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  #1  
September 19th, 2011, 07:16 PM
SmilesAreContagious's Avatar Rheanna Mommy-2-b
Join Date: Mar 2011
Location: Los Angeles County, CA
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Any updates? News?

For those of you who dont know I am expecting. I am 25 weeks and Carson's heart has two abnormalities. One VSD and the other being that his whole aorta in his heart is too small. He will need open heart surgery when he is born.

As for what is new? I dont really have anything new to share. I did find out that I will still be able to have a regular birth, but I will be induced and I also learned that he will have his surgery within the first 7 days of being born.
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  #2  
September 23rd, 2011, 05:54 PM
Hazel's Avatar Mega Super Mommy
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I'm sorry your little one is going to need surgery so soon But how wonderful that they were able to identify what is wrong so they (and you) can be prepared for his birth and get him the treatment he needs right away

We were diagnosed soon after birth with a large VSD and a medium ASD--at the moment, she is doing great but her cardiologist warned us that the one month mark is where things can take a turn for the worst so we have to keep a close eye on her. We need to take her to the doc often for weight checks to ensure her growth isn't being restricted--she had a nice weight and length gain at her last weight check so that is great Next cardiologist appointment is coming up on Oct 4th where she will have a repeat EKG and Echo to see if her holes have closed at all and to discuss whether or not she'll need surgery now or later or maybe even never if all goes well
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  #3  
September 28th, 2011, 07:02 PM
SmilesAreContagious's Avatar Rheanna Mommy-2-b
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Location: Los Angeles County, CA
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Wow, according to your ticker Isabelle is only 2 weeks. CONGRATS! Im sure she is beautiful. How did they find the VSD and ASD after she was born? I love that she is gaining weight and length just like she should. That is awesome news. I hope that she ends up never needing surgery.
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  #4  
September 29th, 2011, 08:10 PM
Hazel's Avatar Mega Super Mommy
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She had a very pronounced heart murmur at birth and they ordered a cardiologist consult right away--she was born Friday evening and on Sat she had her firerst EKG and on sunday her first Echocardiogram. The pediatric cardiologist came to the hospital on Sunday to talk to us in person and let us know what the tests revealed and what the treatment plan is.

Right now, the blood flow through the holes is kept in check by the higher pressure from a newborns lungs so she wasn't struggling at all but he said the pressure lessens and goes to a more normal level around a month old and if they holes have not closed up enough, the blood flow through the hole can increase enough to make her struggle to breathe and tire easily. It isn't likely the holes will completely close on their own but it is possible. At the very least, he is hoping they will close enough that we can just keep watching her and give her more time to keep healing

She had another weight check just a few days ago and was up to 8 pounds 4.5 ounces, which is a few ounces over a pound gain from her discharge weight

Just a few more days until her next appointment and we will know more!
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  #5  
September 30th, 2011, 12:33 PM
SmilesAreContagious's Avatar Rheanna Mommy-2-b
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Location: Los Angeles County, CA
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Wow, Im sure that was difficult to find out all at once but Im so glad that there is a chance her hole can close up on its own. She seems to be doing great. I hope she gains more weight by her next appt and that all you find out is good news. =)

We are in the process right now of transferring care to Childrens Hospital in Los Angeles so that Carson can have the best care possible when he is born. So I should he having an appt with them in less than a month so hopefully I will have more information then.

Also, I know this board is super slow, and Im brand new to it myself (and trying to learn as much as possible) but if you want to PM me feel free.
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  #6  
September 30th, 2011, 05:00 PM
Hazel's Avatar Mega Super Mommy
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It's great that you have time to line up the best care for Carson--as hard as these things are, it helps to have a medical team you trust to walk you through it!
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  #7  
September 30th, 2011, 05:04 PM
SmilesAreContagious's Avatar Rheanna Mommy-2-b
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Location: Los Angeles County, CA
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Yea, we are working on that. I have total confidence in the team we have for him. We live in southern California so I feel like we have the best of the best at our finger tips. Thank you for your kind words =)
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  #8  
October 4th, 2011, 07:36 PM
Hazel's Avatar Mega Super Mommy
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The Bad News: Isabelle had her cardiologist appointment today (she was born with two congenital heart defects) and the holes in her heart have not improved at all

