Hello to everyone!

Xavier had an interesting weekend. Mom and Dad had the opportunity to attend a conference in the Denver Tech Center. The conference began Friday night and we had our hotel room paid for through Sunday. It was something both Rebecca and I have been looking forward to for several weeks. At first, we thought we would bring Xavier with us; we even arranged a crib for the room. However, as the weekend approached, we did not think Xavier would tolerate the event well.

Xavier's Aunt Chellie eagerly agreed to watch Xavier for the weekend. It has been nearly a year since we have spent a weekend away from Xavier. The last time was over the Fourth of July and he was still in the NICU. We spent that weekend packing up the Northern Outpost in Fort Collins. It was interesting and a little strange turning over the reins to Chellie.

Chellie arrived late, the traffic from Ft. Collins into Denver on a Friday afternoon is often horrid. We put Xavier down for the night before Chellie arrived. We left for the conference and Xavier woke up to find Aunt Chellie. He protested the swap out for about two hours, but after that he settled in.

The conference and the time away were desperately needed by both Rebecca and me. Rebecca and I had a few days to ourselves, something we have not had it a very long time. The weekend refreshed us, and Xavier did well under Aunt Chellie's aegis.

We returned home and Chellie left soon after. It was unfortunate, but Aunt Chellie somehow caught the same stomach flu crud Rebecca and I had the prior weekend. Still, a good time was had by all, and under Aunt Chellie's watch, Xavier set his new ounces per day record of 23 ounces.

Xavier has learned all too well how to open up the kitchen cabinets, even the Lazy Susan cupboard as seen here. He has recently started pulling things out of the cupboards and litter the kitchen floor with his new-found toys. It's also interesting when trying to load the dishwasher. Xavier climbs into the washer and pulls out the dishes being put in.

Greetings to everyone. Thank you all for your prayers.

We were able to bring Xavier to church for prayer last week. He had hands laid on him and he was anointed with oil, and prayed over. For me, that was a huge deal (you all know what a believer I am in prayer!), and it helped clam me and allowed me to gain focus. Rebecca was also inspired by it (she pressed me to get Xavier in for prayer as soon as we could). We tried to get Xavier to church sooner for prayer, but for various reasons couldn't until last Wednesday.

In the same timing, we got a referral for the first surgery. This is the surgery to insert the nasal feeding tube which bypasses Xavier's stomach and empties directly into his intestine. The doctors had also scheduled a liver biopsy, and to do the Nissan Procedure plus a series of other labs. Their thinking was, since we are already in there putting in the tube, why not get everything else.

Though we kept the referral, we told the doctors we were not going to put Xavier through this. We made it clear the Nissan Procedure was simply not going to happen, no matter what else needed to be done. Both the NG tube and the sewing of Xavier's upper stomach to his esophagus is filled with more risk than benefit. We've been doing a lot of research, and we've been observing Xavier through more educated eyes. We strongly believe the doctors have not correctly diagnosed Xavier's issues, so we are not going to allow any surgeries without significant proof of the doctors' diagnoses. There are still many, many unanswered questions for which the doctors are still silent in providing answers. What they are currently suggestion will do more harm than good, both Rebecca and I strongly think this.

Since the feeding clinic experience, we have been watching Xavier's intake very closely. In the last 14 days he has averaged about 600 calories per day, with a general trend upward and peaking at nearly 700. Just at his peaked, he got his first chest cold, which dropped his numbers back into the mid 500's the last few days. Coincidental with his cold, he cut at least one new tooth (his left upper outer incisor), so this also worked against his eating.

One of the questions (a big one we think) that needs answered is what, precisely, are the amounts Xavier needs to be eating on a daily basis. The people from the eating clinic suggested 36 ounces a day. We've run the numbers and that amount is huge! It's far beyond Xavier's capacity to hold that amount. This led to another question: if 36 ounces per day, what are they basing that amount on? A 20 pound one-year old? From our research (which we validated across several medical and government sites), it appears Xavier should be eating in the range of 760-830 calories a day. That works out to about 28 ounces a day, a far more reasonable amount for Xavier's size. Needless to write, this significant discrepancy have sent us back to the doctors for clarification, and an explanation on what they are basing their numbers on.

Through all of this, it looks like Xavier is once more taking to the bottle in a favorable way. We have had several times when he has eaten 4 oz at one time and kept it down. That, by the way, if not a miracle, is certainly something stupendous! We have not seen Xavier take 4 oz at one time in the last couple of months. We have been working with him to take increasingly larger amounts at one feeding. Our first issue is to get his stomach used to the larger amounts. Being off his feeding has let it atrophy, so it is not used to such large amounts.

