Blog #11: G-tubes and Bikes

To donate to our campaign, please click here: https://tgen.fundly.com/hall-of-famers/donate

For Emilia's first birthday (11/29/11) we had a soup puree party.  We had just gotten back from spending 3 months in Cleveland at the Cleveland Clinic and she had been occasionally eating pureed foods by mouth in decent amounts.  As many of you are aware, she had an NG tube placed at 2 months and a G-tube at 8 months, so I would be making a major understatement if I said eating by mouth has been "complicated".  I don't think I realized just how complicated it was until experiencing just how easy eating can be with our 4th child Gigi (more to come on this).  These next two pics from her first birthday party are some of my favorites.

Here she is before we tried to feed the soups to her.  You should notice the 3-1oz cups of the different soups.  At the feeding clinic, you had to measure all volumes of food so we could keep track of calories..a time consuming task that we still essentially do but I have gotten much better at estimating after the last few years.  Like I referenced above, it is amazing how easy it is to feed a child if he/she actually likes to eat.  With Emilia's eating, we honestly feel like we are slowly peeling back each layer of an onion until we finally arrive at a state in which she may actually enjoy eating.

 Aha, and here is a pic right after we tried to get her to eat the soups :).  Doesn't the face say it all...she looks like we are trying to cause some serious harm to her.  Now back to the onion.  Here are the layers we have either scientifically solved for or divinely discovered or simply arrived at by sheer LUCK in chronological order:  Aspiration (milk going into her lungs), volume sensitivity, rate (how quickly you pump formula into her tube), day-time versus overnight volumes, texture sensitivities, caloric needs (versus doctor wants), numerous bouts of dehydration, gluten sensitivity (celiac), lactose (we are just limiting not eliminating this) and little to no appetite (this may never be solved, but we are really in a major testing phase of this right now)..wowsers, and I always thought babies/kids just ate when they were hungry.  Each of these was solved with trial and error, there was/is no easy answer.

Getting back to Gigi and food/drink.  The child (10-months old now) will eat or drink just about everything she can get her hands on.  For instance, I don't think we ever gave juice to our other 3 children until they were 2+ so we could keep their milk intake high.  Gigi will find any random juice box and chug it down before you can even find her.  Sometimes I watch her chug...all ~7oz in less than a minute, then I think about how many hours it takes to get 7oz of any type of liquid into Emilia.  Good news is that we noticed that Emilia has experienced an interest in juice boxes (she would never drink juice before) because she watched her sister chug them down.  Needless to say, both girls are now drinking at least 1 (and an occasional 2) juice boxes a day.  Poor Gigi (aka the fourth child)..we will no doubt ruin her teeth by allowing this, but have to be honest with you that if by chance we can get Emilia to drink an entire juice box (a feat I would have previously said would require a miracle) by allowing Gigi this treat, we are going to have to run with it at this stage.

I am slightly embarrassed to admit this next crazy accommodation I have made to get calories in Emilia.  After learning at the NIH that Emilia doesn't seem to have major blood sugar issues at this point (although she does have low blood sugar) and that her caloric needs appear to be closer to 80% of age appropriate, we decided to take on an aggressive change to her diet.  We stopped giving her any formula through her tube during the day (just give her water or pedialyte) and decided to see if she would develop any sort of appetite.  We still feed her formula through her tube all night long but we essentially cut her calories in half.  It took more than a week before I saw any hint of an appetite, and even at that it was minimal.  She has definitely enjoyed not having to get the formula during the day.  So much so that now that I have added back just a couple of day-time formula feeds (she just wasn't making up enough calories by mouth), she is REALLY making me work for them.  It started with her telling me that I could put the milk in her tube (we do this via a 2oz syringe) only if I she was able to run and I chased her while doing it.  Some of you that are familiar with G-tubes might be able to imagine how difficult this is.  One, I have to hunch over to reach her cord and put the syringe in.  Then, I have to run within 6 inches of her as she mazes throughout the kitchen, family room, an occasionally run outside without pulling the syringe out (and worse would be her cord or tube), all while pushing down on the syringe so that it actually goes into her stomach but not too fast to make her throw-up.  This is very difficult, and let's just say that the one time she made Dave do it over the weekend, he wasn't terribly pleased :).  She has escalated it now.  Yesterday her new rule was that she would only permit the formula if I chased her on her bike.  At first I thought she was kidding, but then she went and got on her bike and said, "I'm ready".  She is super fast on her little 3-wheeler/ big wheel...and let's just say that if she keeps up this requirement, I may just be ready for the half-marathon long before I thought I would be.  It is a true test of my agility/ability/sanity/will/etc....the kid is such a crack up.

Dealing with these feeding issues is where I have really learned to appreciate subtleties....something you are just thankful for one bite or one sip.  In life, there are so many times that we want to check something off a list, and it is usually something substantial so it is these subtle successes that we just overlook.  Being a food/meal LOVER, when Emilia first got her G-tube, I remember thinking how sad life would be if you couldn't enjoy a meal with a friend or a starbucks break from work (oh how I miss the starbucks at the AZ Center)...food is so social.  The food table is where/when we learn to communicate, to gather and sort out the day, where most people give thanks and often say the only prayer they may pray that day.  We have done everything we can to be sure that Emilia experiences all of this "living" that takes place at the table, but it has not been easy.  To end on a funny note, she loves to say the prayer before dinner and this is generally how it goes, "I am thankful for momma, dadda, ju-ju (Julia), molly (these are her cousins), gianna sofia, and then usually picks one brother to name."  This usually makes the one she leaves off pretty angry and we can't help but assume that she is doing it on purpose because she rotates which one she leaves off but always says all of the other names.  Something tells me she is not far from normal in many regards :)..love that girl's feistiness.