MommaMalia Blog: Tales of The Feeding Tube

Posts Tagged ‘Food

I wanted to just send a quick post updating you on Malia’s progress. She is 6 years old now with no need for a feeding tube. She is still one of the shorter kids in her class and we still keep a close eye on her weight. Malia is now old enough to know that she has bad eating habits and that she needs to eat better. When she was 2 1/2 I remember praying for the day that she would be this old and FINALLY able to understand that she needs to eat more. That day has arrived!

Malia is a a very active child. She is an All-Star Cheerleader & dancer. I ALWAYS remind the doctor of this. (I also weigh her with her clothes on now. I used to be against weighing her with her clothes so we could get a true weight…but not anymore. She is older now…and every little bit helps, right?) It is actually quite funny. The first time I took her to the cheer gym I looked around and I saw so many super skinny girls flying high in the air (healthy skinny girls…many with six packs) and I looked at my equally as skinny daughter and I said to her, “Malia…I think we found a sport for you.” We have been at the cheer gym for two years now and she loves every minute of it. She knows she can’t cheer with a tube in her nose. I remind her of this on the days she doesn’t want to eat. Sometimes a little threat works every now and then.

My apologies that I don’t post as much as I used to. But our journey with the feeding tube has ended. THANK GOD! I think, that alone, should bring hope to a lot of people who are just starting their feeding tube journey. Especially those with children like mine that have behavioral issues. Just know that it will end!! Do the hard work. Take them to therapy like I took Malia to the FEEDING CENTER at Children’s Hospital in Philadelphia (CHOP). Feeding time may always be a struggle. Occasionally, it still is in my house. But it is NOTHING like it used to be. NOTHING LIKE IT USED TO BE. It is SO much better. If you are struggling believe me…I understand….and like I said… know that it will get better!

I will not blog very often but i will try to update on Malia as often as I can. I will definitely update her weight and things like that.

I put our story on the web because I didn’t have any information on Feeding Tubes for toddlers. I didn’t even know that FTT existed. I was a scared, confused and upset mother who’s world was spinning around. So if I was like that I knew other people out there had to be like that too. If I couldn’t find much information for myself…well I was going to give… what I knew… to others… so they could be aware of FTT and feel a little better about the whole process.

I hope my blog finds you well and helps in any way.

Here is my go to calorie booster: Pediasure Shakes (In the blue bottle) – I tell her they are sidekicks but they aren’t. (She just likes the name “Sidekicks”) The blue ones are the shakes. I use the shakes because they have more calories than the Sidekicks and they are made specifically for weight gain. Malia LOVES them and I highly recommend them. Here is their website if you want to find out more: https://pediasure.com

Malia cheering - post feeding tube. She is a happy, healthy, thriving little girl that truly enjoys life.

Malia cheering – post feeding tube. She is a happy, healthy, thriving little girl that truly enjoys life.

From my experience with Feeding Session Bites, here are a few tips I want to pass on that I have learned. If you have any tips for bite sessions feel free to post your ideas in the comment boxs.

TIP #1: DON’T SWEAT THE SMALL STUFF (AKA: DISTRACTIONS)

Most likely, you will NEVER be able to re-create the environment the Feeding Center provides for Feeding Sessions. You WILL have to deal with multiple distractions at home. So don’t worry about the distractions. Minimize them to the best of your ability and don’t worry if your child does get distracted by things in the home. IT HAPPENS.

*I think I stressed myself out when I first began bite sessions. I tried to re-create the Feeding Center environment at home and quickly realized it was impossible. Distractions were EVERYWHERE!!  If I didn’t relax and give in to the fact, that therapy won’t be as perfect as I had it at the Feeding Center, then I would have made myself absolutely crazy. I didn’t need to put anymore stress on myself and you don’t either. So my advice is…DON’T SWEAT THE SMALL STUFF.

 

Major Distractions at Home I Encountered And How I Dealt With It:

Distraction #1:     Pets

*My cat constantly wants to sit on my lap during bits and this is distracting to my daughter. My dogs like to hang out next to us ALL the time and eat the food my daughter might drop on the floor.

-A way I got around this distraction and you can too, is to put them away in a cage or in a room while you are giving bites.

 

Distraction # 2: Family and Friends

This is a big one. You think your family will cooperate with you…but they may not. Sometimes you family will want to talk to them. Or give attention to your child when your trying to ignore your child. They want to say hello when they come in the door and talk to them when they are trying to chew and swallow. Or bother them while they are eating. Your younger children will try to get your attention. The list goes on and on. Plus, friends can just randomly show up during bites….or call you on the phone…it happens.

1. Talk to your family and friends. Let them know what you are doing. If you have a scheduled time for bites everyday make sure you let people know not to call you during the time. If they are around the bites when it is happening make sure they know NOT to interact or talk to you and your child while bite sessions are happening. (Your child will WANT to get their attention, talk to them or show off for them. As long as your guests and family knows not to give them that attention you child will realize that getting their attention is pointless.)

2. One thing I did when I first started bites at home was make signs letting people know bites we were in session and not to distract us. I hung as sign on the outside door so people who may stop by are aware bites are happening. I also tell my family, in the house, that we are about to do bites and not to bother us.

3. When I babysat my 1 1/2 year old niece I made sure bites where given when she was napping or when she was eating her breakfast in her high chair. I would place her in a place where I could see her  but my daughter could not see her because my daughter would constantly try to get the attention of my niece and my niece would give it to her. Other children in the house are BIG distractions. Do your best to occupy them with toys etc.while your doing bites, if you are alone. If someone is home, have them take care of the little ones while your busy doing bites. If your children are older, try to get bites done before they get home from school. My Step-son is 12 and he still has his moments where he distracts his sister even though he knows not to bother her. It is better if bites are done before he gets home.

4.  Let your family know that they also have a crucial part in Bites and the health of their family member. Their part during therapy is NOT TO DISTRACT you. Tell them that their role is very important and needs to be taken seriously.

5. Don’t exclude your family….include your family. You can involve other children in the house with the therapy sessions by having them help you prep the food and clean up. This will hopefully help the family feel they are involved.  They may not be trained to give the bites but they can help in other ways.

6. Many people will be curious about your therapy sessions. If you feel comfortable enough, allow them to observe you during a session. Of course, make sure stay quietly in the background. By allowing people to observe what you are doing, your friends and family will learn why it is so important that they do not interrupt you or distract your child. Plus, they will be more inclined to understand the importance of therapy and why you are doing it. Surprisingly, especially for the skeptics, they will see that your child is eating better and the bite sessions do work.

Distraction #3: Everything else in the house (Phone, TV, Etc.)

Final thought: All these things I mentioned above, will distract your child. Many things you won’t be able control but you can try to minimize the distractions as much as you can. Administering bites in a quiet closed room is ideal and if you can do it that…then do it. But if you are like me and your main floor with the kitchen, dinning room and living area is a great room where everything is open… then try to minimize the distractions to the best of your ability. Don’t stress out too much. The important thing is that your child eats all of their bites. If this is accomplished…even with distractions…you have achieved your goal and should be proud of that.

CHECK BACK FOR TIP #2:

TIP #2: (USE THE TIME TO YOUR ADVANTAGE. Bites don’t always have to be Tedious)


If you have a soft stomach do not read on. This is very gross. I thought long and hard about sharing this with you and I think you deserve to know some the gross things that can happen with a feeding tube. In no means is this ment to be a “Tube deterrent” and I am not trying to scare people away from the tube. But this happened to us and something like this might happen to you. So I feel it is best that I tell you all sides of the feeding tube. Including the not so pretty side. The gross side. The yucky side. So if you can stomach nasty stuff then go ahead and read on.

THE YUCKY SIDE OF THE FEEDING TUBE:

This particular event happened over the weekend and I have yet to put Malia back on the feeding tube. As much as I thank the feeding tube for putting weight on my daughter and helping us to figure out that her FTT is due to “Lack of Nutrition” there are still some days where I do think that the feeding tube is traumatizing to her. She seems ok now, about this whole mishap, but every time we talk about inserting the feeding tube again she starts to panic. I am really considering calling the doctor and telling him we are going to try to go with out the feeding tube and see how she does. I don’t want her to regress like she did in Disney. I am fearful of her losing weight again but I am also worried about her psychologically too.

Here is what happened:

The other day I was giving Malia her 2nd bites session of the day. We had run out of the LA CREME yogurt that we normally use in her bites sessions so my husband went to the convenience store up the street and bought yogurt up there. Of course it was LOW FAT so I decided to put about 1/4 tsp of benecalorie in the yogurt to give it a little calorie boost. The yogurt also had some chunks of fruit in it. Her normal yogurt doesn’t have chunks of fruit in it. So this was also new. I tried to keep the chunks in the cup while I was feeding her so that she would not have t0 eat the chunks of fruit.

Well, I was half way through her 35 bite session when  all of a sudden my daughter started pointing to her stomach. In bite sessions you are told to ignore what she is doing and focus on her eating. If she starts misbehaving or even if she has to go to the bathroom if you are half way or close to the end of bites you’re not supposed to pay attention those things. Sometimes kids can fake having to use the bathroom to get out of bites etc.  so it is hard to tell if the child really has a problem or not. Of course, if the problem continues you can address it but at first your not really supposed to pay attention to it. So, I ignored her stomach pointing. The next bite I gave her was the yogurt. Not but two seconds later she began to throw up. I asked her if she was ok and tried to clean it up but she threw up again…and again. The final time she threw up out came the feeding tube…through her mouth. I told you this was going to be gross. I had never seen anything go in a nose and come out the mouth before. Not in person. Especially not my child. When crap hits the fan sometimes I tend to freak out. So, of course, I start panicking and calling  for my husband to come help. When I saw that the tube was hanging out of my daughter’s mouth I immediately took the tube that was coming out of her nose and pulled the tube out through her nose. I didn’t know what to do. I just kept thinking, “Pull it out. Get it out.” She gaged a little bit but I finally got it out and threw the tube aside. I was mortified! Never did I think something like this would happen. But it does. It happened to us. I felt so terrible. She was covered in throw up from her hair to all over her out fit. I ran her up stairs and gave her a bath. She told me afterward that her tummy felt much better and that she didn’t like the yogurt I gave her. I am not sure what went wrong. Was it the Benecalorie? Was it nasty yogurt from the connivence store? Who knows. All I know is that I just saw a feeding tube going in my daughter’s nose and coming out of her mouth and then I had to pull it out. It was not our finest hour with the feeding tube.

After the whole fiasco I stopped doing her bites but I became immediately concerned that she had just expelled a lot of her daily calories all over the place and now she wasn’t going to absorb them into her body and get the nutrition she needed. I also got nervous about her mentally. Was she ok? Worry, worry, worry. I feel like being a FTT mom that I am always worrying.

Malia seemed ok but when my husband and I were discussing when to re-insert the tube she flipped out. She begged us not to put it in. She always begs us not to put it in but this time…because of what happened…I listened to her. We came to an agreement that we would not insert the feeding tube if she would finish drinking an entire Boost drink and eat one more session of bites (minus the nasty yogurt). She took her bites and happily drank her boost drink that night. We did not insert the feeding tube.

I think that this last experience shook me a little. I want to be able to help my daughter gain weight…. but I don’t know…not like this. This experience was a little too dramatic for me. We should have inserted the tube again tonight but we didn’t.  For only a 100 calories a night? Is is worth the aggravation anymore? I don’t know if it is. Malia has two more weeks till her next weight check and her next phone call check up with the nutritionist at CHOP. I might see if I can get that moved up. I am a little torn as what to do next. Hmmm…To Tube or Not to Tube? That is the million dollar question.

Meeting Tinkerbelle

Malia at the Bibbidi Bobbidi Boutique

Chef Mickey Character Breakfast

Malia and I at the Boutique

Meeting the big cheese himself...Mickey Mouse

DISNEY WORLD:

The land of Mickey Mouse. The home of Cinderella. Where fantasy meets the world and innovation is on every main street. This is the place where all your dreams come true! If only Mickey Mouse wasn’t just a sorcerer’s apprentice and he could actually make my one and only dream come true…that my child would actually want to eat FOOD! But…alas…Mickey Mouse was far too enchanting and exciting for my little one and sadly instead of granting my dream he actually contributed to her regression. As magical as Disney World was it unfortunately FastPassed us right back on the Feeding Tube. *Sigh*

So your saying, “Feeding Tube? I thought when you wrote last you said that she was taken off the feeding tube!?!?! What happened?”

Well, let me catch you up. Malia recently graduated CHILDREN’S HOSPITAL OF PHILADELPHIA (CHOP) FEEDING PROGRAM where she was re-taught the basics of eating in a fun and playful setting for one month. The intensive treatment was a god send and upon graduation Malia’s bad eating behaviors were disappearing. With her new form of structured meal times Malia’s appetite was up and she was beginning to eat like any normal child would. She didn’t pocket her food anymore and the stress from feeding time was only a distant memory. Last I wrote Malia was taken off the feeding tube temporarily and we were told to enjoy our vacation in Florida, tube free.

THAT WAS BEFORE DISNEY WORLD…

*SIDE NOTE: FYI *

Prior to our vacation this is the advice I got from the feeding team at CHOP for our Disney vacation:

1. Feeding sessions should continue to happen at least once a day while on vacation.

2. Feed her at least 10 bites out of her usual 25 bites during feeding sessions in Disney World.

3. Make sure the bites are HIGHLY preferred foods. ( I packed and brought with us applesauce and goldfish to use for her bites. I also packed her Boost drinks. But, I accidentally forgot to pack her Benecalorie…of course…so we had to go without that for the week.)

Hanging out in EPCOT/ITALY waiting for Illuminations to start

FAST FORWARD to Our Disney Vacation:

So I knew that I was going to have to give Malia these structured meals in Disney. No problem right? Wake up early…feed her…enjoy our day. Simple enough. Wow! Easier said then done when you have to wake up at 6 am to shower, eat breakfast, get ready and then catch a bus ride to a park before it opens. I probably skipped a few days of bites because there was just little to no time to do them. I have not been to Disney World since I was 12 years old. I am 29 now. That is a long time. Just as I was excited and wide eyed back then…I was even more excited now. So, of course, I wanted to do EVERYTHING and I wanted her to do EVERYTHING! Wouldn’t you? If any of you have been to Disney you know that you can try to do it all but you will end up running yourself into the ground to do it. Well, that is what I did. We saw every character. We stood in 45 min lines to see princesses. We went to every park and rode every ride we could. You get the point. So anyways, I found it very hard to fit in our scheduled sit-down meals. We were rarely at the hotel. I know what your thinking…you should have MADE the time. And I tried…really I did. But I am not going to leave a park where all my family is just to ride a 25 min bus back to the hotel to do a 15 min. meal time just to turn around and ride another 25 min. bus back to the park. No, I am going to just get us something to eat in the park so we can do more things. So I found that I was eventually doing structured meals late at night after we got back to the hotel when we were both tired and wanting to go bed. Not an ideal situation.

These are some of the issues with trying to accomplish structured meals on vacation:

1. Little to no time to do them

2. Finding the foods that she needed for her bites. (She can only have certain foods she was introduced to in the hospital)

3. EVERY yogurt was basically low fat and/or Fat-Free. What about the people who need fattening yogurt?!?! Seriously? Don’t get me started on my issues with the world going virtually fat free. Not everyone is obese. Some people need fat!! (Sorry, had to vent)

We had to take a picture with this Princess...after all...we have the same name!

Anyways, structured meals were not easy to do on vacation. Ok. No problem. She has been eating SO WELL she is sure to make up the calories at normal eating times….right? Wrong! Malia regressed back to every bad behavior and eating problem that she has ever had. She was completely distracted in the dinning hall. She would not sit still long enough for her to eat a lot of food and on top of it all she began”Pocketing” her all over again! Eating times in Disney became VERY VERY stressful. I seriously had horrible flashbacks to how life was prior to CHOP feeding program. By Wednesday I was in tears at lunch time. I could not get her to eat. I felt like EVERY child in the dinning hall was eating except for my child. I felt like I was the ONLY parent yelling at their child to sit down and focus on eating. I had tried everything to get her to eat.  I showed her pictures on my cell phone of her with the feeding tube and telling her if she didn’t eat she was going to get it put back in. I threatened that we were not going to any more parks for the rest of the day or that she could not go swimming. I even threatened too leave Disney on the next flight out if she didn’t eat. Threats only got her to eat two more bites. I have to be honest. Eating in Disney was a nightmare I would love to forget.

For those going on vacation with FTT children I would advise you to be very aware that you might encounter problems. I didn’t realize how distracted she would be on vacation. The last thing she wanted to do was eat. I don’t blame her. What would you rather do?

In conclusion, the ramifications of Disney were pretty bad. Our 1st follow up appointment with CHOP did not go so well. From the time she left feeding school till right after Disney Malia lost almost 2 lbs. She weighs only 26 lbs now. So after much begging and pleading  for them not to put her back on the feeding tube…they did. Malia is now back on 175 ML of Nutren Jr. for at least 2 weeks to a month. We will check her weight in a little bit and if she has gained a good amount of weight we will start to take her off the tube again.

So…unfortunately…I guess the name of my blog will not be changing anytime soon. It will still be…TALES OF THE FEEDING TUBE.

Disney World

In the end…aside from Malia not eating well, we did have a great time and loved being in Disney World. It was a blast and I would totally do it again…in fact I am already planning our return. Shhh! Just don’t tell my husband…LOL.


Malia

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