We have had a couple of "divine appointments" as well. We have met several people in the last two weeks who have given us very useful information and understanding. One of the men who prayed over Xavier last week had a preemie who went through similar issues. We agreed to get together with him to learn from his experiences.

We also had a significant breakthrough that, until Xavier's cold and new tooth this past week, was getting Xavier to eat more and more every day. It was a simple thing, one we learned from a lady who runs a daycare. She got Xavier to eat 3 oz in one sitting, plus she got him to eat from a spoon with 8 confirmed swallows! We tried her bottle-feeding technique and from our first feeding using this technique, his intake increased at least 3/4 an ounce per feeding, more as the week went on. What was the technique? We swaddle Xavier! We never would have thought of this, he hates being swaddled. But, it works.

Another meeting we had was "out of the blue" in many ways. It led us to do some more research into what the doctors are telling us and added heavily to the list of questions we need the doctors to answer before we proceed with any GI tube. The benefits of the feeding tube may be overwhelmed by the problems brought on by the tube. In fact, the GI tube is likely to make things notably worse.

We are praying that

1. Xavier eat well and enough and consistently (consistently seems to be one of the real keys here); we want the diagnosis of "failure to thrive" overturned!
2. Continued wisdom and insight for us, Xavier's parents, so we make the best choices for him
3. For wisdom with the doctors and for the doctors

One of the Scriptures I've taken to speaking over Xavier every time he coughs is "By His stripes, you are healed" (Isa 53:5/1Pet 2:24).

Always, we thank you for your prayers and support. Great is our God and Father, and mighty is our Lord, Who has healed us!

Greetings, and hello to everyone.

This weekend was nearly a perfect storm for the Ogden household. It began Friday night, shortly after dinner. Dad's stomach became queasy. A few hours later, Mom's tummy became queasy. Xavier, well he had been feeling off since Thursday; he even "zeroed" his counter Friday, leaving behind a run of eight puke-free days.

Early Saturday morning Dad was motivated to find the bathroom! It's been years since I've vomited, so I guess I zeroed my counter as well. Some hours later, Rebecca grew to feel so miserable, she wanted desperately to zero her counter.

Both Rebecca and I were wiped, and could barely get off the couch. We ended up sleeping most of the day. When both parents are down that hard at the same time, it makes childcare an extreme challenge. It was actually a blessing in disguise that Xavier was ill with the rest of us. He slept most of the time also, so he did not need much looking after.

Sunday afternoon we all were feeling better. Rebecca and Xavier wanted to take Dad out to lunch, and thought the Denver Aquarium would be fun. She had already made reservations to get a table near the aquarium wall so Xavier could enjoy the fish. It was a pleasant outing, though we kept our choices of meals light as our stomachs were still not ready for business as usual.

We sat next to a couple also celebrating Father's Day; they had their nine-month old with them. We struck up a conversation, and swapped many first-time parenting tales. Xavier was more interested in his new friend, Johan, than the fish in front of him.

These disposable plastic place mats are wonderful. However, as Xavier demonstrates, to be fully effective, you have to tack down the bottom as well as both sides.

Still more interested in the place mat than the fish, Xavier is unaware a ray stocks him

Sensing something was amiss, Xavier turns to see the ray. Good thing the glass was there, or Xavier might have had to wrestle the stealthy creature.

Dad and Xavier pose for a picture with the Aquarium's mascot, inventively named Sharkey the Shark.

Greetings to everyone, and much thanks for your prayers!

For the last several months, Rebecca has had a nagging desire to check out a little daycare and preschool not too far from us. It's out of the way of main traffic, and unless you know it was there, you might easily miss it. For us, it is very much out of our normal traffic patterns. Still, it caught Rebecca's eye, as did the ever-present background desire to pay it a visit.

Due to the many things pressing up against her, several of these having been building for months, Rebecca has come to her very frayed wit's end. On Wednesday, Rebecca finally decided to follow through with the leading to visit the daycare, hoping it might be a solution to some of her pressures.

After visiting them for an hour or so, and touring the facilities, she enrolled Xavier for four-hour blocks of time two days a week through the month of June. A place in the daycare for infants 6 through 18 months had just opened, the opening lasting through the end of June. The owner of the daycare sensed Rebecca's stress level and bent over backward help out, including waiving several fees.

Saddled with a modest amount of enrollment paperwork, Rebecca headed home. She called me to let me know the situation. I was not too enthusiastic about daycare, for O so many defensible reasons! However, Rebecca provided three strong points which swayed me to at least give it a try.

