Waiting For A Name

Common Heart Defects

One of the shows my wife and I like to watch together is Game of Thrones.  Without giving any spoilers away to anyone who has not seen the show, it does a great job of making you fall in love with a noble family known as the Starks, only then to have lots and lots of bad stuff happen to them.  The show then begins to focus on some of the younger members of the family, one of which is the youngest daughter, Arya Stark.  One of the things Arya must do in the show is, before she is able to sleep at night, she must say the names of all the people she wants dead in her search for vengeance her family.  She does this in the form of a prayer.  Saying the names helps her remember who has wronged her family, and it also gives her a sense of control over the vengeance that she seeks.

Probably the hardest part of where we are at in the process with Brent is knowing there is a problem, but not having a name for it.  Without a name, we don't know what to call it, what to tell people when they ask about it, how to research it, how to discover what his options will be, his prognosis, what his life might be like, etc.  There are many types of heart defects, and while his sounds rare and complex based on what we know so far, we don't yet have a name for it - an official diagnosis.  We hope that Monday's visit to the cardiologist will provide us that. 

I am hopeful since many of the heart defects I've read about have a "and this is how we fix it" section, although many require lifelong care.  At this point, surgery or miraculous healing are really the only options I want to think about.

And I realize that once I have a name, it won't give me any more control over the situation than I have now.  Sure I will spend time researching it, reading about others who have gone through the same thing, preparing myself for a variety of potential outcomes.  But in the end, this is something that I cannot fix and I cannot control.

So before I go to sleep at night, I will say the names of the blessings I've been given, and then I can sleep...  Grace, Brandon, Brooke, Bryce, and Brent. 

David

Confirmation

Brent @ approx 22 weeks

The wait for the perinatologist visit was a very difficult 11 days.  When you've been told there might be something wrong with your baby, you naturally want to know everything there is to know right then and there.  You try not to let your mind run wild in those days while you wait, but it's in our nature - at least it's in mine.  I'll definitely be talking about faith at various times throughout this blog, but those of you who know me know that my mind works in a more analytical, scientific sort of way.  I immediately wanted to know exactly what we were dealing with so I could research it, figure out how to "fix it", discover the odds, find out what - if anything - was within my control, etc.

It turns out we wouldn't get much of this information at this visit.  However, we would get confirmation of what the doctor suspected, or knew, at the 20 week ultrasound 11 days earlier.  Our precious baby boy would be born with a heart defect.  The extent of which my wife and I still do not know as I am writing this.  The best I understand it and can explain at this point is that the heart has 2 major vessels that carry blood to it - 1 to the right side and 1 to the left side.  Instead of 2 vessels, Brent has one only on the left side of his heart.  We now have a follow up appointment on Monday with a pediatric cardiologist to hopefully figure out more about what this means.

I asked the perinatologist if it is fixable, and his response was "I think so", but he can't really say much because it isn't his speciality.  He asked us a lot of questions about whether or not we had a family history of hearth defects (we don't to my knowledge).  He asked about whether our screening tests had came back ok (they did to our knowledge).  So far, according to the doctors, it seems to be completely random.

But here is where my faith kicks in.  I can't believe this is random.  It has to be part of a bigger plan.  There has to be purpose for the pain little Brent and my family will go through.  There has to be... even if I can't see it yet.

David

The Beginning

Brent @ 20 Weeks

Friday, May 16th, 2014 was the day my wife and I learned that the future for our family might look very different than how we envisioned it up to that point.  We had just completed what seemed like a routine ultrasound at her 20 week check-up, and although the wait for the doctor seemed longer than normal afterwards, we had Bryce to keep us company and no reason to suspect anything could be wrong.  We had opted for all the screening tests discussed with us to that point, including DNA, and everything had come back perfect.  We had been through this before with our 3 older children, and even though our oldest gave us a bit of a scare with being born at 32 weeks, there wasn't really anything abnormal with any of the prior pregnancies to give us any reason to think this would be any different.  We were in for a surprise.

The doctor came into the office and started telling us that she was going to need to refer us to a perinatologist for a more detailed ultrasound because they weren't able to see everything with the heart that they wanted to see.  She tried to reassure us not to worry and that it could be any number of things and it might not be anything to worry about.  Unfortunately, I am pretty good at reading people, and I can tell she was pretty concerned.  As we left the office that day, we began to experience a mixture of a lot of different feelings - disbelief, uncertainty, shock - as we reflected on the visit and the fact that the doctor seemed genuinely concerned.  But, overall we still were not sure if this was something that was an issue with the equipment or positioning of the baby, so we tried to remain optimistic until our perinatologist appointment.

Perinatologist...  Am I even spelling that right?  I didn't even know what these doctors were called prior to all this, but I thank God for them.  And for all of the other doctors and specialists in our not too distant future.

David