Sunday, May 18, 2014

A Year Ago

A year ago is when our lives changed forever.  I remember driving home from my parents house the evening of Mother's Day last year and telling Jeff about a friend of mine who was going through a very difficult trial with her children.  We were so grateful and happy that we were expecting a baby boy in a few months.

We had a follow up ultrasound from our appointment the previous week when we found out we were expecting a baby boy.  They said last week that they couldn't get a good look at his heart because of his position.  They asked us to come back in a week.  This appointment was not as quick as I was expecting.  After looking at our baby's heart silently for 30 minutes, the sonographer went and got another sonographer.  She looked around for 10 more minutes and they said, "Okay, we'll show these pictures to your doctor and we'll go from there." Although they couldn't tell us if something was wrong, I left this appointment feeling very unsettled.  I tried to live life normally, but I was pretty sure that what they saw was not normal.  I even went home and Googled ultrasound pictures of 20 week old hearts.  I was pretty sure that I had only seen two chambers on our ultrasound. 

I waited all day for a phone call from my doctor.  ... Nothing....

Another waiting day.  By the afternoon I started to feel a little better about things.  I tried to rationalize that if there was really something seriously wrong, they would have called by now.  But the next thing I knew, I was getting a phone call from my doctor.  She asked if I had been notified of the ultrasound results yet and apologized when she realized that it has been almost three days since the appointment.  She said that what they were seeing was an "underdeveloped left ventricle" in our baby's heart and that we'd be referred to a maternal fetal specialist for further care.  As soon as I got off the phone with her I called Jeff and told him what I'd heard.  I then called the MFS office and set up an appointment as soon as possible.  Thankfully they had an appointment the next morning at 8:00am.  I then started googling the phrase "underdeveloped left ventricle." I mostly found a syndrome called "hypoplastic left heart syndrome." I thought that this was most likely what we were dealing with.  I found that it was a survivable, but very serious congenital heart defect.  We would have a very bumpy road ahead and would most likely out-live our baby boy.  Talk about devastating for new parents!  But we still weren't sure.  What if it's not as bad as we think.... What if it's worse than we think.... What if it's exactly what we think.... I had so much anxiety going through my body.  Jeff came home from work early so we could be together and my family came over in the evening to be with us.  We cried together, prayed together, and received priesthood blessings. 

We were up early to go to our appointment.  My parents offered to drive us there since we really had no idea what state if mind we'd be in after the appointment.  They were such a huge support for us this week.  We went to the appointment where they did another full body scan of our baby boy.  The doctor came in afterwards and looked at all the pictures from our appointment on Monday, and from today.  He took another look himself as well.  He then talked to us and let us know that our baby's official diagnosis was HLHS.  We asked many many questions about what our future would hold, but he wasn't quite sure.  He said that he just deals with the pregnancy side of this, which usually goes pretty normally.  He referred us to a pediatric cardiologist who had an available appointment tomorrow morning.  He said that he would be able to answer more of our questions.  The rest of the day went by in a blur. 

Our meeting with the pediatric cardiologist was early in the morning.  We actually got there before the office was even open.  We must have been a little anxious.  At this appointment we had a fetal echocardiogram to get some more details about our baby boy's heart.  They looked at every single valve, ventricle, and vein.  Keep in mind that the baby's heart at this point was about the size of a!  After the very long fetal echo, we waited in an exam room for a while.  As we waited they brought us snacks and water.  Dr. B popped his head in at one point and apologized for making us wait.  He was trying to wrap up a few things with other patients so he would have enough time to have a full conversation with us.  He knew it wouldn't be quick.  You see, we were kind of a last minute appointment, but they knew it was an important one, so they squeezed us in.  So once Dr. B had some free time he came in and talked to us.  He confirmed the HLHS diagnosis and told us our baby boy had another complication along with it.  He made us feel very comfortable with our situation.  He gave us a great amount of background knowledge in heart anatomy.  He answered all of our questions.  He left us with a feeling of peace.  We left that appointment still devastated, but somehow peaceful.  And completely grateful that we were in his care. 

And from then on our lives would never be the same.