Once again, I have gone astray from this little blog.  I wish I had some great excuse...but life gets busy around here and time just kind of slips by.  I mean to blog and have so many things I want to put down here.  But the days go by and I have to choose those free moments of quiet carefully.

I feel like Luca's assistant many days - managing her doctor appointments, phone calls to insurance companies, filing all of her paper work, doing her therapy exercises, chauffeuring her to and from her appointments.

And it seems like her little immune system is very sensitive.  While none of these issues have warranted hospital admissions (thank God), I sincerely hope and pray that we can have some better stability soon.  Since November, it has been one pesky little thing after another.  Colds, 3 ear infections, multiple teeth coming in, constipation issues, and currently, a pretty bad infection around her g-tube.  Last week for example, between hospital visits and pediatrician visits, we spent three days visiting doctors.  That excludes days of therapy at home.  And on the days we were not at the doctor's office, I spoke with her pediatrician every single day.

I want my little happy girl to be just that.  And while we get a good day or two here and there, inevitably one of the above sparks up and causes her discomfort.  And as a mama, it is incredibly hard to watch your sweet babe in pain or discomfort.  On days where she is happy, she is independent and wants to play and run around all day.  On the happy days, I am able to accomplish some things like laundry and phone calls.  On days where one of the above is bothering her, she is whiny and clingy and it leaves me another day of getting nothing done, and I lay my head down at night exhausted, both mentally and physically.

I am hoping with the spring weather around the corner, that it will bring with it some stability.  I want my happy girl back!  If nothing else, it will allow us to get out in the sunshine and provide some new distractions and adventures.

Progress

Today Luca ate two jars of pureed baby food - bananas and prunes.  Today is the first time she ever took an entire container in one sitting.  And she somehow managed to eat an entire container two separate times.

Joyful for the progress!  Compared to where we were awhile ago I am so very grateful for every new thing she is willing to try.

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.

Feeding Tube Questions Answered

First off, if I suddenly go MIA from the blogging world, it normally means that we're back in the hospital with Luca.  That's where I have been.  She was admitted 1 week ago today, and we were discharged last night.  Hoping to get back to blogging regularly now that we're back home.

I posted about our experience with Luca having a feeding tube.  You can read the original post here.

A few people asked some questions.  I am all about raising awareness for Urea Cycle Disorders, and everything that comes along with it.  As a part of that, I am open to answering questions to make it seem more real, less scary.  Along the way, if you have questions, please feel free to ask.  So here are the few questions, answered.

1. Will Luca ever get the g-tube removed? It is our hope that she will have it removed eventually.  However, she will need to be eating/drinking all of her food by mouth and taking all of her meds by mouth for several months before it can be removed.
2. How will it effect her long term?  People can live their entire lives with g-tubes.  People have them for all sorts of reasons.  There really isn't anything about having a g-tube that will inhibit her from doing anything.  She can bathe, swim, play sports.  She may not want to wear a bikini as an adult - but so be it.  While we don't want her to have it for long, if she does need it, it will be normal for her to have it because it's all she's ever known.  Eventually when and if we can have it removed, it will leave a little round scar (very small in comparison to her massive transplant scar).
3. I've seen a g-tube on another child before and it doesn't look like Luca's.  What's the difference?  We were lucky that the doctor inserting her g-tube was able to go straight to a MIC-KEY button.  That is what Luca has - a button.  The advantage to this is that we can detach the tubing, and it sits flush against her skin, just like a little button or port.  In the picture I posted, the tubing is detached and the button sits nicely against her skin.  Normally, people start with a tube that comes straight out from their bellies, and therefore it cannot be detached.  Once the skin heals around that tube, they normally can upgrade to a MIC-KEY like Luca.  It just depends on the doctor, and the specific case whether they go straight to a MIC-KEY, or start with just a plain old tube.