Better late than never..

I've been needing to blog for some time now. I've just been horribly tired the last few days..so I'll blame it on the time change thing! Well if you've been reading my blog and followed Kayden's story you know March 14 was his 8 month Angelversary & 1 year since he was admitted to CHB for his open heart surgery. If you're new to my blog...well now you know lol! I put 3 heart balloons at the cemetery on Wednesday for the 3 weeks he was in the hospital. Those were the 3 most stressful weeks of my life being away from my babies. Until June/July 2011. Now that was a piece of cake compared to my life now.When I wake up in the mornings I have no idea what the day holds for me, I don't know if it'll be a good day, or a crying day all day..or it could start good and end up a bad day...I just never know so I live second by second. 

A friend of mine got her job to donate a bunch of food to Mended Little Hearts for their food bags to take to UVa, so that was so awesome of them, huge thanks to United HealthCare for helping heart families in need ♥ 

That was always one thing I hated doing was leaving Kayden to go eat, so the food bags were a huge help, I could just have a snack. The only time I'd leave is if he was sleeping, because he was intubated and couldn't eat and it would break my heart when he'd reach for my food!! Or my drink so it all got hid!!

Today March 16, was the day before Kayden's open heart surgery last year. I'm changing my Facebook picture daily to a pic of Kayden 1 year prior! So today's picture is his big beautiful face the day before his surgery!! My little man was such a little fighter, he always always ALWAYS had a big huge smile on his face!! 

Tomorrow I will be making a heart shaped cake for Kayden's 1 year surgery anniversary & we will be releasing 1 heart balloon and 2 white balloons. The 2 white balloons represent his Angel wings & the heart obviously represents his big little heart, in other words it means, your heart has wings ♥

Kayden's strenght deserves to be remembered so I will continue to honor him! This year I'll be doing his toy drive again at UVa, I'll post more details about that probably in July or August!! This year Kayden's birthday will be on a Friday, so the toy donation will be done on December 20 again! 

The day before his open heart surgery at Children's Hospital Boston

Kayden's heart balloons!

On another note, I'm happy to say I've lost 4 lbs since January woo hoo go me!! I've been walking and doing workout videos and I'm watching my calories. I'm on week 2 of actually logging all my foods so I've done great the last 2 weeks!! I've still got awhile to go to get back to what I want. But I've settled with if I get down to 120 lbs I'll be good...BUT if I do that I might as well keep losing the last 5 and get to 115 my pre baby weight with all 4 kids..Do you think it's possible? I think so! I'm determined to get this done and know it'll be well worth it, just like smoking! April will be 2 years since I've been smoke free WOO! Go me! Thanks to Kayden and Isaiah really but it's good that I had the strength to not start again! Anyways I'm off to walk so I hope you guys have a wonderful day ♥ Do something to honor Kayden this weekend, he deserves it

Quick blog for the day..

This is gunna be short and sweet because I've got to leave soon to get Lexi & Lyndsee from school.

So I was talking to a friend of mine this morning and we were talking about Kayden and his surgery and how it's been almost a year ago since he had his open heart surgery. Well I was saying, it's weird ya know because it's like it happened to someone else. It feels like it ALL happened to someone else. But it's true, it did. I'm not the same person I was a year ago. The person I was a year ago didn't know the loss that this new person knows.

You see that picture? That's the old me, that's who I don't know anymore. The little boy, he is an Angel now, he's no longer walking on this Earth, so therefore people don't know he existed. They say aww your kids are so adorable, how old are they. When I answer, I will still tell them about my baby because he will always be my son, my child, my little man.
This person didn't know what was ahead of her, she didn't know 4 months later her son would go live with the Angels. She didn't know that a year later she'd be sad over a day because it was his 1 year surgery anniversary. She thought he'd be with her.

You see her? That's me. Sure I smile, I smile to hide the pain, I hide the tears and hardly show the emotions that my body feels. My chest hurts, I literally feel the aching in my heart, it's been shattered and I can't pick up the pieces and move on. I will always live with a broken heart. When you see her, you'll never know the pain, the loss, the things she knows. I look like every ordinary person, little do you know I'm not the only one out there like this. We can be anywhere, the person riding next to you on the bus, the person next to you at a stop light. Maybe you pass me in the grocery store with my 3 other kids. Who knows, so don't judge people that you don't even know. I still don't know my future, a year from now I may be someone else. But for now, I'm lost in the woods and trying to find my way out. I'll put one foot in front of the other and keep moving forward, I will keep being the mom to my other kids, I will keep visiting my Angel every day at the cemetery until I feel I don't need to go everyday, I will for now because I feel close to him there as I do in his room.

