MommaMalia Blog: Tales of The Feeding Tube

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

Come pick it up!!!

Some time after 3pm CHOP should be on their way to our house to pick up the Feeding Equipment! What a great day! As you can see, by my charming letter I wrote in my last blog, our appointment confirmed that Malia will not need the feeding tube any more…..

Tube is picked up!!!!  I just wrote a terribly long blog about our appointment and in the middle of it they came to get the feeding tube!!!! I got to look over my blog post and possibly post in a two part series. LOL. That will come later. Today we celebrate. Tomorrow I’ll backtrack and fill you in on the details.

Watching Malia’s face when they picked up the equipment was priceless. She was smiling from ear to ear!!! Tonight, Malia gets the privilege of  deciding what is for dinner. She choose pizza. Good choice. Tonight or tomorrow the Feeding Tube Fairy will come! We can’t wait. Malia wants her to bring a Barbie Fashion Fairytale Dress Up Costume. We are going to write a note to the feeding tube fairy in a little bit and place the note in her room tonight so the Feeding tube fairy will know what to bring her. I am so proud of my little girl. Thanks to everyone for your sweet comments!!! I really appreciate you taking the time to follow my daughter’s story. I hope for those who are still on their feeding tube journey that you will be inspired by our story and feel confident that there is a light at the end of the tunnel. I couldn’t see it last year when I was in the trenches of FTT/feeding tube warfare but I can now. I’m here and it feels so good.

 

Dear Feeding Tube,

It’s been swell. We had our good times. We have had our bad times…a lot of bad times. You have served your purpose well. I have truly appreciated your help. Tomorrow you will be leaving our house. The POLL I have used as a coat rack will leave. The BACKPACK we cleverly nicknamed “BackPack” will be gone. The NG TUBES I had to shove down my screaming daughter’s nose will not have to be reordered. But….most importantly the PUMP that used to constantly beep in the middle of the night disrupting my beauty sleep over and over again…will disappear. I must admit that I am not sad to see you go. In fact, I am elated and over come with joy and relief. I know it will be tough with out you. Our future road may be uncertain. We may stumble and require many more doctor’s appointments. We are not out of the woods yet. and still have a long way to go. But I promise you feeding tube, my family, will be able to make the next leg of our journey…without you. I will work tirelessly to make sure that you never have to visit my daughter again. So as I smile, reflecting on this long journey we have had together, I bid you a long awaited farewell. You are no longer welcome in my house. Please do not come back. Goodbye Feeding Tube. Goodbye.

Sincerely,

A Now Former Feeding Tube Mommy

 

Once again it has been awhile since I have posted so I am going to try to catch you up.

Wow! What a busy time it has been in our lives. Malia has started pre-school. As a stay-at-home-mom it is hard to let her go somewhere with out me during the day but it is fun to watch her make new friends. She has been doing very well in school. I have been keeping tabs on her eating with constant updates from her teachers. They have reported to me that she eats her snacks very well and have not had any problems getting her to eat or with pocketing. My daughter has recently befriended a little boy in the class and struck up a little romance.  He asked her to be his girlfriend one day and she accepted. LOL She came home the other day and said she had a boyfriend. My husband and I thought it was really cute. We laughed when she couldn’t remember what his name was. Ahhh, children at this age are so innocent. The teacher told me they are best buddies in class. They sit next to each other during snack time, eat together and chit chat. They believe that he is a good influence on her eating.

Malia goes to back to CHOP in November. I will let you know what happened. I think we are going to get a good report. She is doing very well on her own. Bites are annoying but helpful. She is showing great progress in wanting food and pockets less. Her eating style is still very slow but hopefully, as she gets older, that will improve too. If CHOP decides that she is doing well with out the feeding tube then I will be able to call the CHOP supply rental place and return all of the feeding tube supplies!! Oh happy day! Hopefully CHOP will feel confident that she will not need a feeding tube any more.

I have already been preparing Malia for the “FeedingTube Fairy” to visit our house after the feeding supplies have left. She is VERY excited. We are going to Target this weekend to get ideas on what prize she may want the “Feeding Tube Fairy” to bring her. I am making a big deal about this and hyping it up. I want her to feel a great sense of accomplishment. FTT has been quite a journey for all of us but mostly for her. She deserves to be happy and to not fear the Feeding Tube anymore. She truly is my little hero. She has had to endure a lot. I can’t imagine what it is like to have  a feeding tube inserted down your nose and then have to wear it on your face like a scarlet letter. It is not like she is a little baby who doesn’t really know what is going on. She is 3 years old. Fully conscious of the tube…totally scared of the tube. My baby. She is so brave.

Here is a link to my Blog about what a “Feeding Tube Fairy” is: https://mommamalia.wordpress.com/2010/05/22/tales-of-the-tube-pics-at-chop-and-the-tube-fairy/

* Side note: This past weekend I joined over 2,200 walkers and crew in the Susan G. Komen Breast Cancer 3-Day Walk in Philadelphia. It was one of the greatest experiences of my life. Walking 60 miles and raising $2,300 to participate seemed like a daunting task back in April when I signed up to do it. Through perseverance and determination I was able to help fight against Breast Cancer and also personally reach goals mentally and physically that I thought I could reach. It was amazing! You should try it sometime. I am including in this update a few photos from my walk. Enjoy!!!

Malia visits me in holding before closing ceremonies. She was cheering on the other walkers just arriving after walking 60 miles in 3 days.

My mommy walked for me because some day I will have boobies and she doesn't want me to have to grow up with cancer or knowing someone with Breast cancer.

My family came out to support me during my walk.

My teammate and I after finish our walk on the final day

This is a house along our walking route that was decorated for our Breast Cancer Walk. We got so much "support" on our walk from everyone. It is great!

 

I just thought I would add a quick blog about how tired I am of this whole FTT mumbo jumbo. I am really tried of the whole thing. I am tired of giving “bite sessions,” tired of fighting with my daughter not eating, tired of the doctor’s visits….I am just tired of everything. And in my tiredness I have wondered, “When is all of this going to be over?” It should stop eventually? Right? I mean, there should be a day that my daughter will magically want to eat better and/or magically gain weight…right? (Fingers crossed, fingers crossed, please, please, please) Well, even if she doesn’t gain weight well…there has to be a day where it is not as critical that she eats such high calorie foods and in special therapeutic ways? Oh, I hope there is a day when I can just leave this craziness behind and feed my child like normal. AND NOT HAVE TO WORRY ALL THE TIME ABOUT IF SHE IS EATING ENOUGH! I find that I am constantly Facebooking these few words all the time…”I hate giving bites!” Oh and this as well, “I LOVE FTT….NOT!”

You know, I look at other families with small children who never worry about their child during meal times. Such as when their kid leaves a little bit of food on the plate…it’s no big deal. These parents don’t have to measure out food, record what their kid is eating and feel paranoid that their child isn’t getting enough calories or wonder if their child is going to have to go back on the feeding tube. Their child eats. Put a pizza in front of them and they eat it. No problems, no fighting…they just eat. That is a foreign concept for me. Our meal times are all ways a struggle. What I wouldn’t give to have a struggle free dinner. Jealous of these “perfect” meal time families? I am a little. They just don’t know how much easier they have it.

We have been in the FTT, Feeding Tube, Feeding Therapy game for over a year now. The FTT fighting warrior in me must be on vacation right now because have had enough. I am ready for it to be over. But, I feel that I am entitled to feeling a little run down…right? Got to give me that. Even warriors got to get a break everyone in awhile. Ever feel this way? Tired of it all? Just wondering.

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