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.
A Smoothie Transition
Greetings to everyone.
Little Xavier began cutting a third tooth late yesterday; it made for an enjoyable evening for all. Rebecca escaped the timing of Xavier's most dire discomforts. With a tooth coming in, she did not want to drag him all over town shopping, but thought to give him a restful day at home. So, she went grocery shopping last night while I watched the Little Professor. Over the course of several hours, we administered one dose of infant Ibuprofen and two doses of the "common home remedy." It helped immensely. For the record, we are not sure which tooth (or teeth) are coming in, but we suspect one of his top central incisors.
Xavier was supposed to meet with his occupational therapist this morning. However, Neve, since meeting Xavier a couple weeks ago, has taken another job. DDRC (the group who manages our therapists) is working to find another OT for Xavier.
The loss of one OT did not seem to hinder Father, however. Last Friday afternoon, Rebecca got into a conversation with a woman who is (you guessed it) an occupational therapist. Though not trained with the specifics of preemies, she did have much to say about the topic. We were able to apply some of her advice over the weekend. Though the timing may be coincidental, we did see some changes for the better.
Al, the OT whom Rebecca spoke with, told us (in some cases reminded us) of some things unique to preemies. The most interesting (and germane) one being that most preemies struggle with learning to swallow. Neve suggested Xavier's difficulty in swallowing may be due to his tongue tie; however, Al took it further than that. With or without the tongue tie, it is still a common preemie issue. With Dr. Abbey's concerns about Xavier's lack of aggressive eating still echoing in Rebecca's ears, Rebecca took some of what Al explained and put it work.
One of the things common to preemies is that they don't care for pureed foods. They prefer more solid food. So, Saturday morning, Rebecca created for Xavier a blueberry, avocado and strawberry smoothie with his formula (Dr. Abbey told us to start feeding Xavier mayonnaise, tuna, ranch dressing, avocado, fish oil--all high-fat foods to help Xavier get what he needs for this stage of his development). The smoothie was thicker than his normal formula, so we had to modify a nipple to accommodate it.
At first, Xavier didn't know what to make of it, but with some persistence on Rebecca's part, he took an entire bottle (4 oz)! Sunday, Rebecca concocted a peanut butter and banana smoothie, which Xavier really liked. Another 4 oz, and he drank it with gusto! Shortly after, he wanted more to eat, so he took about 2 oz straight formula. (Part of this hunger may be his tooth coming in. We learned with his last two teeth to be very careful not to over-feed him. In his discomfort, Xavier eats without control. We think grinding on the nipple helps soothe his pain. If we let him over-eat, he blows everything back up--and I do mean blow. It's a change of clothing and bath for everyone).
Late Saturday morning we stopped at Wendy's for a bite to eat (we had a two hour road trip ahead of us; we were peckish and Xavier was on the verge of hunger). While Rebecca and I ate, we gave Xavier a french fry to "gum" on (something previous to Wednesday's visit with Dr. Abbey and Friday's enlightenment with Al, we would not have done). The little man liked the fry, and noshed it into swallow-able chunks and swallowed them.
Another thing common to preemies Al told us is they get overstimulated very easily. Rebecca and I knew this from the NICU, but we had grown a little lax about it with Xavier. We were reminded once again a few weeks back while at a party where we let many adults and many children handle and play with Xavier. It was way too much for him, and we all paid for it the next few days. It was after that party Rebecca and I decided to be more careful with him. Al's information was useful, and has helped encourage us in our decision to guard Xavier more closely where crowds are concerned.
We have an appointment with a team of eating specialists at Children's Hospital next week. Xavier will be examined by a PT, an OT, a nutritionist and a speech therapist. (Al also mentioned speech can be a problem with preemies. It's amazing how many issues with the tongue preemies seem to have, tongue-tie not with standing). Encouraged by Xavier's eating of smoothies this weekend, Rebecca has set a goal for Xavier to gain half a pound before meeting with the team next week. I find her goal-setting amusing. She gets on my case for setting goals for Xavier, saying I'm going to give him a complex. Now she is setting similar goals!
Goals are great, and Great is our God and Father, Who does for us more than we ask or imagine! Father has not brought us this far to abandon us. With His hand upon us, this goal can easily be made. I expect to learn some very good news next week.
Xavier's One-Year Checkup
Greetings to everyone.
Yesterday began Xavier's second year outside the womb, and what a year that first one was! Today, Xavier visited Dr. Abbey for his one-year exam.
Xavier is doing very well. His heart, lungs, ears, throat, hips, genitals, feet, developmental and motor skills are all where expected, with one notable exception: Xavier's slow growth and his not eating the amounts he should be eating.
He weighed in today at 13 pounds 0.6 ounces. That was not what we expected to see. Just last Friday, when we took him in to have him checked because he was vomiting up all his food for the past week, he weighed in at 13 pounds and 4.4 ounces. In four days he dropped 3.8 ounces. (True, it was a different scale today than Friday, but I was assured the variance between the scales in the doctor's office is 0.2 ounces at the most).
Dr. Abbey asked if we had been using the electric toothbrush technique he recommended a few months ago. We have not. The point of the electric toothbrush is to desensitize the oral nerves (The vibrations of the electric toothbrush is the motion that will desensitize Xavier's mouth). Dr. Abbey thinks his mouth is overly sensitive and that is why Xavier resists his bottle as he does. Also, now that Xavier has teeth, we need to step up and brush them anyway (at least adult toothpaste can be used we learned).
So, it's a trip to Walgreens, Walmart or Target to get a simple electric brush. We need to pick up a temporal thermometer anyway.
Dr. Abbey is also going to call Children's and "put a fire under them" to get Xavier into the eating treatment program. Rebecca called last week to get in (Dr. Abbey wrote us a prescription in February for the class and our insurance has approved it). It takes 4 to 6 weeks to get scheduled in. Dr. Abbey thinks he can pull some strings and get Xavier in sooner.
The concern Dr. Abbey has about Xavier's slow intake of food is the development of his brain. It is in a crucial state of development now and through about two years of age. His brain needs the nutrients in the food he is not eating. It was a little scary this morning to hear this. Many learning disorders are often traced back to this time in the brain's development. They begin at this stage of development, but the effects are diagnosed years later. So, we are asking Father to guide us and Xavier and to heal whatever it is that makes him so fussy at eating.
The eating discussion segued nicely into the tongue-tied discussion. Dr. Abbey had forgotten he noted this condition last year and thanked us for reminding him. With the assistance of Sam (short for Samantha), a young PA making the rounds with him today, they managed (after retrieving a specialized tool; Xavier proved too squirmy for a simple tongue depressor) to examine the ligament.
Xavier's lingual frenulum ligament (the ligament tying his tongue) is vascular, carrying blood. Dr. Abbey was not able to snip this kind of ligament, and it will require an oral surgeon who can cauterize the cut. Had it not been vascular, Dr. Abbey would have clipped the ligament this morning. "Let's take care of that now," he said, before learning the vascular nature of the ligament.
Xavier also got four more shots today, two of them being new: measles, mumps and rubella, and hepatitis A. Not only did he get four pokes (two in each thigh), he had to endure pink camouflage bandaids.
Here are his stats:
- Weight
- 13 pounds 0.6 ounces. Up about a pound from his 9 month weigh-in
- Length
- 25.5 inches. Up an inch and a quarter from his 9 month length in February
- Head Circumference
- 17.25 inches. This is about an eighth inch larger than at 9 months
Xavier Turns One!
Happy Birthday, Xavier! And greetings to everyone.
We did not do much to celebrate Xavier's birthday today; we did that Sunday. We did, however, pray and thank Father for all He has brought Xavier through this past year, and for His goodness in our lives.
Even though it's his birthday, Xavier has been having a bit of a rough day. He might be cutting a third tooth. His two bottom central incisors (which also might be bothering him), are coming in nicely; they can clearly be seen when his tongue is not covering them.
We opened Aunt Kathy's present over the phone instead of Skype (Skype technical difficulties); she sent Xavier a musical (thanks a lot, Kathy!) animal puzzle. Xavier dove right in; all the animals passed the taste test. Grandma Penny's and Grandpa Dave's present is still rattling around UPS somewhere. Looks like an extended week of celebration.
As mentioned in a previous posting, Rebecca had Whole Foods bake a cake for Xavier. About six inches in diameter, it seemed the right size for Xavier. We originally thought about using a cupcake, but we thought this more fun. As it turned out, the cake was not at all tasty; in fact, it was down-right off-putting. The taste of the frosting hinted at stale mustard, and not a good kind of mustard. The cake itself may have been flavored with ground cardboard and chalk. Even Xavier made faces at the taste, especially the frosting. However, none of that is the point. The point was "The Mess"
Dressed only in a diaper and having no idea what is going on, nor why his mother, grandmother and aunt all close in with cameras, nor why Lena the Dalmatian is not being expelled from the kitchen, Xavier waits. A cluster of adults huddle together at the counter across from him, doing what he cannot guess at.
At last, the candle in the form of a numeral one is lit and the cake is presented. Slowly at first, as though not really interested, Xavier explores the cake. After tasting the unpleasant frosting, it looks like he might be wholly put off. Then, a second wind! Pastry Storm Xavier looks like a category 4. As Mom presented the cake, Grandma stepped in to get a close-up shot just as the photographer snapped the main picture. Chellie aims her camera and Lena waits for the cake to hit the floor (the Dalmatian wonders why there are large plastic bags under the highchair; she is, after all, the official floor cleaner where Xavier is concerned)
The frosting may taste like stale, sour mustard, but still it has sugar and butter! Also, how else does one clean their hands?
Giving his benediction, Xavier thanks everyone for the cake and all the attention, not to mention the buzz stirring within him. We're certain it was not the two bees from the cake.
It snowed all day Sunday, so we weren't able to use the hose to clean him up (just kidding). Charged with a sugar rush, it's off to the bath. Rebecca carried him in after putting on an apron. The waters ran yellow, and after a good scrubbing and his splashing around a while, the towel he dried off with still came away with yellow stains.
