my experience with perinatal hospice carekfltech.com/the pauly family and perinatal hospice care...
TRANSCRIPT
Our story begins back in 2006. We are Jarod and
Krystle Pauly. We met in December of 2006 through
some mutual friends.
Prior to our meeting
I had just had a baby
girl in October.
Jarod came into our
lives when MaKen-
zie was two months
old. I was living
at home with my
parents and Jarod
was living with some friends. Years
passed and Jarod and I continued dating.
In 2008 Jarod asked MaKenzie and me to
move in with him. I agreed. We went
looking for houses together and bought
the perfect one for the three of us. I was
working for a major aircraft company
here in Wichita and Jarod was working for a reputable
sheet metal company. In 2009, I returned to school seek-
ing my degree in Human Resources Management. In
2011, I was laid off from my job due to major cutbacks.
Unsure of what my future held career-
wise, Jarod and I discussed other possi-
bilities for me. Jarod brought up the idea
to me of being a stay-at-home mom with
MaKenzie. At first I thought there was
no way I could be a stay-at-home mom
because I was so used to having to support my daughter
on my own. I’ll never forget Jarod just using one word
with me: trust. He said, “Just trust me. Trust me to take
care of you and MaKenzie.” So I took a leap of faith
and I trusted Jarod and became a stay-at-home mom.
Later that year Jarod proposed to me. It was one of
the happiest days of my life. During the planning of
our wedding, we were required to take an Engaged
Encounter class over a weekend. A lot of the topics we
covered were topics we had already discussed: what
our future held, finances, love languages and chil-
dren. Children were definitely something we wanted.
On September 1, 2012 Jarod and I were married in
front of hundreds of our closest friends and family and
so our journey began.
After our wedding we waited three months to go on our
honeymoon, a cruise, with our family too! We are both
very close with both of our families, so why not take
them on a cruise with us?
When we got back from the cruise we decided it was
time to start trying for a baby. We talked about all our
options for creating our family. We discussed adoption
and conceiving naturally. We decided that we wanted
to have a child created as God intended, between a mar-
ried man and woman. We found out in May 2013 that
we were expecting our first child and we
were so excited!
Having been pregnant once before with no
complications, I expected this pregnancy
to be no different. My expectations
quickly came to a shuddering halt on July 24th, 2013.
It’s a date I will never forget. That morning started out
like any other morning. I got up with Jarod as he got
My experience with perinatal hospice care By Krystle Pauly, a perinatal hospice patient at Choices Medical Clinic, Wichita, Kansas
Published by Kansans for Life, 3301 W. 13th St. N., Wichita KS 67203.
316-687-5433 • [email protected] • www.kfl.org
Krystle and newborn MaKenzie, 2006
Jarod and
MaKenzie
“Just trust me. Trust me
to take care of you.”
—Jarod to Krystle
Engaged! 2011 Married September 1, 2012. Honeymoon cruise, December 2012.
ready for work and got MaKenzie up and ready for the
day. My 19-week anatomy scan was scheduled for 1:45
p.m. I invited my mom to come along to the appoint-
ment just to see the baby.
I remember lying on the table excit-
edly telling the sonographer not to
tell me what the gender of our baby
was. Jarod and I didn’t want to
know. As the sonographer was
going over all of my baby’s fingers
and toes, legs and arms, I was so
excited to see this little life inside
me! When the sonographer got to
the head, she kept moving her wand
all over trying to get a good meas-
urement on the baby’s head. After
about ten minutes she said she
could not get a good measurement
on the baby’s head. She excused
herself from the room to go speak
with the doctor. I thought this was normal—maybe she
just wasn’t in a good position to get the baby’s head
measurement so the doctor was going to come in and do
a sonogram himself.
When the doctor walked in by himself, something just
didn’t feel right. The doctor sat down in his chair,
wheeled himself close to me and not
close to the sonogram machine. Dr. V.
said words I will never forget. “What I
am about to tell you is difficult. Your
baby has a fatal birth defect called anen-
cephaly.” Dr. V. then went on to explain
what anencephaly was but once I heard
fatal I pretty much stopped listening.
How could this be? How can my baby
have a fatal birth defect? I have been taking multivita-
mins; I never drank, smoked or did anything that would
have harmed my baby. I asked to step outside because I
really had to use the bathroom since I had to have a full
bladder for the sonogram. Dr. V. stayed in the room
with my mom and said, “Your daughter seems to be
handling this very well.”
My mom told him, “I think she’s still in shock.”
