Yes, I've been on Pinterest again, and found some helpful information on HLHS. HLHS is hypoplastic left heart syndrome. The following links explain it much better than I can. In a nutshell, HLHS is when the left heart is not fully formed, and underdeveloped. This includes the left ventricle, the valves, such as the mitral valve, and can involve the aorta.
http://www.pinterest.com/pin/277464027018295685/
http://www.pinterest.com/pin/277464027018295673/
There are various congenital heart groups on facebook for support, and you can also find info on twitter and support with #chd.
Until next time
Carole
mom to Abby, 16
HLHS
Sunday, November 2, 2014
Tuesday, October 28, 2014
Some information I grabbed off pinterest
http://www.pinterest.com/pin/306385580873514435/
http://www.pinterest.com/pin/261490322088978226/
HLHS, or hypoplastic left heart syndrome This is what Abby has. http://www.pinterest.com/pin/105060603782662890/
I think I 've given enough resources to start.
Until next time.
Carole
http://www.pinterest.com/pin/261490322088978226/
HLHS, or hypoplastic left heart syndrome This is what Abby has. http://www.pinterest.com/pin/105060603782662890/
I think I 've given enough resources to start.
Until next time.
Carole
Sunday, October 26, 2014
Chd info on Pinterest
It has been a while since I updated this blog. My HLHS child is now 16, and will be on the roads very soon, possibly. We have to check into drivers ed in the spring. She is doing very well. Abigail has 3 A's as a sophomore 2 B's and 1 C. I have to say this year has less drama, perhaps to Abby growing up a bit. Perhaps to having much better teachers than ever in her school time. I vote for both, with the latter being the main issue in my opinion.
The main reason I am updating is because I love pinterest. Here is my board for chds and I plan to add to it. http://www.pinterest.com/mom4abb/congenital-heart-defects-info/ Please check it out.
Until next time
Carole
The main reason I am updating is because I love pinterest. Here is my board for chds and I plan to add to it. http://www.pinterest.com/mom4abb/congenital-heart-defects-info/ Please check it out.
Until next time
Carole
Sunday, June 15, 2014
We recently had another holter monitor test for Abby. No call from the cardiologist, so I am assuming all is good. Any heart moms out there reading this blog. It has been a while since I blogged. My heart kid, Abigail or Abby is 15 yrs old now. She has HLHS, and while she is limited in activities, she is quite creative. I'd love to get together with some heart moms who have kids around Abby's age. I am going to publish this blog in hopes of a get together. I am also going to post information about congenital heart defects as I have promised so many times before.
For all you heart moms, while Abby is 15, I do know some of what you are going through. I hope you know you have a shoulder to cry on if necessary, and an extra ear for listening. Lets' talk, share our experiences, stories and tears together.
Abby's progress: While Abby fatigues more than that of the usual teenager, she is fearless. There is nothing she won't try, and don't try and tell her she is still a child. She loves the stories from Hetalia, and will tell you she doesn't like her sister (but in fact she loves her, she'll never admit it to you though) Temperamental while charitable and thoughtful are some of Abbys' characteristics that come to mind. She is an avid writer, even though with her motor skills it proves difficult, Abby is quite the story teller. I hope one day she is a number 1 best selling author. I believe with all my heart she can do it.
Abby loves animals and loves our dog Sparky. Abby volunteers at the animal shelter once a week with her best friend Jana. Very much girls, my two daughters couldn't be more opposite. Abby loves the mall and to shop, and my Becky, may love the mall, but hates to shop.
This summer will be without summer or drama camp due to my work schedule and mileage on my car. Instead I am hoping to get a family membership at the YMCA and do some swimming. Abby loves the sun, summer, and swimming. Swimming lessons are in order for both girls as well as other activities and splash station.
While Abby fatigues easily, she is my night owl. And congratulations to Abby, she is becoming a reader ( I hope) We are both reading Divergent. Divergent is the book highschoolers have to read over the summer.
That is my update on my highschooler, and heart kid. Until next time.
Carole
For all you heart moms, while Abby is 15, I do know some of what you are going through. I hope you know you have a shoulder to cry on if necessary, and an extra ear for listening. Lets' talk, share our experiences, stories and tears together.
Abby's progress: While Abby fatigues more than that of the usual teenager, she is fearless. There is nothing she won't try, and don't try and tell her she is still a child. She loves the stories from Hetalia, and will tell you she doesn't like her sister (but in fact she loves her, she'll never admit it to you though) Temperamental while charitable and thoughtful are some of Abbys' characteristics that come to mind. She is an avid writer, even though with her motor skills it proves difficult, Abby is quite the story teller. I hope one day she is a number 1 best selling author. I believe with all my heart she can do it.
Abby loves animals and loves our dog Sparky. Abby volunteers at the animal shelter once a week with her best friend Jana. Very much girls, my two daughters couldn't be more opposite. Abby loves the mall and to shop, and my Becky, may love the mall, but hates to shop.
