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Hi, all!<br><br>
I'm glad to have found this section of the forum. I think sometimes when people find out what our unborn son has ahead it makes them uncomfortable (not just online but in my own family). It will be nice to be able to chat with other moms who may have faced some of the challenges I have coming up.<br><br>
Our little boy, Oliver, is due in July, but there's a good chance he'll be coming a bit early. I have polyhdramnios (too much amniotic fluid) so my body thinks I'm several weeks farther along than I actually am. I'm doing my best to hold on and let him keep baking a bit longer. Normally babies swallow amniotic fluid and it gets absorbed, but our boy has esophageal atresia (EA) - an incomplete esophagus - so he cannot swallow and, thus, too much fluid!<br><br>
Once he's born Oliver will need his first operation - a g-tube placed in his stomach so he can eat. Depending on how his weight is and the specific form of EA that he has, is next surgery will likely be to have tension placed on either ends of his esophagus to encourage growth, then the next surgery will be to attach the ends of the esophagus together. His stay in the NICU could be anywhere from a few weeks to the better part of a year. There are a lot of unknowns - sometimes there are accompanying issues with the trachea that can require other procedures and sometimes there are a whole host of other problems that can accompany EA. We're banking on the easiest and most successful fix. If things turn out otherwise it'll be just as hard as if we had spend time worrying about all that now, so why bother?<br><br>
I've been very fortunate to have met a couple of moms who have children with this same condition in our hospital's NICU right now. We've also met with the surgeon who'll be taking care of our little guy and, having been tipped off about his condition prior to birth, we've had a lot of opportunity to educate ourselves and come to terms with the whole situation. Oliver is our first (and likely only) child. I've spent a lot of years imagining the perfect pregnancy and exactly how I'd do things when it came to caring for my baby. A lot of that has to be thrown out the window now and, to be honest, it really pissed me off at first. I've gone through a LOT of emotions, actually - jealousy, anger, self-pity - but I think I've settled in a place where I am just happy that his condition is one that can be fixed. I'm still scared, too, but I'm more hopeful than anything else.<br><br>
Thanks for letting me share!
 

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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/Welcome.gif" style="border:0px solid;" title="welcome"><br><br>
There are several Mom's here that have g-tube experience. I am sure they will post later on this morning.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

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No experience here but wanted to say hi and I'll say a little prayer (if that's okay) that your sweet baby has the best and quickest possible outcome. Wishing you and your family good health.
 

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Hi Jen!<br><br>
First off, I just want to tell you that the spirit that comes across in your post is so hopeful. I know there are dark days, and will be many more to come, but having the kind of attitude going in to this is really going to help you.<br><br>
My little one is still g-tube fed and has a bunch of stuff going on esophageal/trachea/etc. so please feel free to ask any questions you've got. It's great that you've already met people who are living with this situation; that's always a help, knowing people are making it.<br><br>
I hope you find lots of comfort here on this board. I know I have. Probably couldn't have made it through, on many occasions, without the encouragement and support of these awesome mamas!<br><br>
So, welcome.<br><br>
Wendy
 

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<div>Originally Posted by <strong>JenDiggity</strong> <a href="/community/forum/post/15418238"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">it really pissed me off at first. I've gone through a LOT of emotions, actually - jealousy, anger, self-pity - but I think I've settled in a place where I am just happy that his condition is one that can be fixed.</div>
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<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/grouphug.gif" style="border:0px solid;" title="grouphug">
 

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Welcome!<br><br>
My son has a tube (his is a GJ, which is a g tube with another port in it that goes to the intestines). The tube is no big deal once you get used to it, but it does take a while to adjust to it.<br><br>
My son doesn't have EA, but we've met a bunch of kids who had it. For the most part they all seem totally normal now and didn't even have g-tubes anymore. I wouldn't have known they had it at all if the moms hadn't mentioned it.
 

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<span style="font-size:medium;">just dropping in to offer some <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"></span>
 

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I know how it can make some people feel uncomfortable - pity isn't it, right now when you need support!<br><br>
Having a child with special needs (a cleft lip and palate, food allergies and eczema), has opened up a whole new world for me. I guess it just makes you realise just how precious life is, and that the colour of your pram, or nursery, really doesn't matter<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"><br><br>
You sound wonderfully positive - I hope you find the support you need. Your son is lucky to have you as a mother.<br><br>
Alice
 

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Welcome to the special needs board! I think you'll find it a wonderful support through all the emotions and events upcoming (and past processing too).
 

