Reflection... Looking back
Life Changes…
In the end, looking back, you can see it’s the
load that can make the difference for good.
When you get a
diagnosis for your child that equates to them not being perfect, it takes time
to process and absorb. What does this mean? What kind of life will they have?
How will this affect their future?
My life changed
November 2006. I was going in for a routine 20 week check up. I already have problems with hemorrhaging
(bleeding) from 12-20 weeks. But I only spotted this pregnancy. Everything was
going well, I was anticipating being let off bed rest. To go on with my normal
pregnancy and my normal baby and my normal life. I knew at 16 weeks that we would be bringing
home our 2nd son. A brother for our 3 year old.
He was very excited to get his best friend.
At our 20 week
checkup, the doctor decided to do an ultrasound to make sure everything looked
good with the placenta. I was laying on
the table with my husband beside me, the doctor was looking very intently at
the monitor. After what seemed for forever, I asked about the placenta (as that
was the problem, right?), He moved the wand across my belly, “yup, the placenta
looks great” as he moves the wand back into its previous position, he paused
again and my husband pointed at the screen. I knew instantly that there was
something wrong with my baby.
There was a mass in
his abdomen. We were sent to a specialist that specializes in in vitro surgery.
He watched us every week for another couple of months. It was decided that
while our baby boy was growing, the mass was staying the same size. In vitro
surgery was ruled out. We were then sent to a high risk pregnancy doctor at the
University of Utah. After a few more weeks, it was decided that while our baby
indeed needed to have surgery, he would not need it until after he was
born. A phone call was made and a surgeon
was picked out. We still had so many unanswered questions. Why the mass? What
was the mass? What did this mass mean for our son?
After spending 3
months in and out of the hospital due to contractions, at 37 weeks, it was
decided that he was big enough for surgery. My induction date was set for March
13, 2007, two weeks early. Upon birth, it was confirmed that he was born with
an imperforated anus. Or, he had no bum hole.
We also learned that he had a deformed right ear lobe and possibly no
ear canal. Surgery was set for first
thing the next morning, he was to be given an ostomy bag while they figured out
where his intestine ended as it was not attached where it should have been.
HYRUM IS BORN
Hyrum was diagnosed
with Oculo-Auriculo-Vertebral Spectrum. In English, this means that Hyrum is
non-symmetrical. He also has a Microtia/Artresia of the right ear. We felt
blessed as there are many other problems that are usually pronounced with these
two deformities, none of which Hyrum has had.
His main issue at the time was that he was born with an imperforated anus.
Hyrum had 14 surgeries to correct this from the time he was born until he was
15 months. Hyrum's 15th surgery was the removal of very large tonsils and
adenoids and the removal of a facial fistula (or skin tag) done at 12 months
old.
Hyrum also has had a
hard time with narcotic pain medications. He has stopped breathing about 3-4
times. Most doctors are afraid of Hyrum as they fear to know what else will
cause him to overdose.
Hyrum has also been
diagnosed since then, with having scoliosis. At Hyrum's 2 1/2 appointment Hyrum
had been getting steadily worse in curvature. His all time record was 46% at
this appointment. We were told that in 6 months we would be looking at MRI's
and possibly surgery. We were encouraged to let him climb, hang on things, and
be more physically active. We also prayed very hard! 6 months later at his 3 year
appointment Hyrum was down to 35% curvature. And at his 3 1/2 year appointment
Hyrum was at 26%. We currently see this doctor now only 1 time a year and at 4
1/2 years his curvature was 21%.
We started doing nightly enema's to control his bowel enough for him to wear
underwear at the age of 4. Hyrum has had so many x-rays that I think he glows
in the dark. He does not fight us, in fact he enjoys enema's thanks to an iPad
that was gifted to us. He knows his alphabet letters and sounds, and is working
on reading. He also loves watching Asian YouTube of Thomas the Train.
Hyrum has a zest for life. It takes a lot for him to feel pain, he loves to
laugh. His favorite saying at age 4 was "Oops, I burb" or to blow
bubbles and state: "Oops, I fart". When we go to the Doctor he tells
me "it's your turn, it's not my turn mommy."
August 2014, Hyrum has had an Appendicostomy. This allows us to do flushes
through his belly instead of with enema's. This has given him a lot more
control of his bowel movements. We have been very fortunate that he
doesn't fight us over getting them done. Sometimes, he doesn't want to be
bothered by them as he is doing something more fun, but he doesn't fight us
off.
Hyrum had his 20th surgery Sept 23, 2015 to have Constructive surgery on his
right ear lobe and canal. He has loved having his "new ear" and
showing it to other people.
