of him, and he's learning to count now which is very good since he just turned 3 =]!! And Tavion, I'm just trying to get him to talk, he is stubborn and doesn't have many words (not good) he'll be 2 in May..So I'm afraid if he doesn't start talking soon, he'll need speech. Which isn't a big deal just I have no clue when I'll have time for another appointment in my schedule, it'd be hell now if Kayden was still in speech every Wednesday at 2 p.m. LOL!! Anyways it's late and past my bedtime =]

Friday, January 7, 2011

I AM a CHD Mommy!

I will have my outburst, I will have my moments where I break down in tears for no apparent reason. I will love my children and hold onto them tighter than anyone can imagine, I will devote my life to my children and for my children, like tomorrow may be my last. I am a CHD mommy. 


Okay so I just posted a few poems all about CHD's and they are all REAL. The woman who wrote them has a child with a CHD. Anyways, I decided to write this and post those because I mainly started this blog to keep updates about Kayden & for family & friends to follow us through this obstacle God has given us. Hint**the url brokenhearted07 lol! Anyways, I'm going to let you all in my head a little (I know scary, right?). I'm going to try my best to describe what I've felt during our lowest points and at our highest points, I'm going to try to help you all to better understand WHY I hope you all read the poems or stories I post. 


I'm a strong believer in everything happens for a reason...


