I wrote this for my husband, who at times never really gets the credit he deserves:
http://leeannwalker.blogspot.com/2013/12/dadsofthedying.html
LA
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.
Cited:
http://www.childrensheartfoundation.org/about-chf/fact-sheets
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.
Cited:
http://www.childrensheartfoundation.org/about-chf/fact-sheets
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!
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
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
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!
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