Continuing along with the Feeding Tube Awareness Week, being feeding tube dependent does not hold Ellie back.
Wednesday, February 12, 2014
Coping with Feeding Tubes
Today's #feedingtubeawareness week topic is on Coping:
Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?
Our daughter Ellie has had her feeding tube for 8 yrs, since birth. For us the most challenging part of life with a feeding tube happens to be on the mornings we need to get out the door the quickest or if the pumps have not been charged the night before. Also having one child with a feeding tube has reduced the challenges greatly.
When both Zach and Ellie were feeding tube dependent, the biggest challenge for me was how the kids were fed. Zach was bolus fed and Ellie continuous fed. I tried feeding both kids the same way and this did not work out at all. Zach screamed from hunger with continuous feeds. Ellie screamed because her stomach could not handle the volume of the bolus feeds. I eventually figured out what was best for each child and we worked around it.
To help make getting out the door quicker we have her formula recipe split into 3rds and mix using shaker cups. This allows for just around 500ml's in each cup. On our latest running days we simply pour her milk into the bag and place the empty cup in the fridge. Once in the car, the bag is primed and pump set, then started. If we are going to be out for a while I take her shaker cups with only the water and oil, and have the formula pre-measured in a ziploc baggie, then mix as needed.
With our daughter being the youngest, all our kids know how to help mix her formula, help with tube extensions, pumps, and which rates for day or night.
Ellie has a very good friend that has made her feeding tube journey easier for without knowing she was. This little girl one day decided that when ever she is playing with Ellie, she too is going to wear a little back pack. These two girls run and explore our housing area (on base) with their backpacks on and have been spies, going on picnics, hunting for (monster) footprints (they claimed) and had many other "backpack adventures."
Having a friend like this can do wonders for a tube fed child :)
Share how you and your family cope with the challenges of life with a feeding tube. What has made the journey easier?
Our daughter Ellie has had her feeding tube for 8 yrs, since birth. For us the most challenging part of life with a feeding tube happens to be on the mornings we need to get out the door the quickest or if the pumps have not been charged the night before. Also having one child with a feeding tube has reduced the challenges greatly.
When both Zach and Ellie were feeding tube dependent, the biggest challenge for me was how the kids were fed. Zach was bolus fed and Ellie continuous fed. I tried feeding both kids the same way and this did not work out at all. Zach screamed from hunger with continuous feeds. Ellie screamed because her stomach could not handle the volume of the bolus feeds. I eventually figured out what was best for each child and we worked around it.
To help make getting out the door quicker we have her formula recipe split into 3rds and mix using shaker cups. This allows for just around 500ml's in each cup. On our latest running days we simply pour her milk into the bag and place the empty cup in the fridge. Once in the car, the bag is primed and pump set, then started. If we are going to be out for a while I take her shaker cups with only the water and oil, and have the formula pre-measured in a ziploc baggie, then mix as needed.
With our daughter being the youngest, all our kids know how to help mix her formula, help with tube extensions, pumps, and which rates for day or night.
Ellie has a very good friend that has made her feeding tube journey easier for without knowing she was. This little girl one day decided that when ever she is playing with Ellie, she too is going to wear a little back pack. These two girls run and explore our housing area (on base) with their backpacks on and have been spies, going on picnics, hunting for (monster) footprints (they claimed) and had many other "backpack adventures."
Having a friend like this can do wonders for a tube fed child :)
Tuesday, February 11, 2014
Celidah's Neuro Appt...
Yesterday Celidah had a neurologist appt due to some minor ticks she has and her migraines. After talking with her new neuro for a few minutes he let us know that her ticks while evident and noticeable are clearly not seizure related. He is however more concerned about her major increase in migraines. He has given her prescription meds to help at the onset of her migraines. We also left with an order for an MRI to make sure that her migraines are just migraines.
At first Celidah did not understand that an MRI is standard and is routinely given for anyone with migraines that has a sudden change. Once I explained this to her and let her know I have had multiple MRI's for my migraines, she was not as bothered by the idea of an MRI. Regardless of how the MRI results comeback, the neuro will call us and let us know about the next step.
Yesterday Celidah had a neurologist appt due to some minor ticks she has and her migraines. After talking with her new neuro for a few minutes he let us know that her ticks while evident and noticeable are clearly not seizure related. He is however more concerned about her major increase in migraines. He has given her prescription meds to help at the onset of her migraines. We also left with an order for an MRI to make sure that her migraines are just migraines.
At first Celidah did not understand that an MRI is standard and is routinely given for anyone with migraines that has a sudden change. Once I explained this to her and let her know I have had multiple MRI's for my migraines, she was not as bothered by the idea of an MRI. Regardless of how the MRI results comeback, the neuro will call us and let us know about the next step.
