August 26th, this day
has significant meaning to me and my family. A year ago today is when this
whole roller coaster ride began. It is hard to believe that it has been a full
year now since we first heard the words, “very small preemie,” “heart defect,” “IUGR,”
and “Down syndrome.” In some ways I feel as if it were yesterday as I can
easily recall even the simplest details of the day as I have played them in my
mind so many times. In other ways it feels as if I have lived a lifetime since
that day.
For some it may not be the most
interesting post I’ve ever written but I’ve told people that at some point I
would share the story of that day and the upcoming week. It can be tough as I
relive those memories and the feelings that accompany them. It is also very therapeutic
as I write them and see the journey we have made it through by His love and
grace. So the following are my memories of that day.
On
Wednesday, August 26th, TJ and I headed to Tulsa for a routine
checkup where I would get more ultrasound pictures and begin scheduling the
more frequent visits that mark the third trimester. I was officially 28 weeks
along that day. I was dreading drinking the awful drink that every pregnant
lady dreads when it's time to test the blood glucose level for gestational
diabetes. This visit had originally been scheduled for the previous Wednesday
but the doctor had to reschedule so while I got to put off my glucose test one
week I was ready to see how our little boy we had decided to name Kaleb was
doing.
As we
got into Tulsa and drove by Saint Francis South where Kaden had been born we
commented that we would be getting admitted there before we knew it and began
talking about how fast the pregnancy was going and wondering how labor would go
this time. I joked that I had a feeling this one was going to be ornery and I
could see him coming early unlike his brother.
As usual despite our best intentions we had to
hurry in so that we would check in on time for appointment. Of course there was
a line and even though it was our fault we were cutting it close I became antsy
in my game of beat the clock. Only to find out that my doctor had been called
out for two deliveries. I was to be seen by the physicians assistant instead. I
was fine with that, I liked Megan and it was just a typical visit and
ultrasound. It did make me remember the last time I had her for an appointment
which was when I came in when I was experiencing my first miscarriage. She had
been the one to tell me it wouldn't be a viable pregnancy but I worked now to
shake the memory from my mind.
We
quickly got called back and led to an exam room. Dr. Rapp was just on his way
out for the two deliveries and popped his head in to say hi and that he’d see
us in three weeks. After having the lab draw and going back to the exam room
the Megan came in to perform my ultrasound. Instead of small talk about Kaleb
or the reassurances that everything was looking good, it quickly became
apparent something was wrong. It began by her asking my due date as she thought
maybe she had the wrong due date. Flashbacks to the last time I saw her as she
performed the ultrasound and asked me if I was sure of how far along I should
be as it wasn’t measuring up. My heart began to accelerate as she tried to
calmly tell me she was going to remeasure him. After performing the various
measurements she admitted he was measuring two to three weeks behind his due
date.
The
baby that had at every appointment measured right on track for his due date was
all of a sudden two to three weeks behind. I quickly realized that five weeks
ago he measured typical for his due date had not grown very much at all in the
five weeks since. I began to fear for my baby as she worked to keep a poker
face in place as she explained that she would be taking a look at the blood
flow. While she worked to hold the poker face you could tell it wasn’t looking
good either. She soon confirmed my fears as she left the room to go call Dr.
Rapp and discuss with another doctor in the practice.
She was
only gone about five minutes but in those five minutes I had to work to keep it
together. I had never been one for panic attacks but I felt as if I was on the
verge of panicking and losing control and I tried to will her back to the room
and give us some answers. TJ and I both sat in shocked silence and we realized
our carefree day had suddenly taken a different tone. When she did appear she
didn’t give us many answers except to tell us that we needed to head to Saint
Francis hospital and be admitted for monitoring. While I worked to hold my
emotions together TJ went into problem solving mode as he hurried to the car
already on the phone making arrangements for Kaden who was still in
Bartlesville at daycare. I told him I need to go to the restroom before
leaving, primarily to give myself a minute to collect myself and gear up for
whatever lay ahead. As I made my way out of the restroom Megan was waiting for
me at the door. “There’s been a change in plans. Dr. Jones is waiting for you
at his office. You are to head straight over there,” she said with tears in her
eyes.
We
didn’t know what to say during the few miles to the fetal maternal specialist
office. The lightheartedness of the afternoon had suddenly been replaced by a
fear that gripped both of us. I was trying hard to not think about the text
messages that had already dinged on my phone from my mother asking how my
appointment had gone.
