Manuals? I Didn't Read No Stinkin' Manuals!
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:
- 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.
- 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.
- 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.
- 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).
- 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!
So much development and advancement! Great is our God. Thank you all for standing with us in prayer for Xavier.