While Tyson was
driving to Salt Lake with my Mom, I was riding with the life flight team. I was
told that Elli's heart rate should be watched and should not go too far below
100 BPM. Often on the flight her heart rate was at 90, and then 85 --Then 80.
It was a little overwhelming to watch it as she lay in the incubator, and I feared
that she may not hold up.
Upon arriving
at Primary Children's Medical Center I was told that Ellison had what was
called Pulmonary Stenosis and that when a baby is in the womb there is a valve
that is open and helps to pass oxygen through out the infants body. When the
baby is born, that particular valve closes within 24 hrs to a weeks time. If
Ellison's closed she would not be receiving enough oxygen, so she would need to
be administered medication to insure that that valve did not close until she has
had a procedure and/or a surgery to help her Pulmonary valve work correctly.
They then explained that she would not be having surgery until the next day,
but that they had chosen to life flight her due to the severity and that she
would need to be up there in case things turned south and they needed to do an
emergency surgery.
Pulmonary
Stenosis for Ellison meant that her valve just wasn't created right. It was
more of a tight dome and didn't flap correctly and wasn't passing enough
oxygen. A typical person(s) valve flaps back and forth and pushes the blood
through to create enough oxygen. Her valve would push the blood through and
then the blood would leak and fall backwards which as a result the blood wasn't
flowing correctly and she wasn't receiving enough oxygen.
It was a rough
night that night and it was tough to wrap my mind around so much information so
quickly. Tyson arrived that night late and my mom stayed at my brothers house -
an hour drive away.
They sent us to
a "sleep room"- which was a tiny room with a twin bed and a chair. We
ended up sleeping for a few hours that night. I was beyond exhausted but it was
nice to be able to have a private place to cry and pray.
The following
day she had her procedure- exactly one hour after she was born. We were blessed
because she did not have to have her chest cut into. They sent a catheter up
her main artery near her groin and her right leg. There was a balloon that was
connected to the catheter. When the catheter reached her pulmonary valve then
they blew up the balloon in order to rip open the pulmonary valve in hopes of
the valve to be ripped so much that it would heal correctly and flap more
normal with less leakage.
When she was
done with her surgery they said that it was successful and that they had to use
the largest balloon they made because her condition was so severe. I was just
grateful that they did not have to cut her open and that she did so great with
her anesthesia and everything. It was a huge answer to our prayers. PCMC has
some extraordinary doctors and nurses. She still currently has leakage (blood
that flows the wrong direction) but it is much less than it was pre-surgery.
One Doctor told us that before Elli's procedure her heart murmur was so loud
that he was compare it to Niagara Falls, post surgery he said it sounds more
like a bathtub running.
We were at PCMC
for a total of 3 nights. My mom was was an enormous support in such a difficult
time. My brother brought us dinner and visited us, and Tyson's family and my
sister stepped up to take care of our boys. Everyone came together to assist us
in caring for our family.
Ellison's heart will be watched for the
rest of her life. She has doctors appointments with a cardiologist every 6 to 8
weeks for a year and then they will decide what do there after. Eventually we
hope that she will only have to see a cardiologist once a year- but thats only
if her heart stays stable. If it gets worse and the valve hardens than she will
have to have another procedure or a surgery. She will never not be watched. She
will have to see a Cardiologist for the rest of her life. We are totally okay
with this. I am just happy that she is here and that Medicine and research has
come so far that we are able to do a non-intrusive procedure that saves a
child's life.
Thanks to everyone's love and support as we went through all of this. I couldn't have asked for better friends and family and I mean that with so much sincerity.
