MommaMalia Blog: Tales of The Feeding Tube

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.

I haven’t blogged in a long time. I need to update how Malia is doing! There is a lot happening at our house. Malia is still small in weight. She is slightly under the 10th percentile. But I am not letting that stress me out any more. The older she gets…the less I worry. She will be 4 1/2 in June and is developmentally right on point. She is high energy and acts like a normal 4 year old is supposed to act. She did finally creep up into the 29 lb range!  Big accomplishment. We are going up…not down…that is always a plus. I have to check her and see if she hit 30 lbs. She weighed herself yesterday with clothes on and she was 31 lbs…but that was with clothes so I think she is still in the 29 lb range. I will weigh her later today.

We have been relaxed, to say the least, with her therapy. I have been relying more on Benecalorie to help us during the day. I find it harder to give therapy bites on a consistent basis with an active on-the-go lifestyle. It was much easier to accomplish multiple bite sessions as a homemaker who stayed home all day and who’s main job was to feed my child. Now that I am out of the house working…and she is at work with me…giving bites outside of the home…doesn’t work well. Packed lunches is much better. So, BeneCalorie has become my best friend.

Another thing we have been dealing with is the aftermath of having a child who pocketed her food most of her life. Her teeth are now suffering big time. We have had 5 fillings and a mini-root canal where she was put to sleep for oral surgery. She has a new “grill” in the front of her mouth, as I like to say. LOL! Poor kid can’t get away from hospitals. For the record….we do brush her teeth but the dentist said that “Pocketing” is really bad for the mouth. A kid who pockets needs to have extra brushings and constantly be rising their mouth out with water after every meal. We didn’t do that. *Note to other mother’s with kids who pocket….don’t forget to brush their teeth after every meal and rinse the mouth out with water if they eat something and you can’t brush their teeth. Oral care is sooooooooo important!!! Nobody told me that…so I brushed her teeth at night and sometimes in the morning but I didn’t obsessively brush her teeth, like I should have.

On the bright side: Malia is eating more and more every day. She rarely pockets anymore and when she does….she is old enough now to recognize what she is doing…and she stops right away. At Easter dinner this year she sat down and ate two very large raviolis all by herself with no help. That was a mile stone b/c usually she is too distracted by everything going on that she refuses to eat. But this year…she cleared her plate….on her own free will and “Want”! Even though the food level was small…the action…was a huge accomplishment. Her “want” to feed herself on her own with no help, doesn’t always happen like it did on Easter, but she is SLOWLY correcting that behavior. But the main thing is that she IS getting better and I think that this is happening largely due to the fact that she is getting older and smarter every day. Now she is recognizing that she has a problem and she trying to correct herself.

Maila’s feeding is a work in progress. But aren’t we all works in progress? We take one day at a time. One accomplishment at a time. Clearly she is much better now then when I first started blogging. We still have a long way to go. Accomplishing the will to “want” to eat is our biggest hurdle yet. However, Easter dinner proved she has it in her and I think…we are well on our way to crossing that bridge very soon.

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)


Well, we are back to eating bites again at least twice a day. Malia gets bites at breakfast and lunch. She eats snacks during the day and eats dinner with the family at night. If she starts to gain a lot of weight…I def. know that I can’t slack on giving her structured bites. Just relying on regular unstructured meals won’t cut it. I also upped the amount of bites from 35 to 40 bites. It takes us about 30 min to serve her the bites…it can take longer if she pockets a lot. 12 min. or so to prep the bites and 10 min. to clean up after the bites.

Sample of what she had for breakfast:

*Feed Cup#1 – Cup #5 (Repeat 8 times)

Cup #1: One large Strawberry chopped and sprinkled with sugar

Cup #2: La Creme Yoguart

Cup #3: Whole Wheat Toast w/ Nutella cut up

Cup #4: Applesauce

Cup #5: Cream of Wheat w/ Whole Milk and Honey

As you can see…bites does give you a well rounded nutritious meal and it is a lot of food. (Even though it doesn’t look like it presented in the cups)

Here are some food items I use with her bites:

1. LA CREME YOGUART (Found at ACME/ALBERTSONS)

Serving size per cup

Calories: 140  Total Fat: 5g Carbs: 20g  Protein: 5g

2. NUTELLA (Found in the Peanut Butter Isle)

Serving size 2 TBSP

Calories: 200  Total Fat: 11g  Carbs: 22g  Protein: 3g

HAPPY VALENTINES DAY!!

