One month after tube wean

It is hard to believe that a whole month has already gone by since we finished the tube weaning program.  I was so worried that things wouldn't go well once Heidi left, but Sam and James are awesome and within just a couple of weeks they did not need to be tube fed at all!  We went out of town to visit family for a weekend in the beginning of April and I wasn't sure how things would go, being away from home and out of our normal routine and all.  I packed all their tube feeding supplies because up until that time they had at least needed a few ounces of formula by tube everyday.  I was prepared to give them all of their feedings by tube for the weekend, just in case.  

But it turned out that they did even better being away from home and they did not need to be tube fed at all that weekend and for the next three weeks!  Maybe it was the change of scenery, being around their cousins, getting some extra encouragement,  or just that they were ready.  Whatever it was, it was very exciting and a huge turning point for both of them.  

We have only had to give them a few ounces of formula by tube once since then,  just a couple days ago.  They weren't drinking as much and I have been worried about their weight,  James' weight has been stable but Sam is still losing a little bit.  I had been adding a little bit of cream to their drinks for about a week and it was fine at first but started to upset their stomachs and so they just didn't drink as much for a couple days.  I stopped adding the cream though, and they are both picking back up on their volume intake.  

They are still on liquid,  Pediasure and Carnation instant breakfast, but they are starting to seem interested in more foods.  They like yogurt, just a few bites at a time though, and we have been trying some different smoothie flavors.  They also like to taste pickles, chips, and other salty things but just lick them, no chewing yet.  I thought they would be sick of chocolate milk by now, but they still love it and ask for it all the time.  Sam and James have made, and are continuing to make, some amazing progress and we are so happy with how great they are doing!

One week after tube wean program

Sam and James are doing so great!  They have made a lot of progress in just one week, it is so amazing!  At the beginning of this week, James drank 20 ounces in one day. The next day he drank 24 ounces!  He is really catching on to recognizing hunger and knowing what he needs to do about it. Yesterday he drank less, about 14 ounces, but that is still good.  At this point, they are developing self-regulation and figuring out how much they need in order to make them feel good.  It is normal for them to drink a lot one day, and then not so much the next day during this period.

Sam has been drinking about 10-12 ounces a day, which is also really good.  I have been giving him a couple ounces of pedialyte after drinking to keep him hydrated and make him feel good about his hard work.  He has been a pretty happy boy and the amount of tantrums he throws has significantly decreased, which makes my job a whole lot easier.  I have been talking to Heidi everyday and she says that we can start cutting out the pedialyte to see if that will help Sam feel like he needs to drink more.  The only time he will be tube fed for now is before bedtime, if we feel like he needs it.

They are both so close to not needing their tubes at all!  They still just drink chocolate Carnation instant breakfast, but I am working on getting them to try some new flavors. They tried vanilla today and didn't mind it for a minute but then they wanted chocolate again.  That is fine for now though, we will keep working on flavors and start adding in puréed foods later when they are ready.  I am so happy that we went through the tube weaning program. It was not easy, but it is making life easier for us and giving the boys more freedom, not having to be hooked up to feeding pumps for hours everyday.  I will continue to post updates on their progress.

Day 10

Heidi left around 11:30 this morning, and the boys were sad to see her go but they will probably be even more sad when she doesn't come back this afternoon.  It was hard to see her go, it will be good to get things back to normal though.  Sam and James both did really well with drinking this morning. Sam drank about 4 ounces and James about 2 ounces.  They have been drinking more and more every day, and that makes me so happy and excited that pretty soon they will not need their feeding tubes at all!  For the next couple of days we will tube feed them three times a day and then decrease that as they are taking more by mouth.

I'm so proud of them, this was not an easy thing for them to go through but they did so well and I am always impressed with how strong they are.  We are so grateful for those who have supported us through this, especially those who donated to help make this possible for our sweet boys.  I will post another update on their progress in about a week.  

Day 9

Today was a really good day, Sam and James both made some great progress.  We fed them more by tube today, enough to give them more energy but still feel hungry.  Sam drank maybe an ounce this morning, and James didn't want anything.  I gave them almost a full tube feeding at lunchtime to give them some more energy, then this afternoon after their nap time Sam asked for a drink.  He drank a couple ounces, and James decided he wanted some as well.  James didn't drink a lot, but he seemed to be trusting the cup more than he has in the past few days.

