January 30th, 2008
Nora had her g-tube button removed a week ago yesterday. Wow, I never thought we’d be saying that before her first birthday or any birthday for that matter. She is doing great and the hole in her tummy is healing amazingly well. The actual removal of the button wasn’t very fun for sweet Nora (because she had a Bard button that is kind of like an anchor instead of a catheter) but she was sore for only about a day and a half and her tummy is obviously feeling better than ever. She has never slept on her tummy but the past two mornings we’ve awoken to find her snoozing away on her tum-tum. It’s still crazy to me that they just pull the button out and don’t put any stitches or anything to close the hole going from her skin straight into her stomach. Apparently the stomach heals very quickly and only 15% of people have to go back for a procedure to close it if it hasn’t closed by itself after 6-8 weeks. The hole is still leaking a bit but the leakage is minimal and we’ve only had to keep a bandaid on it the past few days instead of gauze.
Nora had quite a time playing with the table paper and checking out the digestive system charts in Dr. Crooms office while we were waiting for him to come in and take out her button.
We are very excited about Nora’s progress with oral feedings and weight gain! Her little intestine must be growing, adapting, or both because something amazing certainly has happened for her to be able to process so much orally. She’s eating 106ml bottles of her Elecare formula about every 2 hours and eating her solids twice a day, which we will be moving up to 3 times a day starting today. She’s still loving her squash and rice. She’s had butternut and delicata squash, and sweet white rice and short grain brown rice. I’ve been a little hesitant to move on to the next veggie, sweet potato, just because of the gas factor. But we’re going to go for it today!
The solids have definitely made a noticeable difference in her weight, last week she was up to 15lb 7oz (a 8 oz gain from the previous week) and this week she’s an even 16lbs! So now the next step is to start tapering down her TPN. Her doc has given to green light to lower her rate per hour, she’s currently at 20ml/hr and we’ll drop 2ml at a time every few days as long as her blood sugar stays good. And then once she’s down to around 10ml/hr we’ll start dropping hours, yay! Hopefully by her one year b-day she’ll have a good amount of free time during the day off the IV’s.
Our cute little lioness…..these were taken the day before Nora had her button taken out. As you can see in the second one she had to play with it one last time and give me the look that says “Oh this is what you don’t want me to play with? Are you sure you don’t want me to open it for you?”