I came back into the room and told my mom I needed
to call Jarod. My mom went out into the waiting room
and made the call and I was moved into a different
room that did not have a sonogram
machine in it. When Jarod got to
the doctor’s office Dr. V. walked in
with him. We sat in this room for
an hour with our doctor. Dr. V’s
other appointments scheduled for
that hour were seen by other doc-
tors in the office. Dr. V. answered
all of our questions, even if they
were repetitive questions. He never
lost patience with us. Our doctor
explained our options to us: we had
the option to continue to carry to
term or we could terminate the
pregnancy altogether. We both told
Dr. V. without hesitation we are
carrying the baby to term. Dr. V.
said he respected and supported our
decision. We asked if our appointments would be any
different since the baby had anencephaly, and he re-
sponded that he would continue to care for us the same
way he would if we had a healthy baby. He explained
to us that when carrying a baby with anencephaly, you
have a 50-50 chance for miscarriage. We understood.
Before we left Dr. V offered us his sin-
cerest sympathy and handed us a bro-
chure to Choices Medical Clinic, and
his personal phone number. Dr. V. told
us to call him if we had any more ques-
tions or concerns. Dr. V. also said he
was scheduling us a more in-depth so-
nogram with the perinatologist as soon
as possible to confirm his diagnosis.
This was the longest weekend of our lives. Our appoint-
ment was scheduled for Monday morning at 9 o’clock
with Dr. W. All weekend long Jarod and I surfed the
internet looking for information about anencephaly.
And everything we found kept returning the same:
Fatal. We prayed so hard that the sonogram findings
were wrong before we walked into our perinatologist
appointment. When we went into Dr. W’s office and
had our sonogram, it was confirmed that our baby had
Published by Kansans for Life, 3301 W. 13th St. N., Wichita KS 67203.
316-687-5433 • [email protected] • www.kfl.org
My experience with perinatal hospice care page 2
“What I am about to tell
you is difficult. Your baby
has a fatal birth defect
called anencephaly.”
—Dr. V. to Krystle
anencephaly. I couldn’t wait anymore. I needed to know
what the gender of our baby was. It’s a girl! Our sweet
little princess, Sophia Corrin Pauly. Dr. W. offered his
sincerest sympathy to us as well and spent 45 minutes
with us answering our questions, the same
questions that we had for Dr. V.
Before we left Dr. W’s office, he too, handed us
a brochure about Choices Medical Clinic.
When we got home we read through the pam-
phlet and were unsure of whether or not we
should call Choices. We didn’t know what they
could do for us beyond what our doctors could
do. So we decided to go ahead and call and just
go see what Choices had to offer. Our appointment was
set up for the middle of August 2013. Upon approach-
ing the clinic we noticed it was right next to the old Dr.
Tiller Clinic. I remember telling Jarod, “If this place is
inside that clinic you might as well keep on driving,
because I will not go in there.” Much to my relief it was
right next door and we walked in and were greeted with
such compassion.
We were taken back to the conference room where we
met Dr. Stringfield and some of his associates. We met
with Martha and Denise, Debbie and Susan. It felt kind
of like an interview. Little did we know, we just met our
team of people who were going to walk the rest of our
journey with us! We had our consultation with Dr.
Stringfield and he told us what he knew of our case and
asked us if we had any questions that he could answer.
Again we asked the same questions, and again we got
the same answer: it’s fatal.
Dr. Stringfield explained that in our
situation, Choices was there to make
things (funeral planning, grief counsel-
ing, etc.) as easy as possible for us.
After our consultation was over we
were taken back to the sonogram
room. Martha performed a sonogram
for us and just showed us our baby. No
more diagnosis, no more this is wrong,
that’s wrong. We just got to enjoy see-
ing our baby play on the screen.
Before we left the clinic, Martha asked if she could put
us in touch with a mother who was in our parish who
also lost a baby. I said sure. A week went by and then I
received an e-mail from a woman named Joan. Joan
and I began to meet regularly for coffee and to talk
about her baby and my pregnancy. We de-
veloped a friendship like no other friendship
that I had before. She could sympathize with
all the emotions I was going through. Joan
became my confidant with Sophia.
Joan later became Owen’s Godmother and
his own personal photographer!
Dr. Stringfield, Martha and Denise all told
us that we were welcome
back any time with our par-
ents or any family members
who wanted to see our sweet
baby girl on the screen. So
Jarod and I decided that once
a month we would go to
Choices with both of our par-
ents so that they could watch Sophia grow and play in
the womb. We took our daughter MaKenzie with us to
the sonograms as well, so she too could watch her little
sister grow. Martha let MaKenzie use the sonogram
wand to record Sophia’s heartbeat. Then Martha gave
the heartbeat recording to MaKenzie to put into a pink
Build-A-Bear for us to take home and listen to Sophia’s
heartbeat anytime we wanted to.
