Why we went to Gastroenterology and What’s the Plan

After my post on Thursday, I think it’s pretty safe to guess that you all know that we went to Gastroenterology (GI) last week.  I typically process things more before I just throw them out into the internet to be always available.  However, I’m okay with everything what I wrote Thursday and I slept quite soundly after getting it off my chest.

Today, I do want to share a bit more about why we went and what our plan is, because it seems that many of us have similar “sensitive tummy” issues with our former preemies.  I put “sensitive tummy” in quotes, because that’s often the nice way to say it, but for the families dealing with it, it’s much more than a sour tummy every once in a while.  GI issues are a huge struggle for many preemie families.

GI Issues in Preemies:  Some of the non-preemie readers might be asking why that is, and the non-doctor answer is digestion develops late in gestation.  Kellen’s 10 days in the hospital were mostly due to digestion.  He knew how to eat (suck, swallow, breath), but his stomach and intestines didn’t know what to do with it yet.  The food just pooled in his stomach and turned foul (it was removed via his nasal feeding tube).

Another problem that is prevalent in preemies is reflux.  If you walk into a feeder grower unit in a NICU, you will see almost all of the babies swaddled into their bed at an incline because keeping the head up can help reduce reflux.  It seems that nearly all of the preemies that I’ve gotten to know have had reflux treated with Prevacid, Reglan or some other alternative.  Reflux is painful for the babies and often makes them fussy.  Also it often inhibits their desire to eat.  In some cases, like Owen, reflux can be silent (doesn’t come all the way up) and they aspirate on it, causing dangerous damage to the lungs.

The digestion process not being mature enough is also one of the leading causes of death and long-term disabilities in premature infants.  In many of these cases, the bowels become inflamed to the point that the tissue dies (Necrotizing Entercolitis – NEC) .  When that happens, the intestines can perforate leading to intestinal fluids filling the body with infection requiring immediate and high risk surgery.  Those that survive the surgery and the days following it, are at greater risk for Short Bowel Syndrome (not enough bowel to properly digest food) or, like Owen, neuro (brain) development issues.

Owen’s GI History:  Owen has had very significant GI issues.  As I understand it, he didn’t actually have NEC,  There wasn’t dead tissue, but there were several perforations in the top part (jejunum) of his small intestine.  When they went in for surgery, they also discovered that Owen’s small intestine was not connected to his large intestine (Ileal Atresia).  It’s unknown if this was a deformity Owen had from birth, or it was caused by the virus that attacked his intestines.  Most of the perforations were sewn up, however, a few were bigger and so the surgeon had to cut out a few small sections of bowel.  Seven weeks later, Owen went back into surgery to have his bowels reattached.

After Owen started making bowel movements, he begin getting breast milk feedings.  It started at something like 1 mL an hour and slowly moved up.  At first, Owen exceeded everyone’s expectations and he was able to increase his volume daily.  However, he reached a point, where he could not take an increase for several days.  Interestingly, this change occurred at the same time that my breast milk ran out and he was switched to formula.  At the same time, Owen developed severe reflux, a raw bottom and a reputation of being high maintenance.

Eventually, Owen stopped breathing and dropped his heart rate two days in a row with feedings.  I was there for both.  I demanded that they stop feeding him until a solution was determined.  He was switched back to donor breast milk and his feeding tube was moved down past his stomach into his jejunum to help make reflux less severe.  We slowly ramped up on his breast milk volume (with me deciding when and by how much) and waited until his lungs had recovered enough to do a Nissen surgery to more permanently prevent reflux and to give Owen his g-tube.  The surgery did wonders for Owen, he came home from the NICU 3 weeks later, at six months old.

Compared to the issues in the NICU, his GI issues were relatively under control for the next year.  Whenever we were admitted to the hospital the nutritionist would want to increase his feedings and then we had issues with dumping (yes, that is a medical term) where Owen would barely process his food and send it out the other end in liquid form (sorry if you’re eating lunch).  I got good at managing how much he could tolerate at a time and the doctors allowed me to control how much we changed, as long as I was willing to keep inching towards the nutritionists targets.  When dumping wasn’t an issue, Owen struggled with constipation in that he cried every time he pooped, however, he pooped daily and was very sensitive to miralax or pear juice being causing diarrhea, so we just kind of lived with it.  He was growing well and happy except for his 1-2 poops each day.  At the same time it was a careful balancing act and everyone knew that I was the supreme ruler on all things feeding.

