Littlest Blessing: tube-weaning

Showing posts with label tube-weaning. Show all posts

Amazing Success Today!

I started Eric in the highchair today. He did need to be restrained a little bit in the beginning. He has a tendency to lose focus and get distracted. The holding helped him to focus. He wanted to play with everything and was very bored.

I remembered reading about how the mother at The Crunchy and the Smooth used TV as a distraction. So, that is what we did. We moved his highchair and put on his new favorite video, Here Come The 1-2-3's! I didn't even have to prompt him, he opened his mouth every time I put the spoon near it. He is used to TV while being tube-fed. If Eric doesn't sit for at least 30 minutes after a tube-feeding, he will vomit.

We are still having problems with textures. We tried Stage 3 and he gagged so much, I only gave him a third. For now, we will stick with Stage 2 foods, which are the multi-blend purées. Today Eric ate 4 ounces of YoToddler Yogurt with Apples and Cereal and 4 ounces butternut squash & harvest apple with mixed grains. I also added a tablespoon of flaxseed oil for calories, making 220 calories for the meal. We are debating adding more meals during the day or keeping it the same for a bit.

We have also noticed that Eric is drinking more water. He drank 8 ounces at a sitting. His normal amount is 2 ounces.

This has been amazing progress in such a short time. I really don't think we would have been as successful unless we had done the wean first. We also made sure he could drink water without gagging.

Eric will still get water and food during the night. It will be a while before he is eating and drinking enough to stop it. We certainly don't want to push him too hard and lose all of our progress. Preschool starts soon, so we'll see what happens then as well. With luck, the tube will come out this year.

Trying Something New

Despite following the advice of Eric's former feeding specialists, Eric has yet to eat. If anything, letting him control everything, made things worse. He is very stubborn and if he doesn't want to do something, he won't. A friend did make a very valid point: how is he going to know that food is going to make him feel better if he doesn't in anyway associate food with feeling full?

After several days of Eric only being tube-fed while sleeping and crying in distress during the day, I knew things had to change. I do agree that just forcing him to eat will only cause problems later, so we are trying a gentle method of force-feeding.

It works like this: Cris gently holds Eric in his arms. This keeps Eric from resisting as much, but still feeling comforted. I give Eric 3.5 ounces of pureed food. I give Eric every chance to open his mouth. Sometimes he does, but if he doesn't, I pucker his lips and he opens his mouth. I spend the entire time being encouraging and praising each spoonful. He gets lots of kisses and cheers for each mouthful that he opens his mouth willingly for. I stop if he gets too panicky or starts to gag. He sees the container and how much is in it all times. He knows that this is all he has to eat.

Eric was relaxed towards the end of the second session. He had big smiles and the cheek-squishing became a game. He only gagged a bit once and swallowed the rest. There was no vomiting with either session. I especially liked how he was licking his lips during feeding.

I'm very encouraged by Eric's behavior. It also proves that he just isn't making the connection that food is good. He wants to eat but needs encouragement and help.

We'll keep doing the 3.5 ounces of pureed foods in the morning. During the rest of the day, he will be offered food without pressure. We'll take our cues for the next step after a couple of weeks.

Slow Progress Is Still Progress

Right now we are at giving Eric three feeds in the middle of the night. 1 (8 oz.) bottle of Pedialyte and 2 (8 oz.) bottles of food to total about 1000 calories. This a total of 24 oz. Eric is learning how to pour water into a cup and drink it. For the first time in his life he is drinking several ounces of water at a sitting, several times a day. He is also starting to taste. He has drunk lemonade and Pedialyte, and keeps coming back for more. This has been consistent and increasing all of the time. He is starting to open his mouth for flavors, even when it is obvious it is not water. Today, he even had some V-8. Just a sip, but he did try.

We were giving Eric 78 oz of liquids a day. While his diapers are no longer being flooded, Eric is still peeing, in good spirits, and shows absolutely no signs of dehydration. Instead of getting the tube, Eric is getting his hydration by mouth, which is exactly what we want him to learn! We are making so much progress!

