This Is So Hard

Today is our 10 year wedding anniversary. Weeks ago, I had already started today's blog entry in my head. It was going to go something like, "Wow, what a journey, and how blessed are we to be closing one difficult chapter of our life together and starting the rest of our lives with our family finally completed." But today just doesn't feel that happy, and I don't feel those same sentiments. Our daughter's diagnosis last week left me a completely broken person. I am constantly asking the question, "why?" How could this happen to us? There we were, just weeks from our happy ending, ready to close the door on our incredibly painful infertility journey, and BAM! A new, far more painful wound is opened, and it is ripping my guts out.

There are so many layers to my grief it's not even funny. I definitely have moments of denial. They are pretty fleeting though. I tend towards pessimism, so it's not hard for me to accept that something awful is happening. Brian is the eternal optimist, so I'm mostly leaving this part up to him for now. I have read several stories of fairly happy outcomes, but even those seem completely overwhelming to me at times. I just can't fathom how we are going to manage the stress of everything. Our daughter is going to have brain surgery. Holy shit. We did a tour of the NICU yesterday and it made me realize that I am in some state of denial though. Maybe for me, the denial is that this is going to happen in four days. And then it is never going away. I am trying to cherish our "normal" life right now, because everything is about to change, forever. Unfortunately it's super hard to enjoy anything when you are 38 weeks pregnant and it feels like your pubic bone is about to snap in half and you have tight, painful braxton hicks contractions all the time.

There is also anger, but for me it feels more like bitterness. It's the bitter, awful, resentful feeling that I experienced with infertility. I was so looking forward to it being gone from my life. But oh, it is so much worse right now. I look at families with their perfect healthy children, or I read the stupid everyday worries of moms on my BabyCenter August Birth Club, and I think to myself, "I hate you. You have no idea how lucky you are. Why can't I be you?" While we were sitting in the ultrasound room last week wiping off the jelly from my stomach, I grabbed onto Brian and through hysterical tears sobbed, "Why does this have to be so hard for us? Why let us get pregnant if this is what happens?" I don't understand.

Depression I have in aplenty, and I worry about how I will do after the birth. I had major anxiety with Noah, and he was a typical healthy newborn. I have no idea how I'm going to cope mental health wise with balancing a medically fragile infant with a four year old and a career. I can't even think about it. It's too overwhelming to me. What depresses me most right now is the detachment I feel from this pregnancy and from our baby. I know I love her to the moon and back. This was confirmed for me at the OB appointment this week when it seemed to take too long to find her heartbeat on the doppler. All I could think was, "she can't be gone already." But I am so afraid that we are going to completely lose her that I think a part of me is already preparing for this. When I walk by the nursery and look at the few outfits and items we have prepared for her, I think to myself, "maybe." Maybe we will have a baby. Which is such an insane thought for someone who is currently 38 weeks pregnant. Of course we are having a baby. I guess the real troubling thought is, "but will we get to keep her?" It's such an awful feeling and I hate it.

Have I mentioned yet all of my other fears? Most immediately, I am nervous about my c-section. I have never had surgery. Having my wisdom teeth out and my egg retrieval are the closest I've come. It probably sounds stupid and silly compared to the gravity of everything else going on, but I am pissed that I am going to have an ugly scar on my body. Because of her head size and condition, it is entirely possible they will do a vertical cut, and not the more easily hidden bikini cut. And I am especially not looking forward to the additional difficulty it will place on me immediately after the birth. It is so unfair that I won't be able to be with our daughter right away as they evaluate her and send her for the MRI. I probably won't be there when Noah or my parents see her for the first time. It will also make pumping more difficult and uncomfortable, or so the nurses have warned me. There is also tremendous fear of the unknown. Right now the perinatologist doesn't feel like Elodie's condition will be immediately fatal, but her guess as to the odds are "less than 10%." That is still frighteningly high in my opinion. It sucks so much to get this news so late in our pregnancy. I feel like most people in our position have known that there was hydrocephaly present since their 20 week scan, which allowed plenty of time for fetal MRI, amniocentesis, and other diagnostic information to be gathered. We have almost no picture of what we are up against. Was it a hemorrhage? Is there a blockage? Does she have some form of holoprosencephaly? If so, how severe? How big is her head going to be? Will she have facial deformities? Are her other vital systems intact? The financial aspects also freak me out. I can't imagine all of the medical bills that we won't be able to afford. It also worries me that we live so freaking far from everything. I imagine we will have a lifetime of hospital visits and emergency situations ahead of us, and we live almost an hour from help. Will we have to move back into Denver? I know that all I can do is take it one day at a time, but these are the worries that swirl in my brain constantly.

I'm pretty sure that was a big, incoherent rambling mess. But I need to get it all out. And I hope one day I look back at this post and feel completely mortified at the horrible thoughts I had leading up to Elodie's birth. Doctors gave us a less than one in a million chance of ever conceiving on our own. Let us hope beyond hope that Elodie continues to amaze and surprise us by beating all kinds of odds.