depressed, prob back to the hospital tomorrow

vouvoune

so my 30 weeker was born with her esophagus not attached to her stomach. that was repaired at birth, 4.5 mo ago. She has had issue with feedings and got off her feeding tube 2.5mo ago and is now on thickened milk because she aspirates (honey consistency)

In the past 5-6 days she has been couching and choking on her food like crazy so Im fearing that her esophagus narrowed too much because of scar tissue and needs a procedure to stretch it...We are going for an esophogram  tomorrow early in the morning...Frankly there is no "easy"way out as if this is not the issue I dont know what is. The solution is not pretty and after spending 2 months at the NICU I SOOOOOO dont want to be back there, this is way too fresh and it is bringing back all kinds of feelings...

I feel  so  alone and isolated as I feel I have no one to talk to about this, certainly not all my friends who just had their perfectly healthy babies in the past few months...I was freaking out last night, crying while feeding her and watching her teary eyes from choking...this is just SO hard and way more than what I had "signed up for"...this is my first child and my husband and I waited 10 years of marriage  before decided to have a child to enhance our life and it has been not even close to what I had imagined...

 anyways, sorry some days are better than others, I just need to vent I guess...It's so heard because with pathologies that are rare like that you can;t just google "is it normal when" or "what do u do when"  you are just by yourself with no one really to share similar experiences with or hear how it is with their children...it's so hard...

TriciaJoy

I'm so sorry. Robbie's stomach problem is different from your situation, but he's had to have surgery twice to fix it and we've been through some pretty similar things. He's been in the hospital 3 1/2  times since leaving the NICU and it SUCKS.

Hang in there, babe. I wish I had some great words of advice, but unfortunately there just aren't any. You'll muddle through- same as you did when she was born. But it will definitely suck.

gymrat

I am so sorry! ((HUGS))

vent away!

preemieparent

Sending big hugs your way.  I know it's hard when things don't seem to go at all how you planned.

Have you paged Nanakawaz?  She's usually more on the special needs boards these days.  Her son has a very narrow airway and has had to have several procedures on it amount other issues.  She might be able to offer you some help or additional support.

Take care.   And vent whenever you need to.

orangejuice

I'm mostly a lurker, but had to respond to hopefully provide you a little reassurance.  My daughter is a 29 weeker and this winter we discovered that her airway was restricted 50% from scar tissue presumably formed from her intubation during the first 24 hours of life. 

 It was incredibly scary to be back in the hospital again, but they were able to perform an experimental but endoscopic prodedure to open up her airway.  It worked on the second try.  The procedure involved using a balloon (similar to an angioplasty balloon, but made especially for the airway/esophagus) that they open up in order to loosen the scar tissue and push it back.  Though the procedure is experimental for use in airways, my understanding is that it's much more commonly (and successfully) used in the esophagus.  The whole procedure took about a half hour and recovery wasn't bad at all - my daughter's throat was sore and her voice was a little hoarse for about the first 24 hours.  Her airway is still about 25% restricted with scar tissue, but it's open enough that it hasn't caused her any more problems (knock on wood!).

If the balloon dialation doesn't work, it may be an option to use a CO2 laser to burn the scar tissue away.  This wasn't an option for my daughter but my understanding is that this method is a sure thing in terms of success and is also endoscopic.

 Good luck and please keep us posted!

Andrea

mommamorris

i'm so sorry for your little one, and for you. times in the nicu are trying at best.

i know you'll hang tough for that sweet little girl. vent as needed. it really helps.

lemen99

I'm so sorry! I can't even imagine.  Lots of hugs and prayers to you and I hope your LO is okay.