3.12.13

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.