Over the course of the next few months we met with
Martha and she encouraged us to come up with a birth
plan to share with our doctor, Dr. V. The birth plan
included what we wanted to have done at the time of
Sophia’s birth. Martha told us it was
probably a good idea to go meet with
the NICU team at St. Joe’s so that we
could establish what our wishes were
once our daughter was born. So one
evening we met Martha at St. Joseph
hospital and met with the NICU doc-
tors.
Finally being out of shock and accepting
that this was God’s plan for our family,
Jarod and I wanted to know what we could do to help
educate others and bring good to such a sad situation.
Published by Kansans for Life, 3301 W. 13th St. N., Wichita KS 67203.
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My experience with perinatal hospice care page 3
Finally being out of shock
and accepting that this was
God’s plan for our family, we
wanted to know what we
could do to help educate
others and bring good to
such a sad situation.
In October I was 32 weeks pregnant and Sophia’s due
date was quickly approaching. We wanted to know how
we could help other parents to not have to go through
losing a child. We considered donating Sophia’s organs,
but that was very iffy because we
were unsure if Sophia was going to
make it to term or if she was going to
be born alive. So I started doing some
research and found out that I could be
a breast milk donor. One night when
Jarod got home from work I asked
him what he thought and he said he
thought it was a great idea.
We had an appointment later that
month with Dr. V. and I asked him
his thoughts on me becoming a breast
milk donor. He was very supportive
and receptive to the idea and offered to help in any way
he could. I needed him to write me a prescription for a
pump, do my blood work, and fill our paperwork of my
medical history. And Dr. V. did it right then and there
for me. I was really excited! I contacted the Mother’s
Milk Bank out of Denver, Colorado, because they part-
nered with St. Joe here in Wichita as a milk collection
site.
Because of our desire to help others learn,
our doctor asked us what we thought about
having medical students in the delivery
room when Sophia was born. He said that
this was going to be a very unique delivery
as Sophia was breech and if she did not turn,
we would be delivering breech because it would be less
stressful on her head. Dr. V. was concerned for my well-
being also; he didn’t want me to have a C-section
because I would already be going through the pain of
losing a child, and that was going to be hard enough.
Trying to take care of a C-section scar on top of that was
unneeded stress for me. We were impressed by Dr. V’s
compassion and caring for me and appreciated how he
was thinking farther ahead than we were. Jarod and I
agreed to have medical students in the room and said
that as long as somebody was learning something from
us we were okay with it.
Amidst everything that was going on with our pregnan-
cy, my grandparents were falling ill. My parents and
my brother went to Wisconsin to move my grandpar-
ents to Kansas. On November 13th, three weeks after
they moved here, my grandpa passed away from can-
cer. During one of the last visits I
had with my grandpa, he placed his
hand on my belly. I asked him if
when he got to Heaven he would
take care of sweet Sophia when she
would join him. With every ounce
of his being he muttered the words,
“I promise.” Those were the last
words my grandpa spoke to me.
The beginning of December was
upon us and my pregnancy started
to take its toll on me. I didn’t want
the pregnancy to come to an end
because I knew what it meant. I began to have anxiety
about the upcoming delivery and whether or not we
would get any time with our daughter. At our 36-week
check-up Dr. V. told us that I wasn’t dilating or effac-
ing so we would need to induce labor. Not wanting the
pregnancy to be over, I asked if I could carry for two
more weeks. Dr. V. graciously agreed to let us carry
two more weeks, but he said that he would
have to induce labor on our 42-week
mark. We understood.
On December 27th, 2013, I was admitted to
St Joseph Hospital at 7:00 p.m. I was
hooked up to monitors and given my first
round of Pitocin. Our parents stayed over-
night in the lobby. The attending doctor was in touch
with Dr. V. all day. Dr. V told them to let him know
when they broke my water. Dr. V. was not scheduled to
work on December 28th, 2013, but he said he wanted to
be there. I called Martha from Choices and told her that
they were going to be breaking my water around 3:00
in the afternoon. All day long we had many visitors un-
til finally my contractions started to pick up.
Martha and Susan from Choices were at the hospital
when my contractions started to pick up. Susan was our
go-between between us and our family waiting in the
lobby and Martha was by my side. My contractions
were becoming more and more intense and Jarod and I
Published by Kansans for Life, 3301 W. 13th St. N., Wichita KS 67203.
316-687-5433 • [email protected] • www.kfl.org
My experience with perinatal hospice care page 4
Grandpa’s promise to Sophia
I didn’t want the
pregnancy to end
because I knew
what it meant.
wanted this intimate time together. We were getting
close so we asked Martha to tell our family that we
wanted no more visitors until after the baby was born.