Sunday, February 9, 2014
Feeding Tube Awareness Week 2014
Once again it is Feeding Tube Awareness Week and the theme
for this year is “Nothing Can Hold Us Back.” Looking back over the years we
have learned and grown so much as a family.
If had been told eleven years ago that I would have a child with a
feeding tube, I am not sure how I would have responded. Had I been told I would
have two child at the same time with feeding tubes, I would have told that
individual they were crazy, then walked away.
What is the biggest benefit our family has seen through tube
feeds? Healthy kids! Kids that like any other child his or her age. For our
daughter, her tube has allowed her a way to eat, thrive, grow, and get the
calories her body needs when she has so few foods she can eat.
Zachariah is what is considered a feeding tube graduate,
because his tube was removed shortly before his 4th birthday, and he
never looked back. He was born with a congenital heart defect and was needed
more calories than he could eat by mouth. He also needed an elemental formula
to start with.
When Zach was six weeks old we discovered he was having
episodes of very rapid breathing followed by very shallow breathing. He was
also having what we thought at first were cyanotic episodes causing him to turn
blue. During his first readmission to the hospital the doctors and specialists
were stumped about the cyanotic coloring because his oxygen levels, blood sugar
levels, well everything levels were great. That is until they did an EEG and
ultrasound of his heart. The ultra sound prompted further tests and showed he
had a VSD.
Originally the cardiology team was convinced he would need
open heart surgery due to the severity of his VSD. After listening to the
Priesthood Blessing, I too was convinced he would having open heart surgery.
Why? He was blessed with the strength and endurance to overcome all upcoming
surgeries and procedures.
Can we say freak out time? He was blessed not to have open
heart surgery, yet by his 4th birthday did endure eight surgeries,
and multiple additional procedures. Today he is nearly 10 and still feeding
tube free and his heart is beating strong and healthy.
Looking back again, our youngest, also known as our
Ellie-Bug was born October 15th, 2005. Everything looked perfect
when she was first born. Since she was born at 33 weeks and my water broke
early she was taken back to the NICU for three days of observation and
antibiotics to prevent infection. Almost immediately it was clear that
something was not quite right. Within the first 24 hours of birth our perfect
looking daughter was in the hardest fight for life. We would not know for five
weeks if she even stood a chance of coming home.
Unlike her brother, Ellie-Bug required a feeding tube due
suck and swallow problems; silent aspiration, bronchial, tracheal, and laryngeal
malacia; and she was easily fatigued. During her NICU stay we discovered she
was insanely allergic to milk protein. So allergic that she could not even
handle breast milk. Her first time nursing caused such a severe reaction that
she nearly coded and in her struggle to breath, her lungs collapsed again. We
would not find out until around her 3rd birthday the severity of her
food allergies, because before this she refused to eat.
She now has a GJ tube because of gastroparesis and her
bodies inability to digest food in the stomach like normal people do. If she is
fed her formula through her G tube, she gains no benefit whatsoever. The
formula either is dumped back out into a special bag called a Farrell (venting)
or vomiting bag, or if her body “accepts” it, she still gains no nutritional
value. However, through her J-tube, the formula goes straight to her intestines
and she is now growing and gaining weight again.
In fact, she is playing catch-up and catching up so fast
right now that in the last 2 months she has out grown all her 5/6 clothes and
is now in size 8. This child suddenly has almost no clothing that fits.
Captain Sparkles???
Oh my goodness, I have 3 boys bouncing out of their skin right now. Apparently there is someone called Captain Sparkles in the Minecraft world that is "famous" and they are in the same server. They are trying to hard to contain their excitement while jumping up and down with joy and keeping their screams silent.
This morning the near silent screams are a huge blessing for me as I have migraine trying to sneak in, while I am desperately fighting it back. Not only that, with all air pressure and weather changes in the past couple days, my body is struggling as any movement feels like a roller coaster ride. Oh and even doubling the Zofran, my stomach is still not content to stay still but insists on flipping as well.
UGH!! I hate migraines, vertigo, and nausea!!
Oh my goodness, I have 3 boys bouncing out of their skin right now. Apparently there is someone called Captain Sparkles in the Minecraft world that is "famous" and they are in the same server. They are trying to hard to contain their excitement while jumping up and down with joy and keeping their screams silent.
This morning the near silent screams are a huge blessing for me as I have migraine trying to sneak in, while I am desperately fighting it back. Not only that, with all air pressure and weather changes in the past couple days, my body is struggling as any movement feels like a roller coaster ride. Oh and even doubling the Zofran, my stomach is still not content to stay still but insists on flipping as well.
UGH!! I hate migraines, vertigo, and nausea!!
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