What To Do, What To Do....

Meagan had her swallow study this past Friday. We checked into Children's in the early morning.  They explained that Meagan would sit in a Tumble form feeding chair in between two xray - like screens so we could watch her swallow as she ate.  She would be fed a bottle laced with Barium, and then a tiny bit of pureed food laced with barium so they and the screens would show how things traveled down her esophagus.  Meagan has had feeding issues from day 1, and has started to be really rattly with gurgling when she sleeps after eating, so we needed to  make sure she wasn't aspirating fluids into her lungs.  The therapists wanted to make a plan as to how to move forward with Meagan's feedings, but couldn't do so without knowing she was in fact swallowing in a safe manner.  Meagan was hungry of course, since we couldn't feed her 4 hours before the study.  The poor thing had already had a busy week with 3 doctor's appointments, CT scan, and therapies. And we have seen a few of the evil "S" words (seizures) pop through as well in the last 2 weeks. She was worn out!


Following the swallow test, the SLP told me that Meagan had a little fluid gathering in her cheeks when eating, but basically swallowed the liquids OK (which didn't surprise me since she nurses well and now takes bottles.)  She didn't take much of the food, but the tiny bit she did swallow showed she was not aspirating.  This was good news because we don't want her taking any foods into her lungs.  No aspiration into her lungs means we can keep pushing forward with speech and feeding therapies to hopefully help her take more baby food.  The one *little* part of bad news is it gives us no clear answer as to why Meagan won't take pureed foods. When I have tried chunkier foods or thickening her bottles, she ends up getting sick - sometimes to the point of throwing up milk she has eaten a few hours before.  We will get the full results of the swallow study at her next doctor's appointment so maybe we'll get some more insight at that time.

Waiting at the Pediatrician for a weight check

If Meagan wanted to nurse and take bottles for the next year, it wouldn't bother me one bit.  But the compounding issue is that Meagan has lost weight again. We had another weight check the same day and found she had lost 6 ounces.  (down to barely 14lbs again).  If she would gain or stay stable in her weight, there woudln't be as much of an issue with her eating.  As I said, she still mostly nurses, which, I do not mind.  However, with her nearing 1 year old, as she continues to grow, and also work very hard at her therapies, she is going to continue to burn more calories and need more nutrition than I can provide alone.  So while she can nurse when she wants to, we need to have a plan in place for getting her on a better eating schedule as we enter this next Fall.

I called and scheduled a follow up appointment with Dr. P (her GI doctor) so we can sit down and re-evaluate Meagan's situation with her eating.  I will keep trying foods with her everyday, several times a day.... but as of now there seems to be no progression with the food. I thought last month she was starting to finally take a little bit, but that was short lived.  Hopefully, upon meeting with Dr. P we figure out a good plan for Meagan as she enters toddler-hood next year.  I want her to  eat... however, I also don't want her to hate the process or associate eating with anything negative. So that is why I feel a good consult with Dr. P will open up other options for us to help Meagan gain weight more consistently.   Meagan is Meagan, and we have to work on her schedule.  Dr. P putting and end goal in place for us will be a great start to realize what we need to do this next year to ensure Meagan is getting the proper nutrition she needs to keep growing and thriving.

Nursing and bottles will continue to be the main source of her nutrition, since she does both comfortably.   We will also continue to offer foods everyday and see if things "click" as we work through her speech and feeding therapies.  Beyond that, I know Dr. P will help us figure it out and have a good plan for Meagan to move forward.  The most important thing is that Meagan be the healthiest she can be and not continue to lose weight.  As for what to do.... time will tell.

Worn out from her busy week!