Tube Weaning: Day 5

Auggie had 350ml of formula and 50ml water overnight.   I had turned his food off at 5 AM and thought for sure that he would be hungry by 8 AM - with every meal I keep thinking this is it, we're going to see a breakthrough...it didn't happen, but he did feed himself some rice cereal with prunes.  At lunch he again fed himself some butternut squash and rice cereal but he did not open his mouth when I tried feeding him -  he tolerated being swiped though.  He sucked on some tangerines.  His fontanelle seemed slightly sunken and he hadn't had a pee diaper in 4 hours so I gave him 30ml of water via tube.  After his nap he seemed much better - he found a rice puff on the floor and ate it!!! This really surprised me. Later when his speech therapist came over he took a couple more rice puffs - coughed a bit but swallowed and was okay.  When he tried a piece of tangerine however, instead of sucking as he had previously done, he took a bite and coughed, gagged and vomited.  After recovering in my arms he sat back down and fed himself some sweet potatoes.  After his bath he was cranky and seemed tired and hungry - took 10ml of rice formula from a bottle - yay, finally some progress....he got very cranky that evening, I started his feed at 6 PM and finally he went to sleep early at 6:30.  We'll have to start getting used to a cranky baby, because he is going to start feeling even more hunger soon.....tomorrow is another day at 50% of his calories.

Tube Weaning: Day 4

Day 4 is over - he received 430 ml of formula overnight and 20ml of water during the day.  Tonight he is getting 350ml of formula and 50ml of water putting him at 50% of his usual calories.  He did a few more things today - took a spoon covered in pureed yams to his mouth several times, only at 5 PM would he open his mouth for me once when I presented him with a spoonful of food.  He took a few sips of his formula from his nuby bottle and a few sips of water earlier in the day. I had decided that there was no way he would take his formula via mouth (it is vile!!), but his speech therapist thought we might as well try it and lo and behold he seems okay with it!!  It would be great if he could learn to drink his formula so that we wouldn't have to worry about a replacement.  Again he played with his Mr. Juice Bear and chewed on tangerine slices and avocado.  He has already lost 5 oz. so I hope he starts eating soon. 

Tube Weaning: Day 3

I was too tired last night to post about the day's progress. Yesterday I decreased his overnight formula by another 10%, so he had 480ml of 24 calorie neocate overnight (turned it off at 8 AM).  The whole day was much the same - he did not open his mouth for the spoon but he did not mind having his lips swiped with some food.  I gave him an apple chunk to mouth and for the first time he actually took a tiny bite and gagged (of course, I hadn't peeled the darn thing because I didn't expect him to take a bite!).  Later that day he took tiny sips of water from a small bottle with a newborn nipple.  He took it with him in his bath and had a good time playing with it on his own.  He enjoys taking a peeled tangerine and mashing it up and then sucking on the slices - we did that twice yesterday.  I also gave him a few slices of peeled tangerines from a can that he seemed to like.  He also was very interested in Mr. Juice Bear.  We tried some purees as well: peas, butternut squash, and rice cereal with prunes. He also chewed on a cucumber spear - again taking a tiny bite and gaging when he got a surprise piece in his mouth - I think I'll take a break from from undissolvable solids for a while.  I've tried snap pea crisps with him several times but he quickly pushes them off his tray.  If anything he is getting used to having some different textures and liquids of various kinds around him - I guess we made some progress....we''ll see what happens today.

Tube Weaning: Day 2

I expected a lot more today.  His calories were reduced by another 12%, so he received 24% less today than his usual.  I turned his food off at 10 AM.  At 1 PM I offered him peas, butternut squash soup, snap pea crisps, rice cereal, juice drink, formula and he was not really interested but tolerated having his lips swiped a few times.  At 3:30 his speech therapist came over again and we offered the same foods plus some apple chunks, blueberries, and carrot/apple mash-up and again no real interest although he did play around with his honey bear for a while as we watched his internal struggle: I want it but I'm afraid - he would pull it towards him, play with the straw, making smacking sounds, get the straw up to his face and then retreat.  We hope that in a few days this will turn into the bottle he chooses to take some sips from.  Tomorrow we reduce by 10%, for a total cumulative reduction of 34% - let's see what he does....

Tube Weaning: Day 1

We had a pretty good start today.  Auggie had 616 ml of formula (a 12% reduction).  He has been on continuous feeds for the most part since that is what he tolerates best, so we let him go continuous today to keep him comfortable.  Feeding started at 5:30 PM yesterday and we turned his food off at 1:15 PM today.  At 3:30 his speech therapist came over and he seemed very interested in eating.  He took his honey bear in his mouth and had a few squirts of thickened veggie/fruit juice.  The liquids are thickened with Thick-It, a corn based product.  He also had a few tastes of juice from his avent bottle and his rice cereal drink - I boil 2 tablespoons of rice cereal with 4 oz. water and 1/4 teaspoon agave syrup until it's smooth and then let it cool.  He did not directly open his mouth to the peas we offered him but he also didn't turn away and he tolerated being swiped.  The big breakthrough today was when he picked up a tiny piece of rice cake and when he bit into it he looked so surprised but he proceeded to swallow it and did not even gag!!!  This was a major step for him.  Tomorrow I plan on reducing his feeds by another 12% so I plan on turning his food off at 10 AM. 

Sippy Cups, Bottles and Spoons

small bottle with soothie nipple, nuby silicone, nuby sippy cup, tilty, avent, infatrainer, honey bear

We've spent a small fortune on special bottles and sippy cups hoping that a miracle will occur.  So far, there is no clear favorite, but Auggie does seem to like the Honey Bear.  Nuby makes a nice silicone bottle that can be squeezed to facilitate bottle feeding a baby with a weak suck.  We also have a nuby sippy cup which should be good in a few months - there is no valve so it does require some sucking to get the liquid out.  The Infatrainer (clear with yellow lid) is an overpriced beaker in my opinion - it does not work very well for us.  Avent's standard sippy cup with handles is a good one and then the standard small bottle that he can easily hold on to with the soothie newborn nipple seems to work well for him. We like the idea of the Tilty with smoothie lid and we will try it in months to come.  We like the nuk brush for feeding solids and the duo spoon is a nice idea although he does not seem to like it as much - it's a little big and probably intimidating.

sassy, nuk brush, IKEA, munchkin, ?, duo spoon

Tube weaning - we start January 10th

We have our doctor's approval to do a full blown wean - meaning that we will be reducing his tube feeds by 10% daily for five days, then staying at 50% for 3-5 days and then reducing another 10% daily until we get to 0%.  We hope to see an increase in oral intake during the 50% days.   I will post more about our progress later.  We've based our weaning plan on the Graz model used at the Children's Hospital in Graz, Austria.