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Glad you found this forum, and that you've found out early about the atresia so you have time to prepare and educate yourself. One of my good friends had a baby with atresia but they didn't find out until he was about 48 hours old and projectile vomiting up every feed (her water broke at about 34 weeks, so she had already lost the idea of a perfect pregnancy and natural birth). All of her dreams of a sweet nursing relationship and the "perfect" baby were dashed and instead he spent a great amount of time in NICU, then surgeries, etc. I think the shock of it all contributed to her PPD. Luckily, his esophagus was long enough to reattach and just put in a feeding tube, so he never needed a G-tube, but even then it was a long road for their family.<br><br>
He's about 3yo now, though, and you'd never know he had ever had any issues! Totally normal, happy healthy kid!<br><br>
Good for you for reaching out for support NOW! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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GAH, my post is gone <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
I don't have time to post it again...but welcome, and I'll be back later <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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I am in awe of your hopefulness. And I understand the fear of the path that lies ahead. I had a baby with a different defect and it was corrected after a while. I also worked in a newborn nursery during this pregnancy and I saw babies that weren't going to make it because their problem was not compatible with life even with intervention. It was a daily reminder that even though my dreams of the "perfect pregnancy and perfect birth, perfect breast feeding....blah, blah, blah" that we did get to have our baby. And it made us love her even more. So, you keep that positive energy going and know that it will be awesome just in a different way.<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/love.gif" style="border:0px solid;" title="love">
 

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well you've come to the right place for support and understanding - the moms here are great! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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We have a g-tube as well and I have been exclusively pumping for 9.5 months now. It can be really scary at first, but it really is not that hard to deal with. Research away and know they we are here for you.<br><br><img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">
 

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I Just came across this via new posts...<br><br>
My DD was born nearly 19 yrs ago now, with jejunal atresia. It's mind boggling to me how much has changed since then. When I was pg & had polyhdramnios, they had no idea why. The little blip they saw on the zillions of u/s I got was called an ovarian cyst. It's just crazy how little they knew. My dd's surgeon even told me that just a few yrs before, my dd would have died as they wouldn't have known how to correct her intestine. And they also had no idea what would happen to her as she grew- they thought she might need reconstructive surgery all over again at puberty!<br><br>
I had her in the hospital when I was 17. I breastfed her & they took her to the nursery. What happened was that she violently vomited while there, & asphyxiated on it. She required CPR & was rushed to Children's Hospital. I had to sign out AMA just to go with her! She had bowel reconstructive surgery when she was 22 hours old. I was told she was probably going to die, then that she'd be mentally retarded with a colostomy bag..... those were hard, hard hours & weeks! I pumped my breastmilk, & held her all day every day for 6 weeks in the NICU while she cried & cried in hunger & my breasts leaked. She was fed via IV, but her stomach felt hungry. They didn't feel her jejunum was healed enough to eat.<br><br>
ANYWAY. My dd is perfectly fine now. She was super unhealthy for her 1st year, but has been awesome since. I do wish that we'd all known what we know now, so we could have prepared for the surgery, & not given her those 1st feedings that exploded through her gut & made her septic. I'm so, so grateful that she lived of course, I can't imagine how many babies had come only years before her that didn't!<br><br>
I'm not really sure what the point of my post is. It just always feels good to share my dd's story with those that understand a little bit of it all. I'm very glad that you are able to plan for & try to emotionally prepare for the upcoming months! It will be far less of a shock for you guys than what I went through all those yrs ago. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile"><br><br>
Good luck with everything!
 

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My ds was born with EA/TEF type D ( he had two tracheo-esophageal fistulas in addition to the EA) His was repaired at 24 hours old. We didn't know prior to his birth. He spent 34 days in the NICU and came home with a GJ tube. He is 14 months old now and doing great. We were able to transition to exclusively breastfeeding by about 8-10 weeks of age.<br><br>
It sounds like you are really dealing with everything well. It took me a long time to be able to say the words "birth defect" and even longer to be able to say them without crying.<br><br>
Please let me know if you have any particular questions I can answer.<br>
And welcome to this board!<br>
Becky
 

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Oh and I forgot to ask if you have been to this site?<br><br><a href="http://www.eatef.org/" target="_blank">http://www.eatef.org/</a><br><br>
They have a really good Interactive Education animation in the Parent Resources section. I wish I had seen it when DS was born.<br><br>
Becky
 

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I can't tell you how much your warm words and stories mean to me. I couldn't make it past the first couple responses without sobbing. It's been one of those days!<br><br>
I have been on the WONDERFUL eatef.org site and also their Facebook page. The encouragement of the moms there and moms like you guys give me SO much comfort. For someone who is a bit antisocial and has always believed she didn't really need others it's a really new experience for me to feel so darn needy emotionally, but it is such a comfort I'm just going with it.<br><br>
I have enormous gratitude for your words of support. I have a great family who has been very sweet since we found out what's going on, but it's hard not to feel pitied. Hearing the stories of other moms and dads who have faced and continue to face big challenges with their kids and can relate to what we're feeling on a completely different level is really helpful. It's been a little lonely - I got pregnant two weeks after we moved 500 miles away from everyone we know to a place where we know NO ONE. It's been a bit rough not having my mom and the rest of the family around for hugs when I need them. Luckily my husband has been AMAZING. I know this forum and the EA/TEF site will really help me not feel so alone through all this. THANK YOU!
 

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Don't let anyone pity you. My first daughter had eczema - when I told him that my second daughter would be born with a cleft lip and palate, he said "You are really unlucky aren't you". He made me feel really bad at the time.<br><br>
Now I know that it is simply not true. My girls are great and I am really lucky.<br><br>
Alice
 
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