I'm jumping into the story quite a bit in order to quickly update friends and family that have heard we are weaning Clara off of NG tube feedings. She has been putting food to her mouth for about 4 months now. Initially, it was simply uninteresting and she was dealing with daily nausea. In the last month, she began to be fully interested in what we were eating - or drinking. OT told us that she had very immature tongue and mouth behaviors (because all she has done with her mouth is suck on a pacifier). We worked on a couple of exercises and stopped giving her a sippy cup- to try to correct her tongue thrust and to get her to gum/chew on objects and food. 3 weeks ago she would only bite some very easily dissolved veggie chips with her top teeth and her tongue. This past weekend, she ate an entire peanut butter sandwich. HUGE changes. We new she was ready to eat on her own.
I don't have good summary notes of our first few days of this process. We basically slowly reduced how much formula we gave her through the tube by 30%, then 50% for a couple of days, then 70%. Today, we only gave her pedialyte to keep her hydrated. I began a very detailed chart the first day of the wean which keeps track of the foods I gave her, how much she ate, how much she liked/disliked them, how many pee vs poo diapers she had, how much formula via tube vs water by mouth she drank. There is a main planning page which pulls summary data from each daily tab. I send it to the doctors so they can know how she is doing as we go through the process. Yesterday, I began a descriptive summary of "thoughts" in addition to the factual information. It helps me remember the touchy feeling part of what is happening and kind of explains for the doctors why she might or might not have gotten what I had told them I planned to do.
I thought you all might like to be able to read the summary parts of it so you can keep up with how she is doing. The days are long and hard and involve quite a bit of fixing and cleaning up food. So the notes will be lacking in much structure. But you'll be able to hear some of what happened at least!
Wean Day 4:
she ate lots of snacky bits all day and the messes got so out of control that I couldn't mentally keep up with how much she ate of what and what the nutritional value was for each. We woke up at 5:45am with her newly placed NG hanging out…tired mommy by mid day. She did eat lots of goldfish and lots of peanut butter at dinner; fair amount of cheese consumption over the day as well as chocolate pediasure and chocolate shake cumulatively. I'm getting a little bit more worried as a mother simply because I have been so focused on getting her NG feeds perfect for so long. To not feed her is stressful. And I worry about not being able to make up for her hydration at night if she doesn't pick up her drinking during the day. She seems to drink the most after sleeping and in the evenings. 800ml is a lot to give her overnight without waking up simply to change her diaper. She finally has learned to sleep completely through the night despite her 11pm and 12am meds. I am pretty hopeful about tomorrow. I think it is time to make her eat all on her own. If anything, I will give her pedialyte during the day. Not formula. I have lots new food options for her tomorrow including higher fat and more dense in calorie options. It's time to do this. I know she can do this.
Wean Day 5:
I was really proud of her at breakfast. 3 new foods presented to her and she tasted and repeated bites of each. Needs to up the intake but loved seeing the interest in each. She was able to enjoy the lil smokies sliced in half as well as in little bity pieces. For her peanut butter sandwich, she is taking bites out of a sandwich as well as tearing pieces off to put in her mouth. I showed her how to lick food off her index finger a long time ago and that has been a skill she likes practicing. Today she advanced to licking off her middle and ring finger at the same time. She has also discovered that if she drinks long and hard on the straw cup, and then squeezes the straw, it will squeal as air sucks back into the cup. We are making it a bit of a game to increase her drinking. Worked well this morning. she is also getting better at feeding herself from a spoon. She really likes to dip her spoon into the yogurt cup. But intake goes down once she does. She will still let me feed her with another spoon or the one she is playing with but then gets frustrated and decides she's had enough of this activity and food. She tried to drink from the yogurt cup at one point when she realized that was what I had put in her mouth and she wanted more. The chocolate chip cookie was fun because she was trying to put it on her new toddler fork and eat from the fork. It didn't work too well but when it didn't work, she would just pick up a piece and take a bite. This afternoon we had a friend over to watch her while I prepared a finger foods with dips picnic. She was too excited by the fun of a visitor so we moved to the highchair where she finally accepted some peanut butter after refusing so many things. After about a Tbsp of peanut butter on a spoon, she ate 2 oz of yogurt. You could tell the hunger had kicked in and that this food was easy to eat alot of the most quickly. The same thing happened at dinner. She ate almost 3 oz of yogurt after refusing or being frustrated by the process of picking up rice mixed with the veggies I had prepared earlier. She got to a very very frustrated point although kept eating the yogurt for a while. When we finished, she sat on the porch with Alan and very well coordinated eating some chocolate chip cookie (almost no crumbs...just cookie gone) while reading a book.
1 comment:
She's perfect!!!
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