Elsie Noelle

It seems the consensus amongst most of us is confusion, and I think that's absolutely fair. I wanted to just share a small bit of information--which is basically all I have.

The doctors with Ellie were sure this wouldn't happen again, and we don't blame them for believing so. There wouldn't have been any further testing they could have done unless we had brought in a geneticist to test Ellie further, but even then there wouldn't have been a guarantee that anything would have been found to let us know it could happen again. Plus, when this happens once, there is less reason to believe it could happen again.

The verdict so far is that this could be a lightning strikes twice sort of deal- a theory I am not comfortable with, and feel that it is much more likely that Chris and I are carriers for some sort of recessive trait that's causing this OR that it is solely something I am passing on.

If it's both of us, there should be a 25% chance with every pregnancy- a lottery I am not at all willing to play. If it's just me, it would be passed 100% of the time.

Elsie has almost all of the same traits that Ellie did minus the turned in/stiff hands and feet (so far as we can tell.) The main and lethal characteristic is her cerebellum which is much farther behind than her body (which is already far behind) and her recessed jaw.

Since Ellie's amniocentesis came back negative, we are opting out of doing another with Elsie..because they will be able to gather the same information after she is born and I don't have the energy to do that again and wait for results that do not change her outcome. We have decided that we want as little contact with the doctor's as possible-not because we don't respect them but rather that we cannot go in as frequently as we did with Ellie because it is far too exhausting and never made a difference. It feels as though we are hanging by a thread and I am not about pushing my limits. We will go in every 6 weeks or so, mainly to make sure everything is okay with my body.

Devastated isn't a strong enough word to describe how we feel--and I've never been more angry in my life. We will be praying for help, strength, and most of all mercy--but are comfortable with any prayers we can get. If you feel strong enough and able to pray for the miraculous, we surely will not stop you. At this point, I don't have it in me, but the important part is that I have faith that it's possible. I am okay with being selfish this time around and admitting I need help..and that I cannot intercede as often and as hardcore as I did with Ellie.

My personal prayers and thoughts seem to center around endurance more than anything. I find myself frequently thinking "I cannot be pregnant forever. I can only be pregnant about five more months at the most." I'm pretty sure I'm in survival mode. Ellie taught me that you cannot, in fact, die from a broken heart--so I have this weird and horrible confidence that I know I'm physically going to make it through this. (I wasn't always sure with Ellie because it was so new and fresh. I didn't actually think I was going to die, per say, but there wasn't much hope for life, if that makes sense.) But my confidence in the fact that I'm going to survive should not be mistaken for lack of pain or even strength for that matter.

You guys-we just don't know. And we're going to have to be okay with that for now.

I am deeply bonded to Elsie Noelle and I do not fear that I will unconsciously reject her for the sake of my sanity...but the relationship is quite complicated simply because I know what is to come.

The one thing I have held on to, and is still related to endurance, is the fact that relief did come upon Ellie's passing. Again, I am not hopeless and know that anything is possible, but the reality of the matter is I cannot afford to spend the next months investing in an outcome that I surely didn't experience last time. And again, this is where our community comes in--to pray for that if you feel able.

I may or may not write as much this time, I'm just not sure. We definitely won't have as many medical updates because we won't be going in as frequently.

Please, please, please--anybody you feel comfortable sharing us with..do. I've said this before and will probably say it a thousand more times, but we need as much support as possible.





My dearest Elsie,

You were loved before we even knew you existed, and the value of your life has never ever been lost on us. We prayed for you and waited for you and we are so thankful for your sweet life that surely is not over yet. You are a joy and a beauty and we are committed to being the best mom and dad we can be to you. We offer you everything we have to give. You are known and you are deeply deeply desired.