Meet Wyatt:
Wyatt was born on a beautiful June day 2 and half years ago. He has
been a fighter from his very first seconds. In the womb he fought to
stay alive and grow, and in his first moments of life as a baby, he
fought to live, and to breathe. Wyatt was born without surfactant in
his lungs to help them expand, and spent some time in the NICU getting
help breathing. After a scary week in the hospital, we brought our
miracle baby home. From day one, he was a screamer. He screamed
all.the.time. You may think that I am exaggerating here, but I can
promise you I am not. We rocked him, we swung him, and he spent hours
in front of the dryer in a vibrating swing because it was the only thing
that helped calm him even a little bit. I would wear him all day and
rock and swing and bounce constantly to help him settle. If I did the
dishes, I would put him in the bouncer and bounce with one leg as I did
the dishes so that he would just cry instead of scream until he passed
out. When I tell you that he never slept, I mean NEVER. The doctor
told me that he was colicky, and to give him gas drops and rub his
tummy. He would projectile vomit everything that went into his mouth. I
was used to that, because his sister did that too, so I didn’t think
anything of it. When he would fall asleep, it was propped on my
shoulder in a certain way, and he would moan and scream out in his
sleep, if I laid him flat he would vomit and scream. When he was 3
weeks old, he puked so much he was grey and lethargic and I knew
something was wrong. I rushed him to the ER, and they told me that he
had the flu. When I told them that he hadn’t pooped for a week, they
did an x ray to see if he had pyloric stenosis, which he didn’t. They
told me his body was just trying to figure itself out and he would be
ok. They ran an IV, and did a feeding challenge in the hospital, and an
hour later, Wyatt puked all over the nurse, but they still told me he
had the flu. When I met with our amazing Pediatrician for a follow up
after Wyatt’s ER visit, he told me that he felt like Wyatt’s symptoms
were not the flu, but a dairy, soy, and protein allergy. He gave us
samples of 3 different formulas to try so we would know for sure. The
first one was a gentle formula to simply rule out just a harsh regular
formula, and he had no change in symptoms; the second was a soy based
formula to rule out just a milk allergy, but not a soy allergy. We were
staying at a friend’s house for the weekend when we tried that one and
he puked all over their couch, and had the weirdest pale grey poop. He
screamed all night long, and wouldn’t let up, and I couldn’t even begin
to comfort him. I thought for sure they would kick us out of their
house. The last formula was a hydrolyzed formula, and by the second
day, it was like I had a whole different baby. It was night and day
from the Wyatt I was used too. He was still fussy most of the day, and
he still screamed a lot, but he wasn’t puking like before, just more
spitting up, and he slept a little easier. We decided to start him on
acid reflux medicine, because it was very apparent that he was
struggling from some major GERD as well. We hoped that the combo would
help.
Wyatt was still failing to thrive, but his weight plateaued instead
of rapidly dropping, and we had hope that he would do better. We were
encouraged to try rice and oat cereal and add oil to his feedings so
that he could gain weight. As soon as we tried them, he was projectile
vomiting even stronger, couldn’t poop at all for over a week, and was
screaming for hours on end. We tried everything we could think of and
were so desperate. Our pediatrician was a God send, because although he
couldn’t explain it, he knew something was wrong. He had seen Wyatt
screaming, puking, and being in so much pain. He had been trying to help
us find a way to treat his extreme constipation, and was doing
everything he could to get us into a GI in the city. We were getting so
desperate and Wyatt was getting so bad that we agreed until he could
get into our pediatrician’s friend who was a GI at the Children’s
Hospital that we would take him to another GI in Provo. It was a
nightmare. He assumed from the very beginning, even watching Wyatt
scream and puke, and seeing me covered in vomit, and in tears and
pleading to him in his office, that I was a nut job and wasting his
time. We trialed about 10 formulas under him, each worse than the last,
and several foods.
When Wyatt was a year he agreed to scope him and
see what was going on. After withholding the actual results and telling
me I was just having post-partum and anxiety issues, I felt very
strongly that we should not go back to him. After seeing his notes in
Wyatt’s medical records, I thank God every day that I listened to that
feeling. By this point, Wyatt was a year old, and weighed 14 lbs.; he
hadn’t even doubled his birth weight. For his birthday, I followed
all the advice given to us, I worked for days on a vegan gluten free
cake, and coconut milk ice cream, and 4 hours after he ate it, and we
celebrated him surviving his first year, he screamed and vomited so hard
for so long that he passed out in my arms. He screamed limp in my arms
for 12 hours. I had no idea what to do; I had never seen him in so much
pain before. There were many moments that night that I cried along
with him, it broke my heart in a way I can never describe to you. That
day, Adam and I knew we would not feed him again, until we knew what
was wrong with him.
