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.
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