So, today, we delivered Xavier to his first four hours in daycare. I went along to check out the place and to meet with the staff. I was impressed, and it is not easy to impress me. Openly Christian, they pray over the children and over specific needs as requested. They have a nearly one-to-one adult to child ratio in the 6 to 18 month area. They work with all manner of therapists and take on special-needs children (one of the infants there now is blind). The workers varied in age, but were all lively and full of joy--they loved caring for babies.

So, how did Xavier do? He loved it! He played well with the others his age; he slept peacefully in his crib; he stole the hearts of the ladies watching him (and he stole a graham cracker from one of his playmates). But that is not the most exciting news.

Xavier drank three ounces of formula while there, all in one sitting! That is nearly unheard of. Maybe once or twice a week we get him to drink two and a half ounces, shortly after which he vomits it all back out. He drank three ounces and kept it down, but that is not as exciting as what else he did.

They got Xavier to eat and swallow eight bites of a pureed food fed by spoon! He had a lot more go into his mouth, but only eight confirmed swallows.

Of course, Rebecca asked to know what they did to achieve these miracles. To get Xavier to drink without so much fussing, they swaddled him, waited for him to calm down, then fed him his bottle. He drained it. Rebecca and I have tried this at home, and it works every time! Though we have yet to get him to drink a full 3 ounces in one sitting, his intake is up one half to three-quarters of an ounce every time. We never would have thought of this; Xavier hates being swaddled, even in the NICU he hated it. We stopped the practice shortly after bring him home because he wouldn't go to sleep swaddled; he would cry and wail and scream until released.

The spoon feeding technique was nearly as simple. They gave Xavier a spoon to play with and another worker got him to smile and laugh. When Xavier put his spoon into his mouth, the other worker (who had another spoon loaded up and ready) moved in and swiped a glob of puree on his gums. In a few seconds, after recovering from the surprise of someone sneaking food into his mouth, Xavier moved the food around and swallowed (in some cases he let it leak back out his mouth). Again, Rebecca and I put this more complicated plan into practice. Though we have not had as successful results as 8 swallows, we have had successful swallows. And, Xavier actually enjoys the experience. Glory to God!

Xavier is still shy of his daily intake by a significant amount, but now we have greater hope we have some ways to close the gap, though it is not likely to happen overnight. We have been tracking Xavier's daily intake, which is as disheartening as it is motivating. But with what we have witnessed today, we are encouraged, even re-invigorated!

Using what we learned today, and what other techniques await to impress us, we are working Xavier up from his 15 ounces (on a good day) to a sustained 20 ounces a day. Then, from 20, to 21; from 21 to 22, and up to 30. We are still using the Neocate along with the Neosure Formula, and Rebecca is mixing into his solid foods a high-fat supplement called Duocal. In time, a short time we hope, we want to build Xavier's stomach back up to being able to hold more than four ounces at a time (now, he can safely hold about three ounces).

For Xavier's part, he has two daily goals:

1. Make a sustained 20 ounces per day (for now) intake of formula
2. No "zeroings" (We have a sign which reads : X puke-free days. Every day he goes without vomiting something up, the number increases. If he vomits, the counter is set to zero, thus "zeroing" it)

There is definitely a thinking gap between medical professionals and the down-to-earth child care-givers, that much was made clear. I am glad for the medical side, but it was refreshing to have such pragmatic simplicity balance it out. We learned more practicality and success in feeding Xavier today than we did from the feeding clinic!

We look forward to what next week will teach us in getting Xavier back on track with his eating habits and desires. It pays to heed that still-small voice which nudges you into doing something.

Greetings to everyone!

Today we met with Dr. Bealer at Children's Hospital. Dr. Bealer is a GI specialist, and the consultation was to discuss Xavier's GI tube surgery.

As mentioned in an earlier post, Xavier's daily caloric and nutrient intake is (at best) half of what it needs to be. He is at a critical stage of development when his developing body is in great need for the nutrients and calories vital for structures which will come into play years from now. Just to name a few of these: brain wiring for various learning and cognitive abilities used later in life; his adult teeth, which are now collecting the materials they need to develop strong and healthy; his bones needing to maintain their density and strength. His body requires a steady flow of many nutrients over the next couple of years at least.

This has been Xavier's problem from very early in the womb, where he was nutrient-deprived due to the way the placenta failed to attach to the uterine wall completely. He has brought this problem out of the womb with him somehow. We know his body adapted, rather remarkably, inside the womb to manage the scarce resources. Perhaps his body his body has not learned to readjust to the more plentiful resources available to him now that he is outside the womb.

One thing is clear: Xavier has reached a very critical stage in his growth and development, and this problem which has plagued him so long is now his greatest enemy. It is also clear from the past two weeks of visits with many different doctors and specialists, that they (the medical professionals) have no idea what is at the root of this problem.

