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, May 24, 2011

Remember When...

That's about how I am feeling today...Last night me & my mom found some OLD pictures of myself & of the kids. Like pictures of when I was like 14-16!! So yea those are OLD. But you know those I didn't care about, what got me thinking was when she showed me a picture of the Easter bunny, Alexis & Kayden...Then I started thinking back to when he was a baby & how much I couldn't get enough of him. I still can't obviously lol! But what is really sad is somedays I find myself wondering what things would be like if Kayden never had a cleft lip/palate or if Kayden never had heart problems. I mean for a long time we knew his heart was big but it was stable & wasn't holding him back...Then she showed me another picture it was when Kayden was a little older with the Easter bunny, Alexis & Lyndsee. That really made me want to cry. He was crying obviously because the big person in a bunny suit scared the crap out of him. But it made me sad because he looked so healthy, his little legs were chunky and his color was good. He was good! I remember when he was born & how scared I was because I didn't know what to expect. I always knew once I found out all his health problems that it was going to be a bumpy ride. But I told myself we would get through it & we'd be okay!! And once his heart was getting better I thought we were going to be fine. And then last year changed our lives more than most people could ever know. I can't believe it has almost been a year since Kayden was diagnosed with Congestive Heart Failure.

And even more I can't believe that he will most likely be getting a heart transplant. Waiting for the appointment is hard enough for me. I can't imagine how it will be waiting for that new special heart!! How do I explain it to him. That's my question. He is 3 1/2 so he still doesn't grasp the concept of everything. But he understands his heart is sick. So I guess I'll have to tell them they are going to give him a heart that's not sick? I mean I don't know. When he had his surgery in March, I tried explaining to him that the doctors were going to fix his heart so it wouldn't be so sick & he would feel better again! Well that was blown out the water because he doesn't feel better. He still sits around doing nothing. I had to make him get up today and walk around the house because I'm having issues with his oxygen again! It was low to mid 80s which is not okay. Not for him. His oxygen level should be normal & it's definitely not. It was more normal before the surgery!! I know I can't fault anyone because I knew it was possible that he wouldn't take to the surgery. And I ALWAYS tell people, to expect whatever is the least possible thing with Kayden. Because whatever has the least chance of happening then it will for sure happen to him!! I don't know how to get myself out of the habit of thinking back to when he was younger & how he was then. I try to accept he'll never be that child again I guess, I mean maybe after the transplant he will...I guess. I don't know, I just hate that he has lost so much time already because he's sick.

I'll keep fighting for him until the day my heart stops beating! Kayden is a little warrior and he is going to fight until he pulls through this & beats it!! I will also continue to fight for all of the other warriors & all of the Angels touched by a broken heart <3 There are too many still fighting & there are way too many who've lost their battle with CHD!! <3 Say a prayer tonight for all of those families!

Monday, May 23, 2011

I love them so much it hurts =[

Yesterday Kayden went to the cardiologist for a check up!! He has been kind of on and off with feeling good lately, and I've had issues with his oxygen the past few days/nights! To be honest with myself, I haven't saw much of a difference since his surgery, I mean he has in some ways gotten somewhat better but in some ways he is worse. Like the oxygen situation before his surgery he had normal sats, now he is like 80s to low 90s. Well we aren't the only ones noticing. His cardiologist today said the same thing that I was going to talk to him about. He has seen Kayden hasn't made much progress..His leakage hasn't improved much at all & he agrees that he has more needs now than before, & his oxygen should be normal now since there is nothing blocking the glenn shunt.

So once again I heard those words about the transplant, so we did an echo today mostly to see if there was any pleural fluid. There wasn't any that could be seen on the echo, but his tricuspid valve doesn't come together now, so pretty much he didn't take to the surgery. I mean he did for a little bit but now he isn't. I don't know WHY it happened & I don't think any of the doctors know. But yet we all knew it was possible. So afterwards we were talking & I asked his cardiologist, if he thought Kayden needs a transplant & his words were there is not a doubt in his mind now that he doesn't need one. So he will be sending his echos & xrays & all that to UVA & also Boston. We are going to UVA on June 14 for his ear situation & he is gunna try to get him in with the cardiologists that day as well. Most likely now they will be evaluating him for a transplant. & he also told me today that he has never seen a more sicker out patient than Kayden in his life..heart wise that is....So those were real encouraging words. I know Kayden's heart is huge & bad it takes up almost the whole left side of his chest..His x-rays are scary to see how big of a heart he has & his heart function still SUCKS! It's just all so much to take in....

