Any other TEF (Tracheoesophageal Fistula) Parents

Hi, my name is Stacy and I have a son with Tracheoesophageal Fistula (TEF) Our son was born 8 weeks early and we have had one heck of a long road....surgery at 6 days old, ventalator, CPAP, desats (both oxygen and heart rate) feeding issues, NG tubes, now he has an NJ tube and is on a feeding machine for 20 out of 24 hours a day. It sounds like alot but really now...its nothing... :) just having our baby home with us and knowing that he is healthier now is the best thing ever. Our son was 3lbs 13oz at birth and now weighs 8lbs 15oz. I was just wondering though if there is any other parents out there of TEF babies...would be nice to chat. Hope you all have a safe and happy and of course healthy holidays!!!

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I am a mom to a 27 weeker who does not have TEF but my sister just had a baby 2 months ago and she has TEF. She had surgery at 2 days old and after 6 weeks in the hospital she is finally at home. She is on meds for reflux and is having thickened feeds but is now gaining weight and doing well. We thought that the family had been through a lot with my son being born at 27 weeks and then my niece was born with TEF in the same year. It's tough to watch the little ones go through so much but they are so strong. Congratulations on having your son home it sounds like he is doing very well. Happy holidays!

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Would you mind me asking how she is doing with her feeds? Is she on a tube and was she term? I did nurse my son for a bit and he also bottle fead however now that he has his NJ tube things have changed. We are going to try bottle feeds again the beginning of January. Happy holidays to you and your family as well.

Stacy

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Hi one of my twins born at 34 weeks is a tof baby thats what we call it here in the uk. he has turned blue 3 times ! He is in nicu and will be for some time . his brother contacted nec so having a nightmare. i have ordered a book called the tof child which the speech therapist recommened . Jan 12 he will have a contrast doneso for now it is all tube feeds . otherwise than that all ok.
What is a feeding machine ?
My son also had an op at 7 days ..its great you have him home .
How is it all going

jhleisa

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I am awaiting the arrival of my second son who will be born with EA/TEF. I orginally went into preterm labor at 30 weeks, just days after I found out that he had this rare condition. I have been on hospital bedrest since then. Just last week I was released from bedrest, but have to remain in the hospital so I am close to a NICU (I live almost 2 hours away). Our little miracle should be making his appearance any day now. I did find this great site for parents/ surviors of EA/TEF. It has a community formum to interact and share with other people going through the same thing.
www.eatef.org
I have made a good friend from there that really has helped me make it through these last 7 weeks.

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my daughter gracie was born with tef and ofcourse along with the tef other problems arrive, she was in the hospital for about 4 monthsish. . . she is home, growing slowly, she has a mickey button, and a trach. . . the mickey button is because she has developed oral aversion and the trach is because she has bilatteral paralysis of vocal cords and they dont know what caused that, we r told that the trach and mickey button are not permanent. she is now 15 months old and very small for her age and a little bit delayed for being in the hospital so long, they say she will catch up soon, she understand what she should for her age but she cant do alot of things she should be doing

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Hi girls!!

Sorry its been a bit since I was on this post, things have been very busy around our house lately. My husband and I just got back from our first trip without the baby.... was that ever hard, I think I cried most of the time, and he was perfectly fine with his grandparents and to top it off we were only gone for 3 days!!! lol Justin is doing great, he is thriving and is now really trying to attempt the "big boy" foods. He still has a texture adversion and seems to be getting the "clog" we are in the process now of waiting to find out about the sialation surgery. It scares me to think of him going back to the operating room but if this will help we have to do it. He has had a few brown colored spit ups, so we are hoping when he has his upper GI that all will be ok and that his esofigus us just irritated. I'm not sure if you have seen the last post I made but our local hospital here in Cape Breton is having a fund raiser this summer for our NICU and our little boy was choosen to have the story done on so he will be the "spokes baby" we are so excited. Well, he is out in the other room and is being quiet so I better go and see what he is up to... must be something good I can hear my husband laughing at him :) I hope all of you and all of your precious miracles are doing GREAT, I will post again VERY soon. Take care and love and prayers from Cape Breton :)

Stacy

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My first daughter, Jazlyn was born Nov 22, 2007 at 36w 5d and had a TEF. They sent her that night to the IWK where she would stay for 2 weeks. She had her corrective surgery at 2 days old, and had the second expansion surgery this spring. We were noticing that food would get "stuck" and she would cough until she threw it up. The second surgery was a god send! She no longer throws up her food, everything seems to be staying down fine, and shes a happy little 2 year old now. I'm a little worried now tho.. not because of her, but because I am pregnant again and Due Jan 24/2010. I'm really scared because of what I went through with her. I never really got to hold her, they took her from me right away... we didn't know she had this problem before she was born. But I am afraid to do it again. Anyone else here have any suggestions, or have gone through the same thing?

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Hi, this is my first time on this site. I was wondering if anyone can give me updates on their TEF kids. I have 8 year old twins boys who were born at 29 1/2 weeks. One was born w/ TE fistula, he was in ICN for 6 1/2 months. He is developing very slowly. I would like to connect w/ parents who are going through the same thing. We live outside of Charlotte, NC. Would love to hear from all of you!

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