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My baby needs heart surgery


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  #1  
March 17th, 2012, 08:58 PM
geogeek's Avatar Marsi's Mommy
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Well, first off, I would like to say hello. I can tell this board is a little slow, but I wanted to post here anyway. My name is Rachel and I just had my first baby the end of October. She had a heart murmur since birth but it didn't concern my pediatrician until her 4 month appointment on March 1. She sent us to a cardiologist and Marsi had an echo done. It turned out to be a PDA that didn't close after birth. We thought that she was going to have surgery to close the duct this past Thursday, but it was postponed to get a better echo with sedation. Marsi goes in for that echo on Monday at noon (MST). Along with the PDA that needs to be fixed now, Marsi has a hole in her heart that will need to be monitored the next couple of years to see if she needs open heart surgery when she is 3. We pray that closes on its own.

It did come as a bit of a shock to me. My husband doesn't know much about his parent's families because they live in a different country. After Marsi was diagnosed with the CHD he heard that it ran in his dad's family.

Well, I just wanted to say hello and see if there were other ladies with a wonderful child like mine. Overall she is amazing and healthy. She just happens to have a CHD.
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  #2  
March 18th, 2012, 07:14 AM
Hazel's Avatar Mega Super Mommy
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I am also Rachel

My little girl was born in September and her murmur was so loud you can hear it with your bare ear so she had her first echo, EKG, and cardiologist visit while still in hospital. She will be having open heart surgery in April.

Hoping all the best for Marsela's surgery! I hope her hole closes on it's own so there is no need for OHS What type of hole is it?
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  #3  
March 19th, 2012, 07:17 AM
geogeek's Avatar Marsi's Mommy
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There are a lot of us Rachels out there isn't there... Marsi's hole is an atrial septal defect. I guess with all of the heart problems a baby can have, Marsi has 2 that are relatively minor. We are going in for her sedated echo today and hopefully getting a surgery date as well. She is a happy little girl regardless of these issues and that makes it easier.
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  #4  
March 19th, 2012, 08:07 AM
Hazel's Avatar Mega Super Mommy
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From what I've read, an ASD is a "good" one to have if you have to have one Izzy's was a medium size one so the chances were lower that it would close on it's own but it's very small now If it wasn't for her VSD, she wouldn't need the surgery! Hopefully Marselsa's ASD will never need surgery and the op to close her PDA will be it for her!
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  #5  
March 19th, 2012, 08:39 AM
geogeek's Avatar Marsi's Mommy
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That is really what we are hoping for as well! Having Isabelle's ASD closing is making me REALLY hopeful for Marsi!
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  #6  
March 19th, 2012, 06:35 PM
Hazel's Avatar Mega Super Mommy
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Izzy's cardio said ASDs sometimes don't even need to close all the way because small ASDs tend not to cause problems and can be left alone. If Iz's ASD is still open at her OHS, they will go ahead and stitch it closed because they are already in there
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  #7  
March 20th, 2012, 07:47 AM
geogeek's Avatar Marsi's Mommy
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That is what our cardio said as well. Right now they don't know if it is a flap or a true hole which is even better. Her Echo went well yesterday. They were able to get some really good pictures and determine that she does only have the PDA and ASD. That was wonderful to hear. I know I wasn't ready to hear that she had another problem. I should get a call tomorrow to schedule her surgery. Since it is a minor surgery, they should be able to have it scheduled for next week. I also just heard I might start a full time teaching job next week too so it is going to be interesting. Luckily I know the school.
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  #8  
March 20th, 2012, 11:32 AM
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Hi, my daughter Siera was born prematurely and has three different heart defects. She has a PDA, PFO and a bicuspid aortic valve. She had her annual checkup in February and it was decided that we're going to go in and close the PDA sometime this summer. According to her doctor it's not really that urgent but the left side of her heart is starting to become enlarged and DH and I would rather just get it over with now than wait and end up doing it in a year or two anyway. I figure the younger she is, the least traumatized she will be.

I hope our babies have successful surgeries!
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  #9  
March 20th, 2012, 02:27 PM
geogeek's Avatar Marsi's Mommy
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It is because of the heart enlargement that we are getting the surgery now. Do you know when her surgery is going to be?
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  #10  
March 20th, 2012, 08:32 PM
Hazel's Avatar Mega Super Mommy
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Quote:
Originally Posted by geogeek View Post
That is what our cardio said as well. Right now they don't know if it is a flap or a true hole which is even better. Her Echo went well yesterday. They were able to get some really good pictures and determine that she does only have the PDA and ASD. That was wonderful to hear. I know I wasn't ready to hear that she had another problem. I should get a call tomorrow to schedule her surgery. Since it is a minor surgery, they should be able to have it scheduled for next week. I also just heard I might start a full time teaching job next week too so it is going to be interesting. Luckily I know the school.
I'm so glad they did not find any other problems! I hope the surgery to close her PDA goes well

And congrats on the job!

