The great feeding debacle

As I have talked about numerous times, Luca is fed through a g-tube.  You can see various posts about it here.

This post talks a lot about vomiting and feeding.  A fun post indeed.

The majority of her readmissions to the hospital over the last 2.5 months have been due to her bile ducts being obstructed.  (A little lesson on your body...your bile is what makes stool colored and is also responsible for helping your body absorb nutrients.  When your bile ducts are obstructed, your poop turns white - weird!  End of lesson there.)  Often with the bile ducts being obstructed, patients vomit frequently and experience nausea.  Luca certainly followed this symptom - I was doing about 5-7 loads of laundry per day a couple months ago because she was vomiting anywhere from 5-10 times per day.  Fun stuff. 

(And you all know how freaked out I am by vomit - this was a tough time in our household - I was sad for Luca that she felt so ill, but I was also personally battling the automatic response of RUNNING when hearing someone vomit.)

But over the last month, the vomiting has become less frequent.  (Thank God.  Seriously.)  She is vomiting about once every few days now.  I attribute the improvement to an improvement in the bile duct issue...now that she has drains in both bile ducts, the issues must be improving.

In February, we met with an oral therapist.  She advised us to skip the bottle since she had such a negative association with it, and try solids.  The first few tries weren't completely bad - as in, she would not cry when you tried.  She did not know exactly what to do with the food, so she'd hang onto it in her mouth for about 3 minutes before swallowing it. 

(Pictures taken in February - this was her first time trying solid foods - sweet potatoes to be exact. The top picture shows the face she mad every.single.bite. She gave us some very serious stare downs at that time. And the bottom picture is when we were all finished with that trial...not happy.)

But then, the vomiting phase began and her gag reflex was so strong that attempting to feed her by mouth was futile.  She would gag as soon as anything hit her lips.  And over time, she started hating that we were even attempting this new trick.  So we stopped for many weeks and in that time, the vomiting decreased.

Now, we are back to trying.  But, she has developed a strong aversion to anything being in her mouth besides her paci or her hands.  So we are taking extremely small baby steps, not wanting to push her too much, but certainly trying to desensitize her a bit.

I decided to stop trying pureed foods and just stick with plain old rice cereal.  Over the past week, I take a couple times per day to work with her on it.  I let her play with the rice covered spoon as a distraction.  With very clean hands, I dip my finger in the food and then touch it to her lips.  Then, I let her do what she wants.  She normally grabs my finger and lets it roam her gums.  As long as she is tasting it and not refusing, I consider this great progress.  Little by little, I've been letting more and more hit her tongue.  And she's been swishing it around and then swallowing it.  Progress indeed!

Part of the problem I think, in addition to her negative association with anything going in her mouth (she was suctioned a ton in the hospital post transplant, and she gets a horrible tasting medicine swished around in her mouth at least 2 times per day), I think she has trouble sensing hunger.  Why?  She is fed continuously via her g-tube 22 hours per day.  We do not let her get hungry!  She was switched to continuous feeds during the vomiting phase so that she would never have too much food all at once.  But now that she is vomiting less frequently, I want to talk to her doctors about switching back to feeding her on a schedule (about every 3.5-4 hours).  I think this will allow her to feel hungry, which may help us feed her by mouth.

And the sad thing is...she is SO intrigued by food.  If a bowl of food passes by her expect her hands to be in it.  And she stares us down so seriously, wide-eyed, when we eat in front of her.  I am hopeful that we will continue to make progress and that one day, eating will just click.  I pray that one day, she can have the g-tube removed.  I pray that one day, we will look back and think "wow, remember when she wouldn't eat!  look at her eat now!"

The whole feeding debacle has been one of the most frustrating to deal with.  The medicines we can handle.  The muscle weakness from being in a hospital bed for so long is something I can understand easily.  But eating and drinking are such basic functions and everywhere you look you see everyone doing just that.  As a result I am reminded all the time that Luca is different.  It is devastating for your child not to be able to nourish herself.  And people ask ALL THE TIME about how she is doing with food.  I have been politely asking people to stop asking me...that I will let them know when she is eating like a champ.

One day she will get it.  For now, we'll keep working on it and pray that she continues to improve.