esophageal fistula born @ 33weeks now in NICU
I was put on bedrest at 32weeks and we made it to 33 weeks and had to have emergency c-section due to my amniotic fluid level being so low despite treatment. We did get steroids before the c-section but we found out after our son was born that he has an esophageal fistula that has to be repaired surgically. We were transferred to a larger hospital with a great NICU but it is so tough. He has respiratory issues despite the steroids but b/c of the esophageal problem we cannot treat the respiratory issues like we would. He was born at 3lbs10oz and has to be over 4 pounds before the surgery can be performed. I know he will be in the nicu for several weeks. the hospital is great they have given me room to stay in while our son is here since we live so far away. i want to spend all day with him but emotionally i break down when i think about it and when i see him. if he cries i cry when i think of him i cry. i go over and visit a few times during the day and am also trying to take care of myself as i heal.
has anyone had a child with this problem and how did you cope? The hardest part is not being able to hold or touch him.
thanks in advance
tracy
Re: esophageal fistula born @ 33weeks now in NICU
Hi Tracy:
I was in the exact same boat you are. My LO was born at 29W6D on September 25th. He had TEF with Esophageal Atresia. He was born at 2lbs, 5oz. The hospital I delivered at had a level 3 NICU & I thought he would be there for a long time. The neo who was at that hospital let me know (about 4 hours after the emergency c-section) what was going on and that he would be transported to the children's hospital (which is a level 4 NICU). At about 6pm that night, the "Teddy Bear Transport" came and got him (but I was able to tell him see ya later).
He had the surgery to repair both two days later. They wanted to wait until he was bigger but the surgeon felt that the odds were better that the surgery get done earlier than later. I was a nervous freaking wreck. The day of the surgery, I was so upset that I wasnt able to be discharged to be with him, but my fiance' was.
The surgery went fine and then it was the waiting. He was on the ventilator until 10-11-12 and the chest tube was removed 10-17-2012 (this was the day that I was able to hold him). And I (as well as many mom's here), understand about the respiratory issues (my LO went back and forth between CPAP Bubble, High Flow canniula, room air).
During the 1st week postpartum, my mom was my rock. She really helped me get through it. When I couldnt hold him, I was able to open the isolette and talk to him and hold his feet and head (when he got fussy). Each and everytime it was hard to leave him, but I made the best of my hours while I was there.
Also, the women on this board made it bearable too :-)
55 days later we are still in the NICU but I can see the light at the end of the tunnel...
My son was not a preemie (born at 41w3d), but he was born with EA/TEF on 1/12/2010. He was repaired on day 3 of life. He was discharged 25 days later. We are in great shape... he's a totally typical little (almost) 3 year old. Despite my severe polyhydramnios, we did not have a diagnosis until after birth
You ladies should come join us:
US: Bridging the GAP of EA/TEF
EA/TEF Family Support Connection
We'd love to have you all!! The parents who have kids with EA/TEF and adults born with EA/TEF are great resources for all of us who need a little support or just want to celebrate small successes that many other parents don't understand.
Where are you located? There are different state liaisons assigned to each state who coordinate support and get togethers (obviously, later on for you guys).
Please come find us on Facebook. We really do embrace new families!! We have many, many preemie ea/tef families.