I gave James another tube feeding around 3:30, but didn't give any to Sam because he had been drinking more.  I expected Sam to ask me to give him some in his tube when he saw me tube feeding James, but he actually climbed up in his chair at the table and asked for chocolate milk instead!  I was so proud of him!  Then around 5pm Sam asked for his drink again, and this time he drank about 3 ounces.  That is the most he has ever taken at one time!  When James saw Sam drinking, he also wanted some and he drank a couple ounces too!

At dinner time, Sam threw a tantrum and didn't want to sit at the table with us, but that is pretty normal for him.  James did sit with us though, and sipped on his chocolate milk the whole time.  He was so cautious about drinking yesterday and the day before and Heidi thought for sure he would take at least a few more days to get over that and want to try again, but he is James and he never ceases to surprise everyone by how tough he is.  I am so proud of both James and Sam for all they did today.

Heidi is leaving tomorrow so she made a follow up plan/ schedule for me to follow for now.  Once the boys start taking more by mouth, we can decrease their tube feedings even more until they no longer need their tubes at all.  It shouldn't take too long to get to that point as long as they keep up what they are doing.  We are going to miss her, especially the boys.  Everytime she shows up Sam says, "Heidi home, yay!"  So I think they will be sad for awhile when they realize she's not coming back.   We are so grateful for what she is doing for our boys and our family.

Day 8

I can't believe we are already on day 8, this has gone by so fast!  I have been feeling a little discouraged, but today was better and even though we only have two more days with Heidi here, I am feeling a lot more hopeful that the boys will be able to get off of their feeding tubes soon.  We gave them a little more formula through their tubes today because they were having such low energy and not feeling well enough to do anything. James was hanging his head all morning and looked so sad.  Then around 11am he brought one of his feeding bags  ( that connect to his feeding pump) to me, and said "lunch" in the saddest little voice.  It broke my heart, it is so hard not being able to feed them when I know that will make them feel better.  I did give some through his tube after that, and Heidi and I decided that they need more energy in order for them to succeed.

They both drank a few ounces of chocolate milk throughout the day, and we are starting them on a routine of sitting at the table and having a drink and snack every few hours.  They have always been happy with being on a schedule and knowing what to expect, so I think this will help them out a lot.  Heidi will be leaving on Wednesday and I am a little nervous about doing this all on my own when she's gone.  But being on a good schedule will help, and I will be able to call Heidi whenever I need to.  She thinks that within a couple weeks to a month both Sam and James will be drinking enough to not need their tubes anymore.

I wish I could say they will be completely done with the feeding tubes by the end of day 10, but I am really happy with the progress they have made.  The main goals of this ten days are that they start to recognize hunger and that eating/drinking makes them feel better, and to have more confidence and less fear about putting things in their mouths.  They have definitely accomplished those goals and that is so amazing!   I know they will do even more amazing things in these next few weeks!

Day 7

Today was much better than the past few days have been.  We only tube fed the boys one time yesterday in order to really push them and make them feel hungrier today. This morning Heidi brought them a couple of new sippy cups to try.  James was able to control the flow easier with his new cup, and that seemed to give him a little more confidence.  He drank a couple ounces of chocolate milk this morning and then tried some strawberry milk later on.

Sam also did really well today, he drank a couple ounces which is the most he has taken so far.  We got rid of the fruit punch and he was upset at first but got over that quickly.  He tried some strawberry milk and he decided he liked that, so that became his new "red juice".  I was very impressed with Sam today, he did not throw too many tantrums and when he did, he was able to calm down a lot faster than before.

I am really proud of both of them for trying so hard and for being so good today. Heidi is still confident that they can be done with their feeding tubes, if not by the time she leaves, by the end of this week.  Once they are drinking enough to sustain themselves and gain more confidence in their abilities, they should start eating more puréed foods like yogurt and smoothies and then onto solid foods when they are ready.

Day 6

Today was a little frustrating, I feel like the boys didn't make a whole lot of progress and there were a lot of temper tantrums, mostly from Sam.  We are working on establishing rules with food and our roles as parents vs their roles as kids.  It sounds simple, but we have never had to deal with those things before because we have never had normal meals together as a family so that makes it more complicated.  The boys are doing a lot better at sitting at the table and playing with/ tasting food while we have dinner. Most kids are told not to play with food, but in this situation it is actually a good thing and helps them to build trust with food.  They are also getting so much better at not throwing food.  A week ago if we would've given them food to play with it would have ended up on the floor within seconds, so that is a big improvement for them.

