I'm No "Tubie Newbie"

February 7-13th is recognized as Feeding Tube Awareness Week.  Did you know? It is also Congenital Heart Disease Awareness Week.  I don't believe this is a coincidence in Beau's life and you'll find out why.  So with this awareness week upon us, Beau decided it only fitting to pull out his GJ tube for the first time since he got his g-tube in April of 2014... that's almost 2 years so I'd say we had a pretty good streak going!  

My mommy instincts were in high-alert this morning.  For the last few mornings Beau has been unzipping his jammies and taking off the gauze and tape that keeps his GJ-tube dry and secured. I had been getting in there "in time" but knew I needed to start having him wear a onesie under his jammies but I just hadn't implemented the new practice yet, clearly one day too late.  I woke up and after laying in bed for a few minutes listening to Beau talk to himself, I hopped in the shower since we I had a full morning of appointments so then I could focus my attention on getting him ready and off to school before tending to myself.  I got out of the shower and I just KNEW. I went into his room with the lights still off but enough shine from the hallway light to see he had undressed himself from his jammies.  I immediately grabbed his stomach to feel his bare skin and NO TUBE.  Oh yes.... I did know it....  I'm no longer a "Tubie Newbie" as Bethany once coined me and I knew immediately to grab our backup G-tube (just the simple "button" with a balloon back) and insert it in his tummy hole (called a stoma) to keep it open until we could get to the hospital. 

I called interventional radiology (IR) to give them a heads up that we were on our way to the Emergency department in hopes that they could get the ball rolling... or not! :) We waited in the ED for 6.5 hours before finally getting a room up in the pediatrics ward where they could officially admit Beau for the procedure. They had to coordinate with peds, IR, and anesthesia which is why it took so long. Once up there, we almost immediately turned around and headed down to IR.  We had to wait over a half hour for some equipment from the OR to get down before they began.  I cannot tell you how thankful I was that Beau was happy and cooperative the ENTIRE 7 HOUR WAIT! Songs and cuddles for this boy of ours. 

This next part is one of the hardest things as a mommy... and we've had some HARD and scary times but this one is in the top 10... watching Beau be put under anesthesia.  I only help in hopes of keeping him a bit more calm but holding his helpless hands back from the mask as I sing "This little light of mine" was heartbreaking to me today.  It always scares me when they tell you the risks to the procedure and even though this is "rountine" for Beau every 4 months, something about today was a bit more emotional to me.  The "thought" crossed my mind (as I'm sure any parent) when I whisper the words "Mommy loves you, Daddy loves you, and Jesus loves you so much" as his eyes get weak and drift to sleep. 

So after 2 hours of waiting (this should not have taken this long) I finally get word that they're finished, it all went well ,with a little trouble getting it through his pyloric sphincter, and he's in the PACU coming off sedation.  After getting him back to my room for mommy cuddles, we had to wait an hour to make sure he was handling his tube feedings before heading home.  So thankful they were able to make time for him today and even more thankful for The LORD's hand of protection over our favorite lil guy. <3 

People commonly ask me three questions about Beau's feeding tube. 1) Why does he have it (beyond the obvious that it feeds him)?  2) How long will he have that? (I hate this one!) 3) Does he eat anything by mouth?  So here's a little g-tube information, his-tory and some illustrations to help you understand this "button" of his. 

Being a preemie it is not uncommon for children to use feeding tubes (typically inserted in the nose, called Nasogastric (NG) tubes) to help with nutrition until they are able to feed completely independently.  Beau was definitely a preemie who needed this tube due to his poor muscle tone and minimal suck and when he came home from the hospital at 3 months old, he was still using the NG tube.  Andrew and I learned everything we needed to know, changed the tube weekly on our own all the while teaching Beau to bottle feed.  After 3 months of OT in the hospital, proper mouth support, help from our awesome therapists Donna and Tracey, and finding the right bottle.... a month after being home Beau was COMPLETELY bottle fed and had reached his goal weight of 12 pounds for heart surgery.  It was a JOYOUS day taking out that NG tube for what we thought would be forever. 

