Will it ever get easier?

So today we met with Dr. Cuneo at Hope Children's Hospital in Oak Lawn for our 2nd opinion.  Turns out she's extremely good friends with Dr. Gotteiner (our fetal cardiologist out of Children's).  She didn't want to review my reports or hear what they found last week until she reviewed the ultrasounds herself.   Ironically at this ultrasound, Zoe decided to be still when Dr. Cuneo was doing the echo.  She was going to give me some apple juice to get her moving all around.  About 20 minutes earlier the nurse kept saying how active she was.  Mike and I just laughed because this was the first doctor's appointment that she decided to be less active.   That only lasted about 5 minutes though, then she decided to go back to being super active.   And again, she's still traverse.  However, she's flipping from one side of my stomach to the other, just laying horizontal.  My gut is telling me she won't be head down and I'll need a c-section.

Dr. Cuneo found the same defects as Dr. Gotteiner and Dr. Saroli did.  The only difference is that she suspects that Zoe also has "Coarctation of the Aorta".  Since Zoe's aorta chamber is about half the size of the pulmonary artery, and has tissue build up, she suspects that this could be the reasoning for the narrowing of the blood flow.  Again, we will not know until birth.  Children's brought this up at one of the first or second echos but we thought they ruled it out.  Of course, this will still be monitored.  When we mentioned that Children's suspects Heterotaxy Syndrome, they didn't agree or disagree.  Dr. Cuneo said that with the Interrupted IVC and Double SVC, that shows up in Heterotaxy.

All along I was doing great emotionally.  I was feeling confident in Children's because Hope was finding the same defects.  Then Dr. Cuneo printed out an ultrasound picture of just Zoe's stomach.  She has a "double bubble". (see picture below)
 (http://downsyndrome.about.com/od/medicalissuesinds/a/DSDuodeAtres_RO.htm)  this link better explains what we read about it today.

As you can see in Zoe's picture, there are two "bubbles".  These bubbles are showing up because there is fluid in both.  Dr. Cuneo did not want to tell us what she thought it was because its not her speciality.  She printed the picture off so I could give it to my OB.  She just wants to make sure our doctor is aware of it and suggested that I get another ultrasound done by him.   With her sternness about this and handing us the picture, it left us a little unsettled.

Mike and I leave and head to lunch.  I did not know Mike googled "Double Bubble in ultrasound".  I asked him why he was being so different and if he still thought it was heterotaxy.  He had a solemn look on his face and said "No, I think she has Down Syndrome".  I then asked why and went to google myself and Down Syndrome popped up everywhere.  Again it says its a 50/50 chance of having Down Syndrome.  However, with having an AV Canal Defect and a possible Coartaction of the Aorta, those are also present in Down Syndrome babies.  Again, since we didn't do the amnio, we don't know for sure.  At this point I have pushed aside the idea of having a Down Syndrome child because it seemed like the doctors didn't think she has this due to my blood work, NT scan, no soft markers, and the weird anomaly of heart.   The waterworks began.  So not only am I grieving with having a heart baby, I'm also grieving with the possibility of having a special needs child.

Its almost definite that she will need surgery in the first week of life, especially if this "double bubble" is what we think it is.   I saw this link last night and I shared it on facebook.  I will warn you, its a tear jerker, but maybe some of you will realize what my little girl is going to have to go through.  She doesn't have the same heart defect as Xavier, but seeing a baby with tubes is heart wrenching.  I'm glad I saw this because I have to get ready for this.  Maybe with more awareness it will help me until I know its time for her surgery.
http://www.godvine.com/Xavier-s-Journey-The-Touching-Story-of-a-Miracle-Baby-657.html

How am I doing?  Not good to say the least.  I have random out bursts of tears.  I'm so fearful if she's going to make it due to all these complications and surgeries.  I have to be strong, but its becoming harder and harder after each week.

I spoke with our family friend who is a pediatrician.  I grew up with Laura and we used to be best friends when we were little girls.  I wanted her opinion as a friend and to hear what happens or goes on with children with these defects.  She said what Zoe has, all these defects are common.  Heterotaxy itself is rare, but all the defects present in Zoe are common.  She even said the double bubble is common.  She's not sure if she would have Down Syndrome because of the ultrasound results and blood work.  She said its obviously possible, but since Zoe didn't have any fluid around her neck, she would assume she'll be ok.  But again, we won't know until birth.   She left me crying because she told me this "please hug Zander a bit more, play with him more, because your going to be spending alot of time at the hospital since Zoe will be there for a while".  Let the waterworks begin.

The next step is that I'm going for a full growth scan ultrasound next Thursday, Dec. 1st to go over all her body parts.  This "double bubble" needs more clarification and Mike is really curious why this wasn't seen before.  Friday, Dec. 2nd I go back to my OB to review the ultrasound and have my gestational diabetes test.  I really hope I pass that (I did with Zander).  I go back to the fetal cardiologists at Children's on the 12th.  Then i'm pretty much monitored almost weekly until I deliver.

So thank you for all the messages, posts and texts.  I don't think this will ever get easier until I hold her in my arms.