Sunday, December 22, 2013

Friday, December 20, 2013

Did you know...

Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.

Congenital heart defects are the #1 cause of birth defect related deaths.

Congenital heart defects are the leading cause of all infant deaths in the United States.

Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.

Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.


Tuesday, December 17, 2013

Life in the no intervention lane

Hello All:
When it is quite, all is well. We have really been enjoying our no intervention time - free of appts! This is the way life should be, a heart mom could get used to this! Although we only have 1 more month of this lovely time. Ry has been growing and changing so much, really coming into herself. She talks so clearly now, saying 2-3 words together. So animated, full of life, and gosh so very happy. Since her last open heart Sept 30th, she has been doing great. I am always shocked when we get news that she even needs an intervention because she looks so good. She is a sleeper and must get that from her daddy, some days it is 9am before she gets up!

We go see her cardiologist and pediatrician again in January - so we are planning to just enjoy the holidays and as much of january as we can and then face whatever the next challenge is - which will likely be another cath to place stents in those pulmonary branches as the open heart did not fix those, at some point we are facing another open heart to fix her leaking valves, which also did not work from her last open heart, but I am not sure of timing but I think the cath will be in the next 2-3 months and the open heart in the next year to 2 if her heart continues to tolerate without compromise (trust me we are hoping it does, I hate open hearts!).

Here is a sweet fall photo of her that her daddy took. She is a true miracle and we just love her to pieces. She is the world to me! She is one amazing kid with a great personality, lots of character, and is so much fun, we always get compliments on how well behaved she is, happy, and just takes it all in, I think she is a mensa in the making - so smart for her tiny age of nearly 17 months (on December 24).

Love the Walkers!

Sunday, November 10, 2013

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!

Sunday, August 25, 2013

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

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!

Thursday, March 21, 2013

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.


Monday, February 4, 2013

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.

Thursday, January 17, 2013

Shared Emotion

Shared Emotion
Written by: Lee Ann Walker
It is not without a blow to the gut, a desperate plea to the mind, that fate finds us locked in a corner of our heart trapped by emotions that should not be felt by anyone. It is with longing that we look to the past, a day where we were free, smiling without reason, smiling for an emotion called happiness. In the face of despair with an injured soul, we seek to find others who have shared a similar fate, hoping they hold the map to Happy Town – together we mourn and grieve as if it was our own twisted fate all over again. With a dubious cover to feel no pain, we try to block it out, ignoring it, filling our lives with other trinkets of contentment, all the while this pain lingers like an illicit friend gripping you, shaking you until you’re unable to see what remains.
Our paths in life seem so different at the beginning, but soon we realize our beginning also belonged to someone else and someone else before them. Our situations are rarely unique in fact almost everything has happened to someone else at some other time. Suddenly we realize our life’s history is not being made it is merely being relived. What makes us different is how we chose to deal with the emotions of a situation that so many others have taken to know. In the wake of the storm, devastation is inevitable, but repairable; we must find healing, for if this is not found – we will be lost. How can we make change if we are lost? Nevertheless, how can we heal such pain that funnels our thoughts and makes every action seem irrational, unjustified, and untimely? We share our story to anyone and everyone who claim they want you hear it, only to find that others too have been through it. We grieve all over; we share the emotions of others as a form of healing. Their hurting collides with our own making a kaleidoscope of pain that turns and turns shaping us into a different person.
It is easy to see your life before your life began because life is so much easier before you had to live it. We find that balance does not exist and while my luck may be bad one day, it is great the next providing unguaranteed hope that the day after today might share a similar consequence. The loss of a loved one, a child, a job, a pet, no matter the reason for sadness – it is repetitive, ah yes, life’s one guarantee – loss. One almost never forgets a loss, but rarely revels in the glory of the moment of knowing what it was like before the loss. The happiness that filled our body cavity with ribbons of warmth, tingles, and butterflies. Life is full of this up and down emotional turmoil, but it is wise to share the facts and observe the challenge and know that there are certain things you can control and things you cannot no matter how hard you press the reset button.
In the end, the only thing that ends is…we. So live like there is no ending. Do not fear what you do not understand; fear what you have not achieved. This life is limited. Share in the emotions of others who share a similar fate and heal these tattoos of life. Mourn the life you will never know and live the one you have been given. Know it will not be easy, but know there are others who are ready to walk this path with you, together may you find peace, comfort, and healing.
I wrote this piece in honor of my daughter. I always wanted a child, a girl to be specific. July 24, 2012 I had my girl, and her name is Ryleigh. She is the light at the end of my tunnel, completing my jigsaw, every piece is now in place. No, she is not perfect; in fact, she is my imperfect slice of perfection. She was born with a rare life threatening heart defect. My reality is knowing - she will never be okay, she will never be healed, and she will never know any other life than this one, I can’t change that.
She in reality, is a stark comparison to the little girl I had envisioned having. I mourned this loss, the loss of a perfect child.  Her life will not be easy, I have immense guilt in some ways that I did this to her and that by my choice to choose life - I am choosing this life for her and what if she does not want it? Every time she hurts, will she blame me? I shared my story and realized Ry is not alone and my thoughts and emotions are also shared by others. I have met other heart kids and their lives are filled with happy times, challenges, and triumph, but - through it all they have amazing courage to do whatever they desire. This is my hope for her.
I realized I, too, am a survivor of her heart defect. I realized I cannot save her, I cannot fix her, and I cannot take away her pain. As a mom that is incredibly hard to handle. I also realized her time is precious, her life is not guaranteed, and so I must enjoy her and focus on what I can control. I am one of the lucky ones, not every heart family is so lucky. I hold this dear to my heart and I know I share this emotion.