Hello to everyone.

We had a nurse, Susan, today whom we have never met. She has worked the NICU for 28 years and we found her not only pleasant, but informative.

She explained in greater detail the "ad lib" feeding schedule Xavier is currently on. It's more than just a feeding schedule, it's a developmental evaluation as well as another leg in Xavier's journey to come home.

As briefly explained yesterday, Xavier may eat whenever he likes and how much he likes, but needs to be eating (via bottle or breast) a minimum of 80 cc every twelve hours. The 80 cc is the minimum to maintain his hydration. His NG tube is only used to feed him his iron and vitamin supplements and his Acticgall, but even these he will have to take through his bottle eventually.

The ad lib also refers to his cares. He is no longer on a every four hour regimen for exams, diaper changes, and (of course) feedings and handlings. This allows Xavier to work out his own rhythms for feeding and waking and sleeping. The doctors will watch this and the information they learn will help tell them much about Xavier's maturity and development and how near to leaving the NICU he is.

One of the things Susan said several times yesterday concerning Xavier was "he certainly didn't read any books on being a preemie." In the contexts she made this statement, it always referred to how mature and developed he is, even though he is still tiny; he's not behaving like a preemie. That is music to our ears! A crescendo of praise and thanksgiving we relay to Father for His goodness! Susan's statement joins Dr. Rick's statement of "your baby continues to prove me wrong" in declaring the glory of God!

Another nurse who has frequently cared for Xavier, Allison--a 22 year NICU veteran, stopped by to visit last night. She has been off several days and commented with amazement at how well Xavier is doing with his bottle. "I've been away four days," she said, "and look how well you are doing!" Thank You, Jesus!

How is Xavier doing on his ad lib schedule? He consumed about 107 cc in his first twelve hours (two feedings he took 30 cc and one he took 40 cc), all of it from the bottle. His previous "regimented" amount was 112 cc in twelve hours. He did loose 10 grams over the last day (bringing him to 1075 grams), but this amount is not, necessarily, due to lower amounts of food. As Susan put it, "Ten grams is about what a full diaper weighs." His weight is one of the things the doctors will watch closely. If his weight loss trends over a few days, he will be put back on his every four hour schedule. I don't think that is likely, however, nor do the nurses.

We learned yesterday that Xavier not only has PT, he must pass a PT test. Rebecca arrived in time to witness most of the exercises the therapist was testing Xavier with. He did well on everything except some items:

1. He does not offer resistance with his arms when picked up from underneath them. He should press his arms toward his body when lifted, but instead lets them go up over his head.
2. He is strong at being able to hold his head above the mattress and lay it down slowly, but he does not have control and strength to keep his head from flopping forward.
3. He can catch and stabilize himself when tipped over backward (Rebecca walked in on this test and thought to herself "Hey! What are you doing to my son?"), but has not learned how to stabilize himself when tipped to his side.
4. He has little neck and shoulder strength and is not able to lift himself up (by pushing against a mattress or a chest, for example).
5. He is not using his thumbs when he holds or grasps things, keeping them folded in against his palms. There is a little preemie-sized glove they have to help with this, but he is not wearing one at this time. Wow, what amazing tools they have!

Rebecca will learn more about these things Wednesday when she meets with the therapist.

So much development and advancement! Great is our God. Thank you all for standing with us in prayer for Xavier.

Hello to everyone.

Xavier made another milestone today. We walked in to see him and noted his temperature sensor was no longer attached. We asked Stacey, his nurse today, about this. She said it came off last night and they decided, since he has done so well regulating his own temperature, he no longer needs to be "plugged in" to the pod's monitor.

Also, this week, he may move from his pod to a crib. The NICU cribs are clear, acrylic tubs, much like the pod without a dome, and fewer monitors and sensors.

The doctors have written orders for Xavier to go to "ad lib" feeding. What this means is a set amount of food is given that he should consume over a twelve hour period, but he can eat whenever he likes or wants. So, he can suckle 20 ml in one feeding and not have the remaining 8 ml pumped through his NG. So long as he eats his 168 ml/12 hours (or whatever amount the doctors set), he can take it as he can and his NG will only be used for Actigall and vitamin injection. This is another step closer to home.

Speaking of closer to home, Stacey was talking to us prior to our leaving and stunned us with knowledge we were not prepared for: Xavier is doing so well, she expects he might be able to come home in the next week or two! Rebecca and I have not planned for this so soon. Until tonight, we were expecting (based on previous conversations with the doctors) the end of July, beginning of August.

This possibility may kick us in to overdrive, especially if it turns out to be a week. We are in the midst of moving out of the Northern Outpost, packing up what's left, listing the property, cleaning it, showing it, selling it. Now, we may have to rustle a car bed and bring our son home in the middle of these plans (plus, Rebecca and I need to attend a "check-out" class where we learn the basics of what to do when we get Xavier home before we can check him out). What's the opposite of Ambien? We might need a prescription. God is our strength. He has brought us this far, He won't abandon us now!

Your prayers are gold to us all. Thank you for them.

Xavier waiting for his bottle. He had to endure hunger pangs a little longer because Mommy had to get a picture of this. It looks like Xavier is driving his pacifier like a car's steering wheel. I explained to Xavier he needs to get used to this, and to just wait until Daddy gets serious about pictures and has to manage poses, lighting, background, and so much more!

Windy, Xavier's dedicated nurse, seems to be something of a scrapbooker. This sign appeared in his bay a few days ago. We learned Xavier has a dedicated nurse, one who follows his case the whole time he is in the NICU. That way we have consistency with his care and can go to a single person for all the answers if we need to.

Another of Windy's creations. This awaited us, hanging in his bay, and announced Xavier had reached three pounds. Upon seeing this, we didn't need to ask the nurse how much he weighed (though I did anyway, because that's how I roll)

Hello to everyone.

Xavier broke the three pound barrier! As of tonight's 8:00 PM care, he weighs 1385 grams. That's 3 pounds and 1 ounce. He put on 20 grams between Thursday and Friday, bringing him to 1350 grams, then 35 grams since last night to 1385 grams tonight.

I was able to get his hematocrit value today, and it is 27.8. Generally this is a little low (he was at 26 the night of his transfusion four weeks ago), but his reticulocyte count is at a really good level. The hematocrit value is the amount of red blood cells in the blood. The reticulocyte count (or "retic" count) is how fast the bone marrow is producing and releasing red blood cells into the blood.

Thank you for your prayers.

Xavier at three pounds, one ounce. He has just had his diaper changed after sleeping on Mom for an hour, and grew fussy (and a little cold). We had to give him a pacifier to settle him for this photo. It's a little grainy due to no flash; his eyes are still sensitive to strong light. The band on his right leg is his security anklet. His "onesy" he is wearing was one of several preemie-sized jump suits gifted to us from the wing of the Wyoming Air National Guard Rebecca is attached to.