I feel very overwhelmed right now with the decisions we have to make about Maggie and ask for your prayers. We met with her doctor on Friday and talked extensively about the issue at hand and the recommendations of the Feeding Therapist. We have made the decision to try the NG tube (feeding tube that goes down her nose) temporarily. We are still going to feed Maggie through a bottle but whatever she doesn't eat in the bottle we will put through the tube, that way she won't be stressed out by me pressuring her to take more. Hopefully that will buy us some time as we start intensive feeding therapy soon, which will try to get her to take a whole bottle without being distracted. The doctor has given us 4-8 weeks to try the NG tube and feeding therapy. If she is still not progressing at this point, then he wants to do the more permanent G-tube, which requires surgery and she will have for a more extended period. Anywhere from 9 months to three years.
Of course all weekend I have been in tears. I keep trying to figure out how we got here, what we did wrong, what else we can try - anything to avoid the G-tube. I feel sick to my stomach and sad at the same time. I feel so helpless and so frustrated. Praying that she would just start eating again so we didn't have to go through this. We have several decisions to make right now and so I humbly ask for prayer for these things:
1. In patient versus out patient feeding therapy treatment- Initially I refused the possibility of a month-long hospital stay for Maggie while she undergoes treatment. Mary Lawrence just doesn't need any more turmoil in her life and having her baby sister disappear and her mom at the hospital all day just wouldn't be good. But the more I think about it, I wonder if Maggie would get more intense therapy, more often if she was a patient and if that would help her avoid a G-tube, wouldn't that help our family more in the long term? Driving back and forth every day for feeding, OT, and PT therapy prevents us from getting Maggie on any kind of routine and that can't help her eating I think. And I can't take Mary Lawrence to feeding therapy like I can take her to the other therapies so I have to figure out what to do with her. I am torn and praying that God would lead us in the direction He would have us go.
2. Mary Lawrence - her second X ray shockingly showed no change whatsoever to her blockage. She is still uncomfortable and suffering. And all I have been thinking about (besides Maggie) is how hard it is going to be to get her not to be scared to go to the bathroom. I wake up every morning at 3 am and just start browsing the Internet on my iPhone, doing research about her issue and it scares me how sometimes is takes years to resolve it and get them potty trained. And if Maggie has a tube or is hospitalized, what is that going to do to her mentally and emotionally?
3. Extra help - As much as I don't want to admit it, I realize that we need it. I have someone who comes a few times a week to clean and help with Mary Lawrence, but I need someone who can feed Maggie and take care of her while I spend time with Mary Lawrence and give me a break from always being the one to try and get her to eat. I am so tired and overwhelmed I am not sure how to find that person, how much I want them, or what. I am thinking maybe a few afternoons or few mornings a week. Obviously they would need to be qualified enough to handle Maggie, hopefully with some kind of nursing background. I know they have home health care, too, but I am not sure we qualify for that. And, again, I want to find the right person for our family.
Thinking of all the wonderful moms on Mother's Day.