The Specifics...and a new blog

Whew!

The last 24 hours have been a whirlwind.  So much so that my brain popped awake at 5am this morning thinking of a million little details that I need to do today.  Updating my blog has been at the top of my list for days now, so I'll take some time this morning.  I apologize though, it's going to be quick and dirty. 

In case you need a recap:

The Overview

The Day it All Changed

The Waiting

Now for the quick and dirty specifics.

On February 22, we went to our first pediatric cardiology appointment at our local Childrens Hospital.  A place nobody ever thinks they'll find themselves.  I honestly never gave this particular hospital much thought, other than occasionally I would have a friend take their child there to see a specialist or for more information about something.  Childrens hospitals are amazing places. 

We had a very thorough diagnostic ultrasound of the baby's heart, called a fetal echocardiograph.  It took about an hour and was done by a cardiologist named Dr. Swanson, who coincidentally was also pregnant and due around the same time as me.  She warned us ahead of time that she wouldn't say much during the ultrasound because she was concentrating on getting good pictures, but that she would go over everything with us right afterward. 

Baby girl was in a great position during this first fetal echo and Dr Swanson was able to confidently give us a diagnosis of Pulmonary Atresia with Intact Ventricular Septum (PA-IVS).  In a nutshell, this means that sometime during the first 8 weeks of development, our baby's heart didn't form properly.  Specifically, pulmonary valve - the leaflet-shaped valve that pumps blood from the right ventricle to the pulmonary artery and into the lungs - is not functioning, or is atretic.  This causes the right ventricle to be abnormally small in size, since it is not functioning as a pumping ventricle.  The right side of the heart is the side that pumps oxygen-poor blood to the lungs, while the left side pumps oxygen-rich blood to the rest of the body.  Therefore, PA-IVS is considered a cyanotic heart defect (meaning the defect effects blood flow to the lungs), and years ago these babies were referred to as having "blue baby syndrome."    This condition is considered a serious congenital heart defect and is 100% fatal if left untreated.  If I had been born with this heart defect, I would have died within days of birth.  Anyone over about the age of 30 would have died, because they hadn't yet discovered the surgical interventions that are saving these babies lives today.  That's the good news.  PA-IVS is not curable, but it is very treatable with a series of 1-3 surgeries, dependent upon how our baby's specific heart looks once she is born and the doctors can look directly at it, as opposed to looking at it through my belly with an ultrasound machine.  The mortality rate is relatively low, anywhere from 5-20% - again very dependent upon our baby's heart. 

Here is a diagram of a normal heart and one of what our baby girl's heart looks like:

I did not know any of this two weeks ago.  I had no heart vocabulary at all.  I honestly hadn't thought much about how our hearts function since I was in 9th grade biology.  Yesterday I held my own and asked, what I would consider to be, fairly thoughtful and intelligent questions to one of the top pediatric cardiologists in the country, using words like "sinusoids" and "balloon valvotomy" and "right ventricular dependent coronary circulation."  Amazing how quickly one learns when it suddenly impacts your own life!

So, that was 10 days ago.  We asked Dr. Swanson what she would do if this was her baby -- would she stay here and do the surgery locally, or would she get a second opinion and consider traveling somewhere else for surgery.  She didn't hesitate to say that if she had the resources, she'd get on a plane and head to Childrens Hospital Boston (CHB) -- one of the top pediatric cardiology hospitals in the country. 

I listened.

On Tuesday, Steve and I got on a plane and headed to Boston.  The quick and dirty version is that we had a whole series of appointments on Wednesday in which our initial diagnosis of PA-IVS was confirmed, surgery options were discussed in much more detail, we toured the Cardiac Intensive Care Unit (CICU) where our baby would be cared for post-surgeries, and we met with the high-risk OBGYN team at Brigham Womens Hospital who would be responsible for my delivery.  The two hospitals are connected by a bridge and all babies with heart conditions who are being treated at CHB are delivered there.  It was impressive.  These people are the best of the best, and this is what they do all day long every day.  They know about babies with heart conditions.  They know how to fix them. 

I think I can say with relative certainty that we will be going to Boston for delivery and treatment for our sweet baby girl.  We have about 50 million details to work out in the next 6 weeks before I have to be there, as they want me there around 37 weeks.  It's a smidge overwhelming.

BUT, I feel 100% confident in the team at CHB.  We will be in the absolute best hands possible.  I am so grateful that we have the support (financial, emotional and familial) to make it happen.  It's gonna be a wild ride!

SO....there you have it.  We have officially turned a corner and our life has begun to move down a new path.  The path of the heart family.  I never saw it comin', but nobody ever does. 

I am going to be starting a CarePages site very soon.  I will post a link to it as soon as I get it up and running.  I will probably quit posting here for now, and mostly post over there, as I definitely can't keep up with two blogs.  And, since this blog was originally started as a journey towards our Family of Four, which we will be in a just 8 short weeks, I feel like I might be ready to close up shop here and start a new blogging adventure.  I'll let you know....

Thank you so much for your support.  I appreciate all the comments, especially those from other heart moms who have stumbled upon my little blog.  (((HUGS)))