My desire for a second child had
been burning bright well before Mason turned 2.
I felt like our family wasn’t quite complete. I was sure there was a soul out there that
belonged with us. I feared Mason being
an only child, and not having a sibling to lean on when Chris and I were
gone. So I bugged and I begged and
finally in October of 2012, Chris agreed.
We got pregnant in January. I was set to take a pregnancy test on
February 4th, which is my best friend’s birthday. But I was sure I wasn’t pregnant and so I
waited until the 5th. I
didn’t want a bad memory on her special day.
But, sure enough, there were two lines.
Those two pink lines, staring back at me, knowing our world would
forever be changed, but not yet knowing the full extent. It was a Sunday morning. We called our parents and then I went to
church with Mason. I could hardly
contain my excitement as I told our pastor about it.
My pregnancy was pretty
uneventful. I have heard more than once
that I do pregnant well, with no real complications. We had skipped all of the testing with Mason,
but this time, decided to have it done.
Our results came back with a slightly higher risk for Downs Syndrome. My OB was sure it was nothing to worry
about. We pushed it to the back of our
minds and carried on. In early June, we
found out that the baby was a boy, and we decided to name him Jackson.
After a routine ultra sound, my
OB came to me and said that there were some issues with his heart, and she
wanted us to see a perinatologist. She
said they could check everything out.
Some of our Downs risks were a little higher based on some of the things
the ultra sound tech saw. And she
couldn’t quite see all four chambers of the heart. And she thought his stomach was empty, which
might mean he had swallowing issues. So
I called and set an appointment for June 13th.
That morning as I drove to the
appointment, I called my mom. I was
scared and trying not to worry. She said
to me that things would be fine, and to call with the good news later that afternoon. Chris met me there and we went inside. The doctor came out to meet us and lead us
into an ultrasound room. I laid on the
table and we talked. He said he would
start with the fun stuff first. He
confirmed we were having a boy. He
scanned and we talked and joked. And
then he got very quiet. Eerily
quiet. And focused. And serious.
I started to cry. I knew
something was wrong. I held Chris’ hand
and wiped away tears. He turned to us
and said “I think you can tell from my silence that something is wrong. Your baby has a heart condition, called
Double Outlet Right Ventricle. Basically
part of his heart didn’t develop”. There
were many more words said after that. I
don’t remember most of them. He was so
kind, he even said we would not hear most of what he was telling us, and so he
wrote his cell phone number on the back of a card and told us to call anytime.
He stepped out of the room and
made a call to Children’s Hospital and got us a same day appointment with the
cardiologist. Chris and I had driven
separate. Chris had come in his work
truck and so he had to go back to the shop and drop it off. He was going to meet me there. I called my dad as I drove, and I cried. I was so scared. I didn’t know what any of this meant. But my worst fears were playing out in my
mind as I drove. Walking into the front
doors of Children’s, I looked around and saw kids everywhere. Some were in wheelchairs. Some in walkers. Some in cute little red wagons. Some walking.
Some sleeping in their mother’s arms.
But, what I noticed most, was they were all smiling. Even the really sick ones.
I headed up to the 3rd
floor and waited for Chris. I tried not
to cry. Finally a sweet nurse named Keri
came out and introduced herself and we walked back to another ultrasound
room. They scanned and talked and
scanned some more. Jackson wasn’t in a
very good position and so they sent me down to the cafeteria. Told me to get some food, walk around a
little, and come back. I called my mom
and cried. We came back up and they
scanned some more, and then they sent us to a family counseling room. It was not the last time we’d sit in that
room. The doctor came in and she drew
pictures and she talked in words we didn’t understand. We sat there, listening, but not really
hearing. Not processing. She told us that we had three choices. Once he was born, we could send him for a set
of 3 open heart surgeries, we could terminate the pregnancy, or we could do
comfort care and let him pass once he was born.
The only option we immediately turned down was comfort care. We both said that either we were doing this,
or we weren’t. But watching him die was
not an option. We left with our
drawings, still completely numb. We
drove home separate from each other. I
called my mom and cried some more. When
I picked up Mason from daycare, I hugged him and did my best not to cry. Seeing him, and worrying about what his
future would look like, was overwhelming.
