So I've spent alot of time this morning looking over information about G-tubes, specifically the PEG process, which is what our doctor would use. Braska doesn't seem to be improving in her eating, and I'm just getting tired of the battle. I feel like that makes me a bit of a mothering failure, to be honest, yet I know that I've tried everything I can for 9 months now. I just hate to put her through another procedure, and I guess I've become a bit paranoid about the possibility for complications. As I told a friend yesterday, they say it's routine, but what's routine? How can poking a hole in my baby's tummy be so routine?
I guess this is just another one of those situations when being the adult is no fun. So many people say that their kids did so much better once they got rid of the NG and went to the G-tube, but then there are a few who seem to simply have a different set of problems. And if I'm going to have problems anyway, I'd rather do it without having to put her through this royal poking. I'm still struggling with the fact that my gut is telling me not to do it. But what is this gut anyway? My fear of the unknown, more work, new things to learn about how to care for her? I suppose I'm not so sure I trust my gut anymore, or at least about this one thing. I think I've probably thought about it too long.
When I have a big decision to make, I like to look at the pros and cons....usually making a list of them. (Thanks to Mom for that habit.) Even if I know on some level there is really a right way to go, I like to be sure I've considered all the options and made the most educated and thoughtful decision possible. My husband doesn't particularly like this part of my personality, I don't think, but it helps so much when he'll actually humor me and have a full-on, weighing-the-options, decision-pondering discussion with me. But we haven't had one of those in probably 2 years, so I'm out of luck there. He says just do it... get the G-tube, so she won't have a tube in her nose and tape on her face. Good points, sure, but considering the alternative, I just don't know.
In so many parts of life, I'm decisive. When it comes to work, I can make important decisions in record time. I guess I'm just finding that decisions about my child are way different. Not that this should be all that surprising, but still. I just feel like I'm on my own, and that sucks. Plain and simple. I keep praying about it, and I kind of think God is just rolling his eyes, saying, "I'm giving you every possible sign I can!" She doesn't eat enough. She won't drink hardly anything, and she doesn't seem to care. I've made every excuse. She always seems to be just on the brink of some great improvement. We start with a new feeding therapist next week, the guru of our area, so I've been holding out for that. But truth is that even improvement won't be enough at this point. She's got so far to go. Maybe she won't need it for long, but she does need it.
So I guess it's just me... I'm the hold up. I think it's time to give up the filibuster and get on with it. Suppose I should call Dr. R and see what's next.
I guess this is just another one of those situations when being the adult is no fun. So many people say that their kids did so much better once they got rid of the NG and went to the G-tube, but then there are a few who seem to simply have a different set of problems. And if I'm going to have problems anyway, I'd rather do it without having to put her through this royal poking. I'm still struggling with the fact that my gut is telling me not to do it. But what is this gut anyway? My fear of the unknown, more work, new things to learn about how to care for her? I suppose I'm not so sure I trust my gut anymore, or at least about this one thing. I think I've probably thought about it too long.
When I have a big decision to make, I like to look at the pros and cons....usually making a list of them. (Thanks to Mom for that habit.) Even if I know on some level there is really a right way to go, I like to be sure I've considered all the options and made the most educated and thoughtful decision possible. My husband doesn't particularly like this part of my personality, I don't think, but it helps so much when he'll actually humor me and have a full-on, weighing-the-options, decision-pondering discussion with me. But we haven't had one of those in probably 2 years, so I'm out of luck there. He says just do it... get the G-tube, so she won't have a tube in her nose and tape on her face. Good points, sure, but considering the alternative, I just don't know.
In so many parts of life, I'm decisive. When it comes to work, I can make important decisions in record time. I guess I'm just finding that decisions about my child are way different. Not that this should be all that surprising, but still. I just feel like I'm on my own, and that sucks. Plain and simple. I keep praying about it, and I kind of think God is just rolling his eyes, saying, "I'm giving you every possible sign I can!" She doesn't eat enough. She won't drink hardly anything, and she doesn't seem to care. I've made every excuse. She always seems to be just on the brink of some great improvement. We start with a new feeding therapist next week, the guru of our area, so I've been holding out for that. But truth is that even improvement won't be enough at this point. She's got so far to go. Maybe she won't need it for long, but she does need it.
