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12-20-2012 at 2:49 PM
Usm123
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Pulmonary Vein Stenosis and Intro

DS2 was born at 26 weeks and is 6 weeks adjusted 4 months actual. He came home at exactly 4 months on 12 4. He came home on O2, and with a G tube. He got the G tube because he couldn't finish it bottles and we were told the oxygen maybe making it hard to suck, swallow, and breath. He was diagnosed in the NICU with BPD and a bicuspid aortic valve.

We went to the cardiologist today for a routine follow up. DR said his aortic valve is fine but he has Pulmonary Vein Stenosis in one vein the brings o2 from the lungs. The narrowing of this vein could be the cause of his breathing problems. He is sending all of his scans to another hospital in the state. He will have to have a catherization and possibly surgery. We go back on the 17th.

Any experience or words of wisdom with this heart issue? I googled and it was not my friend.
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12-20-2012 at 3:10 PM
JoJoGee
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Welcome!  I don't have any experience with Pulmonary Vein Stenosis, but my daughter was also born at 26 weeks.  She also came home at 4 months, with a trach, a G-tube, and oxygen.
 
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12-21-2012 at 2:33 PM
Assembly_R...
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No experience but Welcome!

Google is NEVER anyone's friend. :)
Swingin' into Spring!

 
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12-26-2012 at 2:23 PM
ChoicesMom
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My son was born with TOF and part of that is PVS.  He had OHS in June and is doing AMAZING! I know of many kids that were born with PVS and did not need surgery, it resolved itself or got to a point where it would not need surgery.  T&Ps for you all Smile
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12-27-2012 at 7:03 PM
Usm123
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ChoicesMom:
My son was born with TOF and part of that is PVS.nbsp; He had OHS in June and is doing AMAZING! I know of many kids that were born with PVS and did not need surgery, it resolved itself or got to a point where it would not need surgery.nbsp; Tamp;Ps for you all [:]


Thank you for this!
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12-31-2012 at 1:40 PM
imeltice
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ChoicesMom:
My son was born with TOF and part of that is PVS.  He had OHS in June and is doing AMAZING! I know of many kids that were born with PVS and did not need surgery, it resolved itself or got to a point where it would not need surgery.  T&Ps for you all Smile

I was going to suggest researching some of the information about TOF, as PVS is a part of that defect.  My DS had the other three defects, but not PVS, so I can't comment on it specifically, but I've also heard it's not always surgical, but hopefully the cardiologist will be able to put your mind at ease.  T&Ps for you.
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01-01-2013 at 3:25 PM
Usm123
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He's had atleast 4 scans while being in the NICU and aside from the bicuspid aortic valve no other issues have been spotted. The cardiologist said he's not surprised he just saw the PVS since the circulatory system does develop until 1 to 2 months. Would TOF be something that would be noticed in a previous scan or does it develop like the PVS?

Hopefully we hear from the Dr's in Nola this week! The waiting is killing me.
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01-06-2013 at 8:22 PM
Magenta728
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DD has something similar. She also has Pulmonary stenosis, but it is in the artery that leads away from her heart. Hers is minor though, so we haven't discussed surgery yet.(She also has an ASD and is being monitored for Long QT Syndrome)  I just wanted to say that the Babies with Heart Problems board on BabyCenter is an amazing resource. ((hugs)) mama.
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