Starting with back in 2007 when I found out during pregnancy that my first son was going to have a cleft lip/palate & also a heart defect. I was 4 months pregnant with Kayden when it was all confirmed. I was scared to death, I didn't know what to expect, all I could think was 'this is my fault', 'what did I do wrong'. I mean I quit smoking, I didn't drink or do any drugs, so I mean really..HOW COULD THIS BE HAPPENING TO ME...I was 19 years old pregnant with my second child, I NEVER in a million years thought anything could go wrong. I mean does anyone? I know there is always a chance but we don't think about it ever happening to us..I just wonder how many people have looked at me & Kayden and said to there self, 'Oh that will never happen to me'..Trust me it very well could happen to anyone, NEVER TAKE ANYTHING FOR GRANTED!! I remember I laid on my bed after my second appointment that they did confirm about his lip & heart & I was watching/listening to BET and Alicia Keys-Like You'll Never See Me Again came on & I just started crying, okay I mean I was balling, ya know my face all red and tears just kept coming, I was scared to death about my son and what was going to happen, I didn't know what my reaction was going to be when I seen him, I was scared at first to tell people about Kayden's issues, afraid of what people would say..But then I finally found the words to choke it up and tell everyone, because I was NOT going to be ashamed of my baby boy, I wasn't going to shelter him from the world...People can be cruel and that was my biggest problem with telling anyone!! When he was born, he was in the NICU 2 weeks. He was on oxygen for a couple days after he was born & I couldn't hold him which really upset me!! At the time, I didn't think I'd ever to bring him home, those 2 weeks drug by forever!! I broke down right there in the NICU on day, because I didn't know when I'd get to bring him home & the doctors were being no help just doing tests on him, that ALL came back normal & STILL DO...It gets frustrating, I felt like they were using him as a guinea pig because he had different stuff going on that didn't add up...I wanted so bad for Alexis to get to meet him, I couldn't even bring her to see him because she was too young.
Anyways...now I'll bring you to the present. Back in July when Kayden's cardiologist told me he had congestive heart failure, I felt like someone was stabbing me 1,000 times and ripping me apart. I knew it was bad, his doctor told us to go across the street get the x-rays and go straight to the hospital up to the PICU, he said if they hadn't gotten the x-rays done within 10 minutes after getting their to just go to the hospital. Well, I kept it together until I got over to the urgent care where we had to go get the x-rays done. I was pregnant with Isaiah so I couldn't go with him, my mom went in the room...I sat in a different room to wait..that is where I lost it..I heard him screaming, he hates x-rays or well doctors or anyone that looks like one in general...I was sitting there listening to my son scream, and the words each word one by one congestive.heart.FAILURE...the last two words..HEART.FAILURE. That is all I was thinking and I starting sobbing, my chest started hurting all I could think was 'God, please let him be okay, please don't take my son away from me..He's got a baby brother at home & one on the way that he has to meet'..While we were in the hospital for that week so many things were going through my head, I would think to myself, 'God please, his brother needs to know who he(Kayden) is'...thinking about Isaiah obviously since I was pregnant...Then there was Alexis, OMG this kills me & here I sit tears in my eyes now, Alexis loves Kayden, she loved him when I was pregnant with him, she'd say baby Ka-Ka because she couldn't say Kayden at the time & she'd rub my belly all the time...I just didn't even know what it would do to her if anything happened to him. I was scared for that..She loves him so much & I don't know how she'd act if anything EVER happened to Kayden..then I thought to myself & I still do to this day and will until something does happen & he's all better...HOW COULD I LIVE WITHOUT HIM? I don't know if I could..I don't think I could live without ANY of my kids, I'm not as strong as people think..I break down all the time, tears would fill my eyes & I'd fight back the tears and I still do fight back the tears so no one sees me cry, I have to be strong, for myself, for Kayden & for Alexis, Tavion & Isaiah.
Now to actually the present..Kayden's still in bad heart failure, he's got a very rare heart, which makes him special...Like I've said previously in a blog, only a handful of people have had a heart like Kaydens, that is why it's so hard to make a decision as to what to do about his heart...Every night he is sleeping, I check on him to be sure he is breathing, I will put my hand on his back or chest and be sure I feel it instead of see it...Most of the time when my son wakes up he's lips are blue because his circulation isn't any good. His hands, feet & legs are always cold because his circulation is no good. Sometimes even when he wakes up his face still looks swollen, even being on 2 fluid medicines. Everytime he cries I wonder if something hurts him. Lately he's been telling me his tummy hurts, which has me worried. When he doesn't eat much one day I worry, because I know he needs to eat to gain weight and be strong & healthy to prepare for what's to come. Each night I lay down, I pray that I'll have him the next day, I pray that when it's time for surgery that everything will go okay, I pray that my son lives a very long life & has kids of his own one day. Then I still have those thoughts always in the back of my head, WHAT IF...he doesn't survive? he doesn't make it to see the age of 4? he doesn't wake up one morning? he passes out on me one day? Those things are always there & I can't make them go away, I don't know how or if there is even a way to make them go away...I've tried to actually visualize myself in the situation when Kayden has surgery on his heart, and I can't do it without crying...I mean what if something bad did happen? HOW COULD I LIVE WITH THAT, HOW COULD I TELL MY OTHER KIDS? Anyways, I don't know what the future holds, I hope Kayden will be with me for the rest of MY LIFE...
So you see, I'm not as strong as people think, my head is so messed up I need help probably because before it's over with I'll probably drive myself insane thinking about the what ifs...When I'm around people it's not as bad though, but I can be driving down the road and just start thinking about it..or a song will come on and it will make me sad because it reminds me of Kayden...He's just a baby to me still, he deserves to live like any other child...He should be outside running and playing, riding bikes, he should be jumping off the couch like Tavion, or jumping on the bed like Lyndsee, he shouldn't sit on the couch and play for the biggest part of his day...Being a heart mom is hard, it's the hardest thing I've ever done, I've got to know & accept the risks of surgeries, or even the catheters I've got to be aware of those risks..It's the medications he is on, I've got to know how much he gets & how often & learn the names of everyone of them & be sure he gets them when he's suppose to...It's watching for side effects from the meds, or watching for signs that somethings wrong again..just like I'd noticed in July his feet & legs were swollen, he lost his appetite & he slept ALL THE TIME...Now I write about Kayden, or CHD's or the poems even..because this IS MY LIFE...This is who I am now & it's who I'll be until I die. And I hope you all read what I post because it's reality it is what I face daily, it is what I will face when he has surgery, it is what other kids face & their families face..It's the reality of it, that families daily lose a child to a CHD & CHD Awareness isn't talked about near as much as t should be..IT'S THE NUMBER 1 CAUSE OF BIRTH DEFECT RELATED DEATHS!


