What follows is a day by day recollection of the rest of Elise's story.
Friday, April 18th
On Friday morning, Matt and I went to my 38 week prenatal
appointment with Maternal Fetal Medicine.
I was 38 weeks and 1 day pregnant.
I had a strong feeling that it was time for Elise to be born, and that
we needed to discuss induction. My blood
pressure was elevated. I asked to be
checked for dilation, and I was dilated to 2 cm (from closed the week before). Due to having made progress, being 38 weeks,
and having elevated blood pressure, we all decided that it was the perfect day
to be induced! Matt and I were so
excited and nervous. Most of all though,
we were happy that we had made it this far and might have a chance at holding our
precious baby girl alive.
Our doctor called over to Labor and Delivery and told us to
go eat lunch and to come back in the afternoon to start the induction. We called our immediate family members to
tell them the news as we headed back to our house. Matt’s mom was already at the house and my
parents were almost there. We had told
them all before the appointment that we’d be asking about induction, so they
had made the trip from Kansas just in case.
At home, we double checked our hospital bags, waited until my mom and
dad arrived, and then told the kids and our parents goodbye. We stopped at Arby’s for a last meal and then
checked in at the hospital.
We were admitted into our room, met our nurse, Stacy, and
then talked with the doctors. We decided
to start induction with a low dose of Pitocin and adjust the dose gradually based
on how my body responded. Our goal was
for a “gentle” induction in order to make the labor process as easy on baby
Elise as possible. I was checked by one
of the doctors and was told I was 2 cm dilated and 50% effaced. A quick bedside ultrasound was done and it
was determined that Elise was head down.
An IV was started for antibiotics and the Pitocin around 3:00 PM.
Contractions started gradually. Matt and I did a lot of walking around the
halls to try to get Elise’s head low and engaged. Around 6 PM contractions started to get
uncomfortable. Matt rubbed my back and I
walked and bounced on the birth ball. By
11 PM, contractions were strong and close together. Our night nurse, Jen, even set up all of the
birthing and resuscitation equipment just in case, because she felt like we
might need it quickly and she didn’t want to be unprepared. Contractions were over a minute long and
coming every two minutes, so I hardly had any break in between. We were doing intermittent monitoring on
Elise, and she seemed to be tolerating the labor well, but the nurse was
concerned that there was not enough of a break in between contractions, so she
turned down the Pitocin. Somewhere in
that time, I was also checked again by a doctor and told that I was still 2 cm
dilated, but 80% effaced. After getting
checked and after having the Pitocin turned down, labor seemed to slow down
dramatically. It felt like Elise moved
up in my tummy instead of down, and my contractions spaced out.
Saturday, April 19th, 2014
My nurse turned the Pitocin up again, but my contractions
continued to become less intense and further apart. She tried turning up the Pitocin even more,
but my contractions fizzled out to almost nothing. After talking with the doctor, we decided I
needed a “Pitocin vacation.” This is
where the Pitocin is turned off for around an hour in order to flush the body’s
receptors, and then Pitocin is started again at a low dose.
The Pitocin was turned off, and we all slept for the next
hour. The nurse came in after 4 AM and
started the Pitocin again. Around shift
change at 7 AM, my contractions started to get very strong and painful
again. I was checked by a doctor around
8 AM and told that, despite all of my contractions, I was still only 2 cm
dilated and 50% effaced (even though I’d been told I was 80% effaced
earlier). Elise still seemed to be
tolerating labor well, but I started to get very worried that induction would
not work for me. The pain was so intense
and the contractions were so close together, that I couldn’t imagine why they
were not doing anything.
Matt convinced me to try laboring in the tub to try to help
me relax and cope with the painful contractions. After it was filled, I got in and labored as
long as I could in the water. All of the
sudden, I felt the need to get out. Matt
and the nurse helped me get out of the tub and dry off. I leaned on Matt for support and stood
through a few contractions. I felt light
headed, and told them that I could have overheated in the tub and needed to lay
down. Matt helped me lay on my left side
in bed. I suddenly felt a huge rush of
relief from the pain and told Matt and our nurse. With my next contraction, my water broke. I
yelled that my water broke and that I felt like pushing. I didn’t push at all, but my body did. In the next second I was yelling to the nurse
“She’s coming out!,” and at
approximately 10:10 AM, our beautiful baby Elise was born onto the bed without
anyone there to catch her. Our nurse
hurried to page the birth team (She paged them “Baby is here!”), while Matt and
I rubbed Elise to stimulate her to breathe.
