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Feeding Tube PIOG

Posted by on Apr. 19, 2010 at 11:29 PM
  • 10 Replies

So a couple of you are aware, but I thought I'd share with everyone. Aubrie went for her OPM (swallow study) today, and they found that everything she swallows goes into her airways, which is what has caused her infections, but it also is what makes her choke and gag. So they wouldnt let her eat from 9 or 10am (she had to be hungry for the study) until 6:30 when they put a feeding tube in. She has to have it until she grows out of it, or if they find something surgical in June when they do the scope to see if it is Lyrngeal Cleft. Tomorrow I have to put it in her nose and take it out and replace it. I will have to do this once a week or more depending on if she pulls it out. I am oddly enough okay. I cried for like 10 minutes then I was fine. I am more in the mode of, okay let's deal with this so she gets better. The drs are convinced she will grow out of this (but there is a possibility she wont) and her lungs will be stronger because nothing is going in them! So she'll be healthier over all. I will have to feed her formula through the feeding tube and thats all she can have. I'm really sad though that my baby can't have cake on her first birthday :( I feel terrible that I am caught up on that. And I gave her her last bottle ever earlier today :( I am relieved though that we FINALLY have answers!

by on Apr. 19, 2010 at 11:29 PM
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Replies (1-10):
MikeysMom51108
by on Apr. 19, 2010 at 11:31 PM

You seem to be handling this very well. Very strong of you.

I hope this helps and she gets better. I hope that one day she can have it removed. Overall, I hope that she's happier and healthier regardless.

Best wishes to you and your daughter!


Mama2ETA
by on Apr. 19, 2010 at 11:35 PM

Thank you. It's very hard, but its been such a long time of no answers. Since she was born. She is 10 months old now. It's sad but i've become immune to the drs. And just know to take care of what needs to be taken care of.

Quoting MikeysMom51108:

You seem to be handling this very well. Very strong of you.

I hope this helps and she gets better. I hope that one day she can have it removed. Overall, I hope that she's happier and healthier regardless.

Best wishes to you and your daughter!


AmyParent
by Amy on Apr. 20, 2010 at 2:31 AM

My daughter was a 33 wk preemie...and the docs gave me a 3-4 week est. NICU stay for her...well as it turned out after 5 weeks they still couldn't ween her off the oxygen and decided to take a scope and see what was going on...turns out she had a big medical term I still can't pronounce :) but basically an airway obstruction that she would have to outgrown...but the doctors had NO clue the time frame they said they had never seen it a newborn before so then it became the waiting game and talking about bringing her home on oxygen b/c otherwise she was growing great eating great..(at this point she was 7 lbs which is HUGE for the NICU!) and then one day she just didn't need the oxygen anymore and hasn't had a problem since...sooo to make a long story short, I know the feeling of "well we just got to wait for her to outgrow it" senario and it is pretty tough.  I'm glad you finally have the answer b/c not knowing is even harder...I will be keeping you guys in my thoughts! Strength to both of you and your whole family.

ShireeCS
by on Apr. 20, 2010 at 3:20 AM

Well I am glad they figured it out. It hard that she is going to be on a feeding tube and hopefully it wont be for too long. Good luck to both of you. I have been thinking about you guys and was wondering if they found anything.

SpencersMommy92
by on Apr. 20, 2010 at 7:05 AM

Wow momma, I have to say that I am really impressed with how well you are handling. this....it probably helps that you feel like you are finally getting some answers. Hope all is well and things go the way the doctors' plan. Hopefully you will have concrete answers in a couple weeks!!! :) Keep your head up!


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mstevens10
by on Apr. 20, 2010 at 8:17 AM

Your a very strong and brave woman. Hope she grows out of it

Mama2ETA
by on Apr. 20, 2010 at 11:44 AM

Thank you girls! I just found out they are transfering her to their larger location where they are going to move the scope up to hopefully by the end of this week, so if it is lyrngeal cleft they can fix it and if it isnt they want to talk about a more permenant feeding tube (g-tube in the stomach)

Brittany.Dann
by on Apr. 20, 2010 at 11:45 AM

 You are very strong. I am praying for you and your family.

ShireeCS
by on Apr. 20, 2010 at 11:45 AM

Good hopefully they can move the scope up and get it figured out sooner!!!

Mama2ETA
by on Apr. 20, 2010 at 7:15 PM

They are doing the scope tomorrow morning. She is sleeping right now, and I came home to get the boys' clothes since they are spending the night with my parents and thought id update. Here is a picture of this happy baby! I am so proud of her!

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