One little heart beat & two little feet changed my life forever on December 21, 2007.

 He may have been born with a broken heart...
But to me he is perfect & always will be.

Then He Chose Me. By Stephanie Husted

Some things...
Can't be held in your hands...
Like hope, and faith...
And dreams and plans...
Some things...
Remain so hard to see...
Like courage,strength, and bravery...
Wisdom,knowledge, inspiration...
Finding acceptance...
In our situation...
I know God heard...
My every plea...
He knew what I needed......
Then He chose me.

I walk toward the doorway...
And then I step through...
My child lays fighting...
In this ICU...
Wires all over...
Monitors beeping...
Here lies my child...
Peacefully sleeping...
Sometimes I'm afraid...
Of all that I see...
But I remain thankful...
Because God chose me.

And now we are home...
And I'm watching him play...
And I'd often wondered...
If I'd see this day...
When things would be normal...
And worry has eased...
He looks up at me...
As if he's quite pleased...
And yes...I still wonder...
What will come to be?
But I remain thankful...
Because God chose me.

I think about heart friends...
Now no longer here...
Their family now facing...
My very worst fear...
And as loving parents...
Hold tiniest hands...
Sometimes...it happens...
God has other plans...
And as parent's question...
The things he went through..
This small angel whispers...
I'm glad HE chose you.

He didn't look upon me...
And say you'll rise to fame...
Have all that you could ask for...
Or be a household name.
I'll never win a grammy...
Or paint rare...priceless art...
God chose me to love a child...
With such a special heart.
~Stephanie Husted

Somewhere

Somewhere someplace today
A family is waiting to hear
Is something wrong with their baby?
The answers aren't quite clear.
This family has entered an unwanted world
And they just don't know what to expect.

Somewhere someplace today
They first heard the words: heart defect.
And how they hoped this was not true
And thought this cannot be, I too
know just how this feels
For one day this was me.

Somewhere someplace today
A man and a woman embrace
Their baby is in surgery,
They long to see her face,

They haven't got to hold her yet, without a cord or line
They pace the room awaiting news
And hope she'll be just fine.
Prayers fill this busy waiting room
And mom and dad are scared

Somewhere someplace today
The tiniest hearts are repaired.

Somewhere someplace today...
A child's growing fast, 

Smiling,laughing,thriving...
His mom thinks can this last?
It's almost easy to forget
That anything is wrong...

Somewhere someplace today
Her child seems so strong.

Somewhere someplace today...
A little boy fights just to live
A father holds his tiny hand 

His love all he can give...
The doctor's are all baffled...
They fear that he might die...

Somewhere someplace today...
A family says goodbye...

Somewhere someplace each year..
More than 40,000 families will see what it means,
when something's wrong. They'll face a CHD.
Today for just a moment,
Stop, remember, reflect.
Make time to tell someone you know, 
"I've been changed by a heart defect".