She was dark purple and covered in vernix. She let out one beautiful cry, and Matt and I
burst into tears. In just moments, the
room was filled with doctors and nurses and the respiratory therapist. Thankfully, with Jen’s preparations from the
night before, everyone could get right to work.
Elise was placed on my chest and Matt cut her umbilical cord. Then, she was whisked away to the warmer to
begin resuscitation.
Matt followed Elise over to the warmer, where she was
surrounded by medical staff. I couldn’t
see her, and she wasn’t crying, so I kept yelling out questions, “Is she
alive?,” “Is she breathing?,” “What’s her heart rate?,” “What’s her oxygen
saturation?.” The team yelled back
answers as they worked on my baby. Matt
stood by Elise and held her hand and spoke to her as the medical team dried
her, stimulated her, and applied facial CPAP and oxygen with a mask. Elise was breathing on her own from the very
beginning, she just needed some extra oxygen and pressure to help support the
breaths she was taking.
After Elise was stabilized, they brought her over to my
bed. They applied a nasal cannula for
nasal CPAP and oxygen. Matt held her
first, and then I held her. We cried
with joy at getting to meet our precious Elise and hold her, alive, in our
arms. Matt sang, “You Are My Sunshine”
to Elise, and I’m not sure there was a dry eye in the room. We brought our family back, two at a time, to
briefly meet Elise. After that, Elise
was weighed, measured, and given her Vitamin K injection and her eye
ointment. She weighed 4 lbs, 14 oz, and
was 17.25 inches long.
Elise was then moved to her room in the Intensive Special
Care Nursery, or ISCN. I was moved to my
postpartum room on the same floor. Matt
and I went to Elise’s room to do some memory making activities with our awesome
Child Life Specialist. We were able to
make molds of both of her tiny feet and both of her sweet little hands. Elise then went through a wave of doctors and
nurses and lab technicians. She didn’t
seem to have any desire to suck or eat, so an IV was started in order to give
her Dextrose. She also had a few labs
that needed drawn, and they had a very difficult time getting blood. She ended up needing an arterial stick. I
left the room during this to try to get a quick nap (I hadn’t slept more than
an hour since Thursday night). Matt ran
home to clean up (my water broke all over him!) and then bring me back some
food. When I woke up from my nap, I
looked at the video stream of Elise in our room and noticed that she was off of
her CPAP and on room air! I was so
excited. We went back to be with Elise
in her room. The nurse and I washed
Elise’s hair. Some of our family came up
that evening to hold her.
Sunday, April 20th, 2014
Easter Sunday!
Our
little Elise started the day off on room air.
Matt and I gave Elise her first full bath. We had family up to visit and spent time holding and snuggling with
Elise.
I noticed, however, that Elise
began having more trouble breathing.
She
began making a “mewing” sound with every breath.
She was retracting and breathing faster.
After a while, the sound turned into
grunting.
We put Elise on a low flow
nasal cannula for oxygen to see if it would help.
We tried to keep Elise in bed instead of holding
her so that we could use positioning aids to keep her head back in a sniffing
position.
As Elise continued to grunt
and struggle to breathe, our nurse and our Neonatal Nurse Practitioner spoke to
me about what that might mean.
They
explained that if Elise continued to decline with her respiratory status, this
might be the beginning of the end.
They
weren’t sure if she would be able to come back off of CPAP due to possible
malformations in her airway, a small, recessed jaw, and brain development issues.
They also said her heart might be causing her
problems due to her VSD (Ventricular Septal Defect).
Matt and I felt crushed…just yesterday our
new baby was doing great on room air, and now they were telling us we might
only have a few days left with our sweet baby Elise.
We told our family, and I think their hearts
broke just as much as ours did.
That
afternoon, Elise had a chest x-ray.
We
did more memory making with our family and our Child Life Specialist, including
making a family handprint tree and getting a thumbprint for a necklace
charm.
That evening, at 7:00 PM, Elise
Josephine was baptized into Christ by Father Nick Mezacapa while surrounded by
her family.
After our family had left, Matt and I each did
Kangaroo Care (skin to skin holding) with Elise for the first time.
Elise loved it!
And so did we.
I was nervous for some reason to hold her
skin to skin, but it was the most beautiful, relaxing, amazing feeling to have
her snuggled up close to my heart, and feel her soft, warm skin against
mine.
That night, I tried to go back to
my room to get a little sleep, but every time I woke up, I would look at the
video feed of Elise and see her having a spell.
My mommy instincts must have woken me up.
I’d see her laying by herself, and then a light
would turn on and a nurse’s hands would come into view to reposition her,
stimulate her, and then put facial CPAP and oxygen on Elise with a mask.