Neither of them drank very much today, and I feel like James wants to do it but he took some drinks that were too big yesterday so now he is a little afraid to try again.  We may have to try a new cup tomorrow that will be easier for him to control how much comes out.  All Sam wants is "red juice", which is fruit punch.  I guess it's better than nothing, but after just a few sips he is bouncing off the walls and going crazy from a sugar high.  And if he is going to be drinking something it needs to have some nutritional value instead of just being pure sugar.  So tomorrow the red juice is going to be all gone and I know he will throw a fit about it, but he will get over it and hopefully just forget all about the red juice.

This is such a learning process not only for Sam and James, but for me as well.  I have learned a lot about my relationship with them and how to be more patient and understanding.  I have been trying to put myself in their place and imagine how hard this must be for them.  We are still hopeful that they will be taking enough by mouth by the end of day 10 that they won't need to use their GTubes anymore.  I was really wanting a miracle that they would be eating cheeseburgers and fries by the end of this, but it is just going to take a little more time for that.  60% of kids who go through this program don't need their tubes after the ten days. The other 40% take longer, but they do succeed and that is what is important.  They will learn to eat on their own time, and we will have great support from Heidi and other therapists during our follow up period.  We still have a few days with Heidi here though, and a lot can happen in a few days.

Day 5

I felt like we took a step backward today, but Heidi says that that is completely normal for this stage of treatment.  So I am trying to be positive.  Sam and James really didn’t eat or drink very much at all today.  Mostly we just played with food, hoping that they would taste something.  They really wanted to play with the butter knives for some reason, so we had to teach them that those are only for cutting and spreading, not for eating with…. We spread pudding and yogurt on graham crackers and then topped them with goldfish crackers, fruit loops, M&M’s, etc.  Very appetizing, I know.  James would spread a little, then lick the knife, then spread more, and lick more.  So at least he was eating a little something, right?  They also made sandwiches for me and Heidi by putting ham, cheese, and pickles on bread, then spreading the mayo and mustard on.  They were quite proud of themselves for that.

Today was more about giving them a little break from being super hungry and getting them to trust food a little more.  We went to the park to get them out of the house for a little bit, and they had fun despite not having quite as much energy as normal.  Then we got pizza for dinner, which they are always excited about even though they don’t eat any.  During dinner they just wanted to do some more spreading on graham crackers with their new favorite utensils, the butter knives.  

So even though it doesn’t seem like a whole lot of progress was made today, I have to step back and look at the big picture and see where they were a few days ago compared to where they are now.  They really have taken some big steps.  First of all, they will drink a couple ounces in a day and that is huge for them!  They ask for snacks and drinks several times throughout the day.  They love playing with food and don’t mind when it is on their hands most of the time (they used to gag or even throw up when something would get on their hands or even if they smelled something).  They are obsessed with the fridge and are always wanting to open it to see what is inside.  They are just pretty much obsessed with food right now.  

Those might seem like small things, but it is more progress than has been made in a really long time so I can’t complain too much.   At this point it seems like James will pick it up a little faster than Sam because he is more willing to try things, and Sam is just a little more stubborn and cautious.  But that is just how their personalities are.  They are both very strong boys, and I know that they will get through this.  

Day 4

I'm a little late posting, but today was pretty rough and by the end of the day I was just too exhausted to do anything else.  The boys both had good points and bad points today. James had a great morning, he ate some yogurt and drank some milk and it seemed like he was starting to make a connection between hunger and eating.  By afternoon he was getting too fussy to want to eat anything else.  Sam didn't want anything this morning, but decided to drink a little juice this afternoon.  They each threw quite a few tantrums throughout the day, and I think they may have just been feeling a bit too hungry and grumpy to want to try anything.  
A big part of this therapy is building trust and helping James and Sam to not be afraid of putting things in their mouths.  They have had so many scary and negative experiences with things going in their mouths, and so I have to keep reminding myself that this is really hard for them.  Eating is the hardest thing they have ever had to learn, and expecting them to do it in just 10 days is really asking a lot of them.  They are so amazing and I know they can do it, I just have to be more patient and understand that this is just as hard for them, if not harder, as it is for me. Heidi says that days 4-6 are usually the hardest so hopefully after these next couple days things will start to get better.

Day 3

Sam and James made some good progress today.  They were pretty happy this morning and didn't seem to be hungry at breakfast time, but by about 10am they were ready to drink some milk and taste some new things.  Their favorite food of the day was a Hershey's chocolate bar.  I know, it seems bad to start them on candy but at this point it is all about getting them to put things in their mouths on their own will.  They loved licking the chocolate, and they also had some more fruit loops.  James wanted some yogurt but isn't quite skilled enough with a spoon yet so I would help him drink it from the cup and he loved that!

At lunchtime we had sandwiches but there wasn't a lot of tasting going on, mostly just playing with the food.  They did drink a little chocolate milk though.  Then this afternoon we went to ColdStone for some ice cream.  They both chose a color of ice cream that they wanted (Sam chose pink, James chose blue) then we all sat down and ate...well, sort of.  Sam might have had a very small taste of his, and it took awhile for James to taste his but eventually he did.  He was scooping up huge spoonfuls, putting it to his lips and then licking his lips to taste it.  He wouldn't actually open his mouth and take bites, but it made me so happy to see his face covered in blue ice cream and dripping all over his clothes.  It was the best mess I've ever seen!

A couple hours after that, Sam asked for a drink of water which led to them both asking for milk and juice as well.  It is a huge deal for them to be asking for food because that hardly ever happens, but it happened a lot today!  They are improving in their drinking skills and starting to get more volume with less spilling.  I am so  happy with the progress they made today and so was Heidi.  She says they are doing so well and if they keep it up they shouldn't need to use their G-Tubes at all by the end of the ten days!  I don't want to get my hopes up too much, but I'm feeling really good about the progress they have made so far.  And besides being a little fussy at times, the boys seem to be having fun.  They love Heidi and get so excited every time she shows up.  I don't think they are going to want her to leave when this is over!

 Reading with Heidi

James eating his blue ice cream

Day 2

The boys did great today, they each drank about 2 ounces of Carnation instant breakfast throughout the day.  Heidi came for breakfast, lunch, and an afternoon snack.  James did especially well tasting new things like chocolate pudding, fruit loops (or "tiny donuts" as they were calling them), and a few other things.  They are starting to get pretty hungry and grumpy.  The only tube feedings they had today were about two-thirds of their 5pm feeding and their whole 8pm feeding, just so they can sleep well tonight.  Unfortunately, James threw up a little after we put him to bed.  I think after being so hungry all day, getting his stomach pumped full of formula at the end of the day was just a little too much for him.

It is hard seeing them so uncomfortable, sometimes I just want to sneak some formula into their tubes to make them happy again but I know that would defeat the purpose of all this.  They have lost a little weight already and their clothes are fitting a little looser.  They have always struggled to gain weight, so seeing them lose it so quickly is breaking my heart.  I am praying so hard that they will understand soon why they need to eat, and that they will be able to put the weight back on.  They are making improvements though so that is all I can really hope for right now.

Day 1 of Tube Wean

Heidi, our feeding therapist, arrived today!  Sam and James were so excited to meet her and she became their new best friend instantly.  Today was mostly just a day for Heidi to get to know the boys and figure out what strategy is going to work best for the boys.  We started cutting their calories last week and they are now down to 50% of what they would normally get.  Today we cut out an additional tube feeding because Heidi felt like they needed to start feeling a little more hungry in order for them to have the desire to eat.  As a mom it is so hard feeling like I am depriving my children of something they need and purposefully making them feel hungry, but I know that it is what has to be done and it will hopefully pay off soon.  The boys also missed their nap today, so that only added to their discomfort and boy were they grumpy!  They were fine all morning, but after we cut out their 2pm feeding they just lost all energy and were so unhappy.

Heidi got to our house around noon and we played outside, did sidewalk chalk, and had some snacks. We had strawberries and crackers, and Sam actually loved his strawberry!  He sucked on it for quite awhile, longer than he's ever tasted something before.  We also had yogurt but that mostly just got thrown everywhere.  Heidi left after about an hour, then came back for dinnertime.  By that time, I think they were starting to feel really hungry.  Sam threw a big tantrum and didn't want to sit at the table with us, but James did.  He played with some chicken and vegetables but didn't put anything in his mouth.  Then we got some chocolate milk out for him and he went to town!  Most of it was all down his shirt, but he probably drank a whole ounce!  That is amazing!!!  He has not drank that much in years!!  Sam also drank a little bit of chocolate milk, and that was about the extent of their eating today.

