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
Okay, so Finally...I can call my son a survivor! And at the same time he is still a CHD Warrior. He will still fight his battle the rest of his life since he has dilated cardiomyopathy..but his biggest problem has been fixed. He will still take his meds on a daily basis probably for the rest of his life..and if not then still for many many more years!! He is one of the strongest people I know. Kayden is stronger than ANY grown man I know!! My life has changed forever in a way that many people will never even know! I know we say that when you have a child it changes your life. Which I have to agree it absolutely does. But I never thought back in April 2007 when I found out I was pregnant with my second child that my life would soon be changed in a very different way. In a way that I would then fear whether or not my child would live or not!! I never even thought of my child being born with anything wrong. No that just wasn't possible I was still only 19 so of course I was like well my first kid is fine so I know this one will be too!! My life changed entirely once I found out Kayden had a heart defect & a cleft lip/palate!! I know I've still done some things wrong in the past 3 years. But I can also honestly say that in the past year I have done a lot of finding myself & I have felt myself changing my ways of everything! I owe all of it to my 4 kids. But most of it lately to Kayden..Kayden has taught me to never take anything for granted! He has showed me to never judge people, Kayden has taught me to LOVE unconditionally forever and always!! I've opened up my heart to God which i know can sound a little corny..But I've never been a religious person or I've never actually prayed everyday, or sometimes I'd go months without a prayer. But Since Kayden's heart got worse, I prayed every single night & day that I could have just one more day with my baby boy, I've prayed for him to keep his hand on Kayden & through the troubles he faces. During his surgery I prayed hard that he would keep his hand on Kayden's heart & to let it start again and once the surgery was over. I looked up at the sky out of the huge window and I just thanked him for watching over my child. And suddenly the day seemed so much brighter. And everyday since I've prayed night & day! And my days seem so much brighter. I think I look at everything differently now. I guess I don't have to but in a way yes, I very much have to!! I hope that these doctors have learned from Kayden and his CHD since it is different from Ebstein's but yet very similar..Because times are changing & chances are there will be a baby born with something like Kayden or even exactly like Kayden! I know that I want to make a difference in some families lives who have been touched with a beautiful Angel!! I hope that Kayden's story helps someone else as many families have done for me!! They gave me hope when I was running low on everything. I have had a very amazing support system through friends, family & God and I appreciate them all and I will forever be grateful that I have such wonderful people in my life!!
With that all being said, I'm VERY happy to say Kayden is being released tomorrow March 30, 2011 to go home!! We will be heading back to Virginia early Thursday morning!!
I HAVE BEEN TOUCHED BY AN ANGEL WITH A MENDED LITTLE HEART
Finally we are almost to the end of our stay in Boston!! Hopefully the beginning of the week we'll be heading home!! But over the past few days Kayden's done pretty well!! Friday was the worst. I have to blame it on the nurse he had. She was so mean, I mean I get she needed to change his NG tube because it was irritating his nose and the side it was on was bleeding. But okay, Kayden had a cleft lip/palate so therefore you can see in his pictures that his nose isn't that big and this stupid girl was shoving this thing up in his other side and made it bleed then she was trying to clean the other side out and NOTHING came out and the whole time he is screaming, I let go of him and was hoping he would reach up and smack her. Then okay he hasn't ate solid food in over a week & was given how many different meds for the whole time? Okay dumbass if the first thing that goes in you is apple juice & a lot of it, then I bet your stools will be loose too! This stupid girl is like freaking out because his are loose so she's like oh yea this is definitely not looking good, I'm sending it off for a culture so he needs to be on precautions until we get it back, it only takes a couple hours. YEA So here it is SUNDAY NIGHT and NO RESULTS BACK BECAUSE THEY WON'T HAVE THEM UNTIL MONDAY SINCE THEY WERE RECEIVED AFTER 3PM FRIDAY!! SO THANKS TO THIS SUPID GIRL HE COULDN'T GO OUT OF HIS ROOM ALL WEEKEND!! And to add to it everytime she would come in Friday he'd rock back and forth, turn around to ignore her, and cry!! Not only that but Saturday he did the same thing. So needless to say I wasn't happy with her and could kick myself in the ass for not bitching her out!! Sorry if you get offended by the cussing but OMG really!! I still am mad about it!! But he had a really awesome nurse today and yesterday who let him walk some lmao!! She is awesome and Kayden actually didn't mind her too bad!!