Happy Mothers' Day
Greetings to everyone, and Happy Mothers' Day to all the moms!
This time of May is a convergence of birthdays and Mothers' Day. Of course, Xavier's birthday is numbered among the birthdays, but both his aunts have birthdays near his.
In the neighborhood this weekend, Penny, Rebecca's mother and Xavier's grandmother, flew in to celebrate Xavier's first year out of the womb. Chellie, Rebecca's sister, drove down from Fort Collins to join in the celebration. It was somewhat sad that Kathy, Xavier's other aunt, was not able to join us; however, she did join us for Christmas and again in February.
Since we had so much to celebrate, we broke it across two days. We celebrated the the two moms and Chellie's birthday Saturday by attending Cirque du Soleil's Varekai then dinner afterward. Xavier entertained a babysitter while we enjoyed ourselves on the northern side of town.
Sunday was all about Xavier, and he knew it! Penny and Chellie went out to pick up some last minute items. Dad had already decorated several rooms with helium-filled balloons the day before (Xavier likes balloons). Penny had shipped her gifts ahead of her, but the UPS Store shipped it to the wrong address: to our former Fort Collins address to be exact. As I type, the package is still in transit, but we hope to get it soon. Xavier scored clothes from Aunt Chellie, and his new "throne" from Grandma. Aunt Kathy shipped her gifts to Xavier in time to arrive on the 13th.
Of course, the tradition of giving a one-year old his first birthday cake was observed. Rebecca had Whole Foods make Xavier a little cake in the shape of a classical bee hive. With a single candle burning, the cake was presented to Xavier, who sat not in his throne, but in his high chair. Clothed in only a diaper, he did not really know what to do, nor was he sure about doing anything at all. In the end, he was sufficiently covered in frosting. I will post his cake pictures Tuesday, his official birthday date.
We live about 2 miles from a European bakery which is too good with their, well, everything they bake. The owner makes cakes; you tell him the general details and he will fill in the rest. Never the same cake twice. Rebecca ordered a cake for her mom and Chellie, a layered, jelly-filled, marzipan-wrapped cake of chocolaty goodness. The three ladies of honor choose their territory to carve out.
Xavier sits on his new throne, which Grandma Pennty bought him. Already, the power has gone to Xavier's head as he holds court.
Xavier, after pulling the tissue paper from the bag, checks the tag to see if his new shirts will fit him (they do, or rather, they will soon).
Tongue Tied?
Greetings to everyone!
Today, Xavier transitioned from physical therapist to occupational therapist. To help with the transition, both therapists met with him, spending about an hour with Xavier. The reason for the transition is to see if an occupational therapist can get Xavier to eat better, and to be happy about it. Rebecca managed Xavier's eating schedule this morning so he would be hungry when the therapists arrived. The intent was to let the OT observe how he eats.
Xavier, for his part, was in rare form. Rebecca said she has never seen him so excited. Apparently, he was a shameless flirt, smiling and racing around putting on a show for the two ladies.
The occupational therapist's name is Neve. Interestingly, Neve is the same therapist who worked with Xavier last summer, while he was still on oxygen. At that time, we were still deciding between PT and OT. We had Xavier home from the NICU a week or two when Rebecca and Xavier first met Neve. At that time, she thought Rebecca was detached from Xavier. That statement did not set well with Rebecca, and it haunted her for months afterward. The re-introductions today ended on a more positive note.
Neve thinks Xavier's lackluster eating habits may be due to a fairly rare condition. She used a phrase which perfectly describes how Xavier manages food offered to him, be it by bottle, spoon or finger: he "guards his mouth." Her more lengthy analysis wholly encompasses everything we've noted about Xavier's eating behaviors, as well as some other behaviors we have observed with some concern.
One of the observations Neve made was that Xavier should be sticking his tongue out further than he does. When he does "stick his tongue out," it never comes out passed his bottom lip, and his bottom lip pulls backward in toward his mouth. At Xavier's first meeting with Dr. Abbey, he also noted the same condition Neve diagnosed. He stated it as a passing comment and did not appear concerned, so we thought little more about it.
Xavier has Ankyloglossia. He is tongue-tied. This explains why he does not eat as much as he should be eating. It limits Xavier's ability to manipulate food in his mouth and to work it back where he can comfortably swallow. It also makes sucking on a bottle more difficult for similar reasons. It also is and will interfere with his ability to learn and practice speech.
Neve told us to discuss this with Dr. Abbey next week at Xavier's 1-year checkup. The correction is straightforward, requiring the skills of a dentist. Basically, it involves a minor surgery in cutting back the lingual frenulum to loose the tongue. We will know more about this next Wednesday.
If this turns out to be the case, it's amazing how simple a thing affects so much. Here we had Xavier seeing liver specialists and gastroenterology specialists to solve his slow growth and refusal to eat doctor-prescribed amounts of food. The whole problem may come down to Xavier's little tongue not having the freedom it needs.
Changing to an occupational therapist may well be Father's hand once more guiding us through the adventure of parenting Xavier!