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.

Shared Emotion

Shared Emotion

Written by: Lee Ann Walker

01/17/2013

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.

Merry Christmas

It's almost hard to believe Ryleigh is almost 5 months next week. We are so blessed to have her. A wonderful Christmas it will be.

Synergis RSV

Just a note I learned. Cardiac (or high risk) babies should all get a monthly Synergis shot during high RSV season to fight off respiratory illnesses. Season is October to March. Ry had her shot yesterday and I can tell you babies don't like them. Apparently they burn! She was not a happy camper! I guess they only need them the first 6 months maybe 1st year of life. Since she's a summer baby, she fell into the high season and age range.

Nothing gets her down

This was taken today. She's just so happy!