48 Hours

Ok everyone I am new to the whole blogging thing so bear with me as I try and figure all this out. I promise I will work out the kinks as we go.
I'm sure many of you are anxiously awaiting to hear about Khloe's diagnosis and what the future has in store for her so I will do my best to summarize how my whole world changed in 48 hours...

Beginning at my 20 week anatomy ultrasound for Khloe they were able to get all measurements excpet for the heart, the ultrasound tech was unable to see all four chambers. My doctor didn't seem concerned,just said sometimes the baby makes it difficult, we'll repeat the ultrasound in a few weeks. We repeat at 27 weeks and she is still unable to see all four chambers so my doctor referred me to the perinatal center at Christ hospital for a Level 2 ultrasound.
I attend the level 2 ultrasound and as soon as I see the tech put an arrow pointing to something in the heart on one of the picture I knew something wasn't right. After she finished getting the pictures she needed they brought the doctor in and he told me that Khloe has a hole in her heart so he would be referring me to a cardiologist at Children's.
All this time I am thinking about all the stories I've heard about babies having holes in their hearts but they correct themselves on their own and everything turns out fine. I assumed this is what is going on with Khloe and don't really get myself too worked up, boy was I wrong.
After the fetal echo the doctor comes in and tell me in his first sentence that this is not one of those holes that will close on it's own, but rather one that will require surgery; BOOM! my whole world just came crashing down around me...

Khloe has an Atrioventricular Canal Defect. She has at least one hole in her heart and underdeveloped valves. The diagnosis could get worse after birth.. they weren't able to see her whole heart as clearly during the fetal echo so we won't know the full diagnosis until birth.
There are two types of AV canal defects: Partial and complete.
Partial- One hole and valve affected
Complete- All parts of the heart affected
Essentially this defect allows oxygen poor blood and oxygen rich blood to mix within the heart, it overworks both the lungs and heart in the process. The symptoms of AV canal defect include: Difficulty breathing, poor weight gain, blueish color of the lips and skin, failure to thrive.. all of which lead up to heart failure.

Khloe will have to have life saving, open heart surgery. We don't know the timing of this surgery yet and will not know until we get the final diagnosis after birth, right now we play the waiting game which is absolute torture to me.

Finally, AV canal defect is highly found in babies with chromosomal abnormalities. So it is highly likely that Khloe will have Down Syndrome as well. I won't be able to find out more about this until I go to the doctor again, which is on the 27th.

So in 48 hours I went from thinking we were going to have a healthy baby girl to knowing that she will have to have open heart surgery to save her life. I am still trying to wrap my head around all of this and everyday I think of something else to worry about. I do not know how we are going to face all of this, what I am going to do about going back to work after she arrives, or how we are going to afford all of the care that she will need. My head has a million thoughts flying around in it and I am doing my best to just make it through the day.

I apologize if this was a rambling mess, I will get better and more organized at sharing Khloe's progress with you all. In the mean time bear with me, this is a whole new process for all of us.

Thank you all for the thought, prayers and kind words, we are just starting this journey and have a long road ahead of us.