Not Much Help

Today was #4 of Averi’s swallow studies, but before that we went to see GI to have her weighed. I was curious to see how heavy she was because I promised myself that I would give her the 5 feeds a day for the last week and a half as I was told. I kid you not, she gained 12 ounces (almost a whole pound), moved up to 35%, and it shows!

The first thing I told the doctor when she walked in was that Averi cannot handle having feeds every 3 hours. She has spent the last week refluxing to the point of milk coming out her nose and yesterday she even projectile vomited on Dan during church, all of which is accompanied by screaming and back arching. Dr. Punati changed her back to 4 feeds a day but upped her formula from 20 calories per ounce to 30 (less fluid, same calorie intake).

She also explained that the dairy protein intolerance can be outgrown but usually not until around 2 years of age. We will schedule an endoscopy at 18 months to make sure that everything is healed before trying to introduce dairy again.

This was when I learned how uptight the Neonatal Clinic was and how laidback GI is. Dr. Punati looked at the growth chart (not even a Downs chart), saw that Averi had gained weight, and said she would see us back in 3 months. We went every 3-4 weeks to the Neonatal Clinic. And that was it.


We then headed over to Fluoroscopy for the swallow study. The main purpose of going back again was to see if Averi is aspirating because she tends to sound wet after eating orally. They tested all three thicknesses (thin, nectar, honey) and there was no aspiration.

Throughout the whole thing I got the distinct feeling that the people administering it didn’t think Averi needed to be there. They kept mentioning that she didn’t need to come back anymore and wouldn’t listen to what I was telling them about what Averi can and cannot handle.

I told them that Averi can only handle thin liquids with a slow flow nipple so the lady looked at me and decided that Averi is old enough to use a faster flow and used that instead. Of course she made a mess of it and didn’t do any consecutive swallows.

Then they tried the honey thickness, which is what we usually use, and couldn’t get her interested in it so they asked me to feed her. She went right to it and did at least 15 consecutive swallows. (It was fun to feed her but I was bummed that I didn’t get to really see her swallow on the video screen.)

(She was more interested in the seat belt than the milk.)

In the end they told me to try using thin liquids because she can “handle” it without aspirating and it’s never the goal to use thickeners if we don’t have to. I asked them why it mattered if we use thickeners and they said that she has to work harder to get the thicker milk out and therefore tires faster and won’t eat as much. So basically, they would rather she try to drink thin liquids that she can’t control well as opposed to “getting tired” and at least swallowing a few ounces.

On top of that, they used Nesquik to flavor her barium and I was really excited to get some and try using it at home. I double checked the ingredients when I got home and it has both milk and soy in it. They specifically clarified with me that she had allergies to both. I was not impressed with the study and we didn’t really learn anything new.

Here's her one swallow I was able to capture while they were feeding her the thin liquids:

I came home tonight, sat down with a calculator and all the information we have, and did a lot of thinking. If we aren’t going back to GI for 3 months, then that means I can finally have more say so in what we feed Averi. I have made my own feeding schedule and we are going to do weight checks every 2 weeks to make sure she is following the growth curve. Hopefully things get better from here (not that they can really get much worse feeding wise.)