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November 30, 2007

Saturday, June 19, 2010

I know you all are curious, so here goes.

No more oral feeding. There is too much mucous and stuff going on, so no solid foods or bottles until after surgery.

No more Reglan/grumpy medicine/no sleep medicine. We talked it over with the doctor, and the little benefit it gives isn't worth the switch between Michael Jeckel and Baby Hyde. Poor Michael just cried himself to sleep a few minutes ago, and I hope by the time he wakes up tomorrow we have our smiling happy baby back. He laughed and played today, but it was laced with a lot of real tears and no nap worth mentioning. He dozed on the way to the doctor's office, and on the way home, but that is about it since this morning. He was so tired it was hard to watch, but he would not sleep. I had forgotten how much fun it was to rock him and feed him when he was on Reglan last time. It takes forever to get food into his stomach while he is crying and throwing himself around with fatigue. We'll try a new medicine on Monday, but that one might be just as bad. We'll have to see.

Speaking of feeding him, Michael is now eating ten times a day (up from five). Basically, this averages out to every two hours during the daytime and two times overnight. (Before it was four times during the day and once overnight.) We are venting his Gtube for a full five minutes before putting any liquid in the tube and we are feeding him half as much at each mealtime. Using this system we have reduced ourselves to only one liquid burp all day. (The one try at 150 ccs that I mentioned in the last posting was a failure in that it resulted in a post-meal spit up.)

It is frustrating, but necessary for the time being. Honestly, if Michael weren't going into surgery, this would be so much no big deal. As we discussed with the doctor, babies puke, and I can clean it up with the best of them. But, it is the surgery and the stitches we need to focus on now, and we need to have Michael demonstrate to us what his stomach tolerance is. Once we have this feeding schedule set and we go for awhile without spitups, we can try to increase his volume a bit and see what happens.

As far as the hospital goes, the GI doc and the Plastic Surgeon will be consulting. But, as far as we are understanding, Michael WILL be on a feeding pump immediately post-surgery, and we will be discharged with it. He will have to use it until the risk of damage to the cleft repair is over. We don't know what the settings will be -- it could be that the food is pushed in over 60 or 90 minutes a set number of times a day, or it could be what they call "continuous feeds" (meaning, I think, 3 hours on and 1 hour off the pump). Also, the continuous feed part could be at night only. At this point it is all up in the air.

The feel-good takeaway of this whole episode is that, per the doctors, we will have a whole different kid coming home from the hospital as far as eating and digestion is concerned. Everything is re-evaluated at that point. The pump is just a means to an end.

Surgery is the first step to progress and toward normalizing Michael's food intake. With a closed palate comes less air in the stomach and (at least eventually) the ability to eat by mouth. In the meantime, we are treading water and trying not to make waves all at the same time. This crazy feeding schedule is just a means to an end.

Oh, and thanks to y'all that have called and emailed about your baby videos/DVDs. We'll take 'em, with thanks! Michael may be off the grumpy medicine, but we are looking at a food pump, and there will be arm restraints after surgery. It's hard to play without your arms! Thank goodness he does seem to enjoy children's programming --at least some of it.


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