I will never get over losing Kayden, I'll act fine but believe me I'll never fully be okay. ♥ 

A Sunday night with me...

Tonight was finally the season premiere of one of my favorite shows EVER ARMY WIVES! I couldn't wait until it came back especially since I thought last season was it, but then they said at the end of the last episode they'd be back in 2012! I was super excited! Well, it's kinda sad though because Kayden use to watch it with me if he was up sick, or wasn't in bed yet. Last season my big man was still with me and last March we were in Boston watching it ♥ I miss him so much, I don't want to give it away from people who haven't got to see it tonight, but it made me want to cry so much because I could relate to a lot.

I wonder what Kayden would look like today, what would he have been like as a 10 year old kid, how would he have been with Isaiah or Tavion now? What career would he have chosen as an adult? Watch him get married, have his own family. I have lost it all. I don't have that future anymore. Him being a toddler is all and I have to accept that as being enough as hard as it is. 

Anyways enough sad stuff..I love Pinterest lol I love getting recipes mostly and the crafts! Well tonight's dinner was a pinterest inspired dinner! We have a baked potato casserole, corn casserole, lima beans (because Lexi hates corn), and an ice cream sandwich cake! It was freaking amazing! I suggest you guys try them!! I'll be sure to include the links for the recipes ♥ 

The Ice Cream Sandwich is super easy and I don't have a link for the recipe but it's this:

12 Ice Cream Sandwiches

2 Containers of Cool Whip

Mini Chocolate Chips

1. Layer the dish with 6 ice cream sandwiches.

2. Add layer of cool whip, use 1 whole container.

3. Add 6 more ice cream sandwiches.

4. Add another layer of cool whip, use the last whole container.

5. Add mini chocolate chips. And put in the freezer until it's ready to eat!

This is for a 2 layer cake, you can do a single layer and use 6 sandwiches and 1 container of cool whip.

Here are the pictures of my wonderful dinner =]

Baked Potato Casserole
http://www.verybestbaking.com/recipes/143635/Baked-Potato-Casserole/detail.aspx

Corn Casserole
http://smokymountaincafe.blogspot.com/2011/08/corn-corn-and-more-corn-casserole.html

Ice Cream Sandwich Cake

People who don't have kids should...

I just have to vent over this for a minute.

If you know me then you know I've had 4 kids. You know I had a hard time losing weight after Alexis and stayed in the 130s-140s after her. You know after Kayden it was easy to lose weight getting myself down to like 120-125...After Tavion it was impossible and after Isaiah I've had a hard time, from being in and out of hospitals with Kayden, stressed, etc. So after watching some videos and reading, I get sick of seeing people who don't have kids say we use our kids as excuses about weight loss, saying we have kids so we're too busy. I admit some people will use that. BUT what about people who really have no one to watch their kids, can't afford to pay for a gym membership, can't get away from doctors or hospitals because they have a special needs child, or how about the ones who flat out can't afford the fancy healthier food?! If you don't have kids you have no clue what it's like trying to lose weight after having a child. You should not judge and say we use them as an excuse. Instead of telling them it's an excuse give them a bit of different advice. Find them alternatives if they can't afford the gym, or can't afford your diet foods, or your healthier options. Or afford daycare, we aren't all fortunate enough to have a mom, dad, brother, or sister to watch our kids and sadly a lot of our friends have nothing to do with us because they think it's a disease to have a baby so we're no longer fun anymore.