Three months later, we were able to get into the GI at the Children’s
Hospital. She was floored when we walked in. Wyatt was in my carrier,
screaming bloody murder; I bounced and swayed from side to side, and
tried to talk over him so she could see what was happening. He could not
calm down. He was extremely constipated and his belly was swollen and
in pain. His bottom looked like hamburger and his cheeks where red and
looked like he had been slapped. His eyes were sunken and dark, and I
will never forget the look on her face. She knew something was wrong,
but she didn’t know what. Then began the tests. She tested him for
cystic fibrosis twice, duplicate stomach, a full body scan to see if his
intestines and stomach were connecting, or if there was any kinking
anywhere. She tested him for pancreatic disorders, and gallbladder
functioning, and everything you could possibly imagine, and then she
tested him so more. At that time, we learned that his left kidney was
obstructed, and was only working at about 40%, and so we have had to add
that to the list of specialists and things we have to keep an eye on.
Nothing came back abnormal. The only thing that looked off on the tests
was that his white blood cell count would get elevated, and he showed
blood in nearly every stool sample we brought in. We saw an allergist,
who tested him for tons of things, but only Eggs showed as a typical
allergy. The diagnoses that we received from the GI were, severe and
complete protein intolerance, and “Mother Killer”, which is a diagnosis
given to children that scream consistently for more than 8 hours a day.
Apparently 80% of mothers whose children fit that category either try
and commit suicide, or suffer a severe mental break. She was always
very good to check in with me, and make sure I was doing ok, and called
my family doctor to make her aware so that she could help us get home
health, or respite care. I always appreciated that, because she didn’t
do it in a way that made me feel like she thought I was unfit, or was
going to harm my child, but in a way to help me know I had support.
Under the care of the GI, we trialed more foods, and failed them so
hard. I couldn’t take much more, and we agreed to give him some time to
let his gut heal. She had hopes that we would grow out of it by 2, and
we just couldn’t afford anymore ER visits, since we were averaging
about 3 a month at that point. Wyatt was on 14 medicines at this point,
we had trialed around 100 foods, and he was sleeping about 1.5-2 hours
at a time, and then up and screaming and screaming before passing out in
pain and exhaustion. It was miserable and there were days, I just
would cry and cry because I couldn’t help my son. I wore him all the
time, because holding him close was about the only way I could get him
to settle down, and just breathe.
During this time, our rock star pediatrician retired, and I was
devastated. He was our biggest advocate, and saw us anytime I needed
help. The doctor that took his place meant well, but just didn’t know
what to do, and just couldn’t help us. Wyatt was hospitalized for a
week because he had contracted croup, pink eye, RSV, Bronchitis, AND
both viral and then bacterial pneumonia and was in terrible shape. This
poor kid had no immune system and when anything was in the air it hit
him hard. It was scary, and during that time we also learned that he had
severe asthma, and it was during a reaction in the hospital we learned
that he goes into bradycardia, has a low temperature, low blood
pressure, develops an irregular irregular heartbeat, and struggles to
breathe on his own. Needless to say that meant we had to meet with
cardio and have a bunch more tests done. After that, I knew it was time
to find a different doctor. I called our trusty family doctor that Adam
and I both saw, and started once again to do some research. One night,
I typed in the same thing I had typed in a million times before, but
must have typed it in a little different. I typed in delayed vomiting
after eating, protein, and The FPIES Foundation website popped up. The
more I read, the more the tears flowed down my cheeks. I KNEW this was
what was wrong with my son. I printed out everything I could find for
our doctor’s appointment, and when I got the doctor’s office, I plopped a
stack of papers down in front of her and said: “I think Wyatt has
FPIES”. Our doctor knew about him, and she knew what we had been
through, and I knew in my heart, that even if she didn’t know what it
was, she would fight for him. She said, “I have never heard of that
before, but we need to get him into someone who does.” She encouraged
me to just one more time try seeing yet another allergist and see if
they could help. So when I got home, I called a random allergist at
Riverton Hospital and made an appointment, not knowing what would
happen. As soon as Dr. T walked in, I said,” I know you are going to
think this is nuts, but I think Wyatt has FPIES, and I need to know if
you can help me”. Miracle of miracles, he knew what it was, and he
agreed with me! Finally we had a name for what was happening to our
son. I took the info to our GI, and she agreed too! No one knew quite
what to do to help Wyatt, he was the most severe any of them had known,
and so they decided to scope him again. He was scoped for the second
time 10 days before his second birthday, and we were encouraged to trail
grapes. We feed him grapes, which he struggled with slapped cheeks,
poo issues, and sunken eyes, but no vomit so we were encouraged. We
took a break for a couple days, and headed to my parent’s for his
birthday, so excited that we would have something safe to feed him for
his birthday. He ate a handful of grapes for dinner, and 5 hours later,
like clockwork, he lost it. He screamed worse than his first birthday,
and I finally had to take him for a drive so that he didn’t wake up the
entire house with his begging screams. It was terrible. Terrible. We
drove home the next day, and I took him to the Children’s hospital late
into the night because he was alternating with screaming bloody murder
and vomiting, and I just didn’t know what to do. He was admitted after a
ridiculous power play ER visit, and an x-ray that showed a severe bowel
impaction. They tried to push fluids, and did 3 enemas in which not
even the enema fluid came out, and his BP was dropping super low. They
suggested sending us home after fluids, and it would work itself out,
but I refused. I insisted on a surgical consult, and when they came,
they said, he needs surgery NOW. 10 days after his last scope and
colonoscopy, with a full clean out, my baby had to have surgery because
he had a bowel impaction the size of a baseball from GRAPES. They
placed and NG tube during surgery so that they could keep him hydrated
and run some laxatives through it because of the pieces of impaction
they couldn’t reach. He stayed for another week in the hospital before
he could come home. We were told that we needed to mix his infant
formula to a higher calorie level since he wasn’t an infant anymore and
needed more calories, and the second we did, he spiraled. His once
semi-safe formula was making him drastically ill. He could not stop
puking, and was pooping mucous blobs and blood. They switched him to
the only formula we hadn’t tried, and the only one that was corn free,
because we learned the upping his kcals, had sent his corn sensitivity
into a full blown allergy, and was making him incredibly ill. He
started to have black blood, and I was told to bring him to the ER,
because he had an upper GI bleed. He had the most frustrating week long
hospital stay, with the most frustrating ignorant doctors, that
“googled FPIES” and told me that if he wasn’t puking blood he wasn’t
sick, but apparently pooping blood is perfectly acceptable. The doctors
working the GI floor wouldn’t call Wyatt’s doctors that actually knew
about FPIES, and so I had to call them and demand help, and we finally
got to be released.
