Last week, we had The Talk with the pediatrician. The Talk about a possible g-button (tube) in KayTar's future.
It isn't imminent and we aren't taking any sort of action on it right now, not even a surgical consultation, but it is out there now. It is the next line of defense.
As long as she continues to drink her Pediasure willingly, and as long as her weight doesn't suffer, we can continue on this current plan. However, if there is further decline, if her weight starts slipping, if she starts refusing to drink her Pediasures, that is the next step.
And it is kind of freaking me out.
Her weight is not the only risk here, if she fails to get proper nutrition, everything is at risk. All the hard won developmental milestones and progress she has made would be at risk. The brain cannot function properly without adequate nutrition, so we have to be sure she is properly nourished.
I've found that most people (including myself) have a very strong reaction to this possibility. The truth of the matter is, not only do I see this food situation differently than her hearing loss, everyone else does too. Food is fixable. It is hard to accept that it is ever truly out of a parent's control. And so even the suggestion of surgery seems extreme. It seems like we are giving up or like the doctor is jumping to outrageous conclusions. But that isn't the case.
The pediatrician is being proactive in having this discussion with us now, while it is only medically advisable and not medically necessary. She is giving us time to process in case it ever does become necessary. She is protecting the work we have done with KayTar, the work KayTar has done, the amazing little person she's become.
If it ever comes to surgery, then we cannot look at it as the enemy or something to be avoided at all costs. If it ever gets to that point, I have to be prepared to set those thoughts aside and be able to look at it as the means to keeping her healthy. That is all it will be. A simple way to keep her healthy. A way to feed her without the trauma of battle. If it comes to it, she would never be impeded from feeding orally, we would just have plan B on days when she didn't. The truth is, if I were to make a list of pros and cons on this one, there would be a long list of things in the pro column and two things in the con column, surgery and scarring. That is the only downside. And yet it feels so much larger than that, even as a possibility.
But we aren't there yet. So I have plenty of time to work through this, in case it every becomes more than a possibility or suggestion. I'm working on it, but truthfully, this regression is one of the hardest, if not the hardest, thing I've had to process. I think I am fairly skilled at processing things and releasing them. I find it quite necessary in living this life. But this, I am having a hard time with. I am over thinking it, I'm second guessing myself, I'm jumping to conclusions, I'm viewing it all under a microscope, and I don't know how to fix that.
Every day, sometimes every meal, I bounce between thinking, "She's never going to eat again." and "OMG! She's getting better!" based on her reaction. In truth, eating or not eating at a single meal means nothing for the future, and yet I cannot keep my heart from leaping or drooping in reaction.
Yesterday, she ate McDonald's nuggets again, 3 of them, and I immediately hopped on the phone and called Josh and said, "We have to find nuggets with batter like these, she'll eat them!" and he said, "You mean like the dino nuggets we bought 2 bulk boxes of that she hasn't touched? Nothing works for long, Kyla. There is no magic answer here." And he is right. Nothing works for long. There is no pattern here. No answer to unlock. No magic answer. But I want there to be a magic answer with every fiber of my being. And although I know it is unrealistic, I cannot stop pursuing it. I want to believe it is out there, that somehow we are at fault for not finding it, because if this is our fault, it is also within our power to rectify it. In truth, it isn't our fault. There is no magic solution, and I need to focus on the fact that she had a singular positive eating experience and be pleased with that. I need to stop looking at this as a solvable problem.
I need to lower my expectations to match our reality, because the disproportion is agonizing. I know I am causing it, that I am the only one who can stop tormenting myself. I even know which expectations need adjusting. I just don't know how to put it into practice. I can't let this go no matter how hard I try. Nothing has been this hard for me. Not when she couldn't walk. Not when she couldn't speak. Not when we found out she couldn't hear. Not when we found out she was globally delayed by roughly a year. Not when we found out she has lesions sprinkled about in her wee brain. Not even when we were so close to an answer and had it ripped away. I can't pinpoint the difference, except we are actively in this. Fighting against it. Hoping for a change. Maybe the root of it is I believe change is possible because she once had this. A little over a month ago, she was released from OT because she was eating. EATING. And now, here we are. How do I stop expecting her to regain that ground? How do I lower my expectations so that I can simply be? How do I get to the point when I truly don't care whether she has eaten, where I can simply be happy for the positive experiences? I know exactly what needs to change, I just can't put it into practice right now. And so I talk. And talk. And worry. And talk. And hope that whether she ever gains this ground back or not, I can learn to be happy with it, just like she is.
Oh, Kyla. I'm listening.