I for one have decided this, I love food too much lol it's true, always have always will. Before I had kids I could eat anything and never gain a pound or show it. And even now I can eat what I want and I still don't gain weight and it doesn't show, my weight is still from after I had Isaiah, Tavion, Kayden & Alexis. I weigh myself at least once a week sometimes more out of curiosity because I'm trying to lose it in my own ways. I've been managing my portions, drinking nothing but water, I did drink a juice one day because I LOVE cran grape juice lmao, and I've been doing some home work outs that I've found online through youtube or just googling. I'm losing slowly but that's all that matters! I'm trying to get my muscles tightened back up in my tummy, because after having a baby those muscles get lose and flabby lol google it it's true, or you already know from experience. I've lose about 3 lbs in a month and most of it came off in the last few weeks when I've actually became serious about giving up soda. Over the last few days I have been eating smaller meals 5 a day and sometimes because I am so busy during the day it's not even a meal it's a grab and go snack or like a granola bar or something haha! I'm going to prove all these psycho's wrong that you don't need a gym to lose weight, you don't have to buy expensive diet foods to lose weight. You can do it at your own pace and in your own way. But you do have to commit to it, especially doing like I'm doing, it'll definitely take longer but you don't have to give up food. Yep I still eat ice cream, I really don't eat sweets anyways but I've went to a couple birthday parties and Alexis' so I've had a piece of cake, so don't give up stuff just don't eat a huge piece like you use to. I still don't think I've ate more than I ever have. I eat about the same, I've just got to get rid of the baby weight I never got off before. It's hard when you're stressed because stress can keep weight on you. I've been trying to keep myself more relaxed and not stress over a lot. But it's still hard because of Kayden, I stay paranoid about my other kids and it's still hard without my baby. My rant is done. But I hope these people who don't have kids will stop judging us and saying we use them as an excuse, you don't know what it's like so chill the eff out. Oh and if you have 1 kid you don't know what it's like having 3 or 4 kids so you probably shouldn't judge the ones who have more. Having one kid that doesn't have any special needs is a piece of cake, unless you have no baby sitter, etc. If you've got 1 kid you can put them in a stroller and go for a walk. So this is mainly for my fellow mommys who have 2 or more kids, and have a harder time.

Just another hard night.

Today was such a good day, I felt like I got a lot accomplished even though I didn't do a whole lot lol! I mean I did what needed to be done. Well it went downhill at about 5pm. All the kids decided they just didn't want to listen to me so they went wild, my mom is sitting on the couch doing nothing because she doesn't feel good so it was 4 against 1!! And ya know if you actually KNOW my kids and Lyndsee then you know that they can get H Y P E R!!!!!!!!!!! Well anyways fast foward, Isaiah decided he wanted to pull over the table we have a few pics of Kayden on and one of those green plants that someone sent from his service...So the dirt went everywhere on the carpet, the table fell and hit Isaiah, he may have a black eye maybe not. But it just upset me because I tell them ALL the time, leave the table alone, don't touch it...but they don't listen. I know Isaiah doesn't know any better he's not even 15 months old. But it's just upsetting because it's Kayden's stuff. Even one of his little puppy stuffed animals sits on it and it got dirt on it. Oh but before this, Tavion knows better than to mess with Kayden's stuff he hasn't done it in awhile, tonight I went in his room because I kept hearing something and he is under Kayden's bed pushing it up with his feet!! UGHHHHH!!!!!!! I know Kayden's stuff won't stay out forever, and I know kids will be kids. But Tavion has been told and told and he's left it alone for so long and tonight he just decides he wants to push my buttons. Thank goodness it's bedtime and they are all sleeping...EXCEPT TAVION!!! Go figure, he doesn't know what sleep is!

So tonight I've been having a hard night, I'm missing my baby so much!! I can't understand why God chooses some people to lose their child. Does he think we're not good enough to take care of them or something? I hope not. I try not to think that but sometimes I do and I can't help but cry!! I try to hold the tears back but sometimes they come out without notice...My heart still aches for him, I physically feel it. I just wish I could find my place again, I once knew who I was and now, I feel like I'm lost inside a cave and I can't find my way out, and no one is coming to find me!! I can't understand this, God took my baby home, but yet he isn't helping me any with this job thing, or getting out on my own. That's discouraging. And I can't help but question my faith anymore or question anything anymore. I mean geez it's been pushing 7 months since I've been searching and applying, I've applied to SO many places I can't remember where all I've applied. How sad is that?! Ugh! My heart just hurts so bad, I know I can't live in the past, and the future hurts to much to even think about, so I try to live in the present but some days that's even too much to bare. What am I suppose to do?! Go to therapy?! WTF for because I miss my son?! No sorry that won't help nothing is going to help me because a fucking therapist doesn't know wtf I'm going through, only someone walking this road knows how I feel and can relate to all of this!! Anyways this blog will be continued on another bad night, which I know I'll have ♥

Think before you speak...