Today he got the pacing wires out! YAY & he lost his last IV! He's ate a lot today so that's awesome!! Hopefully we'll be heading back to VA Tuesday or Wednesday!! I really don't know what else they have to do other than an echo which won't take long & get him to take his meds by mouth...which I think he'll do once we get home..I did get him to take 1 by mouth last night =]!! He's been talking so much today so that's been awesome!! I just can't explain the feeling I have when I hear him say love you, and I get so emotional just knowing a month ago I wasn't sure if I'd have him right now!! I've been blessed with a little Angel and I'll not take him or anything for granted!! I love him & my other kids with all my heart!! Have a good night <3
Wow so much has happened since my last update!! Kayden has done SO well! He is finally awake and he's off the ventilator as of March 22 =]!! He's done so great, I am just amazed. He got out of the CICU today so he is now on 8 East of the Cardiac floor! He's been up walking today and a couple times yesterday! They've started him on a new medicine called Amiodarone & they've started a few of his meds back. Now our goals are to eat, drink, takes his meds orally instead of in his NG tube & also get his strength up. Then we should be good to go home!! So you know we are VERY excited. Moving onto the floor is awesome because our next stop is HOME with the rest of our family <3!! It's been so hard being away from Isaiah and Tavion. I've missed them so much, but at the same time I know it's for the best. Because I would never be able to live a day without my Kayden or any of my children! I'm so thankful for Kayden's doctors who referred him to the doctors here! I'm so thankful that God has blessed Dr. Del Nido with the gift of mending little broken hearts. Because to him it's a job, but he has made a HUGE difference in my life and in my families life! He has saved my little boy, I'm proud to say now that my SON is a heart surgery survivor, he is one strong little Warrior who will continue to fight his battle with heart disease. But at least now thanks to the wonderful hands of this GREAT man he will not need any future surgeries any time soon! Again I want to thank everyone who has prayed for him & to everyone who has put up with me & my emotions through this journey!! It's been such a rough time and we've hit so many bumps, I've broken and pulled myself back together again more than once, but I would have NEVER been able to do it without my son, my family, my God, and my WONDERFUL friends!!
He was tired of us telling him 'Not much longer Kayden, you're doing so good!' LOL
After Getting the breathing tube out!
A little smile <3
His new Dinosaur pillow pet <3 it looks like it's eating him lol
Kayden had his cath, MRI & echo done. He did well with the echo, but during the MRI he gave everyone a scare. His heart rate dropped in the 40s and his blood pressure got really low. They are pretty sure this happened during the breath holds. So since he did that they just done a quick cath. The cath results were not super bad. Of course his pressures in his right atrium were just terrible. His oxygen amount in his blood was good though so that is def great..It was bad when he had the cath done at UVA so that made me somewhat happier that one thing was better! So they did decide to do the cone repair!
Wednesday, March 16, 2011
Wednesday was a good day. By the end of Tuesday night he was pretty much back to his self even though he scared everyone during the MRI lol!! So we just were preparing for his big day Thursday =[
Thursday, March 17, 2011
SO Thursday was definitely the day I have been so looking forward to but yet so dreading!! That morning me & my mom got up and got to the hospital early since Philip stayed Wednesday night. They came and took him downstairs at about 7:15. My mom told him she'd see him later and gave him his kisses when we got off the elevator. Anyways, we took him back to the room where they go before the OR. That is when th moment I was dreading came. It was time to give my baby boy kisses and hand him over to the doctors!! So I did & as soon as I left the room I lost it. I couldn't help but cry for the next hour & a half..Well actually I cried some off and on all day as I got updates. I got updated when they started, when he was put on the bypass machine & when he came off of it. I think the hardest part was when they said he was on the bypass. I guess because I knew them his heart was stopped. I was praying hard during this whole thing that he would be strong and fight. I swear Thursday went by so SLOW!! But once the surgeon came out I was freaking out, my stomach dropped. But once he said he was stable and he done great I got tears in my eyes because I knew he was going to be okay!! Dr. Del Nido (surgeon) said he decided to do the glenn also so he did that, he also said that his right atrium was massively huge which we knew that. He said that Kayden had a lot of scar tissue which he said he wasn't sure where it came from but he thinks it was from where his heart muscle had gotten so big & stretched that it just turned to scar tissue. So he removed most of it, he took out some of the right atrium so it's not as big & he said the valve was repaired and it's very little leaking which is amazing!! He also said the right side of his heart was compressing the left side, so now hopefully the left side will get somewhat better over time. He was really please with Kayden & how he done though. So that obviously made me feel amazing!! It was about 3:30-3:45 when I got to see him Thursday afternoon. I got tears again once I saw him. I knew he was going to be fine. He was just sleeping it looked like, even though it's not willingly lol! I'm so proud of my son & I'm so thankful to have the people I do supporting me!! I also thank everyone who has prayed for him!! HAPPY RE BIRTHDAY KAYDEN JAMES!!
