Photos by: TrishWills Photography
Wednesday, January 23, 2008
Saturday, January 19, 2008
Cardiac Appointment NEWS
Andrew and I accompanied Tyler to his January 16th cardiac appointment. We learned much news regarding his upcoming Heart Catherization procedure and next Open-Heart surgery.
Tyler had an echocardiogram during this appointment, and what they saw showed his heart to still be in good functioning order, but with new signs of over-stress. It is nothing to get too worked up about... we just know that he can't live on the first surgery for much longer. Remember, the right side of his heart is what is pumping to his entire body and lungs. It is working 2x's as hard. After the next surgery, the Glenn, it will only be working 1.5x's as hard. (and after the third surgery it will be working at the 1x capacity)
We've been told a few dates, and unfortunately, time isn't going to be slowing down for Mommy and Daddy's sake!
Tyler had an echocardiogram during this appointment, and what they saw showed his heart to still be in good functioning order, but with new signs of over-stress. It is nothing to get too worked up about... we just know that he can't live on the first surgery for much longer. Remember, the right side of his heart is what is pumping to his entire body and lungs. It is working 2x's as hard. After the next surgery, the Glenn, it will only be working 1.5x's as hard. (and after the third surgery it will be working at the 1x capacity)
We've been told a few dates, and unfortunately, time isn't going to be slowing down for Mommy and Daddy's sake!
- The next cardiologist appointment is February 14th. He will have another echocardiogram and we will also be scheduling his Heart Catherization.
- The Heart Cath will take place towards the end of March. If Tyler has a morning catherization, he will be discharged later that evening; if he has an afternoon catherization, he will be kept overnight and discharged early the next day. Children's Mercy Hospital monitors the hypoplast babies for roughly 6-8 hours after a cath procedure.
- Then, his second Open-Heart surgery will take place BEFORE April 10th. If all goes well, the outlook for length-of-stay is about 10-15 days. He will nearly be 8 months old and usually these HLHS kiddos have the second surgery when they are in their 6th month. However, that is not possible for Tyler, because his 6th month falls smack dab in the center of RSV season. His Pediatric Cardiac Surgeon will NOT operate on him during this time unless serious medical intervention is needed.
So, that is our most updated news regarding the condition and status of baby Tyler's heart. Andrew and I are trying hard to process all the information we were given and what to expect. Why can't this be easier to wrap our minds around? It's just surreal to think we're going to be doing this all again in a mere 10-12 weeks. Afterall, it seems as though we just brought him home.
Monday, January 14, 2008
Quote of the Week
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who haven't, share in my unique experience and try to understand it. To imagine how it would feel. Well, it's like this...
When you are going to have a baby, it's like planning a fabulous vacation trip to Italy. You go out and buy a bunch of guidebooks and make your wonderful plans... making sure to site see the Coliseum, Michelangelo's David, the Gondolas in Venice. You may even attempt to learn some handy phrases in Italian. It's ALL very exciting!
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says joyfully, "Welcome to Holland."
"Holland???", you say with a disgusted tone. "What do you mean, HOLLAND? I signed up for Italy! I'm supposed to be in Italy. All my life, I've dreamed of going to Italy!"
However, there has been an unexpected change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a WHOLE new set of guidebooks. And you must start learning a WHOLE new language. And you will meet a WHOLE new group of people you would have never met.
Holland is just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while you start to catch your breath, you start to look around you, and you begin to notice that Holland has historic windmills, and Holland has beautiful tulips, and Holland has Rembrandt's.
But, everyone is busy coming and going from Italy, and they're ALL bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes. That's where I was SUPPOSED to go. That's what I had planned."
This pain will NEVER, ever, EVER go away, because the loss of that dream is a very significant loss.
But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. -Emily Pearl Kingsley
Reflection:
Though you may not personally relate to the subject of this particular composition, we can all relate to having things in our lives not turn out just the way we hope or expect them. However, I do believe its message is equally relevant to us all. More times than not, the path we utimately wind up on, ends up being the absolute best fit for us; perhaps it's a path we end up 'living with' or deciding to molding our life to, either way-- it's likely a path we never regret taking.
I am often asked to describe the experience of raising a child with a disability - to try to help people who haven't, share in my unique experience and try to understand it. To imagine how it would feel. Well, it's like this...
When you are going to have a baby, it's like planning a fabulous vacation trip to Italy. You go out and buy a bunch of guidebooks and make your wonderful plans... making sure to site see the Coliseum, Michelangelo's David, the Gondolas in Venice. You may even attempt to learn some handy phrases in Italian. It's ALL very exciting!
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says joyfully, "Welcome to Holland."
"Holland???", you say with a disgusted tone. "What do you mean, HOLLAND? I signed up for Italy! I'm supposed to be in Italy. All my life, I've dreamed of going to Italy!"
However, there has been an unexpected change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a WHOLE new set of guidebooks. And you must start learning a WHOLE new language. And you will meet a WHOLE new group of people you would have never met.
Holland is just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while you start to catch your breath, you start to look around you, and you begin to notice that Holland has historic windmills, and Holland has beautiful tulips, and Holland has Rembrandt's.
But, everyone is busy coming and going from Italy, and they're ALL bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes. That's where I was SUPPOSED to go. That's what I had planned."
This pain will NEVER, ever, EVER go away, because the loss of that dream is a very significant loss.
But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland. -Emily Pearl Kingsley
Reflection:
Though you may not personally relate to the subject of this particular composition, we can all relate to having things in our lives not turn out just the way we hope or expect them. However, I do believe its message is equally relevant to us all. More times than not, the path we utimately wind up on, ends up being the absolute best fit for us; perhaps it's a path we end up 'living with' or deciding to molding our life to, either way-- it's likely a path we never regret taking.
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