This summer will be without summer or drama camp due to my work schedule and mileage on my car. Instead I am hoping to get a family membership at the YMCA and do some swimming. Abby loves the sun, summer, and swimming. Swimming lessons are in order for both girls as well as other activities and splash station.
While Abby fatigues easily, she is my night owl. And congratulations to Abby, she is becoming a reader ( I hope) We are both reading Divergent. Divergent is the book highschoolers have to read over the summer.
That is my update on my highschooler, and heart kid. Until next time.
Carole
Saturday, August 10, 2013
Heart picnic is scheduled for late September. I would like to go, I think it will be good for my Abby. It just reinforces things that she is not alone in this. There are other kids like her, or even worse off. I do think my young heart kid is having puberty problems...we think menses is about to start...oh boy! I know tmi. she is in bed laying down right now...she has not been feeling well for the last 3 days. She did vacation well except for the last 2.
On another note, Chuck, my husband is supposed to take her for a 3d mri, and see what other info they can find out. Until next time.
carole
On another note, Chuck, my husband is supposed to take her for a 3d mri, and see what other info they can find out. Until next time.
carole
Sunday, July 21, 2013
Hello my friends,
It has been a long time since I have posted here. My chd baby is now 14, and will head to high school in a couple of weeks. She has her limitations, but we are so grateful to have her here today. She got a good check up at the heart doctor a week ago, and they would like to do a 3 d mri on her. They need to check if it is safe for her since she was coiled when she was a baby. Stay tuned for more info on my dear Abby. Until then, here is a link about stem cells and how doctors are using them for babies with chd.
http://abclocal.go.com/kabc/story?section=news%2Fhealth%2Fyour_health&id=9179106
It has been a long time since I have posted here. My chd baby is now 14, and will head to high school in a couple of weeks. She has her limitations, but we are so grateful to have her here today. She got a good check up at the heart doctor a week ago, and they would like to do a 3 d mri on her. They need to check if it is safe for her since she was coiled when she was a baby. Stay tuned for more info on my dear Abby. Until then, here is a link about stem cells and how doctors are using them for babies with chd.
http://abclocal.go.com/kabc/story?section=news%2Fhealth%2Fyour_health&id=9179106
Thursday, September 8, 2011
Hypoplastic heart syndrome
For more info on hypoplastic heart syndrome here is a link: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002096/
We choose the 3 step surgeries for Abby. She had the Norwood and was on the vent for a long time. Everyone kept telling us Abby was on life support for a long time. I don't think they expected Abby to live, but here she is today. They had extubated her once, and she failed, second time was a charm! We love you Abby.
Now for your part. If you don't have pulse oximetry testing in your state to screen newborns write your congressmen. Tell one person about congenital heart defects. Look it up if you don't know what they are. Learn something new every day! Tell someone you KNOW someone with a heart defect, and you do! Abby! Get to know Abby, she may talk and walk a little different, but she is just like you and I!
Signs and symptoms to watch out for in a newborn.
Bluish coloring around the lips, feet or hands. There may be some on the chest.
Heavy breathing
Not feeding well. In abbys case she would latch on with breast feeding but couldn't suck. Actually she could, she just didn't have the energy.
If you have a chd in your family history, seek help before pregnancy, and get a 2d ultrasound. Genetic testing should be available, and its better to be prepared then to be totally blindsided. History of a chd can also mean if someone has something as little as a hole in the heart. I didn't know that....so anything that you may think is non essential, do share with your doctor anyway.
Please share my story, and info with all you know. 1 in 100 children are born with a congenital heart defect, and funding is not as much as is pediatric cancers or autism.
Thanks so much for reading.
Until next time.
Carole
We choose the 3 step surgeries for Abby. She had the Norwood and was on the vent for a long time. Everyone kept telling us Abby was on life support for a long time. I don't think they expected Abby to live, but here she is today. They had extubated her once, and she failed, second time was a charm! We love you Abby.
Now for your part. If you don't have pulse oximetry testing in your state to screen newborns write your congressmen. Tell one person about congenital heart defects. Look it up if you don't know what they are. Learn something new every day! Tell someone you KNOW someone with a heart defect, and you do! Abby! Get to know Abby, she may talk and walk a little different, but she is just like you and I!
Signs and symptoms to watch out for in a newborn.
Bluish coloring around the lips, feet or hands. There may be some on the chest.
Heavy breathing
Not feeding well. In abbys case she would latch on with breast feeding but couldn't suck. Actually she could, she just didn't have the energy.
If you have a chd in your family history, seek help before pregnancy, and get a 2d ultrasound. Genetic testing should be available, and its better to be prepared then to be totally blindsided. History of a chd can also mean if someone has something as little as a hole in the heart. I didn't know that....so anything that you may think is non essential, do share with your doctor anyway.
Please share my story, and info with all you know. 1 in 100 children are born with a congenital heart defect, and funding is not as much as is pediatric cancers or autism.
Thanks so much for reading.
Until next time.
Carole
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