What to Expect

Today, we met with the fetal maternal doctor. We had an ultrasound done, and then we sat down with him for a consultation. 

He told us that the baby has a few characteristics with trisomy 18 at this point, and that we will be able to tell more in a few weeks when the baby is more developed. 

Right now, the baby has a triangular shaped head, which is consistent with a trisomy 18 diagnosis along with the cystic hygroma. With the positive trisomy 18 testing, and these characteristics of trisomy 18, it increased her diagnosis to be 90% accurate. 

I’m still have a hard time believing this is our baby that this is happening to. 

The cystic hygroma, has doubled in size in two weeks. I didn’t expect that. 

She was moving her arms and feet all around during the ultrasound, almost as if she’s happy where she is. It breaks my heart that I can watch her on a screen, and that may be the only times I see her alive. I love her so much already. My poor baby. I hope you know how much I love you. 

During our consult, he told us that we had made it a long way, but that in our case he maybe gives us about six weeks until her heart stops beating. I'll never understand how this happened to our baby.

 Due to the cystic hygroma, her heart will stop due to the amount of pressure it’s putting on her. 

He advised that I see my OB every week instead of every two weeks.

He went into depth with how I can somewhat expect delivery will be. 

I’m having a hard time thinking about that right now. No one should ever have to go through this. 

How did this happen to us?  

He went on to tell us that this is not common. Its almost as if you get struck by lightening.

How did this happen to our baby

We decided to opt out of doing amnio testing. 

After we talked about it, we don’t feel the need to undergo anymore testing to confirm what we already know. 

This is our baby. We know that our prognosis is poor, we know that one day, her little heart will stop beating, and we will have to tell her goodbye far sooner than we ever wanted to. We don’t want to put her through anything more than she’s already going through, and I can’t keep repetitively hearing all of the things that our poor baby has wrong with her. I will love her no matter what, and I will keep her here as long as I possibly can.

I know she is not healthy. I wish more than anything she was, although I wish there were, there aren’t any tests that are going to cure her. 

For now, as sad as I am, all I can do is thank God for her. I will fight for her life, and I’ll do the best I can to cherish the time I do have with her, because I know it won’t be long enough. I’ll always wish there was more that I could do to save her. I’ll never understand why this happened to her.

I hope she knows how loved and wanted she is. 

My heart is broken.