Ethan is getting rid of his NG-tube, but at what cost?

I've been saying for months that I can't wait for Ethan to be DONE with the ng-tube.  Well, I'm getting my wish...but not really.  On Wednesday, his G.I. doctor and a surgeon are going to put a G-tube into his stomach.  Allen and I did NOT make this decision lightly.  Ethan has beautiful clear skin and the last thing I want to do is put a "boo-boo" on him that will leave a scar.  Mom told him the other night "you are going to have two belly-buttons" and that just makes me sad.

The deciding factor last week was that his G.I. doctor, his regular pediatrician AND his speech (feeding) therapist all agree that Ethan probably will make better progress eating by mouth if he doesn't have the tube on his face or down his throat.  All also agree that getting rid of the oral aversion will most likely be a long, slow process.  So my idea of taking out the ng-tube this weekend and "getting him really hungry" wasn't a really popular idea with anyone.  We certainly don't want to take the chance of dehydrating him three days before surgery.


Allen and I also read a lot of parent blogs about similar situations.  Most agreed that the positives outweigh the negatives of having a g-tube put in.  The postives for me are no more tape on his face, no more risking putting in a new tube and scratching his throat, no more watching him spend so much of his awake-time swiping at the tube and tape, not having to answer questions from strangers, being more mobile (we SHOULD be able to feed him faster and easier with the larger tube), and the best thing is that we SHOULD be able to hold him while he eats now.  For months we've had to put him in the nap nanny or prop him up on a pillow and watch him eat.  The negatives are...well, the anesthesia is probably the biggest concern at this point.  The anethesia people really reacted badly to Ethan having low tone.  The almost worst case is that he has a bad reaction to the anesthesia and they have to reverse it or keep him on the ventilator and/or oxygen longer than just for surgery.  Ethan will be in pain for a few days.  While he is in the hospital, he will be getting morphine and then he comes home on Tylenol 3.  Pretty strong medicine for a 7 month old.  I guess for Mommy, the worst lasting thing is that there will be a hole in my baby's tummy with a tube the size of a McDonald's straw hanging out of him.  It will be hidden in his clothes, but it will be there and we will know it.  Oh, and another negative that remains to be seen...a lot of times reflux gets WORSE before it gets better with the surgery.  I am holding onto the hope that eventually getting the tube out of his throat (and tickling his gag-reflex and holding everything open) will allow the reflux to get better.


I am so grateful that there are options.  I keep trying to reason with Ethan.  "If you will just eat from a bottle, WE won't have to go through this surgery."  So far, he is still resisting.  I love his stubborness and I hate it at the same time.  I think Ethan has come so very far with his strength and development...further than I thought he would be at 7 months in a way.  So I am glad he is stubborn and fighting for that.  From the very first time I heard the words "oral aversion," I was told "you don't want that."  They were right.  I don't want that at all.  I still remember the first time Allen got Ethan to suck on his pacifier in the NICU.  And the first time he finished a bottle.  Those were sweet milestones for a baby that had no suck reflex when he was first born!  Now we just need for him to remember how to suck, to want to eat, to swallow like he is supposed to...well, you get the idea.


I got sad today about something kind of trivial.  I was taking video of Colin in his new jumpy-toy and thinking I wish I could take video of Ethan in this thing.  Then is dawned on me that Colin gets the pictures and videos of his milestones...and Ethan gets blogged about.


So to say a few words about Colin...he is doing so great.  We switched his schedule around yesterday and he took it like a champ.  He went to bed at 7:30 last night and I had to wake him up at 7 this morning.  We were late tonight getting him in bed because of baths, but he went right to sleep.  He loves solid foods and actually I think would rather EAT than DRINK now.  His favorite combination today was oatmeal, mashed avocado and mashed banana.  He even squealed a couple of times during that meal!  Oh, and he got to go with Daddy twice today to run errands.  He was so cute but came back both times passed out in his car seat.  He takes after Mommy that way...I love sleeping in the car!