HAPPY VALENTINES DAY TO ALL!!!

I hope everyone is enjoying their Valentine’s day. I don’t have too much time to write today. I have been REALLY sick this past week and it has set me behind in every aspect of my life. But, I promised I would update you on Malia’s new weight. I finally got her insurance again and was able to take her to the doctor’s office.

Age: 4 and 2 months

Weight: 12.7 kg (28lb)

height 0.96 m (3′ 1.8″)

2.07% growth percentile for weight

9.52% growth percentile for height

6.25% growth percentile for BMI

As you can see her weight dropped 2 lbs from November when we last saw the feeding team. It is a little set back but we will pull it up. I keep reminding myself that EVERYONE has set backs every now-and-then. We had a set back last summer when we went to Disney World. It will get better. As far has her mental development, she is fine. At Age 4 check up they check hearing and sight. She passed both of those tests. She even told the lady during her sight test that the moon she was pointing to was a crescent moon. Took the nurse by surprise. She was right. It was a Crescent shaped moon. HAHA. That just proves that an FTT kid can be smart as a whip!

We have an appointment in the first week of March to visit the feeding team for a check up. I am going to do my best to put some weight on her so they don’t even remotely consider tube feeds again. I knew, from home weighings, that she was around 28.5 lbs.  So, I knew I was going to get a number similar to that. The only reason I think she dropped a little more weight is because I have been sick with a stomach virus for the past few days and it was REALLY hard to feed her well, being sick. For two days I could barley pull my self off the couch and I only got off the couch in order to tend to her needs and feed her. Other then that…I couldn’t do too much. It’s not easy taking care of kids when your sick. It is almost like you have to be super human with a super human immune system so you NEVER get sick and can ALWAYS be there to clean house, take care of the kids and cook dinner when your husband comes home from work. If I go down…the whole house goes down with me. LOL The life of a Homemaker.

Anyways, I kinda went off on a tangent. HAHA. But if you were wondering what her new weight was for comparison…there it is.

HAVE AN AWESOME AND WONDERFUL DAY!

If you have been following the news you know that the East coast just got hit with A LOT of snow. So I am taking this wonderful snow day to up date my blog.

I am realizing really quickly, that when your child comes off the feeding tube only half of the battle is over. There is still a LONG road ahead. Trying to keep the feeding tube from coming back is tough. The Tube gives you a crutch. It allows you to to feel confident that your child is getting the nutrition they need no matter what. After the feeding tube is gone, you don’t really know if they are getting enough. You can get their weight checked and/or you can keep a log calculating daily calories all in hopes that you don’t see a dip in their weight again. Even with all of that, there will always be a sense of worry and doubt hanging over your shoulder. I don’t think that will ever go away.

Last time I wrote, I shared that I felt like I was in a rut. The battle against FTT was wearing me down BIG TIME!!!! All that worrying and doubt was getting to me. I blamed myself for my daughter’s slight weight regression.  However, I finally realized that no parent is super human. We all get tired and run down. Carrying your child’s FTT/Feeding Tube situation on your shoulders is NOT AN EASY THING. It is taxing. It’s tough. It sucks!!!! There is no easy way to say it but is not a fun situation to watch your child go through what they are having to go through.

I just want to share that if you ever feel run down…sick and tired…frustrated with your FTT/Feeding Tube situation….TRUST ME…your not the only one! I have been there. Heck, I am there.  It is not easy having to flick the on switch all the time and always be on top of things. What I am trying to say is that it is ok to feel tired. It is ok to feel run down. Don’t feel ashamed. Don’t blame yourself. Accept help from others. Take time to relax. Vent if you have to. Vent to me if you need to. But never give up. Keep fighting the fight.

 

Hugs,

Tianna

 

Maila does not not have insurance right now. I am still having issues with the state. Malia has government insurance which is great insurance but having it can have it’s draw backs. There is a LOT of red tape and sometimes you can fall through the cracks and it takes a long time to fix issues. That is what is happening to us. Someone entered the wrong information while processing our paper work and my daughter got dropped from her insurance. They are fixing it but it is taking awhile.  Unfortunately this is delaying medical care….but I can’t complain too much because it is government insurance and the insurance is great. Her doctors are great…the care is great. So, I am just waiting for everything to work its self out and hopefully we can get Malia seen by a doctor really soon.

However, in the mean time, I weighed Malia “UNOFFICIALLY” on the scale at home and was suprised by the weight…but not in a good way.

The last time she saw a doctor, back in the fall, she FINALLY reached 30 lbs and was in the 10% for her weight. She got taller and the doctors loved her progress. A few weeks later I started helping my husband at work and had to slow down on the bite sessions we were having. Thus reverting back to her eating food on her own, unstructured. I weighed her in December and she dropped weight to 29.5 lbs. Not much, but I was not too concerned because she does that sometimes. Holidays hit….her birthday hit and life got crazy busy. I new she was not eating as well and bite sessions slowed even more because we didn’t have as much time to focus on them. If any of you do therapy bites….you know it takes a lot time out of your day to do them. So I was a little afraid to weigh her again on my home scale. This is when I started to become nervous that she was loosing more weight. Well, I went ahead and weighed her a few days ago and she dropped to 28.5 lbs. I don’t know how this is in reference to her percentage since I can’t take her to the doctor’s office. I blame myself for her regression and realized that she isn’t ready to eat in unstructured ways all the time. The structured meals work. Even though I don’t always like to give them and I think they are tedious…they are necessary and I should be doing them more.

It just goes to show you that FTT can wear you out. You can get burned as a parent constantly having to deal with feeding tube woes, therapy, doctors visits and so on. Always having your game face on all the time isn’t as easy but it is necessary. If you ever get burned out by FTT, don’t worry I have been there…heck, I am there! Don’t worry or feel bad. It happens. We are all human and these things happen. I remind myself every day that I have to remain positive and pro active for my child in order for her to be healthy and thriving. That is why Malia and I are back to doing our bites more often.   Hopefully, in a few weeks, I will be blogging about how her weight being better and how we are back on track.

If you are tracking your child’s weight with my child’s weight…28.5 lbs is the new number. Malia is 4 now.

Hope this blog finds all of you and your children well!

Hugs, Tianna

Do you feel as if you enable your children sometimes in their FTTness? I do. Malia has such bad habits when it comes to eating. Sometimes I feel as if I am enabling those bad habits.

I will give you an example. When Malia eats an “unstructured meal” she does not pick up the food and feed herself. This happens quite often. She will feed herself one bite of food. When her mouth is clear she does not pick up the next bite and feed herself. She has to be reminded to do that.

So how do I enable this behavior: When she fails to continue eating I will pick up her utensil…put the food on the utensil and I feed it to her. Sometimes, I do put the food on the utensil and make her pick it up and feed herself. But, I am still helping her to eat. I feel that if I do not help her that she may go through an entire meal time with out eating anything! Also, she is so slow at eating that I feel if I did not help her out that she would take all day to eat one meal. On the flip side, I can see, that by helping her I could be continuing her bad behavior. I believe that she may not be picking up her food because she knows that I will pick it up for her (Sneaky kid). Now I am not just enabling her bad eating habits…I am helping her be LAZY too!  But, I am really not sure if that is the case. What I do know is that, by helping her eat, I am not encouraging her to eat on her own free will and that can’t be a good thing. After all, someday  Malia will have to eat with out the help of others.  And most importantly, WANT to eat, with out the help of others.

What are your thoughts? Am I enabling her? Or am I just doing what any FTT parent would do…help their child eat?

Do you do things that could possibly enable your child’s FTT and bad eating habits? What are they?

I took Malia to see Santa last week. When I went to replace her picture with last year’s picture I saw that last year she went to see Santa with a feeding tube in her nose. (WOW! How quickly you can forget things once they are over.) When I looked at her picture this year…I smiled really big and thought to my self, “Oh what a difference a year makes.” Christmas came early for us this year. Thank God there will be no more feeding tubes in our Santa photos =0). Hope you have a Merry Christmas and a Happy New Year!!!

~Tianna

2009 Santa Photo w/ Feeding Tube

 

2010 Santa Photo Post Feeding Tube

Hello all,

I hope that your Thanksgiving holiday was great! We ate a wonderful meal at my mother-in-law’s then I went and Black Friday Christmas shopped from 10PM to 7Am!!! I swear that someday we will be skipping Thanksgiving all together and going straight to Christmas. All of these stores opening earlier and earlier every year is getting to be ridiculous. Toys R Us was open at 1oPm! I got there at 11PM and waited in line OUTSIDE in the freezing cold till 12:30AM just to get in the store!!!!! That is how long the line was! INSANE!!!

So what is going on with us….A lot, as always. I used to babysit at home to make extra money but recently stopped doing that. I strictly became a full time “Homemaker” around August. Hadn’t been a full time Homemaker since she was 1 year old. I loved every min. of being at home with Malia and was excited to being doing just that. Now that I was not babysitting, I was able concentrate on just Malia and her needs. We got a lot of bite sessions in and my house was cleaner. Unfortunately, my husband still wanted me to bring in some sorta income. He didn’t like the fact that I quit babysitting. Our family business is expanding and he really wanted me to come work there.  So 3 to 4 days a week Malia and I now head to work.   I can only stay there for so long. She gets too stressed out if I put in a full day. Yesterday I worked from 11am to 5pm. She fell asleep in the car on the way home and refused to wake up until 8pm! She was up all night! It has been an adjustment for the both of us. I don’t mind helping out at the business but I really did like being at home.

Malia is also not getting her Bite Sessions in as much. Eating at the shop is very distracting to her and she tends to not eat very well there. She takes a really long time to eat when we don’t eat in a “Structured” way. This leads me to share with you one of a few issues we have been having with her eating, Post Tube. We shared this concern with her doctors at her last feeding team appointment. I hope to share with you more post tube issues and concerns we are dealing with in later blogs.

One of our biggest obstacles is how SLOWLY Malia likes to eat in her UNSTRUCTURED meal times. Sometimes I will literally sit for over an hour trying to get her to eat dinner. She will accept the food but chews it so slowly  that l I swear she is trying to turn the food into atoms before she swallows them. Plus, I feel like a broken record telling her time and time again to chew and swallow. There are times she will just stop eating all together and I have to remind her to continue eating. She gets very distracted during meal times and tends to forget to chew and swallow. She does this slow eating at the shop too and it is frustrating because I can’t focus on her eating as much as I could have at home and i feel like she is not getting enough food during the day.

My husband and I asked the feeding team doctors if some children just don’t have that urge to want to eat. You know, that desire to WANT to eat food. Like a chemical is not there in their heads to make them want to eat. We feel, our daughter could care less about food and just doesn’t have that drive to eat like most people do. In our opinion, eating is a chore to her. So we were curious to see what they thought about this. The CHOP psychologist told us that some people are like that. Some people don’t have the urge to eat as much as others do. It is not necessarily a bad thing but for adults…but for children it…it can be a problem. She gave it a name but I can’t remember what she told us it was called. The Gastro told me that one of Malia’s problems is that she doesn’t drink a lot of calories. Some children who don’t eat a lot of food usually make up the lack of calories in their drinking. Since Malia doesn’t like to drink a lot and when she does drink, she prefers water…she doesn’t make up her calories with her liquid intake. That is why we really have to push the food. And that is why….at one point…when she wasn’t eating well or drinking well we had to resort to supplementing her with the feeding tube.

Hopefully, Malia and I can find our grove,with my new work schedule, and working out of the house will not effect her health negatively.

I hope that your Christmas season is merry…and yes, I say CHRISTmas! LOL!

What ever holiday you celebrate may it be awesome!!!! I know ours will!

Oh, Malia turns 4 very soon. December 24th. Yes, she is a Christmas eve baby!! My little present from God. It’s a busy season for our family and I love every min. of it. =0)

Hugs,

Tianna

Malia

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 15 other followers

%d bloggers like this: