Tube Weaning: Update

It's been a while since I've posted because we've hit status quo.  We reduced Auggie's calories to zero, took the tube out last Sunday and then he got sick.  He developed a high fever and we had no choice but to put the tube back in on Monday.  After 4 days of fever he broke out - Roseola!  So, now he's eating about 75% of what he was doing during his best days and we give him 140ml of formula and 150 of pedialyte at night.  He's drinking less and less very day it seems.  It's very frustrating that we are making no progress with his drinking skills/desire....his speech therapist is back on Monday after a 2 week break due to Auggie's illness, I hope she has some suggestions.  We are giving him avocadoes again as he needs the calories and he LOVES them.  We have not noticed the eczema again so it could have been from the chicken he tried a few days before he had avocado.  His weight is stable at 18 pounds (7% weight loss overall) and he has been pooping regularly which is great. 

Tube Weaning: Day 13

Auggie was really hungry this morning when he woke up - he had a big breakfast and then demanded my bowl and ate my cereal.  He drank 30 ml from his Mr. Juice Bear but then was done for the day (drinking any larger amounts).  He sipped from a juice box for the first time - drinking from a straw seems to be the way to go with him.  He happily ate pretty much everything today but I had to stop giving him avocados when I noticed an eczema rash on his neck and wrists - he has latex sensitivities so he may have issues with avocados and bananas as well - we'll take a break from them for now to see if his skin improves.  Tonight he's just getting some water and tomorrow morning we plan on taking the tube out.....hopefully he'll start drinking more.

Tube Weaning: Day 12

Auggie continues to eat and eat and eat.  He is taking more and more calories by eating his purees, but he is still not drinking very much. However, today he did start drinking neocate splash from his Mr. Juice Bear.  He is getting a little bit of pedialyte tonight and then I think it's time to say goodbye to his tube!!!  It has been an amazing journey....more news to come soon.

Tube Weaning: Day 11

What a different kid we saw today!!  There were no periods of gloominess.  I made sure to feed him every 2 hours and he beat his record. He had lamb for the first time today, plenty of avocado and he consumed almost as many calories by mouth as he has been getting via tube before.  He also beat his old drinking record, taking 2.5 oz. in 10 minutes.  We're seeing a steady increase in his consumption now every day. The key for him now is fluids and protein.  We have to figure out how to get him to drink a protein rich beverage.  Our options are limited due to milk protein allergies but we will try neocate splash tomorrow and if that doesn't work we might have to experiment with soy milk.  Tonight he gets some pedialyte but no formula. Looking forward to tomorrow.  The house is a mess as I spend most of my time preparing food and feeding and washing Auggie. 

Tube Weaning: Day 10

What a day!!!  Today Auggie beat his record from yesterday and had 23 tablespoons of purees throughout the day, but the most amazing thing was when he guzzled 2 oz. of rice cereal drink in 7 minutes!  He only had 20% of his usual calories overnight and then pedialtye to hydrate him.  His hunger slowly built up during the day and breakfast was his smallest meal.  He never got too cranky or gloomy.  Tonight I'm giving him just 70ml of formula and then about 300ml of pedialtye.  Tomorrow we're working on his drinking skills and trying some neocate splash.  The doctor says he doesn't need to drink a "milk" as long as he gets enough protein and calcium from the foods he eats - that's great news, because I don't know what he would be able to drink.  We discovered coconut "yogurt" today - it's packed with calories at 30 per oz and Auggie seems to love it.  Time to get some sleep.....

Tube Weaning: Day 9

Major breakthrough!!!  Auggie devoured half an avocado this afternoon along with several tablespoons of peas, cauliflower and sweet potatoes.  He was glum and distant when he woke up from his afternoon nap and when his speech therapist first came over, but once he started eating he quickly perked up.  We are so proud of the little guy, now we just need to continue with the same volume of solids and get him to take more fluids.  He took 70ml of his rice cereal drink today and several small sips of water and diluted white grape juice.  We're cutting his calories again tonight - he'll get just 20% of his usual amount...we're hopeful that we'll have another good day tomorrow.

Tube Weaning: Day 8

We seem to be on the verge of a breakthrough but it's frustrating for everyone.  Auggie seemed anxious, hungry and a bit frantic today when he was presented with food.  He insisted on grabbing a tangerine from me and then bit into it really hard and made a grunting sound (very caveman like).  He almost took a big chunk out of it.  Again, he was not too interested in taking a spoon from me but he fed himself a few times, ate off my finger and sucked food from his nuk brush.  He took slightly less today from his bottle but more solids than yesterday.  Another new development today was that he started taking small sips of water from his nuby sippy cup.  His calories via tube were reduced by 60% overnight. I gave him some pedialyte during the day to calm him.  He's having good pee diapers so he's staying hydrated even though I'm only giving him 400ml of fluids via his tube.  His speech therapist comes tomorrow so I hope he makes some progress.  He has already lost about 3.5% of his starting weight (we're allowing a weight drop of 10% before we change course). 

Tube Weaning: Day 7

Day 7 was the best yet.  Auggie continues to drink his rice cereal drink; at times just small sips but other times he pulls the bottle towards him and takes big gulps.  He had a total of 90ml today - I  was very impressed.  His intake of solids has also increased - took about 40ml of sweet potatoes, peas and rice cereal mixed with pureed prunes.  He gagged a bit on a baby mum-mum but recovered pretty quickly.  I've been too worried about sabotaging his eating experience with another vomiting episode that I've tried to stay away from giving him any pieces of anything.  With his limited eating/drinking experience he is still at the level of a 4 month old so I guess we just need to take it slow with the textures. His mood has been pretty good despite the caloric reduction although he does tend to get pretty cranky and needier in the evenings.  All in all though, he's been a real trouper.  Tonight he gets just 40% of his normal calories we'll see if he eats more tomorrow as a result.

Tube Weaning: Day 6

He took 60ml of liquid rice cereal from a bottle today!!!! Yay, he can do it.  The best thing is that he took 30ml in 5 minutes and the remainder in several sessions during the day.  He only opened his mouth once for a spoon of puree but even that's progress. I am however feeling the pressure of this wean starting to build and my body is starting to shut down from the constant feeding, preping, cooking and cleaning in addition to taking care of a very needy 4 year old. Tomorrow is another 50% day and I hope that my sinus headache and sore throat does not turn into a full blown cold.  It would be devastating for Auggie to get sick at this point and we would probably have to change plans.  Lots of hand washing for me.  Cross your fingers for us!!

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.