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

Saturday, October 30, 2010

Kayden's Story

Kayden was born on December 21, 2007 at 1:24 a.m. He was born with a bilateral cleft lip and palate, Dilated Cardiomyopathy, and what was thought to be Ebstein's Anomaly. He stayed in the NICU for 2 weeks after birth, he was on oxygen for the first couple days of his life. At a month old, Kayden wouldn't keep his formula down of course I worried, so we ended up at the ER that night to figure out what was wrong. The doctors had no idea, finally they admitted him into the hospital and early the next morning they did an ultrasound on his tummy. He had pyloric stenosis, which if you don't what it is it's a hole that helps your food digest and go through to your stomach, his was too small so they had to do surgery to make the hole bigger. He did well through the surgery, of course I worried the whole time he was in the OR. Anyways Kayden had a lip adhesion done in April 2008 at 4 months old, this was the first step to repair his cleft lip/palate. In October 2008, at 10 months old he had surgery to complete the lip repair. He did great I was so proud of him, it was emotional because he looked so much different but he was still my beautiful little baby boy. In January 2009, Kayden had the final surgery in repairing the cleft, this one was on his palate, he did great although it took a little bit longer than expected. It was very sad to see after the surgery because his lips were so swollen and he had a stitch in his tongue to hold it down and not touch his palate. Kayden went all through 2009 without any problems, his heart had gotten alot better, not all the way but where we didn't have to worry so much. In about August or September I noticed he had a bump beside his ear that was red and it felt like a cyst or something, I wasn't sure so I took him to his pediatrician to find out what it was. He did notice that Kayden had a preauricular pit on his ear and the bump was close to it, so he said he thought the cyst was coming from the pit but wanted an ultrasound done to be sure that's what it was. Sure enough the cyst was coming from the pit so therefore they said it was a preauricular cyst. He was put on antibiotics to try to get it to go away or the infection in it to go away. It just got worse, so we started going to an ENT to try and get it to go away, they also said once the infection stopped flaring up surgery would be needed to remove the cyst. After months and months of fighting this thing, he had surgery in June 2010 to remove the cyst, he had ear infections all month in June(these were the first time since birth he had ear infections) and a cold that was on and off all month. His ENT doctor knew this but still felt it was necessary to go on with the surgery. After that things went pretty much downhill, he slowly lost his appetite, started sleeping more than he usually did which is alot because he's always loved to sleep, then I noticed his legs and feet started swelling, every morning he started waking up and his lips, hands and feet would have a blueish color to them. I took him to his pediatrician to find out what was going on with him, he had no life to him he laid around, slept, didn't eat & was swelling. The pediatrician noticed his liver was very swollen which worried him he felt that blood could be backing up in his liver and his heart wasn't pumping the blood like it should have been, Kayden had an appointment the following week with his cardiologist but his pediatrician got the appointment moved to the next day. We went in for the appointment I was not expecting what happened that day. They did an echo on him and his heart function had got so much worse, the tricuspid valve was leaking more now and it was just terrible. His cardiologist then told me on July 28, 2010 that Kayden was in Congestive Heart Failure. Those three words I did NOT want to hear, my grandpa died from CHF so I was so scared, I didn't know what to do, I didn't know if I should cry if I should scream I just didn't know. So his cardiologist told us to go get chest x-rays and go straight to the hospital up to the PICU, so that's exactly what we did. We were transported to the University of Virginia Children's Hospital the following day, which we were there for a little over a week. Kayden's since been going to his cardiologist every 2 weeks to increase one of the new medications they put him on. His lungs are clear but he still hasn't acted like himself since June. He still mostly lays around and doesn't eat much. He has no swelling since he is on Lasix now that's keeping the fluid from building up anywhere. I took him to the cardiologist on October 25 because I was so worried he slept the day before all day he was awake for about 3 hours the whole entire day, didn't eat & laid on the couch when he was awake. So the cardiologist noticed the Tricuspid valve leaking very badly and was concerned & thinks we should think about replacing the valve. So here we are and on November 9 Kayden goes for some diagnostic tests which they will put a catheter in his heart to see if the left side is affecting the right side, measure the pressure in his lungs, as well as any other information they need. If his left side is affecting the right then he will be too high risk to do anything with the valve, so I'm not sure at this point what the option would be, but if it is not affecting it then they will be most likely replacing his tricuspid valve. This is what I have feared since I found out about Kayden's heart which was at about 4 months pregnant. I still don't know what to think or expect. I'm worried & I'm scared. So this is the way I know of to get my feelings and thoughts out and to keep people updated on him. Also I want people to be MORE aware of Congenital Heart Defects, they affect so many kids each year. And when you think it's only 1 heart that's broken it's actually breaking many more, including moms, dads, brothers, sister, grandparents, aunts, uncles, etc.