Hyrum loves to laugh
and make others laugh. When taking pictures of this young man, he cannot
help but make a face. Hyrum loves to learn. He has taught us what a water
engineer is and how to water our garden. He loves to be outside and wandering
the fields. He has such a great imagination.
THE FAMILY IMPACT
What did all of this
mean for his family? The first two years of Hyrum’s life, he was not allowed to
cry (as this put too much strain on his intestines), which took a herculean
effort by the family to keep him pacified under all situations. There were many
nights during the first 7 weeks that Hyrum was in NICU and then PICU that his
parents were not afforded a bed to sleep in, so I spent many a night sleeping a
few hours in a sleeping bag in the back of the SUV in the parking lot in this
cold Utah winter climate, this allowed me to be close for any complications
that arose.
Once home, Hyrum could
not nurse due to decrease muscle strength in his jaw. It was too much work for
him. I was expected to pump for the nutrients that he could only get from his
mother and feed it to him in a bottle. I learned to be resourceful and used a
piece of fabric to hold the bottles in place while pumping, allowing my hands
and arms to be free to hold Hyrum while he drank his milk from the previous
pumping session. There were many nights that Hyrum would pass a lot of gas
causing his ostomy bag to fill up with air and come off his stomach. This would
create a 2 am chance to clean Hyrum, his bed, and change his ostomy bag. This
process would take one hour on a good day. I spent many nights sleeping in only
1-2 hour increments to be up by 7 am to get the other 3 kids off to school as
John would leave for work at 6 am.
Hyrum was 15 months
when he had his pull through surgery. He was under 20 lbs. He was the size of a
typical 9-month baby. And his physical and motor skills where that of a 9-month
old baby. After this surgery, his motor skills started to take off. He was
crawling by 16 months and walking at 18 months old. Hyrum finally started to
sleep through the night at 2 ½ years old.
We decided that we
needed better medical coverage for Hyrum. I had talked with many of the nurses
and CNA’s while Hyrum was in the hospital. I found a 2 week course to get my
CNA and started to work on a Surgical/Transplant floor at IMC in Salt Lake City
where I was quickly deemed the night shift ostomy bag queen. If there was an
ostomy bag on the floor, it was automatically given to me as I was the fastest
and could get them to stay on the longest. I would end up in the room whether
the patient was mine or not, so it was just better to give that patient to me
in the first place.
And thus, medicine
became a big part of our lives. First for ourselves and Hyrum, then we began to
help others.
HYRUM’S
FIRST LIST
By the time Hyrum was a week old, one of the Resident Doctors
sat down with me and listed all of the problems that they found with Hyrum. It
was a daunting list that we were not expecting. We went from 20 weeks pregnant
knowing that he had issues with his intestines, to 32 weeks pregnant knowing
that he would need surgery for lack of an anal hole, to 1 week post birth we
got this....
Issues:
• Hole in Heart between
ventricle chambers - Doctor last night said its making less of a sound and is
probably healing itself. VSD is the technical name
we learned. By age 2 it was a crumb size, he will be seeing his Cardiologist
this coming year (2012) to make sure all is ok. We were told to look for signs
like exhaustion, or inability to get up and do what he wants as he grows. What
does it mean when he is completely opposite! We love watching him with all his
energy as that is one sign that all is well with his Heart!
• Ribs: has an extra set of
ribs fusing with collar bone pushing it up - but don't know what they will do
if anything about this, they need to check the structure more. This has
not ever caused issues except when he had the bout of RSV, the extra weight
made it difficult for him to breath. It makes him look a bit more meaty in the
chest, but nothing serious!
• Neck: some of the
vertebrae in his neck are deformed and may cause spinal problems - Neurologist
team needs to evaluate and determine if surgery and neck supports need to be
put in. We were told he would never hold his head up, and possibly need
something to support his neck for the rest of his life. Surprising enough this
was difficult to swallow, but we accepted it (what else does a parent do
right?). We were very careful with the older kids holding Hyrum as we didn't
want his neck broken. While at church when he was about 6 months old, I was
holding him in a Lazy L position on my lap. It was enough for him to see around
him without sitting completely up. When all of a sudden, he lifted his back and
neck off of my hand sitting himself in a complete upright sitting position on
my lap....holding his head up! I was so shocked that I nudged John (who was
sitting next to me), we stared in absolute amazement at the miracle we were
both witnessing. If you feel his neck, his muscles are HUGE. When we first
showed his Doctor, we were told to not let him play football, but otherwise he
should be a completely normal child.
