Because my Hubby is on a plane headed home right now, I will share with you the text message he sent me today to update me on the meeting with the doc.
"Ashley will be getting an Amplatzer in June. Her hole is 10 to 12 mm. Ellen said she is sorry for hurting your feelings and she said you and the girls should come out for the surgery."
So that's good news! The Amplatzer is exactly what I was hoping for because it is what Linzie had placed in her heart when she was 9 years old so we know what to expect. It is a relatively simple and routine procedure that involves inserting the umbrella-like device over the hole in her heart by going up through the artery in her leg. Linzie's entire operation, which included two different procedures, was over in 40 minutes total. Ashley will likely have a sore leg for a week or so and will have to take it easy for about a month while taking a baby aspirin every day for heart therapy.
She will do just fine!
The tricky part will be coordinating schedules in June because Carley and Madi graduate on June 2nd.. hopefully we won't have to split the parenting to attend both events at the same time.
Showing posts with label ASD. Show all posts
Showing posts with label ASD. Show all posts
Wednesday, January 26, 2011
Wednesday, January 19, 2011
Being Strong For The Ones I Love
If you could look inside my thoughts and emotions today, you'd see a swirling dark cloud of chaos. I imagine it would look much like a tornado, complete with splintered barn wood, household appliances, and the occasional cow caught up in the vortex. In the middle of this dark storm there is a tiny slip of a girl with long, straw colored hair and she's wondering how she came to be in this confusing, scary place.... even as I'm wondering how to get her to a safe place in the sunshine, far away from the fearful darkness.
Last night we received a phone call from our sweet Ashley and after asking for her dad (who was at work),the first thing she said to me was, "I guess I have more in common with Linzie than anyone knew."
And just like that, a bomb dropped on our unsuspecting household. We didn't see it coming, we had no reason to even worry.. until now.
Ashley had a physical yesterday and during that appointment they discovered that she has Atrial Septal Defect (ASD) which is a hole between the upper chambers of her heart. As far as congenital heart defects go, this is one of the most common and when it is discovered in kids it is completely treatable and no cause for extreme worry.
However, telling parents and family members something like that seldom eases their minds. After all, we are talking about a child's heart... the very center of their existence, just as that child is the very center of the parents' existence.
Ouch.
Now I find myself in a completely helpless position even though I have been down the ASD road before. My own Linzie had three major problems with her heart that were detected minutes after her birth. This is our Normal. Linzie had heart surgery when she was only days old and she was the smallest baby to ever have that procedure at Primary Children's Medical Center.. Or PCMC as we lovingly call it. Five years ago, we traveled that road again as Linz once more had surgery to repair two of the issues that stubbornly remained. Five years later, Linz is fine. My girl is healthy and active, strong and happy. I couldn't have asked for a better outcome. I tell her all the time that she has a mighty heart.
With so much experience in this area, why then am I so helpless now? It's all about steps.
We have a saying around here... "In our family there are no steps." I truly mean that. Bill is my girls' dad and I am Mama Bear to Ashley. We know we were always meant to be a family and we work very well together. We are a tribe and we take the very best care of each other.
But...
In this situation there is a big Step right in front of me. I don't get to make any decisions about Ashley's health care. Even though I know what I would do for one of my own, I stand here helpless on the sidelines today. I'm not her mom... I'm Step-mom and today I have no voice.
Ouch.
Today there have been many tears shed. The tears started last night and there's little I can do to ease the pain my family is feeling right now. I remind Hubby over and over that education is our armor. By doing our research and understanding what questions to ask, we will have a better grasp on the issues and a sense of calm in our hearts. We must believe that we are doing everything we can possibly do and then, when there's nothing more we can do on our own, we have to be able give the rest over to a higher power and trust that everything will be okay.
But nothing eases the pain of a father's heart when his little girl is fighting a battle that he can only watch. And nothing I say or do will completely quell the fear he feels inside. I can only hold him when he cries and reassure him that I know in my heart that our girl will be fine.