Dr. Bealer did a cursory physical exam of Xavier, and he had the opportunity to watch Xavier eat as he spoke with us. He walked us through the process, starting with a brief history of the GI tube, which has been around and effective since the Civil War. I think this fact calmed us somewhat about the GI tube surgery.

We discussed three possible surgeries, and we should know the way of it within a week (there is a discussion that needs to take place between several doctors and specialists before decisions are made).

1. A simple surgery to install a NG tube (small tube through the nose to the gut). Though passing through the stomach, its interior end would feed directly into the small intestine. This is a temporary placement, the purpose of this tube is to build Xavier up with enough nutrition (through a special formula supplied through the tube) to heal properly from the next one or two surgeries.
2. The surgery of the feeding tube. This type of surgery is very straightforward as it dates back to the 1860's. The doctor's language surrounding the use of the tube indicated he expected a longer than two month time frame; he, I think, believes the tube will be there much longer.
3. The third surgery, one which Rebecca and I are wholly opposed to unless absolute proof can be produced for its need, is something called Nissan (or Fundoplication or GERD) surgery. This is used to manage acid reflux. Basically, it involves suturing part of the stomach around the part of the esophagus attached to the stomach. This helps reinforce the sphincter muscle there. This surgery in not reversible and has a long list of issues/problems/complications we don't want Xavier to have to deal with.

One of the things we wanted to know from the doctor today was "what good is the GI tube going to do if we can't solve the puking problem?" Hence, surgery #3 if medications don't bring the puking under control. However, in this is a rub. No one knows the reason for the vomiting. And the Nissan surgery brings no guarantee it will be effective against the acid reflux (one of the long list of "issues" attached to this surgery).

Rebecca and I have had some time to digest (pus possibly intended) much of what we have learned or heard theorized. We think (and we think our data backs this up) most of Xavier's vomiting of late (these last two weeks) is due to over-gorging: his stomach has shrunken a significant degree (as Dr. Abbey agrees) and is not capable at this time to hold large volumes. Xavier's vomiting is generally at night right after "going to town" (and exciting his parents!) on a bottle and draining it, only to urp it up within minutes, emptying his stomach. After cleaning him up, he'll take another 2 to 2.5 ounces then go to sleep.

The other time common with many of his vomits is forcing down his medication (his Zantac, which, for maximum effectiveness, needs to be taken at strict 12 hour intervals) shortly after he has eaten. The stress of giving him the Zantac (he fights it, and who can blame him? It tastes horrible!) gets him worked up to the point of coughing and defiant crying, and then his stomach empties.

Rebecca and I have decided to work this angle to try and get his stomach able to hold larger volumes.

1. My sister, a dietitian, introduced us last December to a formula not based on cow's milk. Its nutrients are broken down to their base components so the body does not need to digest them, only absorb them. We picked several cans of this up today. It's pricey in the extreme (about 3 times Xavier's current formula), is available (by prescription only) from a single source in town, but we are hopeful and willing to eat beans for a while if it produces results. Rebecca has championed this avenue (she's a mom on a mission!) We learned this formula is used for infants and children who have allergies to cow's milk or have GI feeding tubes. We do have to take some care, as this formula is highly caloric. More than 30 calories an ounce can lead to kidney problems, and we are already mixing his formula at 28 calories per ounce. (note: we have consulted with Xavier's doctor and nutritionist, so we're not Ramboing this thing)
2. Rebecca and I are going to do our best to keep Xavier from gorging himself beyond his stomach's limit, which right now is about three ounces. This means tracking his eating amounts more closely and the times, as well as scheduling his morning and evening feedings so if his taking of Zantac stresses him enough to vomit, he'll have little or nothing to vomit out. It also means taking the bottle away from him (especially at night when he is wanton to eat larger volumes) when he has reached his limit (this, as it turns out, is easier said than done! He is really strong and can grab the bottle away from you in the blink of an eye, or hold it tightly in his mouth leaving you to struggle pulling it out). You may have seen those signs which read "X days without incident". We are starting a similar sign of "X days without vomiting."

We hope to see a measurable and significant weight gain in Xavier over the next week if we can manage these two items well.

Of course, we are praying!

• for a calm stomach, no reflux, no vomiting
• for the Holy Spirit to teach Xavier how to eat properly
• for Father's wisdom with the doctors, and for the doctors
• for Father's wisdom for the parents--Rebecca and me--to learn how to recognize when Xavier has had enough to eat for one sitting and not let him over-eat
• For Father to heal the root cause of the problem in our little boy!

Always, we thank you for your prayers. Great is our God, Who reigns! Who supplies all our need according to His riches! Who fights for us! Who heals us of all our infirmities! Whose ability and power is more than enough!