I am so very tired and my house is a wreck so this is going to be a very simple, not so witty update. No NG tube at this time. We now have a prescription for Megace, which is a man made version of hormones in the thyroid that stimulate hunger and subsequently weight gain. Dr. Lewis seemed pretty certain that we will see an increase in her appetite and has pulled Piper from whole milk in favor of a much more condensed pediasure style milk. This stuff is heavy duty as it is 375 calories per 8oz versus the 160 calories per 8oz in whole milk. We are also to continue adding Duocal to whatever she will place in that sweet little mouth of hers. (an additional 30 calories per 4 oz) The goal is her consuming and keeping in 900-1000 calories per day. So truly she could drink 3 of these cans and nibble here and there and be above the parameters of caloric intake.
Unfortunately for us, Piper simply has little to no appetite so its not only a matter of getting fatty foods in her little body but also just plain getting ANYTHING in her little body. It took me over an hour tonight to get 4 oz of this formula into her and the majority of it was done with a 5ml syringe. This could be a very long battle but hopefully as her appetite responds to the Megace she will drink the stuff voluntarily. Everyone we talk to tells us that Piper will eat on her own but frankly, she wont. It has been 4 months and she is down to 13lbs and some change. If I have to syringe this stuff into her, I will. I cannot help but think that anything will be better than an NG tube. Or at least anything is worth trying before submitting to an NG tube. Piper goes back to the clinic in two weeks and will be weighed then so we will see how this new plan pans out.
I am hopeful. An NG tube is not the end of the world but I feel very strongly, and thankfully the GI Dr does also, that there are other options to try before that step. We will see. As of tonight I am literally pushing 4 oz of this stuff into Piper every 4 hours and hoping that she tolerates it well.
I am pretty thankful for the simplicity of this little 730 sq ft apartment tonight as I attempt to get it in order before crashing...the cleaning can wait until tomorrow. Heaven only knows that I will be hanging close to the house with a syringe in my hand...no reason why I cannot clean a toilet in between feeding ounces. :)
"you will keep in perfect peace those whose minds are steadfast, because they trust in you" I was spending some time this morning chatting with God and this verse came to mind. It is what I desire. I have chosen once again to turn my eyes to the Lord. I trust Him. He has brought us so far and He has blessed us. This is why I am chosing to have that faith because this girl needs the peace that inevitably comes along with it.