• Intestines: Surgery went well,
he has 2 stoma's (ends of large intestine sticking out of the stomach) - The
next step for him on this is to let things heal for a couple of months, then he
goes in for testing to see what is going on with the lower end of intestine and
where it has tried to attach. Hopefully it is attached to the prostate or lower
rather than bladder or higher as higher is a worse longterm prognosis due to
nerves and control. At around 3 months he would then have his 2nd surgery, then
at 6 months another surgery to start making the anus, then who knows as it is
all based upon what they find, how he responds etc. Of course, this did
not happen. His intestine was attached to his urethra and of course, with all
the problems we did not have everything taken care of by the time he was 9
months. I would say that this was the easiest thing to deal with, but caused
and still causes most of our stress and concern!
• Left Ear: Needs
hearing test to see if he can hear, and nodule taken off - otherwise looks
good. We learned that he can hear almost as well as most kids can with
two ears, with his one ear. The Nodule (or Dog Tag is what we called it) was
taken off when he was about 10-11 months old when his tonsils and adenoids were
removed along with a tattoo placed on his "pouch" on his urethra
where his intestine was attached, but didn't heal correctly. We combined a few
surgeries as he doesn't do so well with surgeries...or more the medication
afterwards.
• Right Ear: Needs hearing
test, and constructive surgery. We don't know much about this process
yet. Microtia/Artresia. Before he came home at three weeks
old, we were told he could not hear anything out of his right ear. I started to
believe otherwise, when I would whisper in his ear and he would completely
understand me. So a couple of months ago we took him to the Audiologists and
found that he can hear, it is more of a whisper when you talk to him normally,
but he can hear out of his right ear. The surgeries will most likely take place
sometime around the age of 8-10, we are looking at doctors now and finding the
changes in surgeries impressive and excited to see what will happen in a couple
more years!
• Right side of face: minor
nodules (he has scratched one off) - not a big deal. By the time we
left the hospital, he had no nodules (dog tags) left on his face! We since
learned that when they have nodules on their skin like he did, that the chances
are huge on having them on the inside of his body. When he came down with RSV
it was right after his first bottle, so they thought he had a fistula between
his esophagus and his lungs causing him to aspirate, This was Friday, on Monday
they had ruled everything out and was suggested to test for virus...and that is
what it was.
We learned a few things later on:
• Later we were told
his jaw was crooked, that when he was a teenager he would need
surgery to break his jaw and put it back into place. So about a year ago, I
took Hyrum to a facial plastic surgeon. The doctor seeing Hyrum sucking his
pacifier and then looking at his x-ray pictures told us that by allowing him to
suck on his pacifier past the usual year (at the time Hyrum was almost 4),
Hyrum would not be needing surgery as the sucking helped strengthen his muscles
and straightened out his jaw...hence no surgery needed!
• Hyrum's head became
deformed (flat on one side) over his first few months of life. At nine months,
life became such that I was able to take him into the plastic surgeon for a
helmet. We were told that 1) he is too old for a helmet, 2) he would grow out
of it eventually. I asked why they didn't do something sooner as they knew
Hyrum since birth and I was told that they didn't do cosmetic fixes on baby's
that they felt wouldn't survive long enough to need it (in other words, they
don't straighten out dead baby's heads) His head is straightening out very
slowly and unless he has a buss hair cut, or it's pointed out to you, one
wouldn't be able to tell his head is symmetrical!
• Scoliosis. This was something that
Hyrum developed over the first 6 months of his life. By the age of 2 1/2
(August), his curvature was 47% over the prior year he had gone from 25% to
this 47%. At this appointment, we were told that in 6 months they would
schedule an MRI and talk about surgery as they do surgery when the curvature is
greater than 50%. We spent the next 6 months praying. Karl (at the time would
have been about 6) prayed faithfully for his brother's back to heal and get
better. At his appointment in February, we were told his curvature was 36% and
there would be no MRI or surgery at the time, see ya in 6 months. I went home
and got in my little 6 year old's face and told him it was all his fault. He
really thought that he did something wrong, until I started to cry. I told him
what the doctor said about his back getting better and told him that it was his
prayers that fixed his baby brothers back. We had six more months of prayers
and in August of 2010 we found Hyrum's curvature to be 26% and the doctor was
shocked and said that sometimes this happens, but not very often and see ya in
one year! We expressed huge amounts of joy with our kids as we again watched a
miracle in Hyrum's behalf. In August of 2011, Hyrum's curvature was 21%. The
doctor commended us on putting Hyrum in both swimming and gymnastics the past
summer. He keeps up the gymnastics, but the swimming interfered with his school
so he will do the swimming again this coming summer!
• Upon seeing a geneticists
we learned that Hyrum has a Medical Terminology for his issues. He has a mild
form of Oculo-Auricul-Vertebral Spectrum. In other words, he is non
symmetrical top to bottom with his right side more in front of his left side
causing everything in the middle to be miss aligned. He should have had kidney
and liver issues, extra fingers, deformed fingers, etc. and he had a mild form
of this Syndrome helping us to feel very blessed.
