Seeking Moms in Los Angeles Area Who Have a Child Born with Esophageal Atresia

intersetingly enough you posted that 3 years ago exactly, I was just wondering how you and your daughter were doing? I have a one yr old with ea/tef and we just spent her bday in the ICU where I am as I type (she had bronchiolitis and with her prematurity (10 weeks ealry) and her tracheomalacia she went into respiratory distress.
Anyways, we have lots of feeding issues and she hasn't been eating for close to 2 weeks now so I am super scared.
Anyways, I wanted to hear from you hoping to hear some uplifting news as I feel so drained from this first very tough year and your daughter is probably 3 years ahead in this fight :)
V.

I haven't experienced what you're going through, but I can only imagine the challenges you've faced not only getting adjusted to being a mommy AND dealing with his special condition. You're so brave! I do hope you find someone in a similiar situation to help with your specific questions and concerns, but I'm glad to offer friendship & moral support--I had my first in July.

M.,

I have no experience with E/A, but my almost 4 year old was a former 28-week preemie. She spent 3 months in the NICU during which time she was either on IV TPN or NG Tube Fed. She came home 100% oral, but suffered severe reflux which lead to a lot of feeding difficulties which we are still struggling with today. We are still dealing with numerous Doctors Appts, Therapies, and medications so I understand that part of what you are dealing with.

We currently live in Northern Cal, but grew up in LA. Our extended families still live in the LA area and are down there on a regular basis. Please e-mail if you ever want to "chat"

Hi M.,
I don't have experience with this, but I'm hoping that you've been in contact with either a pediatric speech pathologist or occupational therapist. There are specialist that work specifically on pediatric swallowing. Your local children's hospital should be able to refer you to a specialist. Best of luck.
K. Aydelotte, MS,CCC-SLP

Hi M.,

I can not say that I know what you are going thru but i can definitely offer you support if you just need to talk.

My daughter Camryn is 4 months old and has pretty bad reflux. We have her on Prevocid (sp?) and it has helped her a lot but there are still times that she is super fussy and I know her tummy acids are bothering her. She has trouble sleeping at night because of it all. The doctors were extremly reluctant to let us start medication and kept insisting it was a food allergy since she was gaining weight and is at the top of the growth charts.

I'm sure you've had it worse than me but just wanted to extend my sympathies.