Answers

Today at our appointment we got answers to most of our questions. Unfortunately, they were not the answers we had hoped for. Miss Aubree is already showing signs of heart failure. She's starting to have fluid build up in her belly, around her lungs, and around her heart. Her heart rate has slowed even more and the bottom half has stopped beating completely. It only moves due to the pressure put on it by the upper chambers pumping. The placenta is thickening and showing signs of distress and fluid buildup.

Our little girl has a 0% chance of making it to term. It is highly unlikely that she will make it even four more weeks to be considered viable for delivery. They told us that the stress of delivery would be too much for her little heart. Even having a c-section would be difficult and her body most likely could not handle the transition from womb to outside life. Her heart problems are too severe.

It was horrible to hear the news, but in some ways it was a relief to finally have answers. We opted for the second opinion with the pediatric cardiologists just to be sure, but we are pretty sure they will confirm the diagnosis. Hell, at this point we've paid out our OOP max for insurance so why not? At least we will be able to have the comfort of knowing we tried all we could.

The doctor told us at this point it really is just a matter of time. He said the more time passes, the greater the likelihood of her passing away before the next ultrasound. They were very kind and gave us some great profile shots and a cute picture of her tiny little baby feet :) I've scheduled a 3D sonogram for next week so we can have those pictures since we really don't know if we will get another chance.

Depending on how long she holds on, we have some other choices to make. At this point I will have to go through labor and delivery. The alternative is just unimaginable to me. If she is born before 24 weeks, then we can have our time with her, get our pictures, and the hospital can arrange for disposal of her remains. After 24 weeks we have to have a funeral home take care of her. We have to choose between cremation and burial. Do we want a service?

And we have to make our birth plan. Unless I go into distress, they will let me deliver naturally since it really makes no difference to the baby. We have to choose a hospital and make a plan for the things we want. Do we want molds of her hands and feet? Do we want family pictures? Who do we want to allow in there - grandparents, siblings, extended family, friends, or will it be just us? What do we do with Aly - should she be allowed to be there or should she stay with someone else? How do we find outfits small enough for a baby at this age? I've already reached out to a friend that's a photographer because I have heard sad stories about NILMDS not being able to get to people in time. It's run by volunteers, and unfortunately it's sometimes hard to get people to volunteer for something like this. Which is completely understandable but can make a tough situation for the families.

I need to have a bag packed & ready to go. Which probably means I should get it ready as soon as possible. Hopefully DH and I can get a lot of this planning knocked out this weekend. Really shitty way to spend the holiday weekend, but it will be comforting to know it is taken care of. I think I want our dads to help with the funeral arrangements. In the moment, I think DH and I will be too distraught to think clearly. Planning ahead and having someone else ready to implement that plan will be helpful.

My hope & prayer at this point is that we will make it as long as possible and that she will be born alive. Even if all we get is 5 minutes with her, I want to see her while she's still alive.