So I guess it's just me... I'm the hold up. I think it's time to give up the filibuster and get on with it. Suppose I should call Dr. R and see what's next.
You are right not to take this lightly! Surgery is surgery still! No matter how minor people call it. You just take the time you need to feel comfortable with your decision.
ReplyDeleteI guess we've tried everything but "salting the oats." We just want her to be healthy and we're thankful she has come this far....
ReplyDeleteThat has got to be such a difficult choice to make. It's still surgery...I know it must be worrysome for you. The whole eating/weight gain thing can be very stressful! I hope that you are able to be at peace soon with the choice you come to.
ReplyDeleteYou have prayed and studied over this for a long while. If her dad says do it, then go ahead and talk to the doc. If it's not God's will, He will stop it. But it's always God's will to obey. Just keep praying and leave it there.
ReplyDeleteI happen to think you're the best mom my granddaughter could possibly have.
I didn't comment earlier because I couldn't think what to say. I'm sorry you're facing this.
ReplyDeleteI like to agonize like that too, make endless pro/con lists and worry. One thing that's helped me is something one of the LCs told me when I was having trouble with nursing William: Sometimes, if you sit with something for long enough, you'll know what the right thing to do is. Sometimes it takes a while for the answer to come up, and knowing that you gave it some time means you've waited for the right answer. (I'm paraphrasing, but that was the idea.)
Not that there ever is a right answer, sometimes it's the lesser of two evils, right? Argh. I'm sorry. I'm thinking of all of you.
I am sorry about all the agonizing. I was talking to Doris the other day and she said,"Sometimes decisions are neither good or bad, they are just decisions that need to be made." I thought, sometimes it would be good if we just made decisions because they needed to be made and not because we were either going to make the right one or the wrong one.
ReplyDeleteI feel confident in Muncher and you making the decision and the doctors also. Mostly I feel confident in Nebraska. She is God's daughter. She is not eating. She is beautiful. She is stubborn. Whatever you choose to do, she will be touched by God in profound ways. An NG tube, A G tube, eating through her mouth, all doing the same thing. Nourishing her little body. If you can't do one way, do it another. You are doing nothing wrong, little poonchin. Your just doing the mom thing. And just think, right now, she won't hate you for it. Later, when she is a teen, she might when you do the "mom thing."
Such a touch decision; I don't envy you. Seems, though, like you're coming to terms with it and know what the right thing is to do. Still, making the decision to go forward with surgery is not easy. I really don't have anything helpful here, just wanted to say I'm thinking of you all and hope that, whatever you decide, it's the best thing for your little girl. And I don't blame you one bit for being tired of the whole thing; you've endured a lot.
ReplyDeleteI like the way you put all of that Carole. I agree that it is not about a good or bad decision. It is not a right or a wrong decision.
ReplyDeleteI know it is still hard to decide, but RK you have given me the advise more than once that once I have made a decision to embrace it and not look back. You love your little girl! That is the best thing you could ever give her. You will make your decision in love and for that God will be grateful to have given her such a loving mommy. Wish I could be there to talk and weigh this out with you. Email to talk if you need. Belgium may be far, but not so far that I still can not listen :)
You are doing such a great job RK! I think that part of being a mom is wishing you didn't have to make the tough decisions for them. But you know that is why God chooses each of us specifically to be their mommies, because when it comes to the tough choices we love them enough to do what they need. It will all be okay and I pray that God will give you peace about it. Also, if you need some one to hash things over with I am here for you. Karen K
ReplyDeletepretty much how I feel.
ReplyDeleteIt would be great if she ate - but she doesn't so here we go....