Here's most of her note to me. I've edited and removed all names.
Just had a nice conversation with Dr. C. He and I agree that if the OT's think they can make significant improvements in her feeding in the next month or so, we can wait on the GT, but if they are not optimistic about improvement soon, we ought to go ahead with the G tube. He says Eliana is doing SO well from a cardiac perspective that he doesn't need to see her again for a while, so you and I will be (if needed) making the Pediatric Surgery referral, and they'll do the pre-op cardiology eval if she requires surgery. She'll also need antibiotics pre-GT, if it is done. I think I'm leaning to a 1) borderline oral motor skills PLUS 2)the aversion issues of NG tube, endotracheal tube, oral suction, etc as the issue here. I am doubting the reflux, but Prevacid should help if it exists. Perhaps (3 feeding specialists we have seen) can convene and see what their shared perspective is. Just call me after you see OT, and we'll think things through.
So, we have a plan and a direction. I appreciate that she noted that it would be a joint decision/referral. I appreciate how she looks at the whole picture - quality of life she calls it - in terms of our care for Eliana.
If you are reading this, I would love prayers for our therapist. We will be seeing her tomorrow morning. Prayers for wisdom in knowing what the future is looking like in order to make the best decision for our sweet girl. Prayers for peace with whatever the decision may be.
This journey is not one that I would ever have chosen, but admist the struggles I have been blessed over and over again. Many, many times God has used precious friends - and strangers turned friend - to touch our hearts and bear our burdens. I pray that as I walk this path that I would learn to do so with peace, love and trust in the One who loves me completely. I still have much to learn.
Thank you for your love and support!