I know this is crazy but I had the WORST dream last night. The nightmares seem to come and go. Some nights I wake up in sweat and breathing hard. Memories and I guess future fears.
I was doing well with the nightmares until Riley's new findings, her leaky valve. I have spoke to some very educated CHD "experts" as I call them and they did explain it more but I still cannot seem to let it go just yet. I know that she will limit herself but my thing is; what if she falls and it makes the leak bigger? or what if I wreck and the same thing happens? I know that these fears and worries will eventually fade but last night I had a dream that we were on a swing and I pushed her, she fell and turned blue. Everyone was looking at me as I was yelling for help but no one would. I didn't get through the dream because I woke up running to her making sure she was breathing. I wish they would go away and not come back. I swear moms of CHD kids and ACHD's possibly have Post Traumatic Stress Disorder.
I am trying to give it to God, trying really hard, but I am not sure why I am still holding on to this finding. Possibly fear of the unknown? Caught me off guard? Want my kid to be ok? Maybe I need more research but guess what, all the research I found is all Adults with healthy hearts who are in their 40's and 50's or its about valve replacement. SSSOOOOO...if anyone could give me a good site, I would appreciate it! God Bless....
Go to the Adult Congenital Heart Association and sign up for free. Then go to there forums and talk to thousands adults with CHDs from around the world. I know alot of them have good site to go to.
ReplyDeleteI know had PTSD when I was little, I also had night terrors. This I'm sure is normal because I had 2 open heart surgeries, other hospital stays, stiches, 3 eye surgeries, 2 heart caths, etc. I had white coast syndrome too meaning I hated drs and they had to take off their white coat before coming in to see me. I got over most of this by my teenage years. I'm doing well now. I do have an anxiety disorder and I can be pernoid, but that's to be expected. I'm doing wel health wise.
I know you get scared and get worried and nervous. My parents especially my mom did. It's normal to have nightmares about your precious child. Hang in there! I'm here if you ever want to talk.
Yes I give it up to God too. My future is unknown, but I try to look at the positive, live to the fullest I can, and live day by day. Have faith!
LOTS of Hope, Love, and Faith,
Lauren (almost 23yr old CHD survivor... Tricuspid Atresia, HRHS)
Lauren,
ReplyDeleteRiley also had "White Coat Syndrome" So glad thats "normal"
Angee,
ReplyDeleteThanks for participating in my blog event!
Hello..I found you in the EveryHeart Event. My son Zeb (3 yrs old ) has Aortic Stenosis with a bicuspid aortic valve. His valve was leaking greatly and he had to have surgery ( its been almost 6 mths) We originally was going to have to have the valve replace via Ross Procedure because they thought his valve was too damaged but he ended up getting a valve repair which was amazing. He also has a leaky mitral valve. I haven't found many sites either. I just wanted to stop by your blog and say hello and encourage you! Zeb is doing great and it may be that they can do a valve repair to tighten her valve, i don't know, I will be praying. Anything Is Possible with GOd!
ReplyDeleteHeart Hugs,
Rhonda
www.lylefamily5.blogspot.com