:(

I woke up this morning really thinking that I was going to walk into the ultrasound room, have the doctor smile at me and say some good and reassuring news to me.  Maybe its me being nieve, or just wishful thinking, but for the last 3 weeks I've really been positive.  Well, this appointment didn't go like how I envisioned.


It was truly amazing to see Zoe's growth from 2 weeks ago.  She's still traverse (laying horizontal) and was very active (again) today.   I swear I had no coffee and/or sugar this morning!  Since she's bigger there were a lot of shadows displaying on the screen, so Dr. Saroli had a hard time pinpointing some of the important measurements of her heart.  Normally Dr. Saroli is very chatty and discusses things as she goes, however this appointment was dead silence.  You could only hear the beeping of the machine.  I actually tried to "rest my eyes" for 10-15 minutes so Zoe would calm down (and myself).


After the hour long ultrasound Dr. Saroli discussed what she saw.  I'll start with the good news.  Her aorta chamber isn't on the small size anymore like it was 4 weeks ago.  Phew....


Now for the bad news....


Zoe has a total AV Canal Defect (http://www.childrenshospital.org/az/Site521/mainpageS521P0.html).  This website will better explain what AV Canal Defects are.  We already knew she had a VSD hole 4 weeks ago.  Today she saw another hole, the ASD hole.  She also believes there's an additional hole in her upper chamber, however she couldn't definitely tell us if she was positive because of the shadows.  She also said that between the two bottom chambers there are 2 valves, the mitral and tricuspid.  However Zoe only has one valve.  So she would need open heart surgery to split the valves.  This usually happens between 4-6 months of age.   She advised us that with AV Canal Defects, this is usually in Down Syndrome babies, however since our case has multiple heart problems, she doesn't believe its Down Syndrome but definitely Heterotaxy Syndrome.  She also noticed that in her aorta chamber that there is tissue on the bottom which is narrowing her blood flow.  Again, she's fine in the womb, but when she takes her first breath of air, which could be worrisome.


Long story short, she has multiple holes (ASD, VSD and a possible 3rd hole), a total AV Canal Defect, a re-routed vessel (interrupted IVC), and 2 veins that are supposed to connect together are connecting to 2 different sides of the heart, an additional vessel on her upper right chamber, and some tissue that needs to be removed from her aorta chamber.


Alot to take in.  I literally burst out into tears (and I am as I write this) and the doctor said that all of this is fixable.   She's worried about the heterotaxy syndrome and we won't know how her organs are until after birth (again if her intestines are malrotated, if she has a spleen or multiple spleens, etc.).  After researching heterotaxy, I asked her if she thought Zoe had DORV (double outlet right ventricle: a double outlet right ventricle defect, the pulmonary artery and the aorta—the heart’s two great arteries—both arise from the right ventricle. While serious, double outlet right ventricle is treatable surgically).  She told us that she doesn't think she has that because on the screen it looks like each artery are in the proper place, but, again, we won't know until birth.  With heterotaxy, organs mirror each other.


Children's Memorial still want to monitor me every 4 weeks.  Dr. Saroli is having the head of the department, Dr. Gottinear (she saw us at week 20) review all 160 images of Zoe's heart today.  Dr. Saroli wants Dr. Gottinear's opinion if she sees anything else.  They will then talk to the Neonatal Intensive Care Unit surgeon and team about Zoe, and then they will contact us to set up an appointment to get a tour of the NICU floor and hear what the procedures are after birth. 


I had every intention of going into work today, however with the unsettling news we received, I feel like I did almost 7 weeks ago.  I feel broken, hurt, mad, question God, ask "why us", wonder how I could have a child with this syndrome that's 1 in a million, the list goes on.  I know I will continue to shed tears and have minor anxiety attacks, but I have to remember that we were given Zoe for a reason.