I've got to vent a little. So a girl left me a wall post on facebook saying about Kayden after I told her he went to Heaven waiting on a heart transplant. She said 'poor thing you should have brought him to chb'. For one thing my SON is NOT a 'thing'. Another thing, do not tell me what I should or shouldn't have done. I already have enough guilt as it is. I do feel like I failed my baby some times, especially on those extra hard days.

Let me try to break down Kayden's journey for you into numbers...it may be a little hard because I'm super pissed and upset over this insensitive comment.
1.November 2010--Kayden had a cath, the results were not good, I probably blogged about this, but let me refresh some memories--His pressures were too high to be a candidate for transplant (I didn't know this until June 2011). Options were:Valve repair, valve replacement, transplant. I was told, he was too high risk for the valve repair or replacement and that Kayden would probably not come out of it. I was also told his body was hardly pumping enough blood to his body for him to survive...UVa wanted to get a second opinion and sent his results elsewhere.
2.Children's Hospital Boston (CHB) is the ONLY one who responded. The cardiologist called me personally and explained to me about Kayden's heart and what they thought they could do to fix it, he said there was only about a handful of people in the country with a heart like Kayden's. I guess because he had DCM and the tricuspid valve issue, he had some minor things going on but nothing that really damaged his heart or that I know of.
3. Boston changed his surgery date 3 times, first it was suppose to be in April 2011, then May 2011..And finally when Kayden got hospitalized in February 2011, his cardiologist in Roanoke flat out said he was worried Kayden wouldn't make it until May if he didn't have the surgery, SO he e-mailed the cardiologist in Boston and they changed his surgery to March 2011.
4. He had a cath and MRI done then. The cath results were actually better then, than they were in November. Kayden's heart rate & BP dropped during the breath holds of the MRI, thankfully he made it through it okay. And he was okayed for the surgery on March 17, 2011.
5. April 2011--He was hospitalized 5 days after coming home from Boston. He developed a pleural effusion and had to have a chest tube in for another week. After that is when Kayden went downhill again.
6. May 2011, his cardiologist in Roanoke, finally said he needed to be on the transplant list and e-mail UVa. We got the appointment at UVa on June 14, 2011.
7. When we went in Kayden was in cardiogenic shock (excuse my spelling), he went straight to the PICU after the clinic visit, he pretty much immediately got sedated, put on the vent, and got his PICC line placed. They were worried about him needing to be put on ECMO then or even not being able to come off the vent.
8.UVa did take 2 weeks to get all the tests done and blood work back before placing him on the list. They DID tell me if his liver or kidneys failed we'd have to find a way to get him to Boston. BECAUSE UVa said they would not attempt to take his glenn down and put him on ECMO, because it'd be heroic. So Boston would be the ones to do that.
9.After coming back from the cath lab Kayden had a hard time and didn't fully recover from it, after being taken off the vent a little over a week after the cath, he took a nap & woke up completely out of it. He couldn't control his movements, he couldn't talk, couldn't focus. NOTHING. UVa had no idea what happened and after he'd passed i looked through some papers I have and it said it appeared to be a mild  case of chorea.
10. Kayden became an Angel waiting on his heart at UVa, should i have taken him to Boston because he was a high risk case?! Maybe. BUT when you're faced with that kind of decision, you're head isn't thinking like it should. I didn't put all these pieces together until after Kayden went to Heaven.

I would rather have my baby back than to face all of this. I have to live EVERY DAY UNTIL I DIE WITHOUT MY BABY!!! If you haven't lost a child then you probably should always watch your words because you may not mean them to come out like it sounds...but the way it sounds could be VERY RUDE and insensitive.

Thanks for listening to me vent! Sorry if I missed anything but I had to explain this to people who have no idea! Kayden knows I did all I could for him, nothing could change this. Doctors are not God, God is the only one who has the ultimate say so. HE had the power over my sons life.