In November this past year, we were able to pull some strings and get into THE chronic FPIES doctor in Denver, and he confirmed that Wyatt has the most severe case he has seen in person, and one of the most serve cases of FPIES he has ever heard about. He confirmed all the things we were experiencing where FPIES. The behavior, the ASD and SPD symptoms that came when he was reacting, the shock, and times he coded with surgery and during severe reactions, the lack of sleep, the low immune system, the screaming, vomiting, diaherrea and obstipation (extreme chronic constipation), all of it. Every single thing. There wasn’t much he could have us do that we haven’t already done, but he validated everything that had happened and we were going through. He tested him for a couple more things, and gave us a few more things to check with his next scope at 3 years. He instructed us to do gut rest until at least 3, and possibly 4, so that we could give him gut a chance to heal. He told us that there is something else happening along with the FPIES, which we, and all our doctors have suspected from the beginning, and promised he would help us find out what it was. We have no safe foods right now, beyond formula, and that is really hard. Since Wyatt is on the rarer side of this rare disease, there is less chance that he will outgrow this, but hopefully with time, and gut rest, and patience, we will be able to find him some safe foods to eat.
In the months since we went to Denver, Wyatt has been really sick. He
has been chronically failing his formula from the beginning (hydrolyzed
soy and dairy) which is probably what gave him his third upper GI bleed
in 6 months, and in true 2 year old fashion has snuck some little bits
of food that have made him incredibly ill. He got a yeast infection
right before Thanksgiving that spiraled into a full blown very serious
systemic yeast infection, and landed him in the ER last week (his second
ER visit of the year by the way). He sleeps a little better now, about
4 hours at a time. He has major poop issues, and I’m afraid he will
until the end of time. FPIES reactions make him lose his little
vocabulary, his eye contact, cause major sensory issues, and he
regresses a lot in developmental areas. It takes him weeks and
sometimes months to recover and to get his words back, and his eye
contact. He hurts basically all the time, and yet, he smiles, and he
laughs, and he loves people so much. He is so in tune to how I feel,
and still cannot sleep without a hand on him. He is my miracle baby,
and he is my life. His life has changed mine. And although it has been
the hardest thing I have ever had to do, to watch my baby boy, the child
I fought for, struggle, and hurt, and cry, it has changed me in all the
best ways. He has renewed my hope in life, love, and my faith in God.
He has changed me, I cannot think of any bad ways I have changed
through this. He has brought out the very best in me, and makes me want
to be a better person, more kind, loving, and patient. And when I think I
cannot go on, I feel the strength in his eyes, and see his
determination to just live.
I know that we have a fight ahead of us, and I know that it will not
be easy, and I get scared that it will be harder than even this is, but I
know, that if he can do it, I can. He is my angel on Earth, and my
hero. He has shown me what strength is. Wyatt is amazing, and I feel
it such an honor to be his mom.Through this incredible journey, I have been blessed to meet some incredible moms, and their amazing children, and it has been such a blessing to learn from them, talk to them about things no one else understands, and problem solve with them. I have very tight knit group of moms that have become my people, and although I have never, and may never meet them face to face, I feel like I know them better than nearly anyone. We celebrate each victory of our babies together, and pray together in the really tough and scary moments. They are incredible, and I am thankful to know them. I am grateful to the FPIES Foundation for being the people that started it, and gave us answers after to searching for 2 very long years, they changed everything for us, and I love those moms as dearly as I do my own sisters.
I have such a full and overwhelmed (in the best ways) heart, and a
deepened love for my family through all of this. They have been my
strength, and unwavering lighthouse in this storm. My parents have
dropped everything at a moment’s notice countless times to be with us,
to help us, and watch Nana so that we can be with Wyatt, and my mom has
listened to me sob on the phone, when no words would come, and held my
hand, and just been there. We have been so incredibly blessed with the
people God has placed in our lives at just the right moments, so that
Wyatt could be ok, and grow, and learn, and hopefully someday be a
normal boy, and eat food.