Over the next forty eight hours,
Chris and I cried. We talked. We mourned
We sat in silence together. We
were angry together. We did our best to
parent Mason and to go to work. Our
minds a million miles away from either task.
I flip flopped a hundred times a minute on my choice. I could justify either option in my mind. I checked out of my pregnancy. I stopped noticing when he moved and
kicked. I stopped touching my
belly. I couldn’t handle acknowledging
him when I wasn’t sure we’d ever get to meet him. I begged Chris to end it immediately. I couldn’t go on for days with him inside of
me if we weren’t going to move forward.
I researched abortions and clinics in Denver that would do one this late
into my pregnancy.
On June 15th, we made
the decision to get an amnio done. The
same perinatologist met us at the office and performed the test. He was kind, and tried his best to make the
mood light. He said he would send out a
“fish” which would test for the 4 biggest risk factor issues we could have that
would cause a heart defect. He was
honest and told us that if any of the 4 came back, he would encourage us to
terminate.
June 16th was a
Saturday, and he was on vacation, but he called us anyways. He said that our “fish” had come back
clean. Chris and I were deflated, we
were looking for an easy out. We didn’t
get the free pass we had wanted. And now
we were faced with making a choice. An
awful choice.
June 17th was Father’s
Day. I started the day determined not to
talk about this. The giant elephant
sitting in the middle of our lives. But
we found ourselves talking and crying.
We both agreed that we would terminate the pregnancy. We just couldn’t do this. And then we called our parents. Chris called his mom and I stepped outside
and called mine. My mother is strong and
brave. She’s also a nurse, and so she
could make sense of all of this. She had
talked to the perinatologist and the cardiologist and she made it all sound
ok. It was do-able. We could have him and he could have the
surgeries and he could be ok. They would
come and be here and help with Mason. I
confessed to her that I didn’t think I could make myself walk into a room, and
kill my own child. And I that instant, I
knew what my choice was. God had given
us this baby. And if he was going to
die, it was going to be God’s choice.
Not mine. Through all of my flip
flopping and mind changing, Chris had made his decision as well. He wanted to move forward and give this
little guy a chance.
We started making plans to move
forward with the pregnancy. The rest of
our amnio came back clean and we breathed a sigh of relief. We went back to Children’s for more echo’s
and ultrasounds. We met Dr. Adel. He was kind and caring. He explained things in a way that made
sense. He knew that our first meeting
had been horrible, and that we’d left it not really grasping any of what was
said. So he started over. He spent hours with us that day. I instantly trusted him. He held me while I cried and told me that it
was going to be ok. That we could do
this together. He was the first person to
tell me that this wasn’t my fault, and that it was ok to mourn the loss of the
healthy child we thought we were having.
The remainder of my pregnancy was
spent with multiple OB appointments, perinatology appointments, and echo’s at
Children’s. I got really good at
reading the faces of the technicians as they scanned his heart. With each appointment, I had the hope that
they would discover his heart was whole.
That they had made a mistake.
Jackson wasn’t growing as well as they wanted. He only had 2 blood vessels in his umbilical
cord, and so I was constantly told to eat more and exercise less. Anything to get him to grow. He needed to be big and strong for what he
was going to endure.
It was decided that I would have
a repeat c-section. We would have a room
full of doctors and nurses ready to step in at a moment’s notice. It wasn’t the birth experience I wanted. But it was what was best for Jackson. We set the date of October 11, 2012.
Chris and I got up early the
morning of the 11th and headed to the hospital. My parents and brother would come later and
meet us there. We checked in and did our
best to joke and laugh. As long as
Jackson was inside me, his little heart wasn’t in danger. He was safe and secure. When they finally came to get me, I started
to cry. Walking myself into that
operating room is one of the hardest things I’ve ever done. I felt like I was putting Jackson in danger,
and it hurt so bad. It wasn’t the first
time I felt like a bad mom. My OB had
traveled to Children’s to deliver Jackson.
The perinatologist was there to assist.