Quote:
Originally Posted by SassyMama View Post
Hi, my daughter Siera was born prematurely and has three different heart defects. She has a PDA, PFO and a bicuspid aortic valve. She had her annual checkup in February and it was decided that we're going to go in and close the PDA sometime this summer. According to her doctor it's not really that urgent but the left side of her heart is starting to become enlarged and DH and I would rather just get it over with now than wait and end up doing it in a year or two anyway. I figure the younger she is, the least traumatized she will be.

I hope our babies have successful surgeries!
The heart enlargement is also the reason we need to move forward with surgery--they want to repair before there is permanent damage to her heart and lungs.
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  #11  
March 22nd, 2012, 08:19 PM
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Quote:
Originally Posted by geogeek View Post
It is because of the heart enlargement that we are getting the surgery now. Do you know when her surgery is going to be?

We haven't scheduled it yet. We're waiting for a phone call from an interventionist (?) so we can sit down, go over all the details and schedule the actual surgery.
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  #12  
March 23rd, 2012, 05:19 PM
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We had to wait slightly over a month between her cardio referring her to surgery and our pre-surgical consult. First the committee had to review her file and decide if she was a candidate and then we needed to set up an echo and her surgeon for the same day so he could see exactly what needed to be done and how soon. It seems to take such a long time sometimes! But that's a good thing--means my little one is doing ok if she is non-urgent
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  #13  
March 23rd, 2012, 05:27 PM
geogeek's Avatar Marsi's Mommy
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It must be different at our hospital for non OHS. Marsi had her 4 month well child visit on March 1st. She was recommended to a cardiologist and was seen by him March 5th. The surgery that was postponed was the 15th. Now her official surgery date is this coming Monday the 26th. So from first cardiologist appointment to surgery it is exactly 3 weeks. I feel for you ladies that have to wait longer. I know that this is a God-send because I just want it done so she can get to healing and getting better.
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  #14  
March 24th, 2012, 08:25 PM
Hazel's Avatar Mega Super Mommy
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I think the fact that we have known about Isabelle's CHDs since birth is a factor in her surgery timeline. Her condition has been monitored and medicated so that we could wait as long as possible before needing to turn to surgery. She is stable so they want to give her time to be bigger/stronger. But now that her growth is stalled out, it's time. There are just four pediatric cardiovascular surgeons in our state so waiting is expected if you have a stable baby
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  #15  
March 25th, 2012, 09:43 PM
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Siera was premature and spent almost three weeks in the NICU. We found out about her cardiac defects before she was discharged so maybe the waiting does have something to do with that? I think we've known since her first checkup that surgery was going to be necessary at some point but we just weren't sure when. Her cardiologist told us that we could put it off until next year if we wanted to but - why wait? She's going to need it either way so we'd rather get it over with. I guess that's also why they're not rushing it. It really isn't urgent.

He also told us that this type of cardiac surgery (although it seems like a HUGE deal to the parents) it really is a basic, minor type of surgery in their field since it's the most common.
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  #16  
March 26th, 2012, 08:37 AM
geogeek's Avatar Marsi's Mommy
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Well, Marsi is having surgery right now. They should be done anytime now. I can't wait to hold her again. At first update she was doing really well.
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  #17  
March 26th, 2012, 09:33 AM
Hazel's Avatar Mega Super Mommy
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My thoughts are with you and Marsi {{hugs}}
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  #18  
March 26th, 2012, 12:12 PM
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Quote:
Originally Posted by geogeek View Post
Well, Marsi is having surgery right now. They should be done anytime now. I can't wait to hold her again. At first update she was doing really well.


Hope everything goes smoothly! Hugs to you both
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  #19  
March 26th, 2012, 04:31 PM
geogeek's Avatar Marsi's Mommy
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All went well. We are in the ICU right now but should be in a regular room tomorrow. She has pain but we are managing it. I will post pics later.
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  #20  
March 27th, 2012, 05:21 AM
Hazel's Avatar Mega Super Mommy
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Yay! I'm so glad everything went well! Hopefully her pain doesn't last too long--our surgeon told us most babies bounce back really quickly and go home on just Tylenol.
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