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

Friday, 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.


  1. You have beautiful children. All of them. New follower and proud to be!


  2. I agree. Your children are beautiful!
    I'm a new follower from MBC. Hope you'll check out my blog and follow back.
    Hip Chick's Guide to PMS, Pregnancy, and Babies