Friday, March 18, 2011
Today hasn't really changed. He's done good for the most part. His blood pressure has kept getting high & low but it's normal they say & they also think it's because of the line in his neck..The doctors & surgeon are extremely happy with Kayden & pleased with how well he is doing and has handled the surgery!! He's definitely doing better than they expected. They were expecting him to give them more trouble! He did lose one IV today & he got his LA line taken out. Not much new happened today he's still sedated & paralyzed. But tomorrow they are thinking of taking the paralysis away and his body taking control some. Hopefully he'll be awake Sunday!!
Well we've been here in Boston, MA for a whole 24+ hours now. We had a great trip except in the beginning we stopped at Mcdonald's for breakfast & Kayden wanted fries and the stupid people didn't make him any. That made me so mad..I've worked fast food so I know it takes 2.5 mins to make them...So he left there screaming, scratching me, hitting me & pulling my hair!! I almost threw my food at them and asked for a refund!! But I didn't because Alexis needed to eat..Thankfully we found us a Sheetz and got him a bucket of fries lol!! Once thing I have learned so far about driving here is I HATE driving in New York lmao!! That sucked bad, yea I got lost haha..Oh and another NO ONE follows the speed limit lmao..They are a bunch of crazies driving..well most of them!! I did my best but I def don't wanna get a ticket up here lol!!
Monday, March 14, 2011
So today, we have met with so many people I only can remember like 3 or 4 of their names haha!! But the most important I met with a couple of the cardiologists & the ones who do the caths...Today Kayden had an EKG, labs, chest x-ray & obviously vital signs, height & weight done!! But I'm proud of him we were there for HOURS and he did good he took a nap or 2 and slept well..Tomorrow is a big day for him, he'll go for his echo, MRI & cath..So if the results come back good they will go on and do the cone repair which is where they repair his tricuspid valve & they will probably do a glenn procedure as well!! IF these results come back looking like he'd be too high risk then we will head back to Virginia and UVA will have to do a transplant!! So we need all the prayers we can get!! I have faith in these doctors & in my son! I know they'll make the right decision and Kayden is strong and he's not giving up on me!! I think what worries them as well as all the other doctors who've seen him is..With Ebstein's Anomaly it's usually the right side only but Kayden also has left side dysfunction. So hopefully he'll be fine!! But what makes sense to me that someone told my mom is 'if you worry, you don't have faith'...So from here on I'm letting go and letting God because I can't do anything to help except stay strong beside him all the way through!! This is ALL in God's hands now! He controls what happens next!! I love my son and I'll fight for him until my heart stops beating!! He is MY life!
I'll add a picture of him to this later, I haven't uploaded them today! I'll update in another day or two!! Goodnight!
So I def can not believe Kayden's surgery is in 1 week!! When I think about it, my chest hurts and it's hard to breathe. So maybe I shouldn't think about it..but how can I not when I know it's coming!! I feel like I'm in a bad dream and I just can't wake up! ughh...someone PLEASE WAKE ME UP!! Tell me he really doesn't have to have surgery, tell me the past like 8 months have been a nightmare that it's not real!! I just wish I could skip over Thursday. I honestly can't promise I'll remember how to breathe through this or even speak until I know he is okay. And on top of all of that I'm going to be miles & miles away from my other boys, since Alexis is coming with us. I already miss them!! I put Tavion to bed tonight and just gave him the biggest hug & biggest kiss and told him I loved him & I was gunna miss him so much while I'm gone =[!! And Isaiah I'm really gunna miss him, he'll be 3 months old on Wednesday, so I'll miss just about all of his third month of life. Although I know it's worth it all because once Kayden is home I hope & pray he'll feel better and be up running and playing like a normal child after awhile of recovery. But I'll be home with my babies ALL 4 of them!!
Anyways, so my sister was doing a tie dye shirt tonight for her job. They are doing something for the March of Dimes at work & whoever raises the most money will get to wear these shirts to work. So I got an idea & we are going to do it once Kayden's surgery is over & we are home. We are going to do some red & white tie dye shirts & I'm going to design something to put on them. All the money donated will go to the Children's Heart Foundation. I'm super excited to do this! It's about time I try to make a difference for other families & hopefully one day all CHD's or most will be detected before birth & hopefully there will be more ways to repair heart defects!! & at least give all the babies born with a CHD a better chance at life!!