Susan went out and told our family our wishes. I
remember sitting in bed just waiting for Sophia to start
coming out, and finally I looked at my nurse and told
her that I felt a lot of pressure. By now we were at shift
change at the hospital. I asked my nurse, Tonya, to stay
with me until after Sophia
was born. She said she
wanted to stay and see
Sophia born because she
had been with me all day,
but her charge nurse
wouldn’t let her. So Tonya
went against her charge
nurse and stayed just for
me. This was so comfort-
ing to me, because I had
bonded with my nurse in
those 12 hours. Dr. V.
came in and checked and,
sure enough, Sophia was
ready to make her debut.
Sophia was born at 7:30
p.m.
Part of our birth plan was to have our doctor take Sophia
to the warming bed to make sure that she was stabilized
before we held her. When Dr. V. took Sophia over to
the warming bed the room was very silent. I remember
asking my nurse, “Does Sophia have a heartbeat?”
The nurse, Tonya, asked if I wanted her to go check and
I said, “Yes.”
Tonya left my side and came back and got close to me
and held my hand and said, “I’m sorry.” She had tears
in her eyes when she told me that my baby girl was
gone. I asked Tonya for my baby. Tonya went and
picked up Sophia and brought her to me.
Martha was standing by my side stroking my head.
Once Sophia was born
Susan went to the waiting
room to tell our family
that Sophia was with Je-
sus. Martha, wanting to
honor our birth plan,
asked if we were ready to
give Sophia her first bath.
The hospital staff was
very accommodating in
letting us parent our child
the way that we wanted
to. There were no ques-
tions or telling us wat to
do; we were just allowed
to be Sophia’s parents for
that little time. While we
were bathing Sophia, Susan called our priest from our
parish and let him know that Sophia was born and that
we wished to see him.
The first visitor we allowed back into the room was our
daughter MaKenzie. We felt it was important for her to
get that sister time that she needed before we let grand-
parents, aunts and uncles in. Everyone had the oppor-
Published by Kansans for Life, 3301 W. 13th St. N., Wichita KS 67203.
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My experience with perinatal hospice care page 5
Martha strokes Krystle’s head and Jarod holds her hand as her
nurse, Tonya, tells her Sophia did not live through the birth.
Sophia has gone to Heaven during her birth. Krystle, Jarod, and Makenzie each hold Sophia for the first time.
tunity to hold Sophia. Even Dr. V. came back in and
admired Sophia as we held her. We were not rushed by
any of the medical staff to give Sophia away. We were
allowed to take her with us to my recovery room where
we got to spend more time alone with her.
I called my cousin who was our funeral director and
told her we were ready. I had bought a pink wooden
Published by Kansans for Life, 3301 W. 13th St. N., Wichita KS 67203.
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My experience with perinatal hospice care page 6
basket with a lid that was big enough to hold Sophia’s
body. We tied a pretty white bow on it to close it. I
asked my cousin to take Sophia out of my room in that
basket and then from there do
what she needed to legally
transport our baby to the fu-
neral home. I could not stand
the thought of seeing my little
girl in a body bag if that's
how they had to transport her.
A few days later my milk
came in. My breasts began to
engorge but I was not pump-
ing. We were so busy making
arrangements for Sophia’s
funeral that I didn’t even care
about pumping anymore. Susan and Martha both called
from Choices to check up on us several times between
Sophia’s birth and her funeral.
When we went to the funeral home, we were allowed to
dress our baby in the outfit that she was to be buried in
and cut a lock of her hair. Martha and Mary Ann from
Choices came in to make hand and foot molds for So-
phia. We buried Sophia the day before my 29th birth-
day.
Once the funeral was over and all the guests were gone
Jarod asked me if I was planning on pumping. And I
said, “No, I can’t do it.”
He gently encouraged me just as he always does and
said, “If you can’t do it we will do it together.” So I got
my pump out and we sat in Sophia’s nursery and I
pumped and he sat in there with me. I pumped every
four hours, even in the middle of the night. Every time I
pumped, with the exception of during the day when
Jarod was at work, Jarod
was by my side. We even
turned it into a family
event. MaKenzie was just
learning how to read so she
would read stories to us
while I pumped. She asked
what I was doing. I told her
that when you have a baby
the mommy’s body makes
milk for the baby to drink.
Sometimes mommies can’t
make enough milk to feed
their babies so I was going
to help those mommies feed their babies. And some-
times babies are sick and I was giving my milk to help
those babies who were sick. MaKenzie was fascinated
by this process.
A week after Sophia’s funeral, Martha called and asked
how my pumping was going and I told her it was a
rough start because I waited so long to start pumping,
but now it was going well. She was very positive and
encouraging to me. At our six-week follow up our doc-
tor asked how the breast milk donation was going and I
told him it was going so much better. He again asked if
there was anything that he could do to help us, and we
just thanked him for his encouragement and support. I
was able to pump for two months after Sophia’s birth
and I was able to donate 1,042 ounces to the Mother’s
Milk Bank in Denver Colorado.
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My experience with perinatal hospice care page 7
Months following
Sophia’s passing we
received several
cards from Choices
Medical Clinic.
Some “just thinking
of you,” and for
Mothers’ Day and
Fathers’ Day. Even
at Christmas time
we received an un-
expected package in
the mail and it was
a Christmas orna-
ment of one of So-
phia’s sonograms that we had done at Choices. These
mementos that we received are so precious to us, as they
are the only mementos we have of Sophia besides the
memories we hold in our hearts.
Six months after Sophia’s passing, Jarod and I sat down
and talked about what our future looked like as far as
children were concerned. We decided that we were both
ready to start trying again to have another baby. On June
30th, 2014 we found out we were pregnant! We were
excited, but it was a different excitement this time. It
was a nervously cautious excitement. Since losing
Sophia, my folic acid intake was increased significantly
in hopes of not having another baby with a neurological
tube defect. I returned to Choices Medical Clinic on
August 5th, 2014, to just have a quick peek at our little
baby. The next day I ended up having to
make an appointment with Dr. V. be-
cause I started bleeding and I was worried
that we were having a miscarriage. It
turned out it was just implantation bleed-
ing. We had another sonogram and every-
thing looked good; the baby’s heart was still beating.
We continued with our normal prenatal care, but this
time instead of doing my anatomy scan at my doctor’s
office we were sent to the perinatologist, Dr. W.’s, of-
fice, since we were considered a higher risk pregnancy
this time. On October 20th, 2014, we went into Dr. W.’s
office full of hope, praying that this was our rainbow
baby. The appointment was going well; the baby looked
to be healthy, but
then once the so-
nographer got to
the baby’s head,
she went from
smiling and talka-
tive to silent with
a blank stare.
Dr. W. entered the
room and had the
sonographer scan
over everything
again and then he
said show me the
face. We could tell something was wrong. Our baby
had a cleft lip just as our daughter Sophia did. Then Dr.
W. told us “I’m sorry, I hate to have to tell you bad
news again, but your baby has hydrocephalus.” He ex-
plained that hydrocephalus is water on the brain, which
could be operable with shunt placement. But there was
more. Our baby also had what appeared to be holo-
prosencephaly, a failure of the brain to divide into two
hemispheres. There would be no good way to deter-
mine how much brain function or activity the baby
would have while it was in utero. We would have to
wait until after the baby was born to see what our next
plan of action was.
We decided to have an amniocentesis test in October to
see if there was anything else, like Trisomy 13, 18 or 21
besides what we could see on the sono-
gram. We waited several days and then
got a phone call from Dr. W.: “All the
chromosomes appear to be normal.”
We continued our prenatal care as nor-
mal, adding a BPP test to our appointments to measure
the baby’s growth, heartbeat and activities. We decided
in January to go meet with a genetic counselor to see if
there was anything that we could do to prevent a birth
defect with a future child. After having everything ex-
plained to us we went home and talked over our op-
tions of testing. Jarod and I decided that we would no
longer do any more genetic testing because it was not
up to us to try and interfere with God’s plan. And nei-
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My experience with perinatal hospice care page 8
“I’m sorry, I hate to tell
you bad news again…”
—Dr. W.
ther one of us wanted to know if it was one or the other
that could not give the other a child. That is not a cross
either one of us want to carry for the rest of our mar-
riage.
Later in January, I started retaining a lot of fluid. I was
diagnosed with polyhydramnosis. At this point in the
pregnancy it was becoming very hard for me to do dai-
ly activities such as taking my daughter to school and
shopping for groceries. I had so much extra weight on
my small frame that it was really taking its toll on me.
Our baby was not swallowing amniotic fluid and getting
rid of it.
Dr. W. set up an appointment for us to be checked into
the hospital at 34 weeks to have an amniocentesis drain
done. We asked Dr. W. who would be performing the
drain, and he said he and his medical student would.
Now I will tell you, I am not a fan of needles. Dr. W.
said it could take anywhere from one to four hours to
drain the excess fluid, so we were just going to have a
nice conversation while I was draining. I checked into
the hospital on January 28th and had 3000 milliliters of
fluid drained. The medical student got to perform the
drain under Dr. W.’s supervision. Contractions had
started and got pretty intense. To distract my mind from
the pain, we had some pretty funny talks with Dr. W. I
asked Jarod and Dr. W if they had ever seen a video of
men being hooked up to machines that simulate labor,
and both of them replied no. So we pulled it up on the
internet. Oh my goodness, we were all laughing so
hard, because it was so funny! We really got to know
Dr. W. that night. Getting to know those who are taking
care of you adds an added level of comfort and trust.
