I wanted to share a little more history about Whitney so you can get to know her and her family better!
Whitney’s initial diagnosis was right-sided congenital
diaphragmatic hernia. Not all babies
born with that have feeding problems.
Every baby is different, half don’t survive, most have lifelong medical
problems, and some come home doing great.
Whitney is a survivor with concurrent medical struggles.
She had severe pulmonary hypertension and hypoplasia. When she was born, she couldn’t cry, so the
holes in her heart that are open in the womb did not close and function
normally when she was born. So she has a heart murmur because of those holes. When
she came home from the hospital, she was on a nasal cannula, needing oxygen supplements
for 9 months. She has had two cardiac catherizations. The first one, they ballooned open her left
pulmonary artery and weaned her off the oxygen and onto a special medication. She was followed up with quarterly echocardiograms
and exams. A year later she had another
one done to balloon open the left pulmonary artery and to put a stent in her
PDA. She was weaned off the meds at that
time too. Now she goes in for yearly
echo’s and exams. Whitney lungs have
grown and are pretty much a normal size and function. She doesn’t seem to have much issues
there. She is scheduled for a lung
function test soon though.
Whitney also has some GI medical issues. Not only was she overcoming severe oral
aversions, but her stomach was not working well. It’s amazing that she is doing as well as she
is considering most of her inside’s (major organs) were shifted around and not
in the correct spot while they developed.
With all of Whitney’s vomiting, we always suspected she had delayed
gastric emptying and gerd. She has been
on reflux meds almost her whole life now.
And on and off various other medications to help her not to vomit so
much.
Whitney has had a couple of Modified Barium Swallow studies
done. Those showed her aspirating, but
she screamed throughout the whole test.
So we had to thicken her formula to a nectar-honey thickness. It added calories too, but it was much harder
to suck out.
Whitney had a few endoscopy’s done to check for structural
malformations, allergies, and to take biopsy’s.
During the first one, they couldn’t even get in to see the second part
of her intestines because her stomach was a strange ‘J’ shape. The next one, they tried botox injections
into her pylorus. The last one done
showed everything looked pretty normal and no allergies.
Whitney has had several chest and abdominal x-rays. She needed a couple barium tests and small
bowel follow through. They put the
barium into her stomach vs drinking it to make sure she didn’t have any
structural abnormalities, like re-herniating, and tooke x-rays throughout the
test. There is always a chance that Whitney could
re-herniate, meaning her intestines could slip through her Gore-tex patch and
into her chest because as she grows, the patch does not (that is what her diaphragm
is made of) and need another surgery.
Whitney had one more major abdominal surgery. The surgeon went through her CDH scar, making
it bigger to see her intestines and check for a bowel obstruction. She saw her intestines were covered in
adhesions (scar tissue from her initial CDH repair surgery). So they took all of that off and put in a GJ
tube. Whitney was in the hospital for 17
days, suffering from an ileus. She also
had to have that GJ tube replace about 6 times in the three months she had it
because it kept on flipping out of her intestines and into her stomach. So we had to go to IR and it was very
traumatic for Whitney to go back there alone and screaming the whole time.
Whitney had another endoscopy done that showed extra folds
around her pylorus which may affect her stomach emptying. She
also got a pH probe study done which showed mild reflux. Whitney then had a gastric emptying scan done,
which showed a delay. She only emptied
33% in an hour and it is supposed to be around 50% to be normal. So Whitney was diagnosed with
gastroparesis.
Whitney has been on a slow drip of formula for more than
half of the time that she has had a feeding tube. That means that her stomach was not able to
tolerate a bolus of formula. It had to be
pumped in very slowly throughout the whole day and night. Even with that, she would still vomit. But since June of this year, she has been
doing amazing with tolerating her bolus feeds of formula and homemade food
blends. Just recently she had come out
of her failure to thrive diagnosis! She
has also overcome her dysphasia diagnosis. As Whitney is getting older and stronger,
her body is working better. Her heart,
lungs, stomach, and intestines seem to be working great and she is now
medically able to receive the inpatient intensive feeding therapy to try to
wean her off the feeding tube.
Whitney has been through so many medical surgeries, tests,
procedures, and therapies in the past four years, it’s incredible. She was always so scared and sad to go to the
doctor’s office and the hospital. But we
have grown so much and are so grateful for everything she has overcome. This past year has been the most fun with her
and she is really growing into her amazing personality. She’s learning to have fun, laugh, and trust
others. Our family has been on a lot of
adventures this year in-between all the medical appointments and therapies and
other obligations. It’s been amazing to
watch Whitney become more confident in herself.
She has always cried and shown great anxiety in new places and around
new people. But this year she is much
more adventurous and friendly. We travel
to Arizona every quarter during our school’s break. There we love spending time with family, swimming,
bowling, museums, hiking, the park, seeing movies, and much more. Whitney loves going to her in-home co-op
preschool and going on many field trips with her class. She’s been to several different farms,
airplane museums and air shows, trampoline park, and many more parks. Whitney loves going to the San Diego Zoo and
Safari Park, SeaWorld, and she loved her first time at Disneyland! Whitney loves celebrating holidays and
birthdays with her family. Our favorite
thing to do here in California is go to the beach! Whitney loves to play in the
ocean and in the sand. This summer we
traveled to Nevada, Utah, Idaho, Wyoming, and Montana all in one trip. We saw Yellow Stone National Park and many
other great sites along with tons of extended family members. Back home we’ve been doing lots of swimming,
story time, craft time, and preschool.
Now the rest of the year will be focused on helping Whitney learn how to
eat and maintain her eating skills!
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