So it's still Sunday March 6. So this time in a week we will officially be in Boston, MA & I will be trying to figure out how I'm suppose to prepare myself & my little boy for his surgery. Or can you really prepare yourself? I've got a good answer for that NO you can not. I feel like I'm falling apart some days, where others I feel stronger than ever like I can face anything & everything. And I know people tell me 'you're strong Misty, you can get through this' but really am I that strong? I've always been so vulnerable, I've always been the one to cry at the drop of a hat. I've always been the one looking for help or needing it. I've never been the one to support someone through something so big & so important that is until I had my kids. Somedays I feel an overwhelming amount of love from them and it feels so good to know that no matter what mistakes I make, I'll still have my children. But in a week I'll be facing a life or death surgery for my son. There will never be a guarantee for anyone that they will see tomorrow. But this is something so bad that I know his heart will be stopped to try to fix the problem. So for however long this surgery takes. My child's heart will not be beating & mine will. I don't know if I can handle that. Can they stop my heart also, just at least until his surgery is over and he's okay? I can't live a day without my children all of them.
On March 1 it was 6 years since I had a miscarriage. It was my first baby, I was 9 weeks pregnant. No not that far and I don't know whether it was a girl or boy so some people may think it's not too bad. But that day is so clear in the back of my head. I was scheduled for the d&c on March 2. But instead I passed the baby March 1 at home. I just remember screaming and crying in the bathroom sitting on the floor I couldn't walk. I tried and I fell to the floor after I got through the hall almost to the garage so we could go to the ER. I couldn't walk literally. I just laid on the floor curled up crying. Finally my ex which is the father of all of my children, had to carry me to the car. I can hardly remember the ride to the ER I was losing a lot of blood so everything was so weird plus the pain I was feeling I couldn't stop crying. That day I thought was the hardest day of my life because I lost my child. The baby I was so excited about. The day that the doctors told us 'I don't see a heartbeat' that day is so clear in my head. I thought then would I ever have kids? Why did this have to happen to me? Is something wrong with ME? I didn't know what to do or expect...Then once I got pregnant with Alexis 2 months later I was scared to death because I wasn't expecting it & we def weren't trying. I was afraid to tell people until I knew she had a heartbeat. I prayed so hard I remember for her to be okay. And once I saw & heard that little heartbeat I was so relieved and felt on top of the world!! Alexis was born & was perfectly healthy & still is to this day. I've always been so scared to tell people when I'm pregnant before I go to the doctor and see & hear the heartbeat. Only because I know anything can happen at that first visit. Like this, when I took the test & it was positive with Kayden. I made my appointment the next day when I went for my first visit, Kayden was not there REALLY no baby was there but I was definitely pregnant. So scared? YES I WAS, I thought something bad was wrong and I was going to lose another baby. So I had to come back in 2 weeks. Which I did & there was my little bean with his little heart just a beating <3 so I was so happy. Little did I know what was facing us. Little did I know 3 short years later I would be wondering if his little heart is going to still be beating in 2 weeks. I pray every night & every day. I don't think I've prayed this much in all my 23 years honestly as I have the past 8 months.
Anyways the point is, I've obviously been through a lot when it comes to my children, I know there are people who've been through worse so please don't forget them & you reading this could be one of those people. So your reality could be so much worse than what my reality is at the moment. But I lost my first child at the age of 17. I had my second child at 19, he was born with health issues including; bilateral cleft lip/palate, dilated cardiomyopathy, & tricuspid regurgitation or as they said then Ebstein's anomaly. He also had pyloric stenosis which required his first of many surgeries at the age of 1 month!! He has had 3 surgeries to repair the cleft, he had his cyst beside his ear removed. So I've saw my child be taken from me a number of times for surgeries. I've heard him scream & cry for me once they take him...But what gets me the most is right before his ear surgery which was the last surgery he had. It was the first & only time I've ever got to go back to the OR with him until he was asleep. Little did I know once he woke up from that surgery he would be a completely different little boy. It breaks my heart, I never knew in less than a year he would be having open heart surgery because he fell into heart failure a month after that surgery.
