I don't even know anymore

I’m so tired physically and emotionally.

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Just wanting you to know that you are seen and that you’re cared for

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Hey @Sapphire,

We’re here for you. Always willing to listen, if/when you’d have the energy to share what’s on your heart. Take as much time as you need, and know you have friends by your side, no matter what.

You’re not alone. :hrtlegolove:

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Hi @Micro,

Basically I’ve not been getting any sleep which I expected, but then to add to that, Kiera had a bad week last week where she has been throwing up again and so she didn’t gain as much weight as the doctor wanted so now they want us to put her on continuous tube feeds again even though she has been learning to take the bottle pretty well. And what we’ve learned is that there is something wrong with the g-tube because she is having trouble tolerating the tube feeds now, and they want us to take her to the ER.

At this point we want the g-tube removed and we want to be done with the hospital that did the surgery. Her pediatrician doesn’t agree that such drastic measures should be taken so she wants is to see her before anything drastic happens.

So the doctors don’t agree with each other, Kiera is miserable because if we don’t do what her stomach doctor says we don’t want to risk having child protective services come after us for neglect.

So I’m just done.

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Turns out what my husband and I expected to happen from this little experiment happened - Kiera regressed and lost almost all of the progress she made towards bottle feeding. So now we’re back to square one.

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I’m so sorry, @Sapphire. I hate that doctors can’t agree and figure out a real, practical guidance for you all. We need them to appear strong and reliable, not to bring more confusion.

I hope with all my heart that things will look up for you all very soon. In the meantime, it’s more than okay to be exhausted and shout it out as much as necessary.

Kiera is a warrior, and so are you guys. Although I know it’s easy for me to say while you are in the middle of this. I believe in you so much.

Sending all the friendly thoughts possible. :hrtlegolove:

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