Abby didn't have a very good night of sleep, so by 8am she was still sleeping, I woke her up at 8:10, as they want her to be on a 8am wake up schedule. Well she was pretty cranky all morning because I woke her up, so we'll give her until 8:30 tomorrow! haha! Allyne had me do a mini feed first just to see how I feed her and what Abby's reaction was. She took 1/2 an ounce of yogurt with some saffola oil pretty easily, but she did note that Abby has very premature lip closure (meaning when offered the spoon, she closes her lips way before the spoon even reaches half way into her mouth), has tongue thrusting and also does not have wide mouth acceptance of the spoon. This is all stuff that they have to work on first in order to be able to work on getting the volume/quantity of food up.
The schedule they want Abby to be on is 3 solid meals a day plus 3 milk/carnation instant breakfast liquids a day (3 ozs per drink). The biggest hurdle today was getting Abby to drink the milk, she was pretty resistant pushing the bottle away, crying, turning her head, being tight lipped etc. She only consumed 3/4s of an ounce of milk all day - they want her at a minimum of 9ozs a day so we have lots of work to do! She also had similar behaviors with the solid foods but not as much, but the main thing that they are working on with her is that none of those behaviors are going to make the food/drink go away, it's still there and she has to eat/drink it.
Each meal is given a certain amount of time, so it's really their goal to get her to take as much as we can within that time period. Below is a video of Abby during her dinner feed, as you can see she was not too happy, but they still wanted her to eat what she needed to eat, and Abby seems to be beginning to understand that this is what she HAS to do, no way around it!
Overall Abby did okay for her first day. Each solid meal was only 1/2oz to 1 oz of food, so not too much, but we are hoping to up that amount shortly. The goal is to get Abby to be eating a minimum of 560 calories a day (includes breast feeding), and she's currently around the high 300s to low 400s, so we need to get that up, and then in order to play catch up on her weight we will eventually want her caloric intake to be 715 calories per day!
Here are some techniques that were worked on today:
- Words commands are important. Don't say "are you ready to eat?" it's not up to her, say "it's time to eat", or "its time for milk", when she finishes show her the bowl/cup is empty and say "empty, all done" and sign all done.
- Leave the spoon at her mouth until she opens her mouth big and wide and say "big ahh", if she opens big and then closes her lips prematurely you leave the spoon there in her mouth until she finishes opening up more to get the whole spoon into her mouth.
- Distractions for Abby are key, so for solids we play music and get her more toys (the toys we had boughten her she's tired/bored of, so they said lets just try household items like tupperware, spoons, etc). For milk time we play the iPad with "super simple songs" or "gigglebellies" songs playing on youtube.
- When drinking the milk we have to use a squeeze bottle as she will not suck it on her own (she only will suck if theres water in there!!), in order to get her to swallow what we squeeze in we have to use our hand under her chin to support/stabilize her to take the drink and not spit it out.
They said Abby definitely has resistance to eating and they seem to think that this all stems from her Silent Reflux which caused pain when eating and that has now been formed into a habit of being averted/fearful of food. They are hoping that within 2-3 months we will see major improvements!
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| Dr. Patel left, with Allyne on the right. |
And there you have it! I'll keep you posted on how tomorrow goes as well!!
Thanks for all the support and prayers!
ME
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