CHD Awareness--Faces of CHD: Bryana's Story

On Nov. 9, 2010 My husband and I welcomed into the world our 3 beautiful daughter Bryana Faithmae Crews. She made the perfect addition to our already wonderful family. When she was born we had a lot going on our 2 other daughters (age 9 &5) were both playing t-ball and softball.  We thought we had yet another perfectly healthy daughter until Nov 11 when we where suppose to be dischared.

 Our whole world caming crashing down. They said they heard a murmur in her heart and Wolfson's Children's Hospital wanted to do an ecko on her. At 2pm they said they were going to release me but Bryana was going to be transfered to Wolfson's Children's Hospital. They took her to the NICU to get ready to be transfered. They had to put an IV in her head and that just killed me. Around 530pm they came and got her. We took our older daughters to my parents so we can be with her. When we got there they had done some test but no answers yet. They said we wouldn't know anything till the morning. When morning come we talked to the cardiologist and said that she was basically born with half a heart. She was born with one chamber instead of 2 and 2 main veins coming out of the heart instead of 4, and her aorta was turn the wrong way. I was told all the medical names but I just can't remember them. We were told that she will need in the future at least 2 open heart surgeries and possible 3.

 On Nov 15 we were finally able to take our daughter home. She was doing great. we didn't have any monitors or anything hooked up to her. On Dec 15,2010 She had her first cardiologist appointment since we came home and it was not good. Her oxygen was in the high 50's low 60's. Of course they wanted to admit her into the hospital. When we got there they put her on oxygen and scheduled a cath in the morning. When they did the cath they found that her veins from her heart to her lungs was very narrow and there was not enough blood flowing to the heart. They scheduled to put a shunt in on Mon Dec 20, 2010.

The morning of Dec 20, 2010 came and I felt helpless that she needed help I me as her mother couldn't help her. When I had to hand her over to the sergeon and they went behind the doors I just thought I was going to died. I wanted to be in there getting cute open and hurt and not her. They had her back in the OR for 5-6 hours (what to me seemed like a life time.)  When they were done nothing had us prepared for what we were going to see. She had a breathing tube, she had all kinds of IV's coming out of her and hooked to so many  monitors. All We could do was to touch her. I so wanted to crawl in that bassinett and hold her and take the pain from her.

She came out of the PICU on thurs Dec 23. She was doing reat. We were going to get to go home on Christmas morning but she had a little fluid by her left lung and her ribs. They gave her some medicine to help it go away. The next day they check again and It was gone. we got to go home. And Eryn and Jayda didn't want to Christmas until their baby sister came home. So we all got our Christmas present a day late.

She was doing great when we got home. Then when she went back to the cardio on Dec 31 they had found that the fluid was collecting again. She was amitted again. They put a chest tube in and found that she had chyle. On Jan 5 she was released on a no fat diet.

 We were so glad that she was home and doing great. On Aug 3,2011 she had her 2nd open heart surgery. It killed me once again to hand her over to the surgons again. I felt that I had air taken right out of my bady. This time it lasted bout 6 hours. When we went into see her this time we were somewhat perpared for what we were going to see. When we got in there she was not on a breathing tube. When she hear her Father and I she sat straight up. They had to sadate her. She had the IV's and all coming out and hooked up to monitors again. This time she was in for 9 days and got to come home. She was home for awhile had great Dr. appointments. In Oct 24 she was amitted again because it looked like she has chyle again. They put a chest tube and when it was all drained she went homw Oct 31.  The next week  Nov 7 she went back to the cardio and the fluid was back again. She was amitted and another chest tube was put in.   She spent her 1st Birthday in the hospital. on Nov 11 they put her on no food or fluids. She was given her nutions threw an IV. She was like that for 14 days. She went from being 13lbs11oz to under 13lbs. The surgoen finally decied to do emergency surgery to fix the leaking on Nov 22 she had the surgery. At first it looked like it didn't work because she had alot of fluid come out the day after surgery but on Thanksgiving it had slowed down. Then she was able to come home on Nov 29 once again on a fat free diet.

This year we spent Christmas and New Years home and so greatful that she is doing wonderful. She is going to have her last surgery which is the fontan Summer of 2013 then we should be done.  She has taught all of us that know and love her that anything is possible. Always believe and pray and prayers are answered. She is a happy 15 month old doing just about everything a 15 month old should do.