Heart surgery was on the 4th of February 2014 and immediately after heart surgery he was unable to consume all his feeds by mouth due to energy levels and muscle tone, and then this formula got put in the mix. A week or so after surgery, a heart complication forced Beau to be put on a non-fat formula that tasted DISGUSTING and medications that were equally horrific.  He WOULD NOT take either by mouth well and what we did force down, he ended up refluxing back up. All the while, he was learning that what he was putting in was making him feel awful, so why would he want to do that?! "The initial eating instinct that most children have was destroyed, by what's known medically as an "oral aversion" or "oral defensiveness."  [Beau] had made a connection between eating and pain."

So he went back to being NG tube dependent after all our hard work prior to surgery. :(  He was hospitalized for another month in March of 2014 and this hospitalization and the chronic reflux set him back more and more in the feeding department.   In April, we decided to insert a g-tube into Beau's belly to remove the hassle that the NG tube had become. He was constantly ripping it out and the tape was an obvious irritant to his cheeks. Beau also got a procedure called a Nissen Fundoplication done to tighten the sphincter between the stomach and esophagus in hopes to eliminate his ability to reflux.  Here is a lil diagram of the g-tube: the small plastic piece (less than two inches long is inserted into his belly and then a water-filled balloon on the end (inside) holds it in place. The connection tubing hooks up on the outside and feeds him directly into his belly. And so we learned this too... :) I was becoming quite the nurse by now!

  

The G-tube was unfortunately, not a problem solving procedure for Beau. Within a month, he was refluxing with so much pressure that the Nissen procedure he had done was no longer functioning to "hold down" his milk. He would still have terrible reflux (I compared it to a sick person dry-heaving) and then was now aspirating on his milk (it was going into his lungs.) He would be forced to sit upright for the hour of his feeding and then another hour afterward while his stomach would try to empty.  Even the slightest movements or picking him up would trigger an episode where he would heave, reflux, and aspirate his milk.  It was a VICIOUS cycle and we knew we needed to look at other options. The reflux meds were not enough to help. It was painful to watch and quite honestly, embarrassing when we were in public.  So in the fall of 2014, the doctors agreed the next option was to try feeding Beau beyond his stomach and into his intestines, his jejunum.  It sounds weird but it would ensure that Beau was not able to reflux the milk.  So we went ahead and inserted what he now has, the GJ-tube. This tube has a double port, the G-port which goes into his stomach and is used for his medications and the J-port that runs down into his jejunum which is used for his milk feedings.  This has been a LIFESAVER for him but presented a major setback, he wasn't "allowed" to take liquids by mouth due to his chronic aspirations, thus adding Beau's oral aversion. 

We would give him minimal amounts of water by mouth just to cleanse his palate. We would "hold" water at the end of a straw and drop it onto his tongue and he LOVED IT. He worked with our therapist Serena but for MONTHS Beau would NOT even open his mouth.  He would clench it shut with his tongue sticking out in refusal.  If we could even get the spoon in his mouth it was a good therapy session.   We would do feeding attempts 1-2 times a day, enough to get him regularly trying but not too much to intensify the hate.  And I'll be honest, I grew to hate feeding sessions because they became to frustrating to me.  I felt unsuccessful as a mother, daily (as if it was my fault which I know it's not) and would just want to scream and cry because we were not seeing any progress. But slowly, very slowly he would open his mouth more and show more interest. By 2 years old, a year after not being fed milk to the stomach (only meds), he was actually tasting some puree by mouth.  And by some, I mean MAYBE an ounce! On really good days he would actually swallow but most of the food would go in and come right back out.  I just continually had to remind myself that even getting the taste and textures in his mouth with the spoon was successful.  

