Friday, May 30, 2008
Today began with another episode of changing Rosemary's NG tube. It's not a fun experience for either of us. Her 11 month birthday was yesterday and I had one of those moments where you can hear the "V8 plunk." She's had a tube in her nose, taped to her face for 11 months. We've been avoiding getting a G tube placed into her stomach for a while. Her cardiologist recommended it when she was about 7 months, but I was convinced that I was going to be able to get her off of the NG tube.
I still can't stand the thought of putting her through another surgery. We're at the point now where we know it will benefit her to just get it done. The NG tube tickles the back of her throat when she coughs, babbles, eats and drinks. It's an annoyance and I don't blame her.
Let me tell you, adding butter to her food doesn't come close to helping with the calories that she needs on a daily basis. I add butter to just about everything she eats. We've tried ice cream, malts, shakes, strawberry flavored Pediasure to the milk...I just can't get enough calories into her in between all of her feedings. It's quite frustrating. We took the tube out for a full 2 1/2 days, but with a cardiac baby, you can't let them get dehydrated. She was eating a lot more than she had been, but she wasn't drinking more than 10-12 ounces of fluid a day. Her caloric intake for each day was dropping, she ended up losing a little over a pound in a week.
I've been so paranoid about pushing her too far with anything because she had such a rough start in life. I guess I'm at the point where I am realizing that I can't let that be in the forefront of my brain anymore. She's not where she was 6 months ago, 3 months ago! She just had her Hemi-Fontan at the end of February. I feel like we're more than just out of the woods.
We're finally past RSV season and I can take her out to the park with her siblings and actually get out of our house to see the Grandparents! She looks more like a "normal" baby and has certainly been acting the part as well. The difference in our quality of life as a family has turned a 180...and it's my feeling that it will keep going in the right direction. It's our hope that getting the G tube will allow her to eat more normally and not be hindered by the negative reinforcement of a tube every time she swallows.
All in all, life is good, and I have no doubt in my mind that my life has yet to reveal the best part of this journey with Rosemary. We're also very anxious to see her eat her first hamburger from Daddy's grill!
Stay tuned for more progress reports. Thanks for reading.