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!