Whitney has had a feeding tube for about 14 months now (since DEC 2010). It's been a daily challenge from the beginning. NG tube was the hardest because I had to insert it myself and it just required more daily steps with formula and such, plus bottle feedings, medications, and night drips = no sleep! Whitney was also on oxygen at the time and needed a monitor on her foot to monitor her saturation levels. Bringing to Dr. appointments 3 or more times a week, was a chore and a two person job! I always had to make sure I had more than enough of everything, including; extra clothes, diapers, wipes, blankets, bibs, formula, meds in cooler, syringes, bottles, water, cup to warm up the bottles in, the feeding pump, charger, extra feeding pump bags, pump’s backpack, NG tubes, lube, tape, scissors, stethoscope, oxygen tank, extra tank, and nasal cannulas, of course a bunch of toys, and notebook of Whitney’s medical history, notebook for taking notes, my yearly planner, and all of my stuff! Anyways, a couple months after Whit got her G-tube, (AUG 2011) I was able to start a Blenderized Diet (NOV. 2011). It took a couple months to figure that out too, but now the day to day needs are pretty routine for me. So depending on the week, Whitney has 2 or 3 therapy appointments, and 1 or 2 Dr. appointments. Daily Routine includes:
730am Wake up and Daddy giving Whitney water & meds.
800am Tube feed 4oz.
1100am give water through tube because she doesn’t drink enough
1130am tube feed 5oz.
1200pm-2pm Whitney takes a much needed nap. She’s really loves her naps!
230pm water & meds.
300pm tube feed 4oz.
600pm water.
630pm tube feed 5oz.
7pm Bedtime routine and sleep
930pm water & meds.
1000pm tube feed 4oz. while asleep
That is simply her tube feeding schedule. During her meals, she is in her high chair, playing with food or toys, while I have syringes of food and push it slowly into her stomach. Every meal takes about 20-30mins to complete. In between that I am cleaning all of her supplies, Making her food every other day (takes me about 40-50mins), every other normal house hold chore, and If I have free time I will try to shower! Whit also vomits about once a day too, so lots of cleaning that up and laundry and baths. Plus I like to make her real food to play with, taste, and smell. I also try to play with my girl as much as possible! We love to bike ride to the park if there’s time, or we just play in the backyard. I'm really not cleaning all the live long day! So that's pretty much it. It's definitely not a normal toddlers schedule but we make it work, somehow.
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