It is a painfully slow process, so much slower that we had hoped. BUT, everyday, Eric continues to surprise and amaze us. The trick is to go at his pace and keep offering.

Day 11 of Tube-Weaning

Eric has been 3 days without food (during the day and while sleeping) and no progress has been made. Every play picnic has ended in failure since he will not touch the food. Putting food in his hand or touching it against him in anyway, caused him to cry. It cannot be a texture thing since he has touched similar non-food items before. It appears that Eric is very food-phobic.

The good news is that Eric is back to drinking water and will now use his spoon. With only water of course. The spoon is a really big deal as Eric has been avoiding anything in his mouth for a long time.

We did take away his Pedialyte at night and the next day it was obvious he was suffering. He wasn't dehydrated, but he did not feel well. We thought we were getting close to a breakthrough. Cris gave him 16 ounces of Pedialyte while he was sleeping and he perked up. His moods were back to normal and he had lots of energy. However, all progress had been lost.

We'll follow this until the end and start bringing back some food. We've decided we will only feed him enough at night to give him concentrated calories. Eric will need to hydrate himself during the day. He's doing okay with it so we are not worried about that aspect. The point is to let decide when to eat but take away our fears of him losing too much weight.

We are considering alternative therapies to help him get rid of his food phobia. We have not been successful in the past with food therapists. We will probably need a psychologist. Another treatment that seems successful with others is Hypnotherapy and Emotional Freedom Technique (EFT). More research will be needed.

Day 5 of Tube-Weaning

Last day of the food during wakefulness.

Meal plan:

While sleeping: 6 oz. Pediasure + whipping cream + Pedialyte

Awake: 12 oz. Pedialyte + meds + aloe + vitamin + Miralax

4 oz. Pediasure + whipping cream

12 oz. Pedialyte + aloe

4 oz. Pediasure + whipping cream

6 oz. Pedialyte + molasses + flax seed oil.

Calories: 920

V0lume: 44 ounces

Day 1 of Tube-Weaning

I think the hardest part of this wean is going to be going against my instincts and fighting my natural impulse to feed my child. We've worked so hard to get Eric up to 12 to 13 ounces per feeding and now we are reducing it to nothing. The water will be the last to go since we live in a very arid and hot climate. Even then we will sneak in a few ounces here and there while Eric is sleeping.

Today's meal plan:

12 oz., water, meds, multivitamin, aloe vera juice + Miralax

10 oz. vegetable and juice

10 oz. protein meal

12 oz. water with aloe vera juice

10 oz. fruit and juice

10 oz. concentrated goat milk and probiotic cereal

Weight: 33 pounds

Every day we will reduce by 2 ounces each meal until he is down to nothing. Then we will cut out some of the water during the day and giving Eric liquids and calories at night while he is sleeping. We did try a 72 hour wean and while unsuccessful, we were able to get him to start drinking liquids again.

While we were on vacation last summer, Eric was eating oyster crackers. He would suck on them until they were dissolved. In this manner, he would eat 4 to 5 at a sitting. When we came back, he stopped. I'm not sure what exactly it was that encouraged him to take a chance and why he stopped trying. What I do know, is that he tried and it is possible.

Tube-Weaning

Tomorrow will be day 1 of Eric's tube-weaning. We will be following a similar path to http://www.thecrunchyandthesmooth.com/heaths-wean-lessons-learned.html

We have obtained permission from the pediatrician and Eric is in good health. With luck, Eric will be eating before pre-school starts up again in August. Fingers crossed.

This is his current meal plan, this is all through the tube as he doesn't take anything by mouth:

7 am: 12 oz., water, meds, multivitamin, aloe vera juice

8 am: 12 oz. vegetable and juice

11 am: 12 oz. protein meal

3 pm: 12 oz. water with aloe vera juice

4 pm: 12 oz. fruit and juice

7 pm: 12 oz. concentrated goat milk and probiotic cereal