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Sunday, January 31, 2010

SIX MONTHS

As I sit here, I am having trouble wrapping my head around it. It can’t possibly be six months since our first child died. Tomorrow can’t possibly mark six months since she was born. Six months. Six whole months. Six whole months since the sweet, beautiful girl that had waited so long for was ripped away from us. It seems like a lifetime ago, yet it seems like just yesterday. By all rights, Gracie should be exploring her feet and rolling over by now. She should be holding her head up and working on self-supported sitting. She should be growing like a weed. She should be the star of every Skype date with my sister. She should be, and probably would be, if only we had connected a few dots a little earlier.

If someone had told me six months ago that it would still hurt this much now, I would have told them that they were wrong. I would have insisted that they were wrong, even though I knew then that it really would still hurt this much. I knew how much it was going to hurt, because for 31 months I watched from a distance as a friend walked this road. I watched from a distance because I didn’t know what to do; so I became that person that I now hate, the person who says and does nothing. Nevertheless, I knew from watching her long, painful journey how much this was going to hurt, regardless of how tough I thought I thought I was.

For eight months we journeyed down the road of pregnancy, encountering a few small bumps, but for the most part enjoying the smooth sailing. Without warning we hit a more solid and concrete road block than we could have ever imagined, and then found ourselves traveling a road never previously seen on our map. Six months later we are left with broken hearts, some pictures and a theory. It’s a strong theory that I am ‘okay’ with, but it also points to the fact that there is an outside chance that Gracie could still be with us, if some things had gone a little differently at certain points along the way. Here is the theory as it was put in front of me by the MFM specialist:  Gracie had either T18 or T21 (I truly  believe T21) --- the chromosomal irregularity likely contributed to the small size of my placenta --- the small placenta resulted in placental insufficiency --- the placental insufficiency caused IUGR --- the placental insufficiency and IUGR ultimately caused Gracie’s demise.  

The placental insufficiency was undetected during our pregnancy.  Unfortunately, the same cannot really be said about the IUGR, since there was evidence that Gracie was losing ground with her growth one week before her death.  Although I do believe that a different chronology of events may have allowed us to bring Gracie home, I do not place blame in any one place or on any one person for what happened.  I have some strong feelings about the events of the last few weeks of Gracie's life in my belly, and I have a list of circumstantial theories and 'if this, then that' questions that really can't be answered without making people feel like we are on a blame-placing witch hunt.  Although I would love answers to some of those questions, I have decided that it's not worth alienating our OB practice, since it is the only practice within a 1 hour radius that we will consider using (for many reasons).  And, in the end, the cold reality is that there is not an answer to any question that will bring Gracie back to us. 
 
Six months later I am still in a mess of insurance denials for tests that were done postpartum. Six weeks after Gracie left us, I had blood drawn for the clotting tests that are ‘standard’ after unexplained stillbirth. Everything came back clean. As things stand now, only half of that testing has been paid by my insurance, and I am now receiving bills from the hospