MommaMalia Blog: Tales of The Feeding Tube

Posts Tagged ‘weight

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)


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!

Today is a short Blog. I know your super excited. LOL I tend to be long winded sometimes and I know my blogs go on and on. I’m sure most of you just skim through them. j/k I don’t blame you. I would too. HAHA! Today, I promise, to be brief and get to the point.

UPDATE:

We had our weight check yesterday. Malia’s nutritionist from CHOP just called. Malia stayed the same weight as the week before so he said that was good. However, he does not want to pull her off the tube feeds just yet. He is worried she is going to regress and lose weight again. SUCKS!!! I really hate this. Tonight Malia will get a new feeding tube. Poor thing. The insertion is the worst part of the whole process. Maybe I will buy her some ice cream to make up for all of this torture.

Here are her stats (7/28/2010):

Weight (KG): 12.4 kg

Weight (LBS) : 27 lbs 5.39 oz

Height (CM): 92.2 cm

Height (IN): 36.3 in

Told you it was going to be short!

Hugs,

T


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: