Saturday, October 23, 2010

NO MORE TUBE!!!!

I don't know if you can tell from the title, but we are very excited that this day has finally come! In order to give you an idea of why this is such a big deal for us, I'm going to dip into Abbie's history for a little bit. If you're not in the mood for reading, just skip to the end to read about Abbie's latest. For those of you who don't know Abbie's story, getting her to eat and drink has been a struggle from the beginning. She wasn't allowed to eat or drink anything by mouth until she was three months old, due to her multiple surgeries, recoveries, and some aspiration problems. She's had some form of feeding tube since birth. Her first tube was just an IV. She then graduated to a tube that went through her mouth and down to her intestines. This one was especially hard for us to see because she would gag every time she moved her head! Luckily, this one was only for a few days when she was a newborn.

Anderson Tube (through the mouth)

The next tube went through her nose and down to her intestines. She had this one till she was 3 months old. While this one wasn't nearly as bad as the tube through her mouth, we had to watch those sweet little baby hands to make sure she didn't yank it out! The next tube still went through her nose, but we finally graduated to a tube that actually used her stomach!

NG Tube (the yellow one going through her right nostril)

First day home from the hospital, hooked up to her feeding pump

Little stinker! Pulled out her tube in the middle of the night!

We also got permission to start trying to feed her by mouth. I figured that it would take some work to get her to eat enough to get the tube out, but wow, I had absolutely no idea of the journey we would take over the next 18 months. I won't go into all the details of our feeding attempts. I'll just say that over the next 4 months, we were happy if she drank a tablespoon of diluted formula a day. Because of her agonizingly slow progress, we decided to put in a more permanent feeding tube. It was a hard decision, but by now, Abbie was 8 months old, and it was impossible to keep her little hands away from her tube. Her poor little cheeks were raw from yanking the tape off of her face, and my nerves were shot from having to pin her down while Lance put the tube back down her nose. Anyway, it was a relatively simple surgical procedure to get the gastronomy tube put in and we finally got to see her beautiful face with no tape and no tube. The G-tube was a LOT better than the nose tubes, so we had a lot to be thankful for.


Poor little cheeks after Abbie ripped her tube off her face

The lovely G-tube, all bandaged up right after surgery

Finally, what a precious tube-free face!

We made some good progress over the next 8 months, and on May 17, 2010, Abbie had her first day and night of 100% oral feeding. Even though Abbie was now eating and drinking on her own, we still had to keep the tube in to make sure she could maintain a good weight gain. Finally, after 5 months of not using her tube, we got permission to get it removed!!! On Friday, October 22, we made the familiar trek to Primary Children’s Hospital and checked in for surgery like old pros. Abbie knew the drill too, but for her that meant start crying at the sight of anyone in scrubs! She was ok once we were in the waiting room and she got to play with all the fun toys.


Not so happy after the nurses took her vitals


When it got closer to our surgery time, the nurses gave her some medicine for “separation anxiety” which basically makes the kiddos unaware of what is going on around them. It’s nice for me because I don’t have to watch her cry and scream for her mommy while being taken away by a complete stranger. I thought it was hard to send her in for surgery when she was a baby, but it is soooooo much harder when they know what’s going on!

Abbie "smiling" for the camera after taking her medicine

Anyway, the surgery was only about 30 minutes and Abbie was a champ as always. We were home a few hours later and besides a little bit of soreness, she is back to her normal, crazy self. It will be so nice not to have to worry about her tube catching on the edge of a chair and getting yanked out and I can finally teach her how to go down the stairs on her stomach! We are so grateful for Abbie's amazing journey so far and can't wait to see what life holds next!