When my drain was over, my contractions were still
pretty intense. I had to stay for monitoring to make sure
I did not go into labor. The contractions started in the
first place because of
all of the fluid that was
being drained from my
uterus. Luckily the
contractions stopped
and we were able to go
home. One week after
my drain my fluid lev-
el was back up and
over where it was be-
fore my drain. I had
the option to be
drained again or to try
and make it to my due
date. But being this far
into my pregnancy,
having another amnio
drain was likely to
send me into labor. We wanted to carry our baby as
long as we could. I made it all the way to 38 weeks be-
fore I physically could not take the pain anymore. I
wasn’t sleeping, I was hardly walking, and I had started
to have heart palpitations. I was scheduled to have a C-
section done on February 26th, 2015. This baby would
have to be delivered by C-section because the baby’s
head was too big to fit through the birth canal.
On February 26, 2015, and Jarod and I checked into the
hospital at 5:00 a.m. By 8:00 I was on the table ready
for my C-section. Jarod and I were very excited to meet
our little baby. We were also excited to find out if we
were having a boy or a girl! The whole pregnancy we
had referred to the baby as “Bean.” At 8:46 a.m. We
heard the words, IT’S A BOY! Our son, Owen Michael
Pauly was born into the world!
Owen was quickly taken to the NICU (Neonatal Inten-
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Krystle laughs with Jarod and Dr. W. as she has 3000
ml of extra amniotic fluid drained.
sive Care Unit) team so that they could attend to him
while I was being put back together. The NICU doctor,
Dr. S., then quickly came around the curtain draped
over my chest and told me and Jarod he really wished
he would have talked to us before, but he needed to
know what we want him to do.
Dr. S. said, “Your son is not
breathing on his own and we
need to know what you want us
to do.”
I told Jarod to go and see our
son and then come back. Jarod
went to the NICU with Dr. S.
to learn everything that was
going on, and then came back
and told me. Dr. S. came back
again and said, “I need to know
what you want me to do now.
We are ventilating him by bag.
I’m really sorry that you have
to make this decision so quick-
ly but I need to know your answer.”
As I lay there on the table I looked at Jarod I asked him,
“Do you want to leave it to God?”
Jarod was still very much in shock from everything that
was going on and he said, “We need to give him a
chance,” so I looked at Dr. S. and I said, “Give Owen a
chance.”
Dr. S. and his team inserted a breathing
tube and IVs. Owen was stabilized and
then moved to the NICU room. When Dr.
V. finished putting me back together, I
was put into the recovery room. Jarod was
with me. I told Jarod that he needed to go
be with Owen because that’s where I needed him most.
I needed to know what was going on with our son. I’ll
never forget the time after Owen was born, because I
only got to see him for a few seconds before he was
taken to the NICU.
I was moved into recovery at 9:35 a.m. and I was told I
would only be in there for two hours. I was not taken
out of the recovery room until 12:30 p.m. I was wheeled
into the NICU on my bed so that I could see Owen. I
was only with him for about 30 minutes before they
took me to my postpartum room. Owen would be hav-
ing an MRI done while I was in my postpartum room.
Waiting in that room for several hours was a living hell
for me. I was not able to see
my son again until about 5:00
p.m. All those hours I could
have had with him I didn’t get.
Thank God that Jarod was able
to be with Owen, and spend
that time with him while I was
still waiting for the feeling to
come back into my legs.
About 7:30 p.m., it was shift
change time, and both of the
NICU doctors came in to talk
to Jarod and me. They ex-
plained to us the results of the
MRI. I can’t remember exactly
what it is that they told us but
we asked to see the scans. So they pulled up the scans
of Owen’s brain on the computer screen and showed us
what a normal brain would look like and what Owen’s
brain looked like. We asked them what the functionali-
ty would be once he was out of the hospital. And they
both looked at us with very sad faces and said, “His life
will never go beyond this incubator. These machines
are keeping him alive. There is no brain activity.” Soak-
ing up those words, we couldn’t believe it. We were
going to be losing another child.
Things were different this time. We
didn’t have the Choices nurses there with
us to deliver the news to our family. We
didn’t think that we needed Choices. We
were praying for a miracle. We honestly hoped that
Owen would be able to live with these disabilities.
Jarod went to the waiting room and asked our parents to
come into our room with us to talk to them. We told our
parents the grave news. Owen was going to die. I
remember watching all of our parents’ reactions. It was
almost like watching a balloon being deflated. You
could see shoulders drop, eyes fill with tears. It was just
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We couldn’t believe it.
We were going to be
losing another child.
absolutely a horrible feeling all around. I asked my
mom to call our priest because we wanted to baptize
Owen.