Hugs to you.
You poor thing. I'm listening too. And thinking about you.
Hugs to you--I know you've been struggling with the looming shadow of this Next Step. I don't have any advice, just offering a shoulder to lean on, and a listening ear.
I suspect it feels like giving up hope, and that is a hard thing to do. A strong person, you would struggle against that, and I can hear the agony in your voice here, and I am sorry I can't help in any way but to send you a little internet hug, my dear.
You know what I think. Hang in there. I'm so glad you share this, I am.
You are exactly where you need to be right now - hoping for the best, preparing for the worst. and by worst I mean worst case scenario.
Trust me on this: Plan B is not as bad an option as it seems and it certainly reads like you've got your brain wisely wrapped around the idea. The g-tube gives you the option of continuing the goal of Kaytar getting on solid food without worrying about nutrition.
You know where to find the e-mail if you or Josh have any thoughts or questions.
OK, so now it is on the table. We can make it less big and scary if we have to. Not that we have to yet but it is on the table.
I think kittenpie nailed it here - it is the giving up of hope. You are so close it must be doubly hard.
At least with Julia I thought she would likely need it for a couple of years but still I fought it and brought her home with the NG.
Still it is just a fallback plan. Kaytar has made it this far so I will hope she continues.
Even though I try not to let it bother me Julia started bottling a few weeks ago and then stopped again. It is hard to give up hope about something you want them to do multiple times a day. It is just always in your face, you never get a break.
Did I tell you my friend is a pediatric GI? She convinced me early on of exactly what you wrote about nutrition and development. At least that made the gtube less traumatic for me.
It is an option if you need it, I hope you don't.
I wish there was something I could say or do to soothe. I know you are waiting for the next shoe to drop. But, someday she'll be dancing around on those shoes eating more than you can put in front of her.
Thinking and praying for you guys. It's such a blessing that you have this wonderful pediatrician, I love how she is totally in your corner and willing to give you time and space when you need it most.
My first visit here, I think I came by way of Flutter, and as a parent, I can somewhat palpate where you are. I know those struggles of tempering expectations and being hopeful. It's good you unloaded here, you strong Mommy, you strong. This reminds me how beautiful Mommies are. I better give mine a hug tonight.
a 36 year old little boy.
You're doing great. And we're all here, and I think Mad and Lisa B hit the nail on the head...
You will always do what needs to be done. It must be so hard to be able to even figure out what your expectations should be, since there seems to be so much change back and forth.
Kyla, I'm so, so sorry that you are going through this. It is so hard. It's good to know there are options though and I know you and Josh will make the best decision for KayTar.
Please unload all you need to. It has to be good to get that out.
We're all here for you Kyla, we're all listening.
I am hopeful things will get better when she is older, and she can understand the food is fuel issue. At this point she is too young to understand she needs it.
You know I had to come...
I think you nailed it when you said that it is hard to accept that feeding kids is ever truly out of a parent's control.
But it is.
You are working so hard with K., it must be so disheartening. Hang in there.
oh, babe. it's good to be making plans even if you never need them.
Oh kyla. you just love that little girl with all your heart, like you already do...
I hear the agony in your voice, Kyla. Eating is such a basic activity that it is wired to primeval emotions. You're dealing with it the only way you can! Your honesty and preparedness are admirable! All I can offer is to listen . . . and to pray!
Thank GOD for Pediasure, and thank God that there's other options, should Pediasure not be enough in the long run.
Wow, you seem so balanced about your daughter's health issues. You are so strong for her! I truly hope she will never need that surgery.
Thinking of you guys...I've been holding my tongue about mentioning plan B. I'm glad your ped talked to you. Not that you are there.
But you know I'm a boardie. On the boards I've seen other moms with this struggle. Everytime it did turn to plan B, the long fought against plan B, the children have thrived and the parents relaxed. It was a good thing.
You know, when Anika was a maybe in the feeding clinic FTT. She was in the worst of her BPT tilt episode time. I remember running out of a restaurant in tears because she threw up after he had painstaking the cajoled her into eating. The stress was just incrediable.
Thinking of you guys.
just wishing you strength and peace.
You are really such a wonderful mother. Hugs to you my friend. I wish I could steady your heart.
I can only imagine how hard this struggle must be for you. Eating issues of any kind are hard to deal with. Hope you see a light at the end of the tunnel.
we are listening.
we really are.
and it WILL be ok, no matter what ends up happening. i know it seems cheesy or blithe to say so, but let us hope and wish for you and it will all come true.
Post a Comment