The Good News: Despite not closing even a little bit, the holes are not affecting her health (yet) so we can continue to keep a close watch on her and give her body time to start closing up those holes on it's own. We are to do frequent weight checks to make sure her growth isn't being affected and our next cardiologist check-up is in a month. If the holes do not make any progress within three months, it will be time to talk surgery
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  #9  
October 10th, 2011, 09:21 PM
SmilesAreContagious's Avatar Rheanna Mommy-2-b
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Location: Los Angeles County, CA
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Aw, Im sorry you didnt get the news you hoped for but Im glad that the hole isnt affecting her. That is great news. I hope that they will start to close up on their own and that you and her dont have to go through surgery.
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  #10  
October 10th, 2011, 09:41 PM
Hazel's Avatar Mega Super Mommy
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I hope so, too!
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  #11  
October 24th, 2011, 09:47 PM
Hazel's Avatar Mega Super Mommy
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Isabelle had her next growth check today and she is doing great So far the heart defects haven't slowed down her growth--fingers crossed that at her next appointment, they have started to close up on their own!

Birthweight on 9/7: 7lbs8oz
10/24: 10lb5oz

Birthlength: 19in
10/24: 22in

Birth head circumference: ~13.39 in (hospital takes head in cm so converted it )
10/24: 15 in.
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  #12  
November 8th, 2011, 10:10 PM
Hazel's Avatar Mega Super Mommy
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Isabelle update:

The cardiologist is very pleased with Isabelle's growth--she is gaining weight and length very well and we aren't seeing the growth restrictions he was worried about.

However, her breathing is becoming more labored and is way too fast--the blood flowing the wrong way through the holes in her heart and getting pulled back up to the lungs (despite already being oxygenated) is increasing and is making her heart and lungs work harder. She had a bit of congestion a few weeks ago but once that cleared up, she was still breathing a bit funny and he confirmed today that it is because of her heart

She is now on two different meds twice a day, Lasix and one that starts with an S that I can't remember off-hand. They are supposed to help with the excess fluid in her lungs and heart so hopefully we will see an improvement in her breathing and she won't reach the point where she's too tired to eat and her growth slows.

Her next echo is next month to check on the size of the holes--if they haven't started to close on their own, we will definitely be discussing when her surgery is
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  #13  
December 5th, 2011, 08:40 PM
Hazel's Avatar Mega Super Mommy
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This is going to be such a long week....it's moving very slowly

Thursday is our next cardio appt and we find out if Iz's holes have closed enough (if at all :/) to postpone surgery
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  #14  
December 8th, 2011, 08:57 PM
Hazel's Avatar Mega Super Mommy
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Good news first. Her medium ASD is now a small ASD! Woo-hoo! Celebrate for a moment because unfortunately the bad news far outweighs the good

Her large VSD has closed just a tiny bit and is still in the large category. That is the serious one because it is so big. Her cardiologist doesn't think we need to do surgery right away but she will get another echo in a month to check it again so thirty days is the next decision-day for surgery. Unless it starts closing quickly, surgery for this hole is becoming a when, not an if. ack. He also discovered that one of the arteries is not growing properly and the restriction is not good. He will keep an eye on it because it, too, may need surgery--if the VSD needs surgery, they will definitely repair the artery while they are in there. She is continuing on the heart meds to help with her breathing but even with those, her poor little heart and lungs are working overtime and her growth has now been affected. She lengthened by half an inch in the last month but barely gained anything--just a few ounces. I was afraid of that because lately nursing has just tired her out. She eats whenever she's hungry but apparently she's taking just enough to maintain and is just too tired to get more out to grow. So now I need to track down a pharmacy that carries breast milk fortifiers so I can supplement her nursing with bottles of expressed milk with the fortifiers to get some extra calories in her so she can start growing again. I also need to get a pump--the one I had with Sterling, I sorta killed the motor on because I used it so much LOL Iz also needs to see her regular doctor every week from now on so she can get her growth and vitals checked just in case she worsens and needs to go back to cardio and/or surgery sooner than one month
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