Days 4, 5, 6 & 7 of Feeding Tube Awareness Week!

We went on vacation to see Isabella's grandma in New Castle, Colorado and I slacked on finish Feeding Tube Awareness Week, so here are the last 4 days. :)

Day 4: How has your attitude/family/friends' attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions?

My attitude towards tube feeding has changed 100% since Isabella got her's put in. I was very against tube feeding for Isabella since she could always orally feed. I felt like I was letting her down when the doctors suggested that a gtube would benefit her. Looking back now, I realize this was one of the BEST decisions we have made for Isabella. I no longer have to fight her to take her medications twice a day, I am able to control her water intake, which is necessary to control her DI and she is no longer using precious energy and calories to eat, instead she is using these to grow.

My family and friends have been 100% accepting when we decided to get the gtube. I think that people seeing Isabella feeding through her gtube has greatly benefited people's perceptions. They ask questions and I am very open about answering them.

Day 5: Topic - The need for greater awareness in the medical community - Explain a situation where a clinician didn't understand tube feeding and what was the impact.

We have not run into this situation yet. But if we were to ever, I would be more than willing to explain the process and reasoning behind it.

Day 6: Topic - What do you want clinicians to know about the day-to-day life with a feeding tube?

That we as parent probably know as much or more about our child and her condition. Please don't talk down to me, that is just disrespectful. Also, read her chart before coming into the room, repeating my child's medical history over and over get's old really quick. :)

Day 7: Topic- Share your awareness idea.
Isabella competes in pageants around Wyoming. During the pageants I share her story.

Day 3 of Feeding Tube Awareness!

Understanding Life with a Feeding Tube - Explaining a day in the life/daily routine of tube feeding and all it requires.

Here is our daily routine with Isabella's feeding schedule:

Now that she has a GJ tube, Isabella is hooked up to her feeding pump 18 hours a day at a rate of 35-40 mL an hour. This is only temporary while she heals.

From 9pm to 3pm (on a typical day) she is fed Peptamin Junior (basically an expensive Pediasure). This is easier done when we are home, but I have gotten pretty good at getting it to work on the go. :) Here feeding pump has a pretty good battery life and it rarely runs out when we are on the go. The couple times it has, I've found places that let me charge it.

Every day at 8.30 am and 8.30 pm she gets medications. I administer these thru the g port of her GJ port. This is my absolute favorite thing about her feeding pump. We had to fight Isabella for 17 months to take her medications. Now it as simple as ever.

Day 2 of Feeding Tube Awareness 2012!

Why I have/my child has the tube they have now - a highlight on the medical conditions that require tube feeding.

Isabella has a condition called Holoprosencephaly (HPE) that was diagnosed at 20 weeks utero. HPE is a disorder characterized by the failure of the prosencephalon (the forebrain of the embryo) to develop. This is a very serious condition that can be fatal. Along with this condition she also has diabetes insipidus (DI), where she cannot control her sodium levels, epilepsy, and severe acid reflux. It was the severe acid reflux that caused Isabella to get her gtube when she was 17 months old. She was vomiting and arching in pain, so we rushed to Denver. They determined she had severe acid reflux and this caused her to be in horrible pain, so she had her gtube placed. At 23 months old she caught a severe stomach flu and we once again rushed to Denver. Since she could not keep anything down, medications included, she had horrible seizures and her sodium went sky high. It was agreed upon that a GJ tube would be the best option for our situation. The difference between a G and J tube are that the G goes into the stomach and the J goes into the intestine.

Feeding Tube Awareness Week 2012

In honor of our 1st year to participate in the annual Feeding Tube Awareness Week, each day I will be posting a topic and answer. :) <3 *Why awareness is important to my family - What would be different for me/my child if tube feeding was better understood?

Awareness is very important our family in regards to Isabella. We want people to understand her and if they have questions to ask. My biggest pet peeve is when people assume her diagnosis. I also believe that in order to gain awareness you have to be open with everyone. I don't hide Isabella's feeding pump, if she's hungry, she eats. I've had people stare, most ask and some pretend not to see it. It's an everyday part of our life that we must embrace. I love explaining how a feeding pump works, especially to kiddos. It's so neat seeing their faces when they realize how it works. Isabella received her g-tube the end of June 2011. This past month she ended up in the hospital unable to tolerate feeds, that's when we came to the decision that the G-J would be the best for her. Since the original placement she has gained weight and thrived. She no longer has to use so much energy to eat. We still give her food in her mouth and she loves tasting everything!