You know I hate those words, he needs a transplant. I really still haven't had a chance to let it settle in. But I've also accepted this, I will NOT try to prepare myself for this. I tried to with his surgery in March & that plan went all to hell, as soon as I walked out of the room leaving him in there to go back for surgery I broke down. I can NOT prepare myself mentally or emotionally for any of this. I LOVE KAYDEN & I would love to take his place, I've lived my life, he deserves to live his as well!! I have to stay positive and know that God is looking over him. He has gotten him this far, so why would he take him now? Kayden has proved his self a fighter & he isn't giving up I REFUSE TO LET HIM!! I do believe in everything happens for a reason, so no matter what happens I have to realize that, whether I accept it or not. HOPEFULLY it's in God's plan for Kayden to live a very long happy life. But it's already written, whatevers gunna happen is gunna happen I can not change that!! I do hate the fact of feeling helpless, I can't do anything..It's out of my hands and i HATE the way I feel right now!! 

I hate the knowing I will be away from my kids for awhile. I hate the hurt it makes me feel..It's like someone is stabbing me and just keeps turning the knife!! It hurts so bad, I love my kids & I'd do ANYTHING for them & being away from them is harder than you could imagine!! I know it is for the best because Isaiah & Tavion need their big brother & Alexis & Kayden love each other I think more than any of my kids haha, they are so close! So Kayden has to be okay, not only for me but for Alexis, Tavi & Isaiah!! 

I guess that is where my subject comes in, I LOVE THEM SO MUCH IT HURTS!!! I hate thinking about being away from them again, I know I will at least be close enough to come home and see them since UVA is only 2 hours away from home, but still I can't be there EVERY DAY!! WHAT IS IT LIKE TO BE NORMAL AND BE WITH YOUR KIDS DAILY AND NOT WORRY ABOUT THEM? I forget what that life was like. I remember a little of how it was before Kayden got sick, but it HURTS me to to think of those days, and sometimes I honestly think I block those days out because I want to cry everytime I think of them!!! Today his cardiologist said he would give anything just to see Kayden walk down the hall, and I was like yea I know, he use to & his cardiologist was like yea, and I was like I don't know what happened after his ear surgery..After that is when everything went downhill..And he said he just doesn't know but something just went wrong! And he is absolutely right!! Something went wrong & I DON'T KNOW WHAT IT WAS!! I want to get his medical records so bad but I'm kind of worried at what I will find. So eventually I'll get them!! Next month will be 1 year since his ear surgery & 1 year since I lost my active little toddler who ran around outside & loooved it!! 

Saturday, May 21, 2011

Confessions & goals

So I'm going to start this blog off kind of off the subject. Tonight was Alexis' ballet recital, which they did amazing <3!! It makes me so proud to see her accomplish things even as much as a ballet recital. I know in life she will accomplish much bigger things but right now that is huge for her! I was freaking out the whole time that her bun was going to fall down or her crown would fall off during the first dance they did lol!! But luckily I put enough hair spray in her hair that it didn't come down & I pushed the crown so far in her hair that it did not fall out!! I was holding my breath through it all LOL!! She had such a good time, we took her out to dinner afterwards. Since my brother didn't make it to the recital because he had to work we decided to go to Applebee's since he is the manager that way he got to see her on her big day!! Those girls really do a great job, not just the little ones but the older girls also!! They are all so talented! I know I wouldn't be able to get up there and twirl around on my toes 6 times in a row lol!! When we got home tonight she was having fun in the living room with a teddy bear pretending to do a recital LOL!! She was singing & dancing and making her bear dance!! She is too adorable <3 I hope she sticks with dance because she has some talent & she loves the stage!! She loves being in the spotlight, she may be shy at first but she opens up quickly most of the time lol!! I am one proud mommy tonight!!

So anyways I have a few confessions, first is I have thought over and over & tried OVER AND OVER again to lose weight after my kids & I'm struggling!! NOTHING works for me, I don't have time to exercise anymore I mean really when should I do it, while I'm heating up a bottle, or maybe on the way to a doctors appointment or taking a certain little girl to ballet class..I mean my life is overwhelming and to add one more thing will just put me over the edge I think! So I've came to the conclusion I'll lose it when I can..I hardly eat so it's not like I'm stuffing my face sitting on the couch watching tv all day long!! I've considered weight watchers because I hear it works...I know I shouldn't be bitching about this since I'm not really fat I just would like to get back to my pre pregnancy weight or even like 120 is fine with me lol!! NO I won't say my weight but if you seen me you'd think I had like 2 kids not 4! Another confession I'm SO EXCITED TO GO BACK TO SCHOOL!! FINALLY I get to go back next term I feel like I've been out forever, but it will feel SO good to get out of the house & be around other adults again lmao!! My brain kind of turns to mush after being around 5 kids all ages of 5 & below!! I've also wanted to get this out there too..I want to move FAR away from Virginia but I'm scared to because of Kaydens doctors being here & I'm afraid to change them since I love them all so much!! So for awhile I'm stuck where I am...

I was thinking the other day I need to set some goals in life for myself. I mean I had goals and then Kayden got sick so my life got put on hold so I could get him taken care of. And since right now he is pretty stable I think I can start making more goals...Here they are: 1. Graduate college 2. Find a job 3. Save money 4. Move out & hopefully buy a house 5. MAYBE go back to school for nursing. All these I hope to achieve in the next 5 years! I really want a better life for my kids & I really hope all this gets taken care of!! But I know that in reality anything can happen that will push things back, so I'm not totally unrealistic!! Anyways I'll have pictures up soon of Alexis' recital, I left my camera in the car & it's my bedtime!! Goodnight <3

Tuesday, May 17, 2011

2 Months Post Op

Wow, I can't believe it has been 2 months since Kayden's surgery. It still seems so unreal, like it happened to someone else. But in reality it did happen to us, & in reality 2 months ago I found myself wondering if I would have my son by the end of the day. I have never experienced something so hard in my life. Seeing my son go through so much in the past three years have been HELL!! I wish I could take his place. But he has been such a little trooper & I'm proud to say I'm his mommy. Since his surgery, it hasn't been easy that is obvious. He has had some bumps but he is still fighting his way through. He has a very strong will to live & I believe he will fight until he is as good as he will get!!

So you know I've told you about the cyst he had removed last year and how it gets infected and comes back!! Well guess what...IT'S BACKKKK...and I call to make an appointment today at UVA & the nurse calls back and tells me the doctor is booked up & can't get him in until July & I need to take him to his PCP(primary care physician) that he should be able to treat it.....OMG you can NOT understand how angry that made me to hear that on my voicemail...This stupid thing CONTINUES to get infected it has came back continuously after the ENT here has drained it & had him on different antibiotics...That is WHY they referred us to call UVA when it gets like this again...Damn stupid people really? So I take Tavion today for his 2 year check up and I told his doctor about it and since he sees all my kids. He told me to just bring him in and he'll get a culture & try to get us an appt at UVA if the insurance doesn't give us a bunch of crap about it....STUPID MEDICAID they can kiss ass too..I can't believe they give you mouth because you need to go somewhere better for health care..Because yes in my opinion UVA is a little more experienced then some of these doctors in Roanoke & they have every right to be. Kind of like Boston, I think they are better than UVA. Boston was the best place I have ever been for health care with Kayden...But I was thinking today that I am going tomorrow to sign a paper & get Kayden's medical records mostly because of this cyst thing..I want to see what this doctor put in his records because I think he made a very bad judgement call on doing the surgery because it was infected & so were his ears..I think that is what caused his heart to go downhill & I think that is too why this thing keeps returning!! Let me tell you this time it looks ANGRY!! So we will see how this goes..

Anyways, Tavion's appointment today went well he is 27 lbs which is good I forget his height but it was average as well...He is developing fine & he won't need to go back until he is 3!!! He does want him on Claritin the rest of the spring due to allergies & also if need be then in the fall. So hopefully that helps with his runny nose lol!! And the other kids are good, Alexis' ballet recital is this Saturday so I'm super excited for that & Isaiah is getting over his cold which I think too he has allergies pretty bad! Poor thing I feel bad for him because he is so little & wheezes so he has to have breathing treatments =[!!

I hope you have a good night! & Here is a picture of Kayden's scar today <3

Friday, May 13, 2011

Happy 2nd Birthday Tavion James!!

So today 2 years ago I gave birth to my second son!! He weighed 8 lbs 4.2 oz & was 18.5 inches!! His name would be Tavion James Barnes!! And here we are 2 years later celebrating his second birthday!! I can't believe what has happened since he was born!! This past year is like a blur with so much that has happened!! I honestly feel like he should still be the baby lol!! I do have a confession though, I always wanted Tavion to be a girl lol!! I always wanted Isaiah to be a girl too..I really wanted Kayden to be my only boy, because he is so special. But I've learned that you don't always get what you want & that is something that was out of my control. And for some reason God wants Alexis to be my only girl. So one day I will learn why that is. I do also believe he blessed me with 2 other boys to help Kayden through as he gets older. I know there will be times kids will pick on Kayden because he is 'different' but he has two brothers, yea they are younger but not much younger, but they will look out for each other. I am raising my kids to be there for each other & they all are understanding Kayden's heart is sick. Tavion even understands to be easy with him. And as Isaiah grows he will learn as well to be easy with Kayden until he is better.

Anyways, an update on Kayden. He went to his cardiologist this past Tuesday. Everything went well, his chest x-ray actually looked a little better. The pleural effusion is still there but it looked a little smaller so for now it's not too much to be worried about. We also took his ng tube out to trial him. So far he has done well, he has been eating breakfast, lunch & dinner & also snacks in between. He has been drinking okay, he could do better but that is what the trial is, it's to see how he can do on his own. So keep your fingers crossed. Since he has had the tube out, he is completely different. He has been cutting up & picking on people, today he kicked me 3 times LOL. He is such a turkey <3 I love him so much!! I know he isn't exactly where they would like him to be right now, I think they were expecting him to be a lot better than what he has done, but he is doing well overall. I think it's just taking him a little longer than expected. He has been using his oxygen still at night but that's okay, during the day he has been fine. They want his O2 at 93 or higher, which is still good either way, I know a lot of other kids are normally lower than 90, so Kayden is lucky. I would like to thank you all for the prayers <3 they are working! I love you all <3 Have a great weekend!!

Sunday, May 8, 2011

Happy Mother's Day!!