This last fall, Owen became mobile and started eating orally at the same time.  As he at orally, I backed off on his tube feedings a little.  Not surprisingly, he lost weight.  However, being a former micro preemie, weight loss is taken very seriously, so his calories were slowly increased with the addition of Pediasure to his diet.  The NP in the NICU F/U clinic and I managed his diet increases together, but it seemed no matter how slow we went, we struggled to keep him from retching.  With her monitoring, I tried slowing down how quickly he got his foods, when he got his foods, what mixture of Pediasure and regular formula he got; we tweaked and tweaked, but couldn’t get him comfortable.  By retching, I don’t mean a little coughing.  I mean violent, eyes bugging out, body convulsions that would last several minutes at a time.  I felt like I was forcing food into him and several days made the decision to back off on how much he got because I didn’t want him retching.  As a result, we were constantly playing the “weight game”.  I knew why he wasn’t gaining weight; I wasn’t giving him all his calories because it was making him miserable.  Also, during all of this time, Owen stopped eating orally.  He went from 300-400 calories a day to nothing and it all started when we introduced the Pediasure.  I reached the point that my knowing Owen best was no longer working.  I asked for a GI referral.

GI Consult:  By the time we got into GI, I had it to the point that Owen was “only” retching once a day.  The GI doctor had never seen quite the combination or technique in giving him his food that I used, but it’s the best that we had.  And it was “working” in that his growth was looking pretty good.  Last week Owen was 22.5 lbs and a little over 32 inches.  That means he’s gained about two pounds since December.

I was relieved to hear that the doctor wants to come up with a solution that isn’t “Mom slowly tweaking”.  It shouldn’t be this difficult.

The doctor suspects that Owen has an allergy to the formula.  Even though Owen has had a blood test that didn’t indicate a milk protein allergy, he said it could still be milk that’s causing the problems.  Or, it could be some other ingredient in formula.  The problems are worse with Pediasure, but he still had severe eczema and constipation with the other formulas.  In terms of ingredients, Pediasure and Neosure, that Owen had been on previously, aren’t that different except that Pediasure is shelf stable and 30 calories per ounce and Neosure is a powder and we mixed it at 24 calories per ounce.  He suspects there may be a preservative that is causing further irritation for Owen with the Pediasure.  While it could also be the greater calories, the doctor is less inclined to believe that’s the problem because Owen had much denser calories with purees and that didn’t cause him issues.

Our Plan:  We will give Owen one month on Elecare Jr, a formula that is hypoallergenic.  He will not eat any other foods during this time.  If he improves; eczema, stooling and retching, then we will slowly add in foods.  We go back in one month to plan the next steps.  If things clear up nicely, we will hopefully avoid an endoscopy.  If there are still questions, we will probably schedule that procedure in the coming weeks.

Four days of the new formula in, Owen still has some retching but it’s less severe when he does it.  Now it’s more the cough and less the convulsions and bugged eyes.  He also has diarrhea 1-2 times a day instead of constipation.  I’m giving that another week before I call the doctor, because most kids do have stool changes with food changes.  Eczema hasn’t changed dramatically for the better or worse.

Formula Cost:  Our insurance does not cover formula, however, because Elecare Jr is very expensive, they are reviewing his case and may cover it.  If we ordered his formula through our medical equipment supplier, it would cost $1800 a month!  There are no stores in the metro that carry Elecare Jr (infant is available at select Walgreens), so I am ordering it through Amazon.com for a little more than $20 per can.  He goes through 18 cans a month!  Pediasure suddenly feels inexpensive!  For perspective, here’s a picture of the size of Elecare Jr can of formula next to a can of coke.

the size of a can of elecare Jr

Fingers crossed insurance will cover it!  More importantly, fingers crossed Owen is feeling more comfortable soon.

I know that’s a really dense post, so thanks to those that made it through.  However, I wanted to share, because I know we aren’t alone in these issues.  I’ll take advice from those ahead of us on this stuff too!

 

Feeding Disorder versus Picky Eater

A lot of people, myself included, have a really hard time understanding Owen’s feeding issues. Just before sitting down to write this post, I was catching up on Pinterest and salivating at all the delicious pictures a friend was posting. It’s hard for me to fathom that seeing food does not trigger a hunger response in Owen. Not only does the image of food not do it for him, neither do hours and hours of an empty stomach. If hunger registers in Owen’s brain, I’ve not seen him express it through a behavior change.

There are often two responses that people have regarding Owen’s eating.

  1. When he’s hungry enough, he’ll eat OR
  2. He’s just picky (or stubborn)

In fact, those two statements describe picky eaters. Picky eaters will eat take in adequate nutrition and continue to thrive while being selective with their food choices. In general, picky eaters will not tire of their favorite food choices and can learn to broaden their selections.

What Owen has is a feeding disorder. Feeding disorders, not to be confused with an eating disorder (anorexia or bulimia), is a term used to describe children who have difficulty consuming adequate nutrition by mouth. Feeding disorders can be very severe leading to failure to thrive, chronic illness and, in the most severe cases, death. Even when hungry, Children with feeding disorders may not consume enough to thrive.

According to this, often sited, 2000 paper for Journal of Clinical Gastroenterology, by Manikam, Ramasamy Ph.D.; Perman, Jay A. M.D., feeding disorders are, in fact, very prevalent As many as 25% of children have some degree of a feeding disorder. When you just count those who are developmentally delayed the number jumps to 80%!