Author - Stephanie Husted

I am a Heart Mother-Poem

By: Stephanie Husted


One day my world came crashing down,
I'll never be the same...
They told me that my child was sick..
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong..
It seemed my heart was breaking..
As, I'd loved him for so long.
I will not give up on this child..
despite your best "advice"..
I will give my child a chance..
No matter what the price..
And I will learn all that I need..
to help my child to thrive...
I'll even use that feeding tube..
My child will survive!
And he'll needs lots of therapy?
And he just can't gain weight?
Alright God I can do this..
I will not curse our fate.
The feeding pump beeps,( at 3:00 a.m.)
It serves as my reminder..
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.
Another angel earns their wings..
and I run to my sleeping child's bed..
I watch him then, for quite awhile..
(I bend down and kiss his head)
Then I cry for the parent's whose lives have been broken..
And I look to You wondering why?
Oh Lord, I just can't know your ways..
No matter how I try.
And yet, I trust You hold his life..
(and guide us through each day)
My mind says savor each moment he's here...
But my heart whispers,"Please let him stay".
From... pacing the surgical waiting room...
to sitting by his hospital bed...
From... wishing for a good nights sleep..
to learning every med..
From... wondering will he be alright?
to watching him reach out his hands..
with every smile, my heart just melts..
(despite life's harsh demands)
For all who see that faded line..
I look to them and smile..
You see my child is loved so much..
I would face any trial...
That same scar I trace with my finger..
(It's the door to his beautiful heart)
You must have known how much I'd love him..
(Just as You loved him right from the start)
A heart mom is always a heart mom..
(wise beyond all of her years)
And for those who have angels in heaven..
Our hearts share in all of your tears..
On Mother's Day I will remember..
You chose me for him(and no other)
And I will embrace that beautiful day.. 

When I became a "heart mother".

What is a CHD?

What is a CHD?
by Shannon Arnold Smith

What is a CHD? You passed me in the shopping mall...
(You read my faded tee)
You tapped me on the shoulder...
Then asked...`"What's a CHD?"

I could quote terminology. ..
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin, Captopril. .. .
It's wondering... Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!
It's the first time I held her...(I'd waited so long)
It's knowing that I need...to help her grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.
It's checking her sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's caths,x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...
It's asking...do her nails look blue?
It's cringing inside... at what she's been through.
It's dozens of call to her pediatrician. ..
(She knows me by name...I'm a mom on a mission)
It's winter's homebound... and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching her sleeping...her breathing is steady...
It's surgery day...and I'll never be ready.
It's handing her over...( I'm still not prepared...)
It's knowing that her heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying.. .it's hoping...that she'll be okay.
It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected.. .
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...
It's watching her chasing...a small butterfly...
It's the moment I realized...I've stopped asking...why?
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...
It's changed our family...
This is what we face each day...
This is...a CHD

Thursday, January 6, 2011

The story behind the blog....

I was going to wait to post this, but I think now is a good time...Tonight has been one of them nights, just thinking about everything. First off, my mom went to see my grandma today she will be 84 this year, my mom said they were talking about old times & memories and my mom was talking to my grandma about Isaiah & well my grandma mentioned something about when my mom was a baby, and instead of saying when "you" were a baby she said when Joann was a baby. This upset my mom I think, she looked like it did when she was telling me, that her mom didn't realize who she was talking to for that split second. They also had a talk about my grandpa & how he was such a good man, he'll be gone 12 years on January 17. It's true though about my grandpa he was such a great man, the best one I've ever known, I don't think he had an enemy in his life, I never remember him getting mad or anything. He was a very tender hearted man, he would get upset easily, I guess that's where I get it from. Well then I started thinking about Kayden, and how much he reminds me of my grandpa even being so small..Then I started thinking about everything Kayden's been through & the things he's going to go through..Then I started having so many things run through my head, I try to not think about the bad stuff but it's so hard when I'm alone & everyone is sleeping..I start thinking about what if after the transplant evaluation they decide he needs to be put on the list..What will I do if my son has to have a transplant? It's hard to think about and when I do it gets hard to breathe & tears feel my eyes..I pray every day and every night that God will give me another day of him feeling good & the medicines helping him...This is a journey for us that we knew wasn't going to be easy, and I know no matter what happens it'll be worth it, everyday my son is with me is a blessing.

Strength. This is first because Kayden and anyone with a CHD has to be strong. They've got to fight a very tough battle that in the end they may not win. But that's also what makes them so strong is for adults knowing what might happen. And as for parents and families of a child or anyone with a CHD, they've got to stay strong for their child or family member!! As for myself, Kayden's given me the strength to get through so much other than this. And if my son needs a transplant, I'll have to be strong for him & also my other kids, I'll have to be the one to hold us all together...

