It boils down to three things, really.
She is losing weight.
The weight loss is pretty self-explanatory. Her weight should be going upwards or at the very least, staying the same. It should not be going downwards. We shouldn't be back in the 20's, when we fought so hard to get into the 30's. Which brings us to Concern #2...
She hasn't changed her base level intake in over two years.
This one is a bit of a no-brainer, too. Two years ago, she was a lumpish little doll whose biggest activity was rolling around on the floor banging a couple blocks together or perhaps sitting up for a couple minutes, if she was feeling WILD. Now, she is a preschooler. She goes to school. She walks, talks, and plays. She tries to run and jump, albeit unsuccessfully, but trying is hard work, too. She has baby dolls to nurture and pretend food to cook. She has make-believe vacuuming to do, for goodness sakes! She simply MUST change dresses six times per day! She is very busy with all sorts of extremely important preschooler-type business, and her body needs fuel for these very important tasks, fuel in the form of NUTRIENTS, which she just might not be getting enough of. If she was getting enough, her weight (see Concern #1) would be going upwards, rather than downwards. Everyone expected her to begin to eat as she aged, but she hasn't. That is a problem in itself, and it is compounded by Concern #3...
She gets sick quite often and we get caught in the illness, dehydration, and occasional hospitalization cycle, complicated by ENDLESS rounds of everyone's favorite new game show "Will My Child Urinate Today?"
KayTar gets sick. A lot. KayTar stops eating. KayTar stops drinking. KayTar stops peeing. I spend every illness documenting intake/output and watching the clock to see if it is time to go to the hospital yet, helpless to do anything about the situation other than write about it ad nauseum and try to push fluids without appearing to care about the results at all. This is clearly failing, because when she finally peed yesterday, she exclaimed "Mooooom, guess what's in my diaper for YOU? PEE PEE!" I think my nonchalant cover has been effectively blown. She started school and will now be directly exposed to more illnesses, which might hurt her already tenuous-at-best balance. If she isn't getting enough on a good day, every time she gets sick and is getting little to nothing, it just increases the deficits.
When this came up the first time, I was really blindsided by it. It seemed to me that there was no way that this kiddo who CAN eat by mouth would need a surgical intervention. The truth is, CAN does not equal WILL or DOES SO RELIABLY, this I know. When it came up again in the feeding clinic appointment this week, especially in light of her illness and weight loss, it felt logical and appropriate. Subsequent conversations with the pediatrician were very much the same, rational and relevant. I will be honest and say I did feel a little twitch in my gut, a bit of emotional uprising to hear it confirmed by two of her doctors, but it wasn't strong enough to obscure the bigger picture. I've spoken with parents whose children have had feeding tubes, I've read medical studies, I've even watched videos of multiple surgeries and subsequent tube replacements. This is a strong possibility for KayTar, and I think I'm okay with it now. I think Josh is, too, actually, which is really saying something. He's not too fond of medical interventions. Watching her struggle to stay afloat in the midst of recent illnesses has been eye opening for us, and if this is what she needs to continue to thrive, then we are on board. No one is telling us we have to do it right now, but it does sound and feel like the time is approaching. Eight months ago the thought of it left me reeling, but today, looking at my gorgeous girl beaming from her first (belated) day of school, I know that we will do absolutely anything to keep her happy and healthy. If trying our very best isn't quite enough anymore, then we have to find a way to make our best even better. If a feeding tube can do that for her and for us, of course, we'll embrace it.
28 comments:
I know that if you make this decision it will not be lightly and it will be because it is the best thing for you. And I can't help but think that in some ways at least it would be a relief. At least you would have some control over her intake. It must be so hard to feel so powerless now.
Oops, that was supposed to read the best thing for HER. (Hard to blog and twitter at the same time!)
Oh, dear. It sounds like you're heading in that direction and that it's probably the right thing, but I can see how hard it is. Good luck.
And yes - that is one adorable face.
Oh, I know this is hard for you! I'm so sorry it's not working out differently. But just think of how much she's accomplished in two years on as little as she's been getting. She's going to go nuts with enough nutrition!
I know this a hard deceision to make because I made it myself a long time ago. It will make trips to the hospital less frequent and you will be able to get medicine into her system faster with the tube.
When her intake becomes stable it can be closed.
Please know I am thinking about you and Kaytar.