I feel so many different emotions all at the same time. I feel sadness because I want to take his place so bad, I wish it were me not him. I miss my baby boy who would run around playing with cars & go outside and laugh & play. I feel stressed for all of the obvious reasons, I feel guilty even because I feel like it's my fault since I let the doctor do surgery on his ear when they were infected & the cyst was getting infected again. BUT he was the doctor shouldn't he have known? I also feel angry, I'm so angry at myself for feeling angry. I'm angry because it happened to my child. WHY IS HE SICK? WHY?? WHY DID IT HAVE TO BE HIM? I know I'm blessed to have 3 other healthy kids so that is why I'm so mad at myself too because I should feel blessed that 3 of 4 are completely healthy. But then again would I be normal for not feeling all of this. And as bad as it sounds & I feel so guilty for even putting it out there, is I've tried to think of what will happen to me if Kayden doesn't make it. I NEED him in my life, I can NOT and I do NOT want to live in a world without him. I shouldn't even say that because my other children need me...BUT they also need their brother as well. I break down and cry for no apparent reason, but inside I know it's because I'm scared to death for everything ahead of me, I cry because these feelings most of the time hit me at the same time & I don't know how to handle them.
So if God doesn't give us more than we can handle, then I don't think he will take my child back home. He knows I need him & he knows I can not handle living without him.
FINALLY, we have the new date for Kaydens surgery! MARCH 17, St. Patricks Day! Nice right? Well maybe not so nice really..You see I have BAD luck when it comes to the number 17. So this kind of stinks and it scares the crap out of me. I'll start with back in Decemer 1998. I had surgery that December, from where I had a hernia when I was born & had surgery at birth, well scar tissue had grew on my intestines & they had shifted so I was in the hospital that year from December 12-December 17. So that all started my 17 curse lol although some are good like my getting out of the hospital was a great thing! But then 1 month later on January 17, 1999, I lost my grandpa. He was such an amazing man & I loved him more than anything. May he rest in peace <3. February 17 I was due with Alexis & also it's my aunt's birthday. March I will say this one last. April 17 nothing so far has happened (fingers crossed) & on May 17 was my sisters ex's funeral. NOW with March 17..This year March 17, 2011 will be 10 years to the date since I got hit by a pick up truck. Niiice right? And my little boys surgery is on that date. So needless to say I'm scared shitless because out of all the days in March it's on that day 10 years later...Although I was fine so I pray my little man will be fine! I had a bunch of scratches & bruises oh yea and a fractured back. So yea thats the worst that happened & the doctors told me my back would never be the same, but hey at least I'm walking here today. So I pray Kayden gets through his heart surgery with no problem! But one thing that really gives me hope other than the other CHD babies who've made it through their surgeries, is this; my mom has a Christmas cactus that was my grandpa's, well she had it 10 years ago. Well it's only suppose to bloom at Christmas time & it never bloomed from the time she had it & on March 18, 2001 the day I got home there were blooms on that cactus. So I know my grandpa was there with me on March 17, 2001. He was there with his hand on me so I didn't get hurt badly. I've always said since then that my grandpa is my guardian angel! I've also said he watches over Kayden & is Kayden's guardian angel. I say that because my little man has made it through 5 different surgeries in his life, his heart surgery will be his 6th surgery. Also, I made a CD about a month ago with 18 songs that in some way remind me of Kayden. Well I couldn't find it after having it for about a week. I mean seriously I went through EVERY CD I have in my car & I still couldn't find it! I was so upset & mad!! Well anyways last night on my way to Wal-Mart I changed my CD because I was tired of Taylor Swift haha Alexis LOVES her. The very first CD I pulled out of the compartment that I was a stack of CD's in was the CD I had made with those songs!! And YES, I went through every one of those!! So you tell me that my grandpa isn't watching over us!! That is a sign to me of him telling me, 'you can get through this & he will be okay'. I can't help but think my grandpa will be in the OR with his hand on Kaydens little heart just like I know God is watching over him & will be guiding those doctors hands and he will help my son make it through this surgery!! My son will be a CHD Survivor not only does he deserve it after the fight he has been fighting. But because he IS a survivor just like me!! When I was born the doctors told my mom I probably wouldn't live. But since I was stubborn & had the determination I lived. Yea that may sound stupid but it's true, babies fight, toddlers fight, kids FIGHT!! Sometimes they are stronger than adults, because I know Kayden is stronger than me. I can't do this without him <3 So I hope that this year will break my bad luck with the number 17 & make March 17 a HAPPY day for me instead of a day that I hate looking back on! Also I'll soon be posting pictures of Kayden because I plan on taking pics every single day leading up to his surgery & I will take tons of pics after too!! PLEASE keep my son in your prayers, tell your family & friends & please if you go to church put him on the prayer list!! He needs all he can get! PLEASE let God hear his name ALL day on March 17, 2011!!