Friday, June 7, 2013

Let's Start at the Very Beginning...

...a very good place to start.

May 6 - We went in for our anatomy scan and to find out the gender of our baby.  Everything looked good, we found out we were having a BOY, but when it came time to look at the heart, the ultrasound tech got very quiet.  After searching for a while she told us to come back in a week because she couldn't see the heart very well.  As we left the appointment I was feeling a little worried, but Jeff assured me that everything was fine.

May 13 - We went back for some more pictures of the baby's heart.  After searching for half an hour or more, a second ultrasound technician came in.  She looked around, took some pictures and told us that she would send them to my doctor and we would, "go from there."  I left that appointment feeling very worried.  Jeff again assured me that everything was fine.  I tried not to stress about something I didn't know for sure, but I had a feeling that something was not right.

May 15 - After worrying for two days straight and waiting on pins and needles to get a phone call from my doctor I finally started to relax a little bit.  I kept telling myself that if it was something serious, they would have called me sooner.  But that afternoon, I got the phone call from my doctor.  She told me they noticed an "underdeveloped left ventricle" in the baby's heart and that I needed to make an appointment with a maternal fetal specialist.  I hung up the phone and immediately started googling the phrase "underdeveloped left ventricle."  I know the internet is not super trustworthy and it can be very scary, but I needed more information of some kind.  I also called the maternal fetal specialist and made an appointment for next morning at 8:00 am.
Jeff left work early to come home so we could be together and my parents and sister's family came over that evening.  We talked about what the possibilities were.  Jeff, my dad, and I had all goggled on our own and noticed that HLHS (Hypoplastic Left Heart Syndrome) came up over and over again.  I was pretty sure that this is what we were facing, but still very scared about the unknown.  My dad gave Jeff and I a blessing.  My mom and dad offered to take us to the appointment the next morning (which was an hour away).
What I mostly remember from that night is being very, very scared about the unknown.  Scary questions and thoughts were very difficult to push from my mind because we basically knew nothing at this point.

May 16 - We met with the maternal fetal specialist.  They did another full body ultrasound to see if there was anything else going on besides heart issues.  And of course they looked very closely at the heart again.  After the ultrasound was finished the specialist talked to us and told us that the official diagnosis would be "Hypoplastic Left Heart Syndrome."  He could not answer a whole lot more questions because he deals mainly with the pregnancy side of things.  As far as pregnancy, everything should go normally.  I don't have to be on bed rest.  I just need to concentrate on growing this baby as big a possible so they have more heart to work on after he is born.  At this point there is nothing we/I can do to make the problem better or worse.  They set up an appointment for us with a cardiologist for the very next day at 9:00 am. 
I remember leaving the appointment with a mix of so many emotions.  Grief.  Fear.  Uncertainty.  Confusion. Peace.  The rest of the day was spent is a daze with a roller coaster of emotions constantly coming and going.

May 17 - We met with our cardiologist.  They did another ultrasound (That's 4 in two weeks, if anyone's counting.) and a fetal echocardiogram.  This took over an hour.  After taking many, many pictures of the baby's heart, she took them to show the cardiologist.  We waited in a small room nearby for almost an hour. At times we thought maybe they forgot about us, but then they would stop by to offer snacks.  The cardiologist popped in for a second while I was in the restroom to say that he had someone else to talk to and then he'd be back.  He wanted to clear his schedule for us because "this will not be a short conversation."
When he came back he talked us through our diagnosis.  He was very good about explaining everything that should be happening in a healthy heart and how our baby's heart is different.  He also told us that our baby has HLHS and another anomaly, TAPVR (Total Anomalous Pulmonary Venous Return) that we will need to deal with.  He talked us through the three open heart surgeries that will take place after the baby is born.  And he answered the many, many questions we had.
We were so blessed to meet this cardiologist.  We feel like we are in such good hands.  I left this appointment feeling a lot more peace and physically stronger than the days before.  I felt like we finally had some knowledge on this subject and knowledge is power.  Now that we knew what we were up against we could start moving forward.

Now - Every since that crazy week Jeff and I have been doing better and better.  Sometimes the emotions from all of this catch up with us.  Sometimes the stress of it all hits hard.  But for the most part we are doing well.  We are happy.  This is the trial that our Heavenly Father has given us, and we are doing our best to endure it well.

Your love, prayers, thoughts, and words of encouragement are very much appreciated.  Many people have reached out to us and we are so blessed to have such wonderful friends and family.  We love you!!

2 comments:

  1. Laura, I hurt for you. You and Jeff are in our thoughts and prayers. We love you!

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  2. Your baby needs parents like you! You will be awesome!

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