Mallorie will NOT take anything by mouth, most of the time. She sort of decided she liked food in November, and one time gobbled half of a stage 2 baby food jar, and was doing fairly well ... when she was in the mood for it ... with drinking milk from a bottle.
And then she had her brief intubation fun in January, and got almost so she didn't want us even squirting liquids in her mouth again. For sure, she wasn't having anything rigid like a syringe near her face, and forget bottles. Nothing resembling food in the mouth. One time I thought she might want to taste a speck of real banana and she gagged before I could count to 1, and barfed her tummy up. I get that; stuff in her mouth (we were suctioning her airway the entire night she spent AWAKE with that tube in her throat) she now associates with gagging and discomfort. So I decided we would back up, not push it. She has years to work on it.
A month or so ago, Becca, her speech therapist, announced that she was ready to work with Mal on feeding by mouth. What did I think she would like to try? Applesauce? Yogurt? Pudding? Right.
That night, I got a container of ready-made pudding, and after several minutes of persistence, she started licking and sucking it off the spoon, and ate almost 1/2 the container. I snapped a picture with the cell to send to Becca, and while it was sending, she barfed it all up. Then ate almost all that was left in the container. And barfed. I attributed that to her whole dairy issue. Anything dairy (formula, whey protein, cheese in baby food) seems to make her vomit and also gives her that nice bleeding diaper rash that just screams no-one-taking-care-of-this-baby.
So we got a package of instant pudding mix, which didn't have any recognizable dairy in the ingredients list. Mixed it with breastmilk, and ended up with thin yellow liquid. Then I remembered reading that breastmilk won't thicken with Thick-It, either, so I assume it was the enzymes in the milk digesting whatever starch is supposed to thicken the pudding. She also didn't seem to even like the taste of what was dripped onto her lips.
So we though about soy milk, which she tolerated during a recent GI illness. Added to the soy milk the sodium and potassium that she needs to have in her liquids, and mixed it with pudding mix on the way to therapy. Never thickened. I tasted it - ghastly! Salty and bitter and just plain liquid yellow foulness. She let Becca spoonfeed her the liquid gunk, and licked her lips. Go figure. Not gonna help her get more comfortable with thicker foods, but it's something by spoon, in her mouth.
I was pushing a syringe of babyfood into her tube a couple of nights ago, and it smelled so good that I thought she might like a taste. She did. And then she sensed a "speck" of pea skin or something and gave it right back.
So I gave up the argument, and planned to let Becca do all the magic, and reminded myself ... she has the rest of her life to get this figured out.
But ... sometimes if this cute girl is sick and running a fever, and the moon is in the right phase, and Hannah is around, sometimes Mallorie will grab a bottle and down 60 cc (2 ounces) in just a few minutes. No gagging, no turning her head away, nothing.
I can pretty much promise you, tomorrow, she will refuse it again, and probably gag and puke.
But today, I smell photo opportunity.
Jacob came up to me a minute ago. "Can you tell me 6 words that mean jail?"
"Six words that mean the same thing as jail."
Um, prison, pen ....
Pen, short for penitentiary.
"No, 6 words that I know. That mean jail."
"I gave you a hint. J... J... Mommy, I already said the word."
Oh, yeah, prison, jail.
I can't think of any more.
"OK, want me to tell you? Jail, prison, slammer, juvenile detention, juvie."
Who teaches them these things?
The Trisomy 18 Connection
1 month ago