They did so well today, I was really impressed and so was Heidi.  She thinks that they are going to do great, and that makes me so excited!  Their progress today was more than I could have hoped for on the first day.

The Story of Sam & James

Sam 2 lbs. 1 oz.

James 2 lbs. 4 oz.

Sam and James were born ten weeks early, Sam weighing 2 lbs 1 oz, and James weighing 2 lbs 4 oz.  Along with being extremely small, their lungs were severely underdeveloped and James had some serious heart problems.  As soon as they were born, they were admitted into the NICU where they had breathing tubes placed in their mouths and down their throats, and feeding tubes through their noses down into their stomachs.  Having had a very complicated pregnancy, we knew that our boys would have a rough start.  We thought that they might have to spend the first couple of months of their lives in the hospital, but we had no idea how hard things were really going to be.

Six months later we were finally able to take our boys home.  They both came home on oxygen and still had feeding tubes.  Because they were on oxygen for such a long time, they really didn't have a chance to even try taking a bottle.  They also had a lot of negative experiences with tubes going down their throats which caused them to not want anything near their mouths.  After about a month of being home, they still had not made progress with eating. At this point they had NG tubes, which go down the nose and into the stomach. They would sometimes grab them and pull them out of their noses. We would then have to reinsert the tube ourselves, which was very painful for them and not fun for us as parents.

Soon we decided that having G tubes would be less heartache for all of us. A G tube is a surgically placed small plastic piece that opens, similar to the stopper on a beach ball, and has a balloon that is filled with water on the inside of the stomach wall to hold it in place. The port on top opens and connects to a tube through which formula is given. We were expecting to feed them this way for maybe six months to a year, with hopes that they would be eating on their own soon.

From then on we had once or twice a week visits from feeding therapists in our home, and two to three times daily practicing with them sitting in a high chair, taking bites from a spoon, sipping water, etc.  Although intentions were good, the stress that it caused me as a parent, and the pressure that the boys felt, only created more issues and worsened their aversion to food.  After about two and a half years of trying several different methods and having very little progress, we feel that it is time for them to move on to the next step, which is an intensive tube weaning program.

A lot of people ask,  "Why now?  Can't you just wait until they're older and you can reason with them about why they need to eat?"  I really wish it were that simple!  Sam and James will turn three in a couple of weeks, and are at a very critical stage of development in their lives.  Studies have shown that prolonged tube use can interfere with the development of self-regulation, motor skills, and healthy family dynamics.  The longer oral intake is delayed, the more unhealthy patterns are developed.

 James, 2 1/2 yrs old 

Sam, 2 1/2 yrs old

Family dynamics are very important to life-long eating habits, and each negative mealtime experience that occurs as a result of tube-dependency can further damage family relationships as well as the child's relationship to food.  Early healthy relationships with food and healthy family mealtimes are key in the prevention of obesity and related health problems.  Like most parents, we simply want what is best for our children.  We want them to have the experiences that all children deserve, and not be excluded from so many activities where food is involved.

There is also a lot of pain and discomfort that come from being tube fed.  There are a number of side effects including reflux (heartburn), vomiting, site infections, skin irritations, increased medical visits, and poor volume tolerance.  We have a very strict feeding schedule that we follow everyday in order to make sure they are being fed enough so they can stay hydrated and grow.  They are fed five times a day, which makes a total of about two and a half hours per day of being connected to a feeding pump.  That is a long time for any toddler to have to sit still, and a lot of time that they could be having more meaningful experiences.

There are only a few places in the US that do intensive tube weaning programs, and none of them are  in Utah.  After doing some research, we have decided on a clinic called Spectrum Pediatrics, located in Virginia.  They have a very successful 10 day tube weaning program, and we are lucky enough to be having one of their therapists come to our home, rather than us having to travel to Virginia.  The therapy will begin March 20th, and we are so excited to finally be able to move forward and see our amazing little boys start having positive experiences with eating.

Sam and James have come so far from where they started, as very tiny and sick premature babies.  They are truly miracles and are so smart, funny, and just all around amazing.  I feel incredibly blessed  to be their mom, and to have the opportunity to be on this great journey with them.  It won't be easy, but it will be so worth it.  I will continue to post updates on their progress as the therapy begins.  Our family is extremely grateful for your support.