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My name is Peggy and my dd is Ellie, 9 weeks. She spent 3 weeks in the NICU here in Denver and we have a very long story of which I will abv. Normal pregnancy, went in for induction due to late decels at 41 weeks, turned into emerg- Csection. Apgar scores of 1 and 8. Needing O2, doctors scrambling to find out what is up with her deformed ears and toe. Enlarged heart later dx as Ebstein's Anomoly, poor feeder now has g-tibe and Nissen, deformed ears recently dx as profoundly deaf (after passing in the hospital). I'm going crazy. I have numerous doctor's apt. including Cardiology, Neurology, Genetics, Audiology, G-tube doc, visiting nurse, swallow clinics ect. Does anyone out there have any experience in any of these areas and can shed some light into my dark days. We are starting to nipple but she is only taking about 2-3 cc's of breasmilk. She has laryngeal reflux and gets disorganized after getting fluid in her mouth. I feel like I'm the only one out there with problems like this. Help, please
 

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(((HUGS)))<br><br>
I haven't had as much as you have thrown at you all at once with such a new baby, so I am sure I can't completely understand... I do know how overwhelming and scary dealing with a gtube and feeding issues, genetics, cadiology, gi, occupational therapy, etc can be and I feel for you! You are not alone and you can get through this. One hour at a time, one appointment at a time and one day at a time. Remember to breathe. Remeber to cuddle your dd.<br><br>
Welcome to Holand.<br><br>
"WELCOME TO HOLLAND<br>
by Emily Perl Kingsley.<br><br>
c1987 by Emily Perl Kingsley. All rights reserved<br><br>
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......<br><br>
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.<br><br>
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."<br><br>
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."<br><br>
But there's been a change in the flight plan. They've landed in Holland and there you must stay.<br><br>
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.<br><br>
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.<br><br>
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.<br><br>
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."<br><br>
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.<br><br>
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."
 

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(((Hugs to you and your dd)))<br><br>
I just want to respond to your post, since we have one of the things you listed. Ds has ebsteins anomaly.<br><br>
He has several other major heart defects. We actually were told his first 4 years that he had tricuspid atresia. Then during surgery when he was 4 they diagnosed it as ebsteins anomaly.<br><br>
The good news is that ebsteins seems to be a better diagnosis than tricuspid atresia. I am not sure how much you have had time to read. Ebsteins anomaly basically means that the tricsupid valve is present, but either malformed, displaced, underdeveloped, or all of the above.<br><br>
With ds they managed to reconstruct his tricuspid valve. This was done during a long surgery, and they used filmanents of scar tissue from inside the right ventricle to form new "chordae", which are the "strings" so to speak, that pull on the flaps of a valves leaflets and force it to open or close. WIth ebsteins, the chordae apparently are not always there.<br><br>
His tricuspid does function now.<br><br>
Here is a link to a website about ebsteins anomaly <a href="http://www.ucch.org/sections/cardio/new/ebstein.html" target="_blank">http://www.ucch.org/sections/cardio/new/ebstein.html</a><br><br>
Here is a diagram:<br><br><a href="http://www.kumc.edu/kumcpeds/cardiology/pedcardio/ebsteinsdiagram.gif" target="_blank">http://www.kumc.edu/kumcpeds/cardiol...insdiagram.gif</a><br><br>
Please pm me if you want to talk. I will keep you in our thoughts.<br><br>
Heartmama
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
Wow, what a load on your plate, as if having a newborn wasn't enough! I want to say "welcome" to our Special Needs Parenting forum! You will find alot of wise mamas here, with alot of good advice and support. Thank you, Liba, for posting the "Holland" story. I always like that one.<br><br>
Good luck to you and your precious little girl, Peggy.
 
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