At 9:30 p.m. Owen was baptized, surrounded by his
parents, sister, grandparents
and godparents. I couldn’t
sleep at all that night because I
knew in the morning we were
going to have to say goodbye
to Owen. I contacted Susan
from Choices and told her
Owen was born and that he
was not going to make it.
Susan was at the hospital first
thing the next morning. She
came and visited with us and
asked us what she could do. I
asked her to make us the hand
and feet molds of Owen. She
said, “Absolutely.” She asked if I was going to be a
breast milk donor again, and I said I wasn’t sure. I didn’t
know if I could do it again. Susan prayed with us before
she left, and then we went in to see Owen.
We were allowed to have all of our family and friends
in the NICU with us. Owen was in his own little wing
of the building separating him from all the other babies.
Everyone took a turn holding
Owen for five minutes. Dr. V.
came by again and checked in
on me and Owen.
Because we wanted to spend
every possible moment with
our son, Jarod and I hadn’t
eaten anything all day and I
hadn’t had any pain meds,
even though I was hurting and
my legs were still very swol-
len. Owen’s nurse called my
nurse and asked for her to get
a meal ordered for me, get my
leg compressions and pain
meds. Owen’s nurse really took great care of not only
Owen, but me as well.
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Dr. V. visits Owen.
Owen’s vitals started to slowly drop and we said that we
wanted the time with our son, so everyone left. MaKen-
zie helped us give Owen a bath and get him dressed,
then she went to wait with her cousins. Jarod and I spent
more time holding Owen.
Then Jarod said, “It is time.” I disagreed. I was not
ready to let our son go. He again said, “It is time.” So
we told the nurse and the respiratory therapist that
we were ready. They asked us for a consent for a
DNR (Do Not Resuscitate) and we said yes.
They closed the curtains, disconnected Owen
from all machines except the heart monitor, and
walked out. We could still see their feet under the
curtain and the nurse would peek in from behind
the curtain and look at Owen’s heart monitor. Owen
sustained life for 27 minutes on his own after being
disconnected. Jarod and I began to pray. Then a doctor
came in, put his stethoscope on Owen’s chest, looked at
us, shook his head and walked out. It was as if the Holy
Spirit had asked us to pray as our son’s soul was leav-
ing his body. The doctor coming in and just shaking his
head was the most sensitive
way he could have told us that
our son was gone. I am not
sure I could have handled it if
he had said, “Time of death.”
Jarod and I were able to take
Owen back to our postpartum
room until my cousin, our
funeral director, came to get
Owen.
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The next day, we were told that we could go home. This
was the second time we had to leave the hospital with
no baby. The second time we left with balloons and
flowers and no baby. We drove home through a really
bad snow storm. It was cold. The
way it looked outside is how we
were feeling inside our hearts.
White, blank, numb.
The following days were filled
with making funeral arrange-
ments, postpartum checks, and
getting used to our new normal.
The night of Owen’s rosary, I’ll
never forget feeling happy
though. Our medical team from
Dr. W.’s office was in attend-
ance and so were our friends
from Choices. It didn’t matter if they were Catholic or
not, they were there for us! They walked this whole
journey with us, and they were showing their support
for us.
Owen’s funeral was the next morning
at 10:00 a.m. Martha, who had moved
to Oklahoma a few months before,
had heard that Owen passed away, and
she drove all the way from Oklahoma
just to attend Owen’s funeral. We
were so moved by everyone in our
medical team’s compassion and caring
for us.
Once the funeral was over and we got to come home,
we just took a deep breath. Many people from our par-
ish created a “Take Them a Meal” sign up. We had two
whole months of meals brought to us every day so that
we didn’t have to cook. Once again, our medical team
and Choices were right there! I
cannot tell you how loved we
felt from everyone’s compas-
sion. Their love and support
made our journey more bearable.
Since I didn’t have to cook, I had
a lot of time on my hands, so I
pumped my milk. I contacted the
Mother’s Milk Bank and became
a donor again. I was able to
reach 1000 ounces before my
milk dried up! I can honestly say
that I feel like breastmilk dona-
tion has helped me through my grief. Knowing that I
can help another mother and father care for their sick
baby takes a little bit of my pain away. Jarod and I
don’t want any parent to go through what we have. It’s
hard.
Many times people say to us, “We
don’t know how you do it. It must be
so tough. How do you do it? What
makes you guys stay together?” Our
response goes back to the very begin-
ning and some knowledgeable people
along the way. We learned in our En-
gaged Encounter about the Five Love
Languages. Jarod’s Love Language is
Affirmation and mine are Acts of Service and Quality
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This was the second time
we had to leave the hospital
with no baby. The second
time we left with balloons
and flowers and no baby.
