My experience with perinatal hospice carekfltech.com/The Pauly Family and Perinatal Hospice Care...

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



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.




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




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-




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




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.




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-




“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-




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




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.




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.




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




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!




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.




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




Acknowledgements

Owen’s gift of breast milk to help a baby in need.

My experience with perinatal hospice carekfltech.com/The Pauly Family and Perinatal Hospice Care...

Documents

Transcript of My experience with perinatal hospice carekfltech.com/The Pauly Family and Perinatal Hospice Care...