We got approved today for Ava to come off the vent when she wakes up in the morning until she goes down for her nap (5 hours) and from 3 - 8pm for a total of 10 hours a day. Yeah! We also changed her feed rate to 250 mls 3x times a day. We went up because she went down to 11.75 kg with her weight. We also eliminated the 3pm feed because she most often would spit up during that time. We moved her 4th feed to at night once she's asleep just until she is fully up to the 250 a feed. We are going up 10 mls every 2 days.
We are also going to see the Syracuse feeding clinic whenever we go to GI there. It really seems like the gag that is triggered by anything solid isn't going to go away anytime soon. She has been eating stage 2 for a long time, and Ava really wants to eat solids and puts foods in her mouth. Her gag though makes her vomit up anything that is in her tummy until she can get that solid out of her mouth.
We are looking forward to this week with Ava since we are having great weather. She really loves being outside.
Thanking God for Ava's lung growth and praying that we no longer need the vent & trach this summer AND Ava can eat solids...
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