24 Weeks

We've officially made it to 24 weeks! This is a huge milestone in pregnancy, as it's considered the point where a baby has a chance of surviving outside the womb if born early. Although it's always best for them to stay in until closer to 40 weeks, with our situation now I had felt a sense of comfort and relief from knowing we had made it this far. Aubree is still moving around like crazy and keeps her feet permanently lodged in my right ribs. She's growing right on-track and I've gained 18lbs to go along with that. No idea how I can gain so much weight when she only weighs 1lb at the moment, but oh well. No...it can't possibly be all those cheeseburgers that I've been craving. Surely not. ;)

This weekend I started to read the book "I Will Carry You" by Angie Smith. The book is the story of Todd and Angie Smith's 4th daughter (Audrey) who was given a fatal prenatal diagnosis and how they continued their pregnancy and made the most of the time that they had with their daughter. I realized that I've read parts of her story before as I've perused the depths of the internet trying to find others that can relate to where we are now. A friend from church passed the book to me a few weeks ago. She had randomly come across it at an event and had been holding on to it for awhile as she wasn't quite sure what to do with it. Isn't it cool how God works things together like that?  I made it half-way through the book before I had to put it down. As I read the story of Audrey's birth, their time with her, and then her funeral I was hit with the overwhelming thought that this is what we are headed for very soon. And I am not ready for it. I want to stay where I am right now. I want to keep those sweet little feet right up in my ribs. I want to be able to pat my belly and feel her thump back. I am not ready to say goodbye and to continue on with my life without her.

But that's the reality I am facing and those are the plans that I need to help finalize. Because apparently we need to act as though we don't have much time left.

This morning we went back to the fetal health center to check in on Aubree. We saw the director of fetal echocardiography and had an echo done. This time Aubree cooperated much better, even though she was still a wiggle worm. Because she's bigger and has less room, they were able to pin her down more and get better pictures. The scans were better and the doctors were able to put together a more complete picture of her situation. Unfortunately, that did not change her diagnosis. Aubree has complete heterotaxy. The pieces of her heart are not where they should be and not functioning properly. Valves are missing, leaking, or not letting blood through. Veins and arteries do not enter the heart where they should. The muscles of the heart are spongy and unable to really pump blood. The pacemaker of the heart is still not operating. Aubree's heart rate was about 49 bpm. Anything under 55 is considered to be in immediate danger of death. But she's been hanging in there for a month now with the same heart rate! They really don't know why she's still with us, and they don't know how much longer she can survive.

There are decisions DH and I need to make about what kind of care we want and where we want to deliver. Aubree will most likely not be born alive. Her heart issues are so severe that she's most likely going to pass away in the womb before delivery. Even if she were to be born alive, the children's hospital won't be able to do anything for Aubree until she's full-term. At that point her only hope really is to be born in a facility that could do a heart transplant immediately after birth. Which means we would have to travel, and a heart would have to be available (meaning some other family would have to first lose their precious baby), the heart would have to fit and have the right connections, Aubree's other organs would have to be fine, and she would have to survive the surgeries. In other words, it's nearly impossible. The doctor told us she had never seen a baby with a heart like Aubree's and gave her honest opinion that Aubree has no chance of survival outside the womb.

I want to believe in miracles and I know that one could happen. But I also realize that we will most likely be saying hello and goodbye to our daughter at the same time. Even if she were to be born alive, I don't know that I could consent to putting her through so much pain and suffering for such a low chance at survival. The thought of her being in pain just kills me. I would rather try to relieve any suffering she has and to let her go back to God. They have told us that she is not in pain now, which is comforting.

It is really hard to grieve and prepare a funeral while your child still flips and rolls around inside you. The most surreal feeling ever. There are moments when I let myself forget all that is wrong and just enjoy being pregnant. And there are moments when I try so hard to forget that I am pregnant because it is just too hard to face the reality that she's dying inside me and there's nothing in this world that I can do to help her. There are times when I wish this would never end and I could always keep her with me. And there are times when I just wish it was over already because I don't know how much more I can take. I want to just check-out mentally and emotionally. I don't want to connect with her any more, but instead start sealing off my heart so it doesn't hurt so bad. And then I feel guilty for having those thoughts and I don't want her to think that I don't love her. She's still my daughter and she's worthy of all the love and attention that I can give to her. So I keep willing myself to stay engaged with what's going on, even though it is horrendously painful.