XP: Update on Baby Spider

[HoneySpider]

I don't think I shared my initial diagnosis with this board, so here is the OP and follow up:

OP: pandce.proboards.com/thread/101696/first-ultrasound-yesterday

Follow up #1: Um, link's not working, I'll get back to it later

Follow up #2: pandce.proboards.com/thread/108953/test-results
 
So for where we are now...

We saw the specialist again yesterday afternoon.

The good news: The hygroma appears to be resolving itself and shouldn't be an issue. She was moving around a lot which was fun to see (but not fun for the sonographer, haha)

The (really) bad news: It appears likely that there is a major heart defect. The doctor believes he only saw one ventricle when there should be two. I say believes because at 17 weeks it is still a little early to see completely (he said the heart is the size of a pea). We've now been referred to see a pediatric cardiologist on the 29th so he can take a look and let us know what we are looking at (hopefully at 19 weeks it will be far enough along to know to get a definitive answer). 

With a defect like that, there is often another genetic defect too. I had an amnio done so that we can test for those. We have to wait a few weeks for the results to come back. 

So right now we are back to playing the waiting game. We keep going in circles with good news, bad news. Until we know exactly what type of defect we are looking at, we can't know what kind of quality of life she could have and that is what is important to us in deciding if we continue to go forward or not. DH & I will consider termination if we think the quality of life is too low. It's a decision we've known we might have to make, I just didn't expect to get so far along before having to make it. We'll see what we find out from the cardiologist and from there either have to wait more (if the diagnosis is not clear) or make a decision. Apparently the prime time to see the heart is after 24 weeks, but if we want to legally terminate, it has to be done by then, so we can't wait that long.

Im so tired you guys, I feel like I don't know how much more of this I can take. It seems like it's just one hit after another. Im so tired of worrying, of being upset, of crying, of seeing doctor after doctor. Life sucks sometimes. 

[imoan]

You have all my thoughts, prayers and finger-crossings! {{hugs}}

[mssue]

Oh Honey, you are in my thoughts and prayers.

[gogadgetgo]

I really hope you get good news soon. I can't even imagine. (((Hugs)))

[radical]

Sending major thoughts and prayers your way! I'm so sorry you are on this roller coaster.

[HoneySpider]

Thanks guys, it is so hard to keep it together IRL so having this outlet really helps. 

[sleepyheads]

So sorry that it's been rough for you thus far. I hope you get a some good news at your next appointment.

[jssymom14]

I am praying for good news at your next appt ((honey))

[Velar Fricative]

I'm so sorry you're going through all of this. I will be hoping for good news.

[oceanstbride]

Will be thinking about you during the unfortunate waiting game. Sending lots of positive thoughts for your little girl and your next appointment.

[joolz]

Aw, Honey, I'm sorry the ultrasound didn't go as well as hoped and I'm sorry you're having to deal with this emotionally. It must be so incredibly difficult. I hope you get clarity at the appointment on the 29. Lots of love and heart health to Baby Spider.

[winecheery]

Oh Honey. I'm so sorry things are forever going up and down with your pregnancy.  Sending you prayers and hugs and lots of positive thoughts.

Thank you for sharing with us.  

[mswax]

Honey, I can't even imagine how unbelievably difficult this must be for you.  My thoughts are with you, and please vent/cry/scream/hope here as much as you need to.  You are a strong, brave woman, and I'm here for you in whatever way I can be. (hug) (hug2)

[blindyswife]

I wish I could give real life hugs instead of  (hug), but it will have to do. I'm so sorry you have to deal with this.

I don't even know what else to say. I'll be thinking of you. 

[littlemisschatty]

I am really so sorry that you are dealing with this rollercoaster. I can imagine how incredibly difficult this is for you. I will be praying for all of you.

[urbancowgirl]

I can't even imagine what you and your DH are going through. Sending T&P your way.

[baconlettucetomato]

So many thoughts and prayers for you guys. I can't even imagine what you're going through. *hugs*

[HoneySpider]

Thank you guys so much.

[litasail]

I've been thinking of you, Honey, and will continue to do so.

[rt2008]

I'm so so sorry that you guys are going through this and just have to wait for more answers. I hope you can get those answers at your next appointment, so you can just move forward. Thinking and praying for you!

[iheartvino]

T&Ps for you and your little baby.

This is kind of creepy, but I remember when I started lurking on the Getting Pregnant board on The Nest that there was a girl who had a baby with a heart defect. God forbid it comes to this, but I believe she and her H decided to terminate the pregnancy, due to quality of life issues. I know that GP on TN is still pretty active, if you wanted to try to reach out to her, if you are forced to try to weigh that decision. She might be a good person to talk through things about.

[underwaterrhymes]

Sending thoughts and prayers your way... also some hugs.

[alzi]

i am so so sorry you are going through this. i hope you get better news at your next appt...big hugs.

[bunchkie]

Honey... you are in my thoughts and prayers! I hope you have better news at the next appt!

[yellowbrkrd]

Oh Honey, I'm sorry you're going through all of this. I've been thinking about you and will continue to. (hug) (hug2)

[jessuhmarie]

I am so incredibly sorry ): I can't even begin to imagine what you are going through. My thoughts will be with you and your husband and I will be hoping the best for your little one. I am so sorry!

[KKD]

I am so sorry, Honey. I hope you get some more (and better) answers soon. Many good thoughts and prayers coming your way.