I went down to visit her after each spell,
and then decided to just stay with Elise and hold her skin to skin for the rest
of the night.
Monday, April 21st, 2014
Elise continued on low flow nasal cannula oxygen.
We didn’t ever need to put her back on
CPAP.
She continued grunting at times,
but was keeping her oxygen saturations up (besides the spells overnight), and
seemed more comfortable.
We had to be
very careful about keeping her positioned with her head back and not
overstimulating her.
We started Elise on
caffeine to help with apnea spells.
Elise
had her cardiac ECHO, and we had lots of people in and out working with Matt
and myself on arranging home going equipment.
We weren’t sure how much time we would have left with Elise, but we
didn’t want to spend any longer in the hospital than necessary if they weren’t
doing anything for her that we couldn’t do at home.
The results of the ECHO came back that Elise
had a moderate VSD and a PDA and a PFO.
These were expected findings.
The
great news was that they didn’t feel as if her cardiac defects were immediately
life-threatening or contributing to her current respiratory issues.
Elise spent much of the day snuggled in our
arms and the arms of family members.
We
cherished every moment.
Tuesday, April 22nd, 2014
Tuesday was a very busy day as we met with doctors and
finalized everything we needed to get baby Elise home.
Elise had her first cardiologist
consultation.
He discussed her ECHO and
what we might expect in the future with her heart, as well as what treatment
options might be available.
We set up a
follow up appointment for 2 weeks later.
Two companies met with us and set us up with
oxygen, a pulse oximeter, and NG tube feeding supplies.
We set up a pediatrician and follow up visit
for Thursday.
Elise’s medical team
thought that we had a chance at maybe having a few weeks or longer with her at
home at this point.
It was such an up
and down journey…one moment she was doing great, the next moment she
wasn’t.
Matt went out and bought Elise a
bassinette that we could angle up for Elise due to her having tube
feedings.
That afternoon ended up being
a rough one for all of us.
Elise started
to get fussy and cry.
She cried for
hours, and we couldn’t seem to console her.
We held her, sang to her, read to her, fed her, changed her diaper,
tried laying her down…anything.
She ended
up calming down right before we were discharged home.
We packed up all of our things and settled
Elise into her car bed (a car seat that a baby can lay down flat in—Elise
couldn’t tolerate sitting in a normal car seat due to her airway issues).
And then we began the long journey home.
That felt like the longest car ride of my
life.
Elise wouldn’t stop crying and she
kept dropping her oxygen saturations.
Her skin was mottled, and she looked very sick.
I held her hand and turned up her oxygen, but
she would only recover temporarily.
We
finally made it home, and Elise settled down.
I thought that maybe the day had just been too stressful on her and
hoped with all of my heart that she would do well once we were home.
That night was difficult and very scary. Elise was dropping her oxygen saturations
more often and having apnea spells. She
stopped digesting her food very well. We
also had some problems with her oxygen tanks that made the situation worse, but
figured it out on our own. Matt and I
had to take shifts staying awake with her because we needed to respond quickly
once she started to drop her oxygen saturations and couldn’t risk being groggy
from sleeping. I kept praying that she
would adjust to the transition home.
Wednesday, April 23rd
Wednesday morning, it became apparent to Matt and I that
Elise wasn’t getting better. In fact,
she was doing much, much worse. She
started dropping her oxygen saturations drastically with any change in position
and was struggling to breathe more than ever.
We talked about taking her back to the hospital, but we felt that she
wasn’t stable enough to survive the trip there.
Matt and I were forced to make the most heart breaking decision we have
ever made. Out of love for our daughter,
respect for her life, and desire for a dignified, peaceful death, we decided to
call our palliative care team to come to our house and help us get set up with
hospice.
Our family left the house and hospice and the palliative
care team came in. They helped us make
Elise comfortable. For the first time in
her life, I finally saw our baby relaxed, peaceful, and breathing easily. I hadn’t realized how much she was struggling
to breathe until I finally saw her when she wasn’t struggling anymore. The next few hours were the hardest hours of
Matt and my lives as we comforted and loved on our little baby girl right up
until the moment that she died in our arms.
Elise went to be with God at about 7:35 PM.
Looking back through pictures, I can see how each day Elise
looked more tired and was fighting harder to survive. We prayed that if she was done fighting, that
she would give us a clear sign.
Wednesday morning, we feel that she did.
As much as this journey has hurt, we are still beyond
thankful and feel incredibly blessed to have been given four and a half
amazing, life-changing days with our precious Elise.