Happy Mother's Day to all the mommies who follow my blog!! I hope you enjoyed your day because we all deserve it! Today was my 6th Mothers day. Can you believe that? Wow. Alexis made me a mom when she was born on February 9, 2006. Although before that I was an Angel mom. So technically this would be my seventh Mothers Day if that little one would have been born =[. Being a mom is the hardest thing I've done in my life, but it's the most rewarding. I love seeing the smiles on my kids faces, I love when they hug me & say 'I love you', or even when they come to me when they get a boo boo. I know at the end of the day that if my kids go to bed with a smile on their face then my day is complete & I've done everything I needed to do. I've seen the easy side of being a mom & I've also seen the hard parts of seeing a mom. Thanks to Alexis, Tavion & Isaiah for showing me the easy sides of it. And Kayden for showing me both. Kayden has really shown me the inner strength I truly have. I couldn't have done a lot without him. I've faced doctors telling me my child may not live. I've cried fearing for my child  & I've cried because I'm so lucky to have my children. I don't want anything but the best for ALL of my kids. I always kiss them goodnight & tell them I love them. And for Kayden I ALWAYS tell him to hang in there & stay strong. My nightly routine with him is out of love, I give him his meds because I WANT him to be okay. I don't like fearing for my childs life, but God chose me for him, he chose me to care for one of his most precious Angels. I will take care of that baby until my heart stops beating. My son is strong & he has made me that way as well. I know that this Mother's Day had a different meaning for me. After everything I have been through in the past year it has opened my eyes to see what the important things are in life. I've let go of people & things in the past year that have probably surprised a lot of people. I guess that is because I've realized love is all that matters, the love I have for my children is ALL that matters. THEY are my life & no one else. If there was no them then there would not be me. I don't remember much of my life before I had kids anymore, it feels like they have just always been there. Again Happy Mother's Day mommies <3 take time for yourself tonight before bed because you deserve it especially those mommies in a hospital tonight who are praying to God for your child to be okay, and especially those Angel mommies who are wondering if you're still a mommy since your baby is in heaven. I have an answer, yes you are a mommy, you have a baby...an Angel baby when he/she was conceived and that little one had a heart beat you became a mommy <3

And just a little update on Kayden, he hasn't felt good the past couple of days. I had to call his cardiologist last night around midnight because he was breathing hard & oxygen was low even on oxygen. And he has a terrible cough. He said since he was sleeping to wait and see how he was this morning. So this morning he seemed fine & his cardiologist called to check on him & Kayden was fine..Throughout the day though he started not feeling well again and has been on some oxygen on and off today. Tonight he is on 1.5 liters & his oxygen is in the low 90s. Please keep him in your prayers, he sees his cardiologist on Tuesday or sooner if needed!

A Mother's Prayer

May God grant you peace 
in the midst of a storm. 
May God give you strength even 
when you’re forlorn. 
May you answer the door when 
Jesus comes knocking. 
May wisdom guide when 
your mouth is talking. 
May discretion protect you 
and keep you pure. 
May you never stumble 
or fall for a lure. 
May your heart remain humble 
to the very end. 
May uprightness and truth 
be what you defend. 
May the world not ensnare 
or change who you are. 
May the light that's within you 
shine like the stars. 
May angels surround you 
body, spirit, mind. 
May favor and peace be yours to find. 
May rejection and pain 
never reach you. 
May your spirit grow bold 
for what you’re called to. 

If you haven't heard this before please listen to the song, it is the most amazing ever & I absolutely love it <3

Wednesday, May 4, 2011

It's May...already?

Ughh!! Where is this year going? Wasn't it just Christmas? I swear the days just keep going by its just ridiculous!! Well, lately things are going good. Kayden is getting better since they increased his lasix. He is still using oxygen at night time. Except tonight before bed he was at 96 so I left it off, when I give him his 11pm medicines I'll check it. They want it above 90, so that is what we are aiming at! If he stays off of it tonight that will mean the lasix is definitely helping get that fluid off of him!! He has to go to his cardiologist on Tuesday so pray that all goes well there.

On a second note, Tavion will be 2 in almost a week!! I can not believe it!! He should still be like 6 months right? lol. So much has happened since he was born I can't keep up anymore lol. This year we are gunna be doing Toy Story for his theme! Last year we went to the zoo in North Carolina & we done Curious George. He had such a great First birthday!! This year I think we are going to stay home since Kayden is still recovering. Tavion doesn't mind..We have like a park in our backyard anyways, swingset, trampoline & we'll be getting a sandbox soon..& Never forget the 3 little pups, they are getting bigger everyday but are soo adorable!!

The other kids are good too. We are getting prepared for Alexis' ballet recital on May 21, which I am super excited about. She is going to do so good & look beautiful as always! She is such a beautiful ballerina! Her & Lyndsee's little fun day for preschool is coming up, I can not believe she will be in kindergarten this fall!! I miss her being a baby. But she will always be my baby girl no matter how big she gets!! Anyways please continue to pray for my little man as he continues to heal & for all of the other CHD families!!