I hate it that I have to sit this one out. I have always taken the lead when it comes to my girls' medical care. I research, plan and tell the Docs to tell me when it is "Go Time." This method has never let me down in more than 18 years of parenting. This is going to be tough for me.
Next week we will know more. After more tests, the doctors will be able to recommend either open heart surgery or a more simple catheter procedure. Oh how I wish Dr. Shaddy was in charge of this one!
For now we wait, and we think positive.. and I constantly reassure Hubby and my family that it is going to work out fine. We can't see the road ahead of us but I know that we will tackle it together.
Last night we received a phone call from our sweet Ashley and after asking for her dad (who was at work),the first thing she said to me was, "I guess I have more in common with Linzie than anyone knew."
And just like that, a bomb dropped on our unsuspecting household. We didn't see it coming, we had no reason to even worry.. until now.
Ashley had a physical yesterday and during that appointment they discovered that she has Atrial Septal Defect (ASD) which is a hole between the upper chambers of her heart. As far as congenital heart defects go, this is one of the most common and when it is discovered in kids it is completely treatable and no cause for extreme worry.
However, telling parents and family members something like that seldom eases their minds. After all, we are talking about a child's heart... the very center of their existence, just as that child is the very center of the parents' existence.
Ouch.
Now I find myself in a completely helpless position even though I have been down the ASD road before. My own Linzie had three major problems with her heart that were detected minutes after her birth. This is our Normal. Linzie had heart surgery when she was only days old and she was the smallest baby to ever have that procedure at Primary Children's Medical Center.. Or PCMC as we lovingly call it. Five years ago, we traveled that road again as Linz once more had surgery to repair two of the issues that stubbornly remained. Five years later, Linz is fine. My girl is healthy and active, strong and happy. I couldn't have asked for a better outcome. I tell her all the time that she has a mighty heart.
With so much experience in this area, why then am I so helpless now? It's all about steps.
We have a saying around here... "In our family there are no steps." I truly mean that. Bill is my girls' dad and I am Mama Bear to Ashley. We know we were always meant to be a family and we work very well together. We are a tribe and we take the very best care of each other.
But...
In this situation there is a big Step right in front of me. I don't get to make any decisions about Ashley's health care. Even though I know what I would do for one of my own, I stand here helpless on the sidelines today. I'm not her mom... I'm Step-mom and today I have no voice.
Ouch.
Today there have been many tears shed. The tears started last night and there's little I can do to ease the pain my family is feeling right now. I remind Hubby over and over that education is our armor. By doing our research and understanding what questions to ask, we will have a better grasp on the issues and a sense of calm in our hearts. We must believe that we are doing everything we can possibly do and then, when there's nothing more we can do on our own, we have to be able give the rest over to a higher power and trust that everything will be okay.
But nothing eases the pain of a father's heart when his little girl is fighting a battle that he can only watch. And nothing I say or do will completely quell the fear he feels inside. I can only hold him when he cries and reassure him that I know in my heart that our girl will be fine.
I hate it that I have to sit this one out. I have always taken the lead when it comes to my girls' medical care. I research, plan and tell the Docs to tell me when it is "Go Time." This method has never let me down in more than 18 years of parenting. This is going to be tough for me.
Next week we will know more. After more tests, the doctors will be able to recommend either open heart surgery or a more simple catheter procedure. Oh how I wish Dr. Shaddy was in charge of this one!
For now we wait, and we think positive.. and I constantly reassure Hubby and my family that it is going to work out fine. We can't see the road ahead of us but I know that we will tackle it together.
I know in my heart of hearts that this will all be okay. There simply is no other option.
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"My daughters are so many things- Tiny discoverers of butterfly wings, huggers of teddies, sweet sleepyheads, little ones to dream for in bright years ahead... All Special people who right from the start had a place in our family and of course in my heart. And just when I think that I've learned all the things that my dear daughters are and the joy each one brings, a hug or a grin comes with such sweet surprise that love finds me smiling with tears in my eyes!"
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