UPDATE on Kayden's story ( May 2011)..Kayden had his first open heart surgery on March 17, 2011. They did the glenn & a cone repair which is repairing the tricuspid valve. His valve is now moderately leaking so he will probably have another surgery. The cardiologists have now classified his case as a dysplastic tricuspid valve with tricuspid regurgitation instead of Ebstein's. He is doing well with the exception of having a pleural effusion about 3 1/2 weeks out of surgery. And here we are going on 2 months after surgery & the effusion is coming back. Hopefully this will get under control soon. He still isn't very active like he use to be before his heart got worse, but I'm getting better with accepting that he will probably never be that child again. I just have to cherish the memories of Kayden while he was well.

Update on Kayden: 
On June 14, Kayden went to UVA his heart kept getting worse after the effusion. So UVA did an echo and his heart was actually worse than before the surgery in Boston, they said the only reason things weren't worse than what they were is because of the Glenn he had done in Boston. So the plan was to do a transplant evaluation and get him listed asap. They did everything to list him, the cath knocked him down though. It threw him under the bus pretty much. His heart rate dropped in the cath lab, they got him stable and back upstairs where they were having blood pressure issues I believe it was. Well he stayed intubated for about a week and he came off the vent. While they were getting him off that, he was saying 'no more no more no more', those were the last actual words we heard Kayden say. He took a 2 hour nap and woke up completely out of it. He was having uncontrollable movements, he wasn't talking and he kept looking around the room. I had never seen him do this so I was worried, they did a ct scan and nothing showed up. According to them it was medications and to this day I will swear up and down to any damn doctor it was not no effin medications. He finally got the movements under control. But he wouldn't talk, I would whisper things to him and if he'd come out of it for a second he would shake his head and one time he mouthed 'love you' to me. Kayden passed away July 14, 2011 he was on the transplant list for 2 weeks. I feel like they waited too long to help my baby. I am a firm believer in everything happens for a reason but I can't figure this one out. I also know Kayden is in a better place he is no longer hurting but damn it I just want him back I miss him and want to hold him. He was and will always be my little miracle <3


  1. misty we lost my nephew at four years old of chd and he also haddown sydrome which was arm so i can say i know what your going through and believe me i know its not easy your a wonerful mom a wonderful person and i just wish we all thought of blogging like you did , my heart and soul are with you and Kayden i will have you and Kayden and your family in my prayers and in our prayer list of people at church . god bless you all and ill be here right here with you through it all

  2. What a beautiful fighter you've got there. I'm so happy you found our family blog and I'm so happy to have found yet another wonderful "heart family". Praying for Kayden...

  3. Hello Misty . First I would like to say that I am very sorry for the loss of your precious boy Kayden. I found your blog by accident or so I thought but after spending a few minutes looking through it and reading it I believe there is more to it than that. We have alot in common..we are close in age..I'm 25. We both have four children except I have one boy and three girls. Evan is my oldest. He will be six on 12/15. He was born in 2005. Carissa is my oldest daughter. She was born 02/15/2007. Carissa is my CHD warrior. She was diagnosed at one month old with a large vsd of the lower two chambers of the heart , non compaction and cardiomyopathy. She has five chds total and at four months old had her first open heart surgery to repair the large hole. The surgery left her on an ecmo machine because her heart wouldn't restart. Two days later they finally were able to get her heart to restart even though the entire time they told us it wasnt possible and to prepare for the worst. She had a pacemaker put it around the same time she came off ecmo....I read your most recent post and I completely agree with you. People don't know what we go through on a day to day basis unless they are going through it themselves. We lost a home to foreclosure because our daughters life was more important to us than that home. Its a long story...I wouldn't wish this on anyone but I do wish they could atleast understand. I am writing this because I want to make a difference and I don't want these children forgotten. I want to help you with Kayden's toy drive for the hospital. I don't want to donate just acouple toys , I want to get my entire area involved. I think its a wonderful idea and I want to help. If you want my help let me know...in the meantime I will be praying for you and your family.