One of the most difficult parts of this experience is the fact that I'm constantly doubting myself. People are constantly giving advise ... all of which is appreciated ... however it seems to keep me in a constant state of confusion. As a mother, it's difficult not to question myself on every decision we make. Sometimes the advise I get feeds into the doubts I already have about whether or not her failure to thrive can be fixed if I just "try harder". Especially when it comes to the NG tube. I absolutely hate it! So ... Sunday Tom and I decided to take out the tube and see if she ate better without it. I guess a part of us felt like her eating problem had resolved itself and if we pushed her hard enough we could get enough ounces in on our own. Sunday went great and we were able to get in 15 ounces over a 24 hour period, but we were still worried that it simply wasn't enough. Monday, after an all day break-down, I called her pediatrician to see if we were doing the right thing. He thought this would be a good opportunity to experiment with her eating and see how much she gains with eating on her own. She maintained 15 ounces daily until 2 days ago when she slowed down to 11 ounces within 24 hours. Yesterday we fed her almost on the hour every hour and sometimes every 30 minutes. Alot of times we would have to push her and push her to take 1/2 of an ounce. She weighed in today at 10 lbs and 7.5 ounces (that's a 1/2 ounce loss over an 8 day period). I dread putting the tube back in but at least now I know that it's not me ... she does truly need it!
On a more positive note, when Dr. Hughes and I talked Monday he said if she didn't gain enough this week he would call the cardiologist in OKC and get the appointment pushed up.
Friday, January 26, 2007
The Experiment
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1 comment:
PJ told me about your adorable little girl. My son has a heart defect too and we have been where you are now. Evan had to have a feeding tube for several years before he finally was able to eat well enough on his own. I had to deal with all the advice too. I had so many people tell me that if I just took him off the tube he would get hungry and eat on his own. That didn't happen and I was a wreck for so long.
My change around came when we finally (after 14 months of the NG tube) got him a g-tube. The NG tube was not irritating his throat so he would eat better. I was also able to give him bolus feeds during the day much easier. Once his stomach was stretched enough to have full feeds we were able to taper off the tube feeds.
Have hope! Once she has her heart repaired it is very likely that she will start doing better. You and your family will be in my thoughts and prayers. Fell free to email me if you want to chat to another heart mother.
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