Sorry for the long-time now post.
Kaitlyn ended up giving her cold to both Brian and I, but I got it bad, still have it a week later. My voice is shot and I can hardly sleep with all the pghlem. Kaitlyn got so bad I took her to the doctor last Friday and she had an ear infection in one ear as well as a sinus infection. SO back on anti-biotics she went.
She was a bit of a night-mare all weekend, whiny, not my sweet Kaitlyn, I kept forgetting that she was probably just not feeling well, so it made things sort of tough. By monday, however, she started feeling a lot better, but then the runs started. This antibiotic she's on makes her poo green and explosive diarrhea (poor baby).
Today, while Kaitlyn was at the park with our nanny, she started complaining that her tubey-tube hurt. She had said it to me too the day before. I think the anti-biotcs are messing with her entire intestinal/stomach area. She also suddenly broke out in a horrible yeast/diaper rash. It came quickly, even on her thighs, poor baby.
I made the decision on the spot to take out her tube. It was time to replace it again. It just didn't make sense to me to replace it, knowing that we weren't using it any more and that I had no intention of using it again.
The docs weren't on board with it coming out, as they are concerned about her not gaining weight. Well, I've done the whole gtube thing on my own, tackling everything from what we feed Kaitlyn to finding her therapy. Why should this be any different? I listened to my gut and it said no problem. Get rid of the tube! Maybe that 5cc balloon in her tummy (that holds the mic-key button in place) is making the pghlem and taking up valuable space anyway.
My feeling is this: she eats quite well (when she wants to and is hungry), she isn't vomiting any longer, there is nothing physically wrong with her, so why do we need a feeding tube?
So out it came! She was crying (due to the diaper rash, the tube hurting her and needing a nap). I had imagined in my head what the momentous day/celebration would be and this really wasn't the way I had planned.
But the tube is out! It seems so anti-climatic! It wasn't that longer that I was "complaining" that we'd never get Kaitlyn to eat or stop vomiting. I had laughingly imagined her going to college with her feeding tube, that's how impossible of a feat it seemed to me.
I wanted this to be a big deal! I wanted fanfare and hoopla - mainly for all the crap I had to deal with for the past 3 years. My pain and suffering. Kaitlyn insufferable vomiting. All the crap! so much crap - it's hard to remember it in some ways, (which is CRAZY). Instead it was tears from Kaitlyn, I pulled the water out of the balloon with a syringe, sopped up a bit of food around the site, slapped on some gauze, tape and that was that!
Now we have to wait a month to see if it will close on it's own. I've been told that about 50% of them close on their own, and 50% need surgery to close. Hopefully we'll be the former.
Let this be hope for all my fellow micro preemie moms who have kids with gtubes. All my other friends kids with feeding tubes. it can happen! Even when nothing is improving and you are stuck in the same old grind of pushing in food and slopping up vomit. You CAN get your kids to eat!
Don't be complacent if the docs don't know what to do. Research! Ask a lot of questions! Be patient. Work hard. And eventually you too can be rid of tubey-tube!