Unicorns, Butterflies, Baby Girls…and Half a Heart.

by Suz on May 11, 2014

In the past year,  I’ve been on a lot of adventures….climbing in patagonia, providing anesthesia in Ethiopia, visiting the middle east…but all of those things are small fries compared to the adventure we’re about to start in a few weeks.

Lula at 18 Weeks


Yep…that little thing has been living inside me for the past 38 weeks.  Her name is Lula, and she’s due in a few weeks.  Unfortunately, it’s not all sunshine, butterflies, and unicorns as we found out at our 20 week ultrasound she has a very severe heart defect- pretty much the worst one you can get.

Hypoplastic Left Heart Syndrome (HLHS) is when the left ventricle (the part of the heart that pumps oxygenated blood to the body) doesn’t develop and/or work at all.  Lula essentially has half a heart.  The cause is unknown and the treatment is 3 open heart surgeries after birth (The first, the Norwood Procedure at a few days old. The second, the Glenn at 4-6months.  The third, the Fontan around 2 years old).  The surgeries aren’t considered “corrective” in the fact that she’ll be “fixed” forever.  Rather, they are “Palliative”, which means it allows her to keep living for an undetermined amount of time.  Thirty years ago, babies that had this all died…the oldest living people now with HLHS are in their mid-20’s.

While HLHS survival rates have improved dramatically over the past 20 years, they still aren’t awesome…About 10-20% of babies die within a year and 25-35% of kids don’t live past their fourth birthday.  Click here, if you want to know more about the condition, the surgeries, and see some nifty pictures explaining everything…or I’ll write about it in more detail later.

I’ve been meaning to write this post for a long time…but I keep putting it off.  I thought I had it in me to write about the whole experience: What it was like to initially find out that there’s a good chance our baby girl dies at an early age (sucky), how it feels to wonder if it was something that I did to cause it (crappy guilt), what goes through my head when someone asks if I’m going to “change the course of the pregnancy” because somehow killing my baby now makes more sense than the chance she might die after she’s born (thoughts better left unwritten), how it feels to look forward to giving birth and holding our baby for a few short minutes, dreading when they take her away from me to bring to the ICU(terrifyingly bitter sweet), wondering why this is happening to us out of all the people we know (because we are blessed to have a child with whom we’ll never take a day of her life for granted…I’m still working this one out)

Lula at 32 weeks.


Through it all so far, not everything has been sad…sometimes it can get a little bit funny.  Could just be the old ICU nurse in me, but there are actually a lot of jokes one can make about having only half a heart.  As for Justin, he’s pretty excited that his little girl will have gore-tex patching her heart together (only to a Coloradoan could this be a high point to pediatric heart surgery).

I am convinced the love, support, and prayer from all our friends and family (and friends of friends and family whom we don’t even know) is what makes this all seem okay.  There are people praying for Lula and our family, literally, all over the world.  And God has shown up.  I don’t much(or ever) talk about God/Jesus/faith here, but there is no way to share our experiences relating to this devastating news without bringing up the grace, love, and comfort He has shown us in the past few months.

We didn’t pick this for ourselves and our baby.  While there is still an immeasurable sadness that goes along with all of this, we feel at peace and are trusting Him to bring us out the other side closer to Him and stronger in our faith, no matter what happens.

I made myself write about this so I could inform more of our friends and family about what’s happening so they can start/continue praying for us.  Our specific prayer requests are these.

  1. That she cooks inside me a little bit longer till closer till her due date, giving her more time to get fat and chunky for surgery
  2. That I’m able to deliver through the “southern” route and not by c-section, because I won’t be able to hold her at all before they take her to the CICU if I have a c-section.
  3. That all goes well throughout her first surgery (sort of obvious one…) and she recovers well.
  4.  That she learns how to eat and gains weight appropriately afterwards so she doesn’t need to come home with a feeding tube (nutrition and feeding is usually what keeps babies in the hospital after these surgeries as they either don’t have the energy to eat, or they have problems learning how to eat as they’ve had tubes and such in their mouths)

After more than ten years in the healthcare field, it’s strange and unsettling to be on the patient side of things.  I feel a little bad for our doctors and nurses that have to deal with me.  Most patients come into their appointments saying, “According to google and WebMD….”   I walk into my appointments saying, “Sooo…I just went to this pediatric cardiology conference and there’s this new study out…”  I’m not sure who they roll their eyes at more, but I’m assuming it’s at me.

We are blessed to live very close to Colorado Children’s Hospital, where they do quite a few of these surgeries with good results.  Despite dreading all the bad, both Justin and I are getting very excited about getting to meet this little fighter warrior baby girl.

Lula at 37 weeks, showing off her fighting fist


In her last ultrasound, we couldn’t get any good pictures because of her position.  All she wanted was to raise her fist…and what a strong looking fist it is.

Thank you all for your continued thoughts and prayers, they mean so much to us.  My goal is to update on her condition via the blog, so I don’t have to send a million different emails out.

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