He had told me earlier in the morning that today was his birthday, and
that was sure to be a good sign. Jackson
was delivered at 9:45 am and swept away before I could even hear him cry. Chris went back and forth, from Jackson’s
side to mine, telling me what he looked like and what they were doing. I begged to know every detail. Dr. Adel came and sat by my head and asked me
if I was ready to have a baby. I told
him I was pretty sure I already had! To
which he replied “crap, I’m late” and he dashed off. I needed that giggle to lighten the
mood. They finally let Chris bring
Jackson to me and I was able to see and kiss my son. He was small, but beautiful. I instantly loved him.
When I came back to my room to
recover, they brought Jackson in. I was
able to hold him and snuggle with him.
We passed him around the room a little and then I held him and tried to
memorize every detail about him. Those
two hours passed in an instant and they came and whisked him away to the CICU
down on the 3rd floor. My
parents went down there and said that he was comfortable and stable. I finally got down to see him later that afternoon. It was a long ride in my wheel chair, but
holding him was worth the pain of getting out of bed. We had all noticed that his ears were shaped
a little funny, but everyone said he was just squished inside of me. We all noticed that his left eye didn’t seem
to open as much as the right. They told us
he was just tired.
We spent the weekend in the CICU,
holding him and getting to know him and waiting for the bomb to drop that they
were taking him for surgery. I missed
Mason terribly. I’d never spent this
much time away from him and my heart longed to hold him and kiss him. He visited some and even got down to see his
brother for the first time. His smile
was one of pride. I will never forget
that look. He looked down at Jackson as
if to say “you are my little brother, my forever best friend, and I will always
look out for you”. He is the sweetest
most affectionate child. Having a little
bother who is sick will make him even more empathetic and patient.
Chris had gone home the night of
the 12th to be with Mason. I
was in the CICU with Jackson when a little girl coded. Doctors and nurses rushed to her room. Her parents cried openly and loudly. I knew she was sick, I’d been watching all
weekend. But then she died, right
there. This little 3 year old girl who
was less than 100 feet from me.
Jackson’s nurse and I both weren’t sure what to do with ourselves. Did we stand there? Did we watch?
Should she help? I told her I
needed to leave. And then I turned right
back around and stood over Jackson, as if protecting him. I cried for that little girl and her parents. I asked God to be gentle. They finally got her stable and I left
Jackson’s bedside. That little girl
passed away in the middle of the night.
Her room was empty the next morning and I said a prayer for her family.
Jackson’s hearing test was
October 13th. She started
with his right ear. I asked how it was
looking, and she told me it was fine, he passed, and I should go get some
lunch. I came back half an hour later
and she told me that he had mild to moderate hearing loss in the right
ear. And that he had profound loss in
the left ear. My world started to
unravel. Chris was at work. How was I going to tell him that his child
was deaf?
The morning of October 15th,
we were all in the CICU. I held Jackson
skin to skin and soaked in every inch of him.
The surgery date had come. The
speech and occupational therapists came.
They were worried about Jackson aspirating on bottles and encouraged us
not to feed him by mouth. Then a
geneticist came by. He looked at Jackson
and asked us a few questions. He stepped
aside when the ophthalmologist came. She
dilated his eyes. She told us that he
had a colaboma in his left eye and that his right eye was smaller than the
left. She said she couldn’t say for sure
if he had any vision at all and might be blind.
The fabric of my world started to fray some more. Then came the ENT, who told us that Jackson
had coanal atresia and that his nasal passage was blocked. He was put on oxygen to help him breath. The fabric ripped and tore. And finally the geneticist came and told us
that Jackson had CHARGE. He said it was
a genetic birth defect that affected many areas. He would have significant vision and hearing
issues. His airway would be small and
compromised. He would be small and
skinny and struggle to gain weight. His genitals
would be adversely affected. He might
not go through puberty without medication.
He would be immune deficient. The
fabric became single strands of thread.
Chris and I held one another and sobbed.
I was angry. We had done an amnio
and they had told us that everything was fine.
That it was just his heart. Finally
the CICU doctor got wind of what was going on, and chased them all away. She was genuinely sorry and empathetic that
they had done this on the day of surgery.
I thanked her for saving us. I
don’t think we could have taken one more person lining up to deliver bad news.
And then they came to take
Jackson to surgery. He was to have a
band placed around his pulmonary artery to slow the flow of blood to his lungs
down. Otherwise, he would drown in his
own blood and die. There wasn’t a single
sliver of hope left in us when they wheeled him away. We were beaten and battered and devastated. I could find nothing positive left in the
world. So we sat and we waited.
Esther came out and pulled Chris
and I aside. I took Chris’ hand in mine,
sure that she was going to tell us that he had died. The walk to that room seemed like an
eternity. She said that Jackson was
stable, but, that when they inserted the breathing tube, his belly had filled with
air and they didn’t know why. They were
going to bring in an ENT and scope him and see if they could figure out what
was wrong. We walked back outside and
told my parents. And we waited some
more. Esther came out and again pulled
Chris and I aside. Again I took his hand
and we walked. She said that they could
find no medical explanation for the air, and that he was too unstable in that
condition to operate and they were cancelling it.
I don’t think it even
registered in my brain that we would have
to hand him over again. It took about an
hour before we were allowed back to see him.
Nothing prepares you for seeing your child with a breathing tube down
their throat, asleep. I took a deep
breath and rounded the corner. The guilt
was over whelming. I longed to hold him
and comfort him, but I wasn’t allowed to move him. All I could do was touch his arms and
legs. He was so warm from the heater
above him. His face was puffy and
swollen. He had a yellow piece of paper
taped above his head that read “critical airway”. They had graded him a 3. Only thing worse was a grade 4.
The cardiologists and surgeons
and anesthesiologists all came and told us that they had no idea what had
happened. They had no medical
explanation for the air in his belly. They were sorry and baffled. I knew that God had seen us and knew we couldn’t do it. Glad stepped in and gave us a much needed do
over.
The next morning I came into the
CICU to find his surgeon at his bedside.
And they told me they were going to do surgery that day. He had had some cancellations, and Jackson
had been stable all night. The decision
was made. I frantically started calling
to get Chris back to the hospital. For
the longest time, it was just me and my dad.
The mood was light, and I even found myself joking a little with the
social worker. Chris arrived and we said
goodbye to Jackson, again, and they took him back. We found ourselves again sitting and waiting
for updates. Esther rounded the corner,
and immediately held two thumbs up. I
was beyond relieved. She said there had
been no air in the belly this time, and they were proceeding with the
surgery. Jackson sailed through it with
no complications and the surgeon was quite pleased with the bands. We were able to see him a while later. Now added to that breathing tube down my
child’s throat, was a band aid that was the length of his chest, covering the
place where they had operated on his tiny heart. I couldn’t bring myself to touch it. I spent that night at the hospital, to be
close, just in case. I was in the CICU
with Jackson when Dr. Adel came by. I
was starting to regret my decision to spend the night there by myself. We talked and I cried and he listened. He is such a gentle and caring man. He assured me that just because Jackson was special,
that didn’t change anything as far as he was concerned. It just made him more special.
It took a few days to wean Jackson
from the breathing tube. He was finally
at a point where he was breathing around it, and needed to be extubated. Looking at your child, awake, and crying, but
with no sound coming out of their mouth, is not something I was prepared
for. I mean, I’d heard about it, and I
knew it would happen. But in the moment
when it did, I wasn’t ready. My dad sent
me off to the waiting room and he bravely stayed with Jackson. I came back to find him awake, and on
oxygen. He ultimately ended up needing
more support than that, and was placed on a CPAP machine for a day or two, and
then back to oxygen .
Jackson was born on the 4th
floor of Children’s hospital in an operating room on October 11th. He spent the next 11 days in the CICU before
being moved to the 9th floor.
After a few days on the 9th floor, he was taken down for
surgery to place a feeding tube into his stomach, called a G Tube, so that we
could take out the NG Tube that was in his nose. He slowly recovered from that, and we finally
were allowed to go home on November 5, 2012.
26 days after he was born.
