Long time...

Wow it has been so ling and so much has happened. Mom passed away, we have moved, and Riley has had a few "new discoveries". Her aortic valve is leaking and they have detected Aortic Stenosis. Not sure why this has not been discovered but possibly just monitoring the TGA. Who knows but I am adjusting. I try not to read too many stories about it because then I freak out which is the LAST thing I need. I am working on giving it to God and letting him do the work..which is easier said than done.
I got to see my friends and their kids over the weekend at my friend Leah's memorial for her Sweet CHD Angel Pierce. I was honored and amazed. It was beautiful and had a great turnout. I needed these parents at this time.
Now to the point. Riley possibly has a surgery coming up in June/July due to the leak getting larger with the blood regurgitating in the heart causing blue spells and stomach problems. I am blessed for such great doctors and great friends. I try and use my support group and other CHD moms, I know I couldn't make it without them! I just want to say thanks for the prayers, teh thoguhts, and the words of encouragement. Love you all and thanks...

Nightmares....

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....

My new Blog Page!

So I am proud to say I have created a blog. Yes I know it is not as fancy as others but it gets my point across and that is what matters. The style will come later, contents is more important. Riley has a CHD, or Congenital Heart Defect, called Transposition of the Great Arteries. She had a balloon atrial seseptomy(?) at 8 hours old. A fancy word saying a heart cath that opens the hole in her heart more so her blood can mix to prolong her life so she could make it to DC for open heart surgery. She had open heart surgery at 5 days old. I have been through tons of trial in my life but NOTHING prepares you for seeing your newborn child after open heart surgery. She sees the cardiologist and will continue throughout her life. She has done well. The last visit the Cardiologist found that she has a leak in her aortic valve. Still unsure of what that means and what that entails but I gather, monitor, observe, and repair when needed. Anyway, I am grateful for each day that I have been given with her. I have made great friends. I have seen many CHD babies pass away and earn their wings. I choose to contribute to the CHD community because I had no idea that CHD's even existed until I was brought into this world with my little hero. I thank God for what I have in my life.