Updates since August - she had an open heart!

Ry had her 2nd open heart Sept. 30. Her surgeons were hopeful that they addressed the stenosis in her pulmonary branches from cutting them open and patching to make them larger thus increasing blood flow, they also attempted to decrease valve regurgitation by sewing one leaflet closed on her 4 leaflet valve, in addition replacing the conduit that was showing gradient and finally removing the aneurysm from the 1st cath. 4 major things occurred! 

Her surgery was a grueling 11 hours long - it took 4 hours for them to get through the scar tissue. They upgraded her conduit from a 9mm to 14mm and were successful in removing the aneurysm. However, the stenosis and valve issues remain, the surgery was not successful in addressing them in any significant way that would allow us to stay intervention free for a few years. We had a follow up with her cardiologist October 24 and he informed us that she would have to have another cath. Since her surgery was just done and she was experiencing a lot of PTSD from the surgery, he thinks it's best if we give her some time to heal her heart and her trauma. So we go back January 23rd to get the new game plan. We are thankful for the 3 months off to enjoy the holidays and watch her grow and get a break from all the doctor appts. We are sad that she will endure another cath soon after our 3 month break and possibly another open heart next year to address the stenosis and valve regurgitation, which is severe at the moment, but her heart is keeping up so far. The good news is the stenosis might be addressed in the cath using stents, if so we may be able to avoid another open heart for a year possibly 2! She is currently on a heart med called enalapril and on a daily dose of baby aspirin. 

Sorry for not posting sooner, it's just been a whirlwind of events. Several of Ry's heart friends have earned their wings, while others continue to fight. This journey is never easy and while nothing prepares you for all the ups and downs, we maintain our hope that Ry will continue to be strong and be with us for many years to come. 

Much love 

The Walkers

Ry putting on her big girl panties! A true fighter!

Ry's latest and greatest

Ry underwent a cath procedure last week (22nd), where they were going to place stents on Thursday through the cath lab in hopes of giving her a year to 2 years before her next open heart. The procedure started at 8:30 am and the cardiologist's nurse called to say at 10 am the procedure was done, we knew there must have been something that happened, because the procedure should have taken 4 hours.

They were not able to provide any relief from her current condition, Ryleigh's last balloon cath weakened the arterial walls causing an aneurysm. So we were informed she will be headed for her 2nd open heart surgery in a few weeks.

The pressures were very high in her ventricles and the stenosis is much worse than they thought. It is not good news, but we are hoping they can patch the branches, replace the conduit, and address her VSD - so we can enjoy a 5-7 year break from open hearts!

Ry has already had 1 open heart at 7 days old, 1 balloon cath at 4 months old, and this previous cath which turned out to be nothing more than diagnostic due to the aneurysm at 1 year old, her next open heart will be at some point in September.

She is one happy baby otherwise and is so tall and amazing. Such a looker too, here we are doing Yoga!

With love,
The Walker's

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!

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!

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.