Once we started giving Sadie enough to eat and drink she turned into a different baby. She went back to sleeping 10-12 hours at night. She started taking 2+ hour naps (in her bed). She was happy. And the medicine for reflux was working too and she was able to play on the floor by herself, she even started rolling over this week and being happy on her tummy!
And I started feeling guilty.
You know how you watch those documentaries about under-developed countries and they show you pictures of orphanages full of malnourished children? That's how I imagined my baby must have looked. Had she been crying all day lately and waking up at night because we're starving her?! Because she's so dehydrated that she HURTS?! What a horrible mother I am!
But then my dad reminded me that she couldn't HANDLE more than we were giving her. That first day after we saw the doctor we tried to give her the amount of calories and liquid he recommended before we started medicine, just to establish a baseline. Sadie had a really hard time with it. She puked twice, and would never take more than 2 ounces of liquid at one time. (which meant we had to give her that much like every hour AT LEAST to get to 24 ounces) She couldn't do it. The next day, when we started medicines, all of the sudden she could handle much more. Now, after just 5 days, she is taking 4-5 ounces each time (and even sucking some of it out of the sippy!) with no problem...which makes it MUCH easier to get to 24+ ounces a day.
We see the doctor again in 4 days. I am hopeful that we won't be getting a tube this time...but it'll always be hanging over our heads, I think. So, keep praying for Sadie. She needs to be able to drink on her own, and tolerate more and more in one sitting. I will give you an update on Tuesday!
PS. we weighed her nakey the other night and she was actually OVER 20 lbs!! At the doctor's office last week she was barely over 18. Mind you it's a different scale, but still...I can't wait to see what she weighs when we go in next week!!
I keep meaning to comment on your posts as our stories are so similar. My daughter Emma is 20mths and due to a birth injury she had HIE grade 3 and has a dx of Dyskinetic CP. Physically she is very affected but cognitively her development is age appropriate, her hearing and eye sight are fine and she has no seizures, so we have much to be thankful for. Emma came home with an NG tube but after 4weeks we had her bottle feeding full time. Emma never leared to breatfeed so I expressed full time until she was 14mths (never again!). I was passionate about keeping that ng tube out and even more sure I never wanted her to have a G-tube. I wanted her to eat 'normally' and spent hours, literally 3 or 4 hours every day ensuring she had enough to eat and drink. Just before Christmas Emmy had bad teething and a stomach bug and lost all interest in food. Her wight fell from the 25th to the 0.4 centile, she was starved. And it was around this time I had a bit of a revelation, who was it that wanted Emma to eat 'normally', Emma or me?? Emma had an NG tube fitted then and had a G'tube put in yesterday and I have to say it is the best thing we've ever done. She is like a different child, and so so happy and developmentally has really come on. I guess it comes down to all that time spent feeding is now put to better use and as a family the pressure is off! Our lives are normal to us, but will never be the stereotype of the norm. I'm now 28weeks pregnant with my next baby and ofcourse wish for things to be more straight forward but if I had another baby just like Emma I'd be happy a million times over. Sorry this turned into such a long comment but I know just where you are. I'm enjoying your blog alot. Rosie (liverpool UK)
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