Wednesday, July 24, 2013

Happy 1st Birthday Ryleigh Ann

1 year ago about this time I witnessed a true miracle. The birth of my daughter, heart hero, Ryleigh Ann. It is a very special day as there was a time I wasn't sure we would see it! I wish a very happy birthday to the bravest, sweetest, happiest little girl I know! May life be good to you, may love find you always, may serenity keep your soul at peace, may you laugh and dance like there is no tomorrow, may "limits" be a word you are never bound by, my sweet child - happy birthday to you and here's to hoping I get to enjoy 50 more birthdays with you my sweet girl! We love you Ry!

Thursday, June 20, 2013

Latest Update on Ry

Ry's echo showed about the same as 6 weeks ago, severe stenosis, regurgitation from valves, and significant concerns. Her cardiologist noted gradients across the homograph/conduit, which indicates she's out growing it. We've been give 6 more weeks of intervention free time. July 31st after her 1st birthday (July 24), we go back for another echo at which time her cardiologist will present her to her team of doctors (cardiology team and surgeons) for intervention options. At this point it could be another cath or open heart. We will know more in 6 weeks. Until then we will enjoy our girl and her first birthday. 

We are hoping to see her walk soon! She tires very easily, but she's been very mobile!

Sunday, June 16, 2013

Ry and "The Dress"

So my husband took me out to dinner for my birthday and Ry and I matched with our ensemble. I found this great dress for her and so many people stopped to tell us how beautiful she is. Both of our kids are such gifts!







Wednesday, May 29, 2013

Says Momma

Ry said momma today, my husband says she said it a few days ago, but I clearly heard it today, it all she keeps saying!

Friday, May 24, 2013

Our heart hero is 10 months

I almost can't believe that Ryleigh is 10 months old. She's crawling everywhere and doing so great. Her last cardiology appointment went well, but we learned that Ryleigh will need another open heart surgery this year. The plan is to present her to her team when she reaches one year of age, which is in a couple of months, they will decide at that time the plan of action and a potential surgery date. Ryleigh continues to have severe stenosis and regurgitation of her good valve and replaced valve. While we dread the fact that she will undergo another open heart surgery, we have enjoyed every moment to this point. It's definitely something that I think about each and every day, and as the time approaches, my anxiety level goes up. I struggle from one day today to the next between being sad, being happy, and thinking that I am prepared. In reality, I don't think anything can prepare you for such an event. We are hoping that this surgery is successful in opening up her branch PAs and replacing the conduit in hopes that the next open heart surgery won't be for 5 to 8 years. Ryleigh is doing great milestone wise, she starting to sound out letters, chatting a little bit more, and gosh she crawling all over the place and standing. Yesterday she even tried to walk. So it's just a matter of weeks now that we will have a walking Walker. She has definitely added something amazing to our lives, and we just love her so much.

Saturday, April 20, 2013

Two Major Growth Milestones

Ryleigh is doing very well. She cut her first tooth this past week and she learned to crawl! So proud of her. Cardiologist visit is in less than two weeks. Hoping for a good report. Ryleigh will be 9 months in just a few days!