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!

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!

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.

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!

Ryleigh the Super Star

Our sweet Ryleigh!

1 Year After Diagnosis

Exactly one year ago to this day I was 22 weeks pregnant with my daughter Ryleigh. We were having an ultrasound when we received the devastating news she had a congenital heart defect. I don't know why this day sticks out in my mind other than to remind me that life can change in a moment and on this day one year ago our lives were forever changed. So much uncertainty, not knowing if she would make it, seeing her on a screen, not able to hold her, hug her, and whispering how much I loved her hoping she heard me. I find sadness today, but as I look at my daughter playing with her toys in front of me 1 year from that day and the news - who will also be eight months this Sunday - I know that she is nothing short of a miracle, she did it. She may be 1 in 100 to some, but to me she is 1 of a kind! Thankful for my husband, son, and daughter, AND all of our wonderful family and friends who have supported us and continue to do so. Our lives will never know normal or “easy”, but it is what we signed up for and I could not image her not being a part of our family. Appreciate your life and the moments you have with those you love.

 

 

Monthly cardiologist checkup

Just got out, Ry's being presented to the team for review, her conduit has severe leaking and her PA's continue to make her cardiologist nervous. We will be waiting to hear recommendations tomorrow. Her right ventricle is tolerating the issues, so that's the silver lining - she's got a strong heart. Ideally if we can make it 6 months we will hold out and do an open heart surgery, if not a cath to hold us until she's a year. If she starts to show signs of decreased function she's a candidate for either procedure depending on severity of loss.

Update 2/11/13: Talked with her cardiologist, the team agrees that we need to get Ry bigger before next intervention. She will grow a lot in the next 6 months so we are hoping that she reaches a year before we need to either do another open heart, after a year of age, they will proceed with an open heart.