This is a day I will never forget and a day I wish I would never have
to remember. We found out some news that no parent ever wants to hear. I
think it tops the hardest day of my life, but I know with the help of a
loving Heavenly Father we will make it through.
At my anatomy
scan awhile back, the ultrasound tech was having a real hard time
viewing the heart but never really said a whole lot about it. He had a
strong heart beat and everything else looked great. As many of you know
we have small babies so they do growth ultrasounds periodically on me to
make sure the baby continues to grow. She just told me that the baby
was laying in a hard position to view the heart and to make sure at my
next growth ultrasound that they checked the heart once more. I never
thought anything of it. So a month or so passed and I went in for my
growth ultrasound and once again the tech started to check his heart.
She could view it this time, but once again she said he was being
stubborn so she was going to ask my OB if the pictures she got were good
enough. So I go to my room and wait for the doctor and can hear them
out in the hall discussing my lil guy. So Dr. Broberg comes in and tells
me they would like to send me to a specialist, a perinatologist, to
have them get a better look at the heart. He assured me he thought
everything was great but he just wanted to be certain, so if something
was wrong they could be prepared. I did overhear the tech in the hall
say that she had a hard time seeing the blood flow in part of the heart,
but they never mentioned this to me. So they got me in as soon as they
could which was the following Tuesday, 3-12. It had already been a
pretty rough day where we had just buried my Grandpa. We actually left
the dinner to make it to my appointment. Jord was in Vernal. We both
felt like things were fine and didn't think he needed to take a day off
work. My mom would be there to go with me, so he stayed in vernal so he
could save his vacation for when the baby came.
On the way up, Az
fell asleep. She hadn't napped all day long so I asked my mom to stay
in the car with her so she would stay asleep. Once again I was thinking
nothing was wrong so I felt fine going in alone. I went to my
appointment and another tech came in and did my ultrasound. She finished
up and said the specialist would be in to explore a little more then
talk with me. Dr. Gainer came in and she start rubbing the probe around
checking out lil man. She was super sweet and just kept looking. At this
point I was starting to get nervous. I knew something was wrong. I just
didn't know how bad.
She asked me if the little guy had a name
and I replied, "yes his dad got his way and we are naming him Tytan!"
she looked at me and said, "I like that a lot. That's a very strong name
& your lil guy is going to have to be a very strong lil one. I
hate being the one to tell you this but your son has a heart condition."
At this point I was still in denial I think. I was trying not to
break down and I just looked at her and said, "okay but it can be fixed
right?" I was thinking a minor surgery and he everything would be okay.
She further explained that yes it can be fixed but it is going
to be a long tough journey for all of us, especially him... This is
where i lost it. It felt like the perfect life I had been living was
crashing down. Our lil Tytan has a extrememly serious heart condition
called Hypoplastic Left Heart Syndrome. It is basically where the left
side of his heart does not work. It is going to require surgery and lots
of it. She explained I would now being a very high risk pregnancy and
spending much of my time at the doctors. I would be delivering at the
University of Utah and they would schedule to take him because they
don't want me to go into labor on my own. That would chance losing him,
so they want me at the U with the right team to stabilize him. They will
take him immediately after birth to Primary's Children. They will make
sure he is stabilized and then he will go into surgery shortly after. I
guess they like to do the first open heart surgery as soon as they can.
This will be his first of the three. He will have another one at 6
months, and a last one at 18 months-2 years then eventually a heart
transplant when this one wears out.
If you can imagine at this
point I am dying. I had so many questions and what ifs running through
my head. The doctor asked if I had family with me and I told her my
husband was in vernal and my mom was in the car with my lil girl. She
tried calling my mom but couldn't get a hold of her.
And if that
wasn't bad enough she continued to tell me my baby would be spending the
first 6-8 weeks of his life. In the hospital, come home on a feeding
tube & oxygen, and many other horrific things. She started
telling me survival rates and other complications he could have. At this
point I was a complete and total mess. I just asked her to stop and
said please just let me take in what you initially told me.
She
again was so sweet and tried to console me. She told me to go ahead and
call my husband and take all the time I needed then to come out and talk
about a few tests that I needed done ASAP and what direction we needed
to take from there.
Calling Jord was the hardest call I have ever
made. I didn't want to be the one to tell him his little man that he has
been soooo excited for had a very serious heart condition and there are
chances we may never bring him home. Jord sobbed and sobbed like a
baby. It broke my heart and I just wanted to reach through the phone and
hug him. This only happens 4 in every 10,000 pregnancies with dominant
in boys born in summer months. I have asked why us? So many times. I
felt like a failure as a mother even though I know there was nothing I
did or can do to change this. The cause is unknown and it just sometimes
happens.
After I got off the phone with Jord I went back with
the specialist. She set me up about 20 different appts. Including the
one at primary's to start our heart journey. I also had a 1500 test
taken to make sure no other problems were wrong with him. It was a long
10 days but thank heavens the test came back normal and everything else
with him looks great!!
Well I am going to wrap this up because I
have been up since 3 AM crying and I need a lil sleep before preschool.
For now we are taking one day at a time and praying for the very best
outcome. We know it isn't going to be easy but we are still so excited
to meet our lil man and love on him. This is happening for a reason and
hopefully we learn what the Lord is wanting us to learn.
I am
being watched very closely and feel the doctors office is my new home. I
see three doctors a week and we are getting things set for his birth
soon.
To all my friends and family: please pray for our lil guy.
Pray that he will be strong enough to endure these intense surgeries he
will be having. Pray for him that things will go smoothly without any
complications. Please pray for us as parents that we may be able to do
this and do what's best for our lil man. Please pray for us to have the
faith and strength to endure these trails placed before us. Please pray
for lil Az that she will be an understanding big sister and not feel
neglected for the time she may have to spend away from her mommy
& daddy until we get Mr. Tytan on the road to recovery. She will
be staying in salt lake with us through it all but she's unable to be
in the NICU so I am worried sick she is going to have a hard time
without me. Please just pray that everything will fall into place for
us... Physically, spiritually, emotionally, and financially! It's going
to be a long hard journey for the next couple years, but we wouldn't
trade our lil man for anything in the world!
To
all of those who have texted/called and everything else thank you. Your
love and support means the world to us. Please continue to pray for our
lil man Tytan! He needs all the prayers he can get.
