Sunday, September 25, 2011

I know I must sound like a broken record

but I HATE puke.  I HATE that every time we have hooked Lillian up for a feeding for the last week maybe two...that she is gagging and puking with it.  Today, at her last feeding, it was more than just  a little puke, it was a volcano.  Projectile.  While we were in Noble Romans for my nephew's bday.  I drove home conversating with the Lord about why she has to puke.  Her whole life has been like this.  It can be SOOOOO discouraging.  Even from the time she was born she has struggled with this.   I hate that she cannot even really eat anything to make up the calories.  She does not have a nissen.  I don't really believe it is GERD.  She was on medications for over two years and they didn't make a difference.  Ususally, throwing up is her "tell".  Her tell that she is sick in some way.  Her ears are not oozing, she's not really coughing anymore, BUT, the vomit rages on.  People keep asking me how she's doing....PTL she's not in the hospital, suffering with some respiratory junk....she's not at her normal right now.  It is downright painful to see her suffer in this way.  She must be hungry.  I want to cry, but I'm not letting it out.  Remember, when I posted there are things?  This puke cycle is right up there with things I don't get. 

I've never been the kind of person who cared what other people thought of her when we were out somewhere.  But recently, there is a voice in my head that says..."hey, these people aren't used to seeing a child puke like this routinely"  and I don't want people that do know us that I've got her out exposing everyone to some stomach virus. 

Feeding intolerance.  That's what they called it in our genetics counseling sessions.  I guess I thought she'd outgrow it.  Here we are though, almost five years in, and she is still struggling with some of the same issues. 

Don't misunderstand, I am utterly grateful for the battles she's won....its just hard for a Momma to see her babies hurting.


  1. I hear ya! Gagging, puke and retching STINK! Gavin has a Nissen, and he still does this! And, like you said, it's always worse when they are getting sick! UGH! The looks we get are annoying too.....probably worse for you guys since Lillian isn't confined to a stroller to hide some of what is going on. Hang in there Momma! Wish I had the cure for both of them! Hugs!!!

  2. Michelle, is she g tube fed or does she eat by mouth? I just wondered if you could do some formula j tube, then it womt come up and she'd be getting calories. Hopefully its gets better soon!

  3. So sorry! Puke SUCKS big time! I hope you find some answers and Lillian finds relief real soon. Prayers!