Feeding disorders are multifaceted and often include medical, behavioral, psychological and environmental aspects. They can be found in healthy children, but the healthy cases are more likely to be temporary and environmental in nature. More frequently, and often more severely, feeding disorders are found in children with digestive disorders or those with special needs.

I really like the way this Journal of Pediatric Psychology article from 2007 breaks eating disorders into three, easy to understand categories; tube dependent, liquid dependent and food selective. Clearly as a parent who makes a conscious effort to not be stressed about Owen’s eating (or lack of), I was interested to see that, according to this study, intensive (extended in-patient, multidisciplinary treatment) has the best outcomes and the least stress for parents.

Honestly, Owen’s feeding disorder, is one of my biggest forms of stress in his care. While, I wouldn’t wish any type of disorder on him, physical and cognitive disabilities are easier for the rest of the world to accept. Eating and enjoying food is often the backbone of culture. I want for my son to be able to participate in his environment with food, and I do believe he can and will. However, getting there is really frustrating – especially when you add in his wheat, egg and peanut allergies. I basically am throwing darts blind folded looking for foods he will eat and then when we find one, he eats only that for a while and then gets sick of it, or starts teething or has some other disruption and then we start all over. It is costly and is very, very time-consuming and in reality, all the work may just be a band-aid to get us to the point when he’s ready for an inpatient program.

So, please, when you look at Owen, don’t think he’s being picky or stubborn. While not a perfect comparison, nobody would ever say Owen is still on oxygen because he’s too stubborn to breathe without support. We all understand that his multiple lung and airway disorders are working together making it difficult for him to fully wean from oxygen. His eating is similar, this is a medical disorder that involves many facets of his development. Just like he will one day be off oxygen, I know he’ll one day be done with his feeding tube. But it does take time. Sometimes seemingly excruciating amounts of time.

In the meantime, we keep working on it. Here he is checking out a strawberry, with a little apprehension.

Click to Pin on Pinterest

Click to Pin on Pinterest

Forward Progress Only, Please

Maybe we jinxed ourselves by being part of a news report on how good he was doing?

Maybe it’s teething?  It’s true, teething can cause regression in other development areas.

Maybe, as was suggested by his doctor today, it’s because of all the gross motor development he’s been doing?

Maybe he was getting bored with the limited varieties of food his allergies allow him to eat.

Maybe he’s not as hungry after we went up on his formula calories?

I don’t know, what’s caused it, but I’m guessing you have already figured out Owen’s not doing so well with eating lately.  Actually, it’s pretty much been since Thanksgiving.  He was orally eating 300-400 calories a day, but now, he’s getting 50-70 on a good day.

We still sit three times a day, but most days he only eats one of the three.  I keep repeating to him (and myself) “I will not give up.  I will not give up.  I will not give up.”

We keep trying new foods.  Pickles, watermelon, apples dipped in caramel, carrots dipped in ranch dressing (allergy note, most ranch dressing brands have eggs), beef jerky, fruit leather.  He even gets Noosa Yoghurt where the frivolous use of the ‘h’ stands for “heck of a lot of money”.  That ‘h’ may also stand for “holy smokes, this is delicious”.  Of the luxury yogHurt, Owen will take a few bites of it, but it’s still not large amounts.

I try to keep focusing on the fact that he is still leaps and bounds ahead of where he was this summer when he wouldn’t swallow.  If I can get the spoon in his mouth before he slaps my hand away, he does swallow it.  He’s continuing to sample new textures and flavors, even if he’s not eating, he does explore foods most of the times that we sit to eat.  Also, each session at the table is great for his fine and gross motor skills.  He’s starting to throw food (not one of my favorite milestones), he’s really got that gravity concept and pincer grasp down.  He pinches food with his thumb and index finger and releases it to the floor with a smile (some milestones are much more exciting to this mom than others) and he’s communicating wonderfully when I say, “Owen do you want to eat?” and he shakes his head emphatically “no” (excuse the mellow drama, but… “just stab me in the heart, Owen”).

Just behind, “I will not give up.  I will not give up.  I will not give up” is “Thank God for g-tubes, Thank God for g-tubes, Thank God for g-tubes”.

I’d been warned by many that this would likely happen several times in his learning to eat.  I do realize that learning is not linear.  I can rationalize it to death.

Truth is, going backwards stinks.  But Owen won’t hear it from me.  “I will not give up.  I will not give up.  I will not give up…..”

Owen’s TV Debut

I hope everyone is feeling full and content from a wonderful Thanksgiving! I know I said I wouldn’t post today, but we had a visit from WCCO reporter Rachel Slavik and cameraman, Joe to do a story on Owen’s first time enjoying a Thanksgiving meal. Thought you’d love to see a little slice of our day in this newsclip.

Also, thank you, Cate and Rita at Gillette Children’s Specialty Healthcare for taking an interest in Owen and helping spread his story.

Here’s a (very grainy) picture of Owen watching himself on TV.

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