Time. Understanding what the other person needs from
his/her spouse is what has helped us.
My cousin, our funeral director, told us something along
the way when planning the babies’ funerals. She has
been through the loss of twins, so she had
experience in what we were going though.
She told Jarod and I that we could not
fault each other for the way the other per-
son grieved. I could not get mad at Jarod
if he didn’t cry as much as I did, because I
had a physiological bond with the babies,
and Jarod could not fault me for the way
that I grieved. Hearing that it made a lot of
sense.
How we have kept going after these losses
also circles back to the words Jarod spoke to me in
2011. He said the word “Trust.” Trust in God, trust in
me. We vowed to each other, for better or worse, in
sickness and in health, till death do us part. We may not
know why God has taken our babies back into the king-
dom of Heaven, but he had a purpose for their lives. He
had a reason for
choosing us to walk
this journey. During
Jesus’ walk to his
death, Jesus fell three
times, but every time
he got back up. He
taught us through his
walk to his death, that
we too, need to keep
getting back up. Keep
trusting in him. He
knows the plans he has for us. Maybe his plans for us
are to share our story so that others see just how perfect
and fragile life is!
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Many people also ask us, what does your future
look like? Will you have more children? Yes,
we are open to having more children. Are we
open to adoption? Absolutely. We actually start-
ed the adoption process in January 2016. In Sep-
tember we got a call from our lawyer that a birth
mom wanted to meet with us and one other cou-
ple. So we went to meet her. She was a very
lovely young woman who just wasn’t ready to
be a mother. We admired her strength and wis-
dom beyond her years for choosing life for this
precious child, a boy. Unfortunately, she did not
choose us as the adoptive couple. And that is ok!
We respect her decision. We continue to pray
for her and for the child she gave life to.
To this very day, we are still in contact with
Choices Medical Clinic and our medical team. They
all still express the deepest compassion towards us, our
marriage, and our future decisions for growing our
family.
We know that there is a plan for us, and although we
cannot see it right now, we have faith in the Lord to
guide us.
We hope that other parents out there reading this know
that they are not alone in this journey. Know that Jesus
Christ has a plan for your precious child. And, you
are blessed to have a Little Saint in Heaven which
will guard and protect your family always.
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Engagement and wedding photos were by Weddings by
Chris.
Sophia’s birth photos were by Maria Roca of Wildest
Dreams Photography, a family friend.
Owen’s birth photos were by Joan McKellips, who was intro-
duced to Krystle by Choices Medical Clinic.
The family photo including photos of the babies (p. 15) was
by CLG Photography.
All other photos were taken by family members.
We want to take a moment to thank all of those who have
been instrumental in our journey. First and foremost, Jesus
Christ, thank you for the gift our lives as well as our chil-
dren’s lives and our faith.
Secondly, our priests: Fr. Dan Spexarth and Fr. John
Gilsenan (now deceased), thank you for your constant pray-
ers and guidance throughout our pregnancies.
Thirdly, to our Medical Teams: Dr. V., Dr. W., Ginger and
Jamie. You too walked
this journey with us and
provided unconditional
support to us and be-
came our second family.
We never felt like just
another patient; we felt
so welcomed and you
all treated us like family.
What you have done for
us was unsurpassable.
To Choices Medical
Clinic: Dr. Stringfield,
Martha, Susan, Denise, Mary Ann, Tonya and Debbie. Each
and every one of you holds a special place in our hearts. You
all showed such compassion towards us and our families
during both pregnancies. Our appreciation for you goes be-
yond surface level. All the mementos you gave to us, the
hand and foot molds of Sophia and Owen, the bonding sono-
grams, heartbeat bear, etc. no other words can describe our
feelings but a heartfelt thank you. You also embraced us as a
family and not only as patients.
To our parents, brothers and sisters, thank you for your un-
conditional love and support through our journey with So-
phia and Owen. Always speaking their names, letting us
know that they are not forgotten, means the world to us.
To our photographers and beloved friends, Maria Roca and
Joan McKellips. The gifts which you have given us, the gift
of the precious few moments we had with our children,
through your photography, will live on forever. We can re-
flect on all the happiness Sophia and Owen brought into our
lives because of the photos you took.
To our parish family, for the all meals you prepared for us
while we were making the final arrangements for our babies.
You will never understand how much ease this provided us
so we could focus on making
the final accommodations and
begin our healing process.
Finally, to Kansans for Life
and KFL Newsletter Editor
Amy Torkelson, thank you
for asking us to share our
journey with you.
XOXO,
Jarod, Krystle & MaKenzie
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My experience with perinatal hospice care page 16
Acknowledgements
Owen’s gift of breast milk to help a baby in need.