Courage. I chose the word courage because, these kids & families have amazing courage. They've got the courage to face fear. They've got the courage & the strength to not give up & to keep fighting for their lives everyday. Kayden has given me courage to keep moving on when I've felt like giving up so many times before, not with him trust me..that will never happen, I'll fight for my son until the day I die.

Hope. We've all got hope. Everyone has hope whether you have a CHD child or not. But as for me & my family with Kayden, we've got hope that everything will be fine one day, well as fine as fine can get for something like this...The day Kayden was born changed my life & my families life & I've had hope since the day my doctors told me he had a heart defect.

Another word I use for Kayden is Love. Because he has showed me how to love unconditionally. But that word will be used another day/time & another blog lol...

Strength.Courage.Love
Strength to get through hard times.
Courage to face our fears.
Love unconditionally.

I get tired of doctors ya know...

Ok so this time it wasn't a bad appointment lol!! This was just Kayden's 3 year check up =[ and Tavion's 18 month check up!! They went on January 3 which was really fun haha so fun I decided I needed my mom to go with me..okay obviously because neither of them will walk for me..They both can but Kayden gets tired too easily so only walks sometimes & Tavion runs away from me hah! Anyways Kayden got checked out first, he was 32 lbs & I forget how tall but he's right at average for both his height & weight..I'm very relieved with his weight that he's not anymore considering the circumstances, I guess the 2 fluid meds he's on are helping after all..He said he looked great & his activity is good considering everything & his appetite is good for him as well so good NO TUBES still!! I still can't grasp the concept that my baby is already 3 ugh that's sad, by the end of this year he will be 4 and in preschool OMG, someone will probably have to drag me kicking and screaming away from that one lmao!! Anyways he did tell me with the potty training situation since Kayden is stubborn and wants nothing to do with it, he actually throws his little underwear across the room if I put them on him and says 'NO POTTY MEAN ME'...So his doctor told me just to ignore it for a month or two, just not mention anything to him about it & then get M&M's or something and put them in a jar as a reward when he pees give him one and well when he poops then give him 2..So I think we are going to try that soon..Kayden's also a tougher boy to train since he's in and out of hospitals and has IV's and leads all over him I'm afraid I'll get him trained and then when he's in the hospital he won't be able to get up and go in time which will probably discourage him & myself..So this is going to be a long journey but it'll be okay we'll get through it just like everything else!!

Tavion looked good as well I forget how tall he was also =/..shame I'm such a terrible mother LOL..Anyways he weighed 24 lbs, the little piggy..He said Tavion is also average. Poor Tavion got so MAD when we had to lay him down to check him out haha, he hates being restrained!! Anyways, I've noticed awhile that his chest goes in more than the other kids, when he breathes, cries, or anything really..But the doctor said that it's nothing to get too concerned about now that it's just mild it's called pectus excavatum, or what Philip calls it pigeon chest, he had it when he was a kid & he had to have surgery..So anyways my pediatrician said we'll definitely keep any eye on it & was glad that I payed attention to notice it...Which how can I not pay attention after everything with Kayden, I'm VERY alert when it comes to my kids and also probably a little to paranoid haha, but hey I'd rather be safe than sorry!! I don't want to lose them or have anything bad ever happen to any of them!!

Anyways, Isaiah is almost a month old now :'(...He's getting so big a little too quick, it really makes me sad, he's already eating about 5 oz sometimes 6 every 4 hours or so..He's a little piggy too. Alexis was the same way when she was a baby I don't think I could ever get her full lmao..I started giving her a tiny bit of cereal at about 4-5 weeks old because she would constantly be eating!! I'm beginning to wonder if I'll have to do the same with Isaiah..Oh well, he'll fit right in with the other kids because they love to eat lmao!