tag:blogger.com,1999:blog-7570938751724797715.post2191805456547561171..comments2023-06-13T10:52:54.509-04:00Comments on Because I Said So: A.O.A. (Seriously)Ashleyhttp://www.blogger.com/profile/12161424147949778910noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-7570938751724797715.post-31693776347475516562009-06-07T19:01:14.092-04:002009-06-07T19:01:14.092-04:00That would be so awesome if your daughter was able...That would be so awesome if your daughter was able to skip the first surgery! We are just starting to be given more detailed information about what our little guy is facing, thanks to the docs in Columbus. Now we're hearing things like "endocardial fibroelastosis" and "aortic stenosis". Not sure exactly what all this means for the baby & his future, but we're gonna find out next week during our next echo. <br /><br />I'm waiting for permission to link this blog on mine, but in the meantime I want to share it with you here:<br />http://www.caringbridge.org/visit/leightonharper<br />This little dude was born last August, underwent Step 1 of the hybrid Norwood, and ended up having to have a transplant a few months later. It's quite the story!<br /><br />We are keeping you all in our prayers.Buster's Mommahttp://bustershouse.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-7570938751724797715.post-77796959342341172042009-06-03T23:15:05.792-04:002009-06-03T23:15:05.792-04:00No fair Kevin....you cheated, uh well not exactly ...No fair Kevin....you cheated, uh well not exactly cheated. I never would have guessed them anyway :)Keysgal@QuietWaterhttps://www.blogger.com/profile/14893463644651111533noreply@blogger.comtag:blogger.com,1999:blog-7570938751724797715.post-18327891286604892742009-06-03T22:24:18.832-04:002009-06-03T22:24:18.832-04:00HLHS, DORV, TGA, PS, VSD and MA.
Hypoplastic Left ...HLHS, DORV, TGA, PS, VSD and MA.<br />Hypoplastic Left Heart Syndrome, Double Outlet Right Ventricle, Transposition of Great Arteries, Pulminary Stenosis, Ventricular Septal Defect, Mitral Atresia<br />Do I get a Gold Star?! To be honest, even after just visiting the Dr., I had to think really hard to remember them exactly. <br />The TGA adn MA are actually GOOD things in our case, in what otherwise are bad defects. These two defects to me are God's way of making a shitty thing better (excuse my language but that's what it is). Without these, we basically would have been looking at just HLHS and a really nasty surgery that is worse than what we already have to have. The Transposition salvaged the Aortic Valve and the Mitral Stenosis MAY just restrict blood flow enough that we don't get too much blood flow to the lungs (normal babies need 100% flow but this heart condidtion needs 75%-85%, so if no restriction or if too restricted, then for sure baby would need surgery couple days after birth). <br />KevinKevinhttps://www.blogger.com/profile/08947781532563457527noreply@blogger.comtag:blogger.com,1999:blog-7570938751724797715.post-31224932007987064342009-06-03T14:09:02.316-04:002009-06-03T14:09:02.316-04:00I will not even begin to try to guess the acronyms...I will not even begin to try to guess the acronyms (not even sure if I spelled that right...)All is know is that I am sooooo glad you are with ACH and the docs you have working with you. Yes, it's scary. Yes, there are a lot of unknowns but I know this for a fact.....God is watching, listening and most of all he is with all of us while we travel this road. We can hope that the first surgery can be skipped but if it has to be then you have the best of the best on your team. Thank you for the update and yes, prayers are still being lifted from me and all I know. Much love to all of you.Keysgal@QuietWaterhttps://www.blogger.com/profile/14893463644651111533noreply@blogger.com