Beau started school in the fall so our therapies through the Early Intervention program ended and we had to get new referrals for therapies, thus leading us to a new therapist Kathy. She started in November and within 10 minutes of coming to our home, she told me what his problem was.  He did not know how to move his tongue properly to push the food to the cheek (where we chew) and then back to the middle to swallow.  She has oodles of tricks and strategies that she bi-weekly comes to share with me! I have seen more success in the last 3 months that we have in 2 years.  He is opening his mouth for EVERY bite and actually swallowing some!  He is also fed weekdays in the lunch room at school which I also think has been helpful for him to see his peers eating and realizing that food is a social activity! 

We know we have a long road ahead and one that we will be taking slowly....  People often ask me "How long will he have that tube?" and I cringe inside.  I know they mean well and are just showing interest but it hurts to say, "I don't know, he has to be able to eat everything by mouth and it could be years." We have good days where he'll eat 2 ounces, and other where if the spoon gets in his mouth 10 times we are finished. He is biting into fruits now which is another success! His feeding tube has been a blessing and a curse quite literally.  It has saved his life, obvious blessing!  He gets all the calories and nutrition he needs without question (setting aside his malnutrition scare in Nov of 2014, see post Unwell if you'd like to read about it).  I won't list the burdens for the sake of staying positive! I'll say I'm more thankful than burdened.

My mother-in-law posted an awesome article this week that gave a lot of insight on oral aversions and I felt it fitting to share some of that information:

"It turns out that the instinct to eat is surprisingly fragile. Only around 100,000 children in the United States have problems severe enough to require the use of a feeding tube, according to estimates by the Feeding Tube Awareness Foundation. But 25 to 45 percent of all children develop the kind of habits that pediatricians and therapists see as the hallmarks of a ‘problem feeder.’" We are not alone!  And quite honestly, Beau feeding pump and backpack are so noticeable that is has opened doors to conversations with strangers I would not have otherwise had.  What an opportunity to share God's miraculous story of Beaus life!

"A baby with an oral aversion can lose those digestive reflexes and instead feel nauseated at the sight of a breast or bottle. He/she might not ever feel hungry, especially with a feeding tube supplying all her nutrition."  This personally was one area of switching to the GJ tube feeds that I was primarily worried about. Beau has NO sensation of being hungry because he is fed on a continuous "drip" for 16 hours a day that pushes a lil milk every minute (just like an IV). We tried two different attempts in the fall to feed back to his g-tube but both times resorted in getting respiratory irritation which confirmed that reflux was still present. So the plan in the spring once flu season is over is to begin doing some large volume (4 ounces) feeds to the stomach when he is upright and move forward from there.  He is able to take 4oz of liquid during the hour he receives meds with all the water flushes so that's our starting line!

"Jennifer Berry, an occupational therapist and founder of the Spectrum Pediatrics Tube Weaning Program, based in Alexandria, Va. said she resists the term ‘‘aversion’’ altogether because it implies a dysfunctional behavior. ‘‘It’s not a problem,’’ she told me, ‘‘it’s an adaptive skill to know when eating isn’t safe.’’ To restore balance, Satter says, a parent need only take responsibility for deciding what kinds of food to offer and, as children reach the end of their first year, when and where meals take place. She leaves children in charge of how much and even whether they eat. Satter believes the preservation of that ability to self-regulate is at the crux of solving both childhood obesity and pediatric feeding disorders." So I need to make eating enjoyable and safe for Beau. I let him initiate all "meals" by testing the food with his fingers before I introduce the spoon,  and then I have to wait for his mouth to open before putting in the spoon. Often now he actually leads forward for it with a tongue out, ready to try and even helps hold the spoon! He will use the mesh popsicle looking gadgets where I put soft fruit in the mesh for him to chew. Many things with strong texture he licks once and throws right of his tray. He shows a lot of interest when I'm eating (which isn't always his meal time) by coming to the table and sticking out his tongue and I let him try anything I have; usually it's just a quick "kiss" to realize he's not interested!  


And so here we are, Beau is almost 2.5 and we keep praying, keep trying and keep trusting.  

For you know that the testing of your faith produces steadfastness. - James 1.3

All bold words are from the following post: http://www.nytimes.com/2016/02/07/magazine/when-your-baby-wont-eat.html?emc=eta1&_r=0.