Baby ‘food’ steps

Hannah is still well on her way on the road to recovery.

Feeding-wise, we have finally got her feeds up to 170 mL/hour (a bit less than 6 ounces).   She was at 200 mL/hour before her bout with the rotavirus, but we ended up having to go back to 40 mL/hour continuous feeds just to get her stomach used to food again.

We are hoping to be able to get her to bolus feeding in the next few weeks which would cut down each meal (5 a day) to 20 minutes instead of 90 minutes or so!   Before this hospitalization, she would down an 8- to 10-ounce bottle of formula/babyfood in 5 to 10 minutes!   So if we could get 8 ounces down in about 20 minutes, wow, would that be wonderful 🙂

Before we left Texas, after her trach was put in, she failed her swallow study.   We were told it was likely due to the fact she had no coordinated swallow or suck reflex because of the choreathetoid movements.  In the notes of the swallow study results, I found that the speech pathologist recommended that we can try thicker foods like pudding and baby foods, those with a distinct color, and see how she tolerates that once we felt she was ready to try.  The reason for the distinct color was so that we could see if she aspirated it, as she would likely cough it back up into her HME, and we would be able to see the coloring as we did when OT first tried it back in Texas.

Since her swallow and suck reflex has tremendously improved in the past month, we decided to give baby food a shot today.  We bought a two-pack of Stage 2 peaches (orange) and a 2-pack of berry banana (purple).

We were confronted with the pre-hospitalization problem that we had where she would not take food by spoon (except for gerber yogurt).  But we decided to try anyway.     Our nurse was here when we tried it as an expert eye looking for signs that she may aspirate the food.

It took just a couple of little spoonfuls, but she LOVED it.  Amazingly, she was opening her mouth for each bite!  We fed her a whole entire plastic tub of baby food BY SPOON without argument!  TWICE!  We tried the berry banana around lunch time and the peaches around dinner time.  Both times, she took it by mouth.

Even more amazingly… she put her hand out to ask for more!   She never communicated “more” to us for anything, but after almost every bite, she would put her arm out as if she was trying to grab the spoon for more.    As soon as we put another bite in her mouth with the spoon, she sucked it all down.

We checked for aspiration in her HME dozens of times, just out of paranoia.  But there was not one instance of aspiration today!  Of course, this does not mean we are out of the woods with this aspiration issue, but I am feeling so much more confident now that we can likely continue with thicker foods.  We don’t plan to try juice or formula again until we get another swallow study at the NIH in Sept or Oct, but thicker foods is a great start — especially is she is willing to take it by spoon!

Makes me wonder — did she forget she had an oral aversion to being fed by spoon before all of this happened?  Or perhaps she just loved the taste in her mouth so much, after having nothing in there for almost 3 months, that she was willing to go for it?

Doesn’t matter the reason — she ate baby food today.  By mouth.  Yeah, baby!