Xavier's Vistit to the Eating Clinic
Greetings to everyone.
Today, Xavier visited Children's Hospital to be evaluated by a team of eating specialists. Xavier was cooperative by taking an early nap this morning, so he did not melt down during the two and a half hour examination.
We arrived at the hospital on time, checked in, then sat in the waiting area until Xavier was called. We brought with us not only Xavier, but also samples of the foods we have been feeding him, his spoons, his bottles and his formula. Mom, Dad and son played with a game table in the lobby for a while before we got called in.
Appearing at the doorway of section "G", a young woman, a nutritionist named Arinn, called us and led us a short walk down the hall into a sizable room, sizable that is for an exam room. Measuring about 10 x 20 feet, it had the typical cabinets, sink, hand sanitizer dispensers, plus a refrigerator and a microwave. At the far end of the room, much of the wall was a two way mirror with a camera mounted above the mirror. A low-standing five foot, table was near the mirrored wall, large 18 inch by 18 inch blocks were stacked against the right-hand wall. (it reminded me of Escape From the Planet of the Apes, where blocks were put into the cage with Doctors Cornelius, Zira and Milo. The idea being to test if they chimpanzees could solve getting to the banana hanging from the top of the cage)
Over the course of the next two hours, Xavier met with five specialists: a nutritionist, a speech specialist and an occupational therapist, a pediatric dentist and a pediatric developmental geneticist.
These entered the room in groups of one or two to interact with Xavier while the rest observed from the other side of the two-way mirror. After the nutritionist interviewed us, she asked us to go through a typical feeding with Xavier. Then she left us alone to feed our little man while she and the rest watched from the other side of the wall.
Xavier, always the peacock around new people, especially girls, behaved better than we wanted. After a while, he began to act as he does at home; we hoped the doctors had paid attention to the end.
Next, two new doctors, Kim and Rhonda, the occupational and speech therapists, came in. They set up a mat and spread out toys for Xavier to play with. As Xavier proceeded to scatter toys across the mat, they watched, made notes and asked Rebecca and me questions.
The next pair to see Xavier were Doctors Wong and Pickler, the dentist and developmental geneticist. Dr. Wong examined Xavier's mouth and teeth. He gave us advice about brushing--some stuff we never would have thought about, then gave Xavier a toothbrush. After that, he gave Rebecca a list of pediatric dentists for us to check out. Apart from that, he noted two things:
- Though Xavier's two teeth have not come in enough to be fully sure, still he thought his teeth may be on the "soft" side. This is due to Xavier's IUGR (in-utero growth restriction) and not getting a sufficient amount of the nutrients he needed while his teeth were developing (which begins around week 26). There is concern that his adult teeth (which, interestingly, are developing now, which is normal) are also not getting the nutrients they need to develop in a strong and healthy manner.
- Dr. Wong (and the others) do not think Xavier's tongue tie is debilitating, and is not part of his eating problems. Though tied to some degree, it is not interfering with Xavier's eating. It may affect his speech development later, but the ligament can be clipped later if that is the case.
At the end, while Xavier played with his plethora of new toys, the five doctors consulted with Rebecca and me. We heard a lot of scary phrases and terms like "failure to thrive," "maladaptive mealtime behaviors," "delayed oral motor skills," and "delays in speech and language development." One strong trait they did tout was his "gross motor skills," which the doctors said, "are a strength for him." I am convinced, having listened to so many scary phrases, that medical professionals make up this language as a way to make their fields of study appear more important and necessary.
My opinion aside, what do these scary terms (and others I did not mention) add up to? Xavier's eating problem is "multifactorial" (see what I mean about making up terms? How hard is it to say "there are several contributing factors"?) Rebecca was relieved to hear this, strange as that may sound. It explains much about why Xavier's eating problems seemed to change on a daily basis; it couldn't be pinned down.
One of these "multifactorial" issues is acid reflux. It's common with preemies (the geneticist said she would be surprised to learn Xavier did not have reflux, because, she told us, all preemies around Xavier's delivery age have it). This is probably a big contributor to his "maladaptive mealtime behaviors". So, Xavier stays on the Zantac, only we need to give it to him in a room where he doesn't normally eat. That way, Xavier may not associate the forcing of the medication with eating, thus reinforcing a bad experience with eating.
We also have some physical and occupation therapy to do. Xavier, having had several bad eating experiences over time, has developed incorrect eating habits (maladaptive mealtime behaviors). As parents, we can do some things to help him overcome these, but he will also need some help from a PT and an OT, possibly a speech specialist.
Another contributing factor is that Xavier's senses are easily overwhelmed. It's a common preemie thing. However, we learned it's not "sensory overload" as we've been calling it, it's called overwhelmed "sensory processing." If nothing else, the doctors validated our thinking to shield Xavier from crowds and too much handling by others. Rebecca came away no longer feeling guilty about refusing to "share" Xavier with everyone who asks. It's a more significant issue than we thought.
The hardest thing to hear from the specialists was that his caloric and nutrient intake on a daily basis is about half of what he needs. He has reached a point where his daily activity (and he is an active little guy!) nearly consumes all the calories he eats in the same 24-hour period.
This observation, and specifically the remedy being considered, kicked us like a mule in the emotional gut. The work to correct his eating issues (with the PT, OT and speech therapy) will take some time, much more time than his current daily intake will allow before he starts losing weight. Were Xavier chubbier, this would not be so significant an issue; he could lose a pound or so during his "rehab" at learning to eat properly (or, medically, bring his "delayed oral motor skills" to "an age-appropriate level"). But Xavier is not chubbier.
In order to make sure Xavier gets the full amount of calories and nutrients he needs, he will likely need to have a GI tube placed in him (a minor surgery and a hospital stay). Through this, he will be fed via a drip system. This will keep him growing and nutrient and calorie sufficient while he relearns eating through his mouth.
The geneticist, who was the most dire of the doctors we spoke with today, and typically gloomy, told us she thinks Xavier may have to keep the stomach tube for a long time. I asked her what she considered to be "a long time." Her answer was two years. We will learn and know more about this in the next few weeks.
We, of course, are praying that Father will be strong on Xavier's behalf. He did not bring us this far to abandon us. We are asking that Xavier, should he need the tube, not need it for that long. We are asking he develop correct (and "age-appropriate") eating skills soon, and that his reflux is quieted.
Ending on a positive note, Xavier weighed in at 13 pounds, 2.1 ounces, a gain of 1.5 ounces in two weeks. He has grown half an inch in length in the same time and his head circumference continues to grow.