We
found our way up to our now second appointment of the day. While I filled out
paperwork TJ call one of our closest friends, Dalton, and asked him to pick up
Kaden and take him to their house. When Dalton asked what was going on I could
hear TJ getting choked up and saying, “I can’t talk right now, but pray.”
We were
led to an ultrasound room where we had a 35 minute ultrasound. An ultrasound
that I couldn’t wait to be over so we could find out what was going on but at
the same time didn't want to end because as long as I was getting the
ultrasound and I could see him moving and could see his heart beating on the
screen I felt that he had to be okay. I stared at his heart watching each beat
on the screen wishing I knew what they were looking for. I tried my best to
make out each feature and would quickly try to read anything she typed. I ran
through in my head the little bit of knowledge that we had been given and
wondered what they meant for our baby and our future.
After
the ultrasound we were led to a room to await the doctor. We were both tired of
waiting for answers. Luckily the doctor quickly came in. He wasted no time with
small talk and began by telling us that Kaleb had a heart defect. He believed it
to be a full AV canal defect and he would continue to monitor it. That if it
were a full AV canal defect it would require open heart surgery. He then went
on to say that this meant he had an increased chance of being born with Down
syndrome as this type of defect is very common in children with Down syndrome.
As if that wasn't enough to try and take in telling us that we would be having
a very small preemie. He then began to throw out terms such as blood flow and
IUGR. He explained the difference between absent blood flow and reverse blood
flow. I was having absent blood flow IUGR which meant that blood was not
flowing through the umbilical cord as it should so it wasn’t allowing him to
grow and develop. We would be monitoring to see if it became reverse blood flow
which is what Tulsa Women’s Health Care believed was happening when they sent
me over. Reverse blood flow would put us on the clock as it would cause fetal
death within a number of days.
We
would be having a preemie, it was now just a matter of when. It was a balancing
act of when it was more beneficial to stay in the womb vs when it became to
detrimental. I was now to be doing what I could to help develop him as much as
possible before they had to take him. My job at that moment on was to lay on
either side to allow optimal blood flow. Only getting up for bathroom breaks
and a shower a day. I would have to be monitored twice a week until they
determined it was time to deliver. I was to be monitored this frequent due to
the blood flow that could turn to reverse blood flow therefore putting us on
the clock as well as the fact that he was already so far behind now and by
their best measurements was only appearing to weigh 1lb 13oz. I was told that I
would get the first round of a two shot set of steroids that day to try to help
give him a better chance. We were to return the next day to take the MaterniT21
test and get the second steroid shot.
We headed
home in a state of shock. Gone was the lighthearted conversation that had
filled the car on the way to Tulsa. Gone was the life we had known before. It
seemed ironic that just hours before we had been guessing at when Kaleb would
decide to make his appearance. Now we were simply hoping we would take home a
baby at the end of this.
In truth
we still didn’t feel as if we had a good grasp of what was going on. All of a
sudden many new medical terms had been hurled our way and we couldn’t yet grasp
their meaning or significance. We continued to drive back home to Bartlesville
and to go pick up our two year old. With not knowing what the future held for
Kaleb I was suddenly very ready to hold Kaden in my arms. I felt I needed to
physically hold one at least one of my sons and feel his closeness, to see that
he was safe. As we drove we would go back and forth between speechless, nervous
chatter, and preparing a plan of attack.
We pulled
into our close friends, Courtney and Dalton’s drive way where Kaden was busy playing
with their son, Carter. It was a relieve knowing that while our world felt like
it had been rocked today that it had yet to affect Kaden and to him it was
simply a chance to go to Carter’s hours to play. Of course there was no escaping
Dalton and Courtney who still had no idea what was going on.
I tried to
sort out my thoughts and figure out how to explain what was going on when I
still didn’t quite understand. I explained that with the type of heart defect
that he had that it was common with children with Down syndrome so that meant
he had a higher chance of having Down syndrome. While that was part of today’s
story the more pressing matter was the blood flow. When TJ and Dalton got back
with food everyone seemed to remember I was now to be doing my part of
developing Kaleb and was to be laying on my side. So it began, the independent
always busy person had to let that go and be still in hopes that I was doing
everything in my power to give Kaleb a fighting chance.
Wow, what a story this is - it's riveting. Thank you so much for sharing! I cannot imagine the feelings you went through that day, but the fact you were able to press on and hold it together comes to show that there is nothing you can't handle! Your boys are so blessed to be yours - what an amazing mother you are.
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