I'm definitely not qualified to offer any advice/opinions on this topic. I know it is hard to consider taking such a drastic step, but I also know that you and Josh will do the right thing.
Hugs, Kyla!
look at that gorgeous little face.
Gtubes are the new black baby. Join the pedialyte saved me a trip to the ER club. I'll show you the secret handshake.
The fact that I know so much about Gtubes, without having a child who needs one myself, says that they must be working for some people. I have a relatively healthy child (well, minus the stroke he had at birth) who also doesn't eat (side effect of the anti-convulsants on his appetite).
We just passed 30 lbs too and it's been a battle the whole way. Loads of sickness too. Weeks of not eating as a result. Weight loss, going down a diaper size, etc. It's not quite the same thing, but I feel your pain. It's like our only job -- make the child grow and when we can't it feels terrible.
And your child is adorable.
you know, you are a mom. You'll feed your kid, however you have to. And you guys will know when you have to do it - glad you are feeling okay with it.
She's so damn cute.
That picture is precious. You will do the best thing for her. Your are her Mommy and at the right time you will know. this has to be so hard. I dont know much about feeding tubes but I do know you are an outstanding Mother. We will continue to pray for your family. Love, Cori
oh babe. ((you))
She is beautiful! I am hoping that it all works out in the end, in whatever way will benefit you all...
I am sure it feels like a step back, when you have had so many steps forward. But, maybe this is what she needs to be able to take many more forward steps. I am sure you will make the right decision.
Sending along hugs as that is all I can do :-) But no, you cannot deny that adorable face!
I know you've been processing this decision for some time now. It does seem like the thing to do--hugs to you all.
I love how deeply you consider every move you make on her behalf.
you've had a rough week.
i can see the logic behind this decision, Kyla...and i hope that in its own way it ends up being a step forward for KayTar and her health.
she really is adorable. the uniform photos slayed me.
Sounds like a good choice for everybody. My youngest one used to get sick a lot, one winter it was eleven weeks, off and on she was sick. She didn't gain any weight for a few years either but she did eat.
Hope everything works out well. She's such a cutie.
What can I say? Just that I'll be praying for you. I know it's a decision you really don't want to make.
She is soooo darling. That little angel face!!!
oh honey. i know how hard it is to get to this decision, how agonizing, how surely certain you are that this is best. with your usual grace. xo
You're such a great mom- both your kids are so loved, and they know it. I'm so sorry you're having to even contemplate this. I talk about you so much that my husband asks how she's doing. I have been trying to think of a way to actually help, and the best I can offer (besides my prayers for you and your family) is a recommendation for an excellent pain management doctor, if you need one for her. I don't know if he even treats children, but he's wonderful, and would know who would be the best for kids. I can ask if you don't already have one.
Your daughter is so beautiful and so are you.
Okay, whatever happens you will make the right decision for her. Feeding tubes sounds crappy but being able to give her the nutrition she needs is so much more important. It just sucks that you're even having to make that decision.
Crap on a crap cracker, chica. You have the patience of a saint. I totally would have resorted to crying and yelling by now. It has to be so immensely frustrating to know that she's unintentionally starving her little self.
Hailey has a cold right now (or possibly just allergies) but as soon as she's well we're getting those kids together. I'll tell Hailey that for everything she can convince Kaytar to eat she'll get a barbie doll. That kid is so sneaky she can probably get an entire Thanksgiving dinner down her.
Hugs. I know this can't be an easy decision but I know that you will make the best one for your family. Especially KayTar. She gets cutier each time you post a pic of her.
Hi-
I know how hard this must be to even contemplate it much less actually do it but you are right. If she needs it then she needs it. And it will help her grow and thrive and may stop some of the anxiety related with intake and output.
How sweet her little pic is. I have tears in my eyes right now. (Bali kinda made me emotional)
Let me know if I can help- Sheila
Whatever it takes, Kyla. Whatever it takes.
Oh boy! I sure hope you guys have a wealth of information at your fingertips so that you know what all your options are. What the expectations are. What her requirements are. I feel so helpless to come here and read and have no information to offer. Wish I was next door and could tempt her with cookies and cakes laced with spinach. Always my best to you guys.
Trying to put myself in your shoes and failing miserably. Fellow Texan...thinking of you!
Dude. Such a difficult decision. In the end, you'll do what is right for that gorgeous girl: you always do.
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