More Bad News

A couple of weeks ago we met with the doctors and decided to attempt a medication that would raise my heart rate in the hopes that it would have the same effect on Aubree. Unfortunately, we found out at our appointment yesterday that the treatment did not work. She is rapidly declining. Her heart rate has gone down to around 43 bpm and she gained nearly 3lbs of fluid in 10 days due to her heart failure.

Barring a complete miracle, we will not be bringing a baby home from the hospital with us. And we most likely will not get the chance to meet her alive.

We knew going into our appointments that we should be prepared for bad news. But I was not prepared to see with my own eyes just how bad she had gotten so quickly. The diagnosis from the doctors didn't change, and they didn't tell us anything we'd not heard before. But to see just how large her belly had gotten and how swollen her face was from the extra fluid was unbearable. I broke down sobbing in the conference room with all the doctors sitting with us around the table. Her decline was so rapid that they want us to be prepared to lose her at any time now. She had been able to hold steady for so long mainly because she was so little. But as we entered into the 3rd trimester and her body continues to grow on-track, she is quickly outgrowing the capacity of her poor, damaged heart.

I was unable to talk during the meeting because I was so choked up. Fortunately DH was able to put into words what I could not. He told the doctors our main wish at this point is to meet our daughter alive. They reassured us that this is a very common and completely understandable request. They didn't want to take her just yet because of the minute chance that she could pull through this, as taking her now means they would not be able to provide any interventions to her. So we are going to be monitored weekly to see how she's progressing and how I am progressing. Should she decline further then we will schedule a delivery to give us time with her. By some miracle if she makes it 6 more weeks then they could attempt to try a pacemaker and see if they can reverse the heart failure, provided she does not suffer other organ damage in the mean time.

But scheduling a delivery may not be up to us. Her heart could stop at any minute as it is already very weak. Her size could also trigger labor to start, as she's almost the size DD was when she was born and my body is measuring at 36 weeks. I am at risk now of going into preterm labor as my body thinks we are both ready because we are both so big. I've been having pretty consistent contractions for the past couple of weeks, just like I did with DD before I went in to labor. Aubree is not strong enough to survive even a very fast natural labor, so if my water breaks we have a very slim chance of being able to meet her alive. And with the hydrops making her body so large it could complicate labor for me, resulting in a c-section even if she has already passed.

When we came home yesterday I just sat on the couch in a daze for awhile. I felt like I had to start planning something for her, so I grabbed my computer and started to look for urns. I want something that looks like a piece of artwork and not the traditional clay or marble jar. I found a few that DH and I both liked. Unfortunately, as I learned today, Google is not always kind. While I was in the mood to look at these things yesterday, I was not prepared for the constant stream of ads on Facebook and other sites based on my search history from yesterday.

I really just want to check-out for awhile. To step away from this crazy life and have a second to just breathe. But that's not how it works. Life keeps on marching forward. So I keep plodding a long, just hoping that this will help get me through the worst of it and find some kind of rest on the other side.