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

Wednesday, February 1, 2012

Kayden's little BIG Heart full of LOVE

FINALLY it's February! It is officially 'heart month', to some of you that may mean Valetine's Day, candy, etc. Well to me and so many others it's about raising awareness for Congenital Heart Defects & Disease! 1 in 100 babies are born with some type of CHD. It is the most common birth defect. Every day of February I'm going to try to post at least one story of a CHD Angel, Child, or Adult! To start off you'll officially hear Kayden's heart story minus all his other stuff. I'll try to go into detail more than what I've done before to try and get you guys a better view of what our life was like since July 2010.

Kayden was diagnosed prenatally with his CHD, we knew he had dilated cardiomyopathy, and a leaky valve, his tricuspid valve. Kayden confused his cardiologists I think since day 1 of my pregnancy that they started following him, because he looked like he had Ebstein's anomaly. It was later that we found out it was technically a displaced tricuspid valve with severe regurgitation.  Kayden's heart improved his first 2 1/2 years of life, he was just like a normal boy other than taking 2 meds lasix & enalapril up until age 1 then it was only enalapril. He would run and play and he loved to jump on the trampoline! Kayden was a miracle, I always knew that. He was so sweet, and caring ♥

In July 2010, I noticed his feet & ankles were a little swollen, he looked blueish some days, his appetite decreased, and he was sleeping entirely TOO much. He'd go to bed around 8-8:30 wake up at 10am, take a nap from 12pm-3pm, lay on the couch and go back to bed around 8ish. One night I was laying next to him on the couch and I noticed I could see his heart beating through his shirt and he was laying still, it was then I was positive I needed to get him to the doctor tomorrow. All of these symptoms I noticed within a couple days. When I got Kayden to his doc the next day, he noticed his liver was swollen, he was worried about his heart, he was afraid blood was backing up in his liver (or something like that) all I know is i had scheduled him a cardiology appointment which was the following week & his pediatrician got it moved to the following day. 
I was definitely NOT prepared for that appointment. That is when Kayden was diagnosed with Congestive Heart Failure. His tricuspid valve was leaking very bad & his heart function was decreased. We were told to take him to get an xray across the street and go straight to the PICU, we weren't even allowed to check in. So that's exactly what we did. I hardly had time to actually take in what was going on I was so scared and worried. I didn't know what to think. All I knew is it was BAD, my grandpa died in 1999 from CHF so I was scared to death! Kayden was transported to UVa Children's Hospital late that night July 28, 2010 if I'm not mistaken. He was there a little over a week, they started him on a few new meds and got him okay enough to go home. They wanted him to have a diagnostic cath done to see what should be done, our options were repair his tricuspid valve, replace it, or transplant.

Kayden's cath was sceduled for the beginning of November, he done well the rest of August after we got him home. The morning of his cath he woke up with his ears draining, he had tubes so I knew it was an ear infection. SO we went on to the hospital like we were suppose to and they decided not to do the cath that day just to be safe. So we headed back to Roanoke. By that afternoon his fever was 103, so on to the doctor we went. He ended up being admitted to the PICU in Roanoke for about a week. His cath was rescheduled for the end of November. So I was so anxious for that to hurry up and get there so we could get answers fast because I knew he was so sick =[.
morning of his cath at UVA--November 9, 2010

After admit to Roanoke Memorial--His big swollen belly with the big swollen liver inside =[

FINALLY the day came for Kayden's heart cath, November 23, 2010. The results of his cath were sad news but I was glad to get the answers we needed. We were told he would probably not make it out of a valve repair or replacement, so they were thinking of transplant but wanted second opinions. So his info was sent to a couple different hospitals. That's what took us all the way to Boston, MA. A cardiologist called us from Children's Hosptial Boston and said that he though a cone repair and possibly a glenn would be good for Kayden, so they wanted him to come there for a cath, MRI, echo and possibly surgery. Kayden was sick in and out of the hospital all through February of 2011. His date for Boston was scheduled for April, then they rescheduled to May. Once Kayden was in the hospital in February pretty much all because of his heart, his cardiologist was worried he wouldn't make it until May. SO at the end of February we got word that his new surgery date was March 17 but we had to be in Boston March 14. 
morning of his cath--11/23/11

Finally March came, we drove all the way from Roanoke, VA to Boston, MA...Took us about 14 hours after stopping LOL. I was good though, I don't mind driving long distances. Kayden did awesome the whole way there! Kayden had his MRI, cath & echo on March 15, his heart rate dropped during the breath holds of the MRI but overall he did great & they even thought he'd do good through the surgery, maybe giving them some problems but they were very confident. SO Kayden had his first open heart surgery to repair his tricuspid valve. This is when we discovered he was technically not an Ebstein's case. Kayden did great after the surgery, he came out of it fine and even amazed the doctors by coming off the vent sooner than expected. He was in the hospital a total of 3 weeks in March. I was a super proud mama let me tell ya, he was one true warrior ♥
We were home for 5 days when he was admitted into the hospital in Roanoke, he had fluid beside his lungs which was called a pleural effusion. They were surprised because normally it shows up within 24-48 hours after surgery. So we were in the hospital another week with another chest tube in ♥ In my opinion after that is when Kayden went downhill.
Kayden James March 17, 2011--Surgery day & St. Patty's Day

He was back and fourth to the cardiologist regularly after April. In May his cardiologist then decided he needed to go to UVa because he just needed to be put on the transplant list. Kayden was scheduled for UVa on June 14, 2011. It was that day we were told, his heart was worse than before his surgery in Boston. Kayden's heart was so big & working so hard, it made the repair basically fall apart. So we took about 10 steps backwards. Kayden was admitted to the PICU that same day, and started to be evaluated for a heart transplant. It took 2 weeks before he finally got listed, I don't know if it normally takes that long or if they just knew he wouldn't make it. He was listed on June 28, 2011. After coming off the vent from his cath, he took a 2 hour nap. When he woke up, Kayden was not Kayden anymore. He couldn't control his movements, he couldn't talk, and he couldn't focus on anything. I later read through some papers and they thought it was a mild case of Chorea. Kayden didn't fully recover from that, he did get a little better but not all the way. He waited 2 weeks for his second chance & passed away July 14, 2011 waiting on a heart transplant. I try to think that his heart was just so big & full of love that he just didn't want to give it away. Kayden was a beautiful soul, he was so loving. I miss him more than anyone could EVER dream of. He was truly an Angel sent from Heaven and I will ALWAYS be thankful for the time I had with him. I will ALWAYS remember the fight he had in him, and  I will ALWAYS like I promised my son, FIGHT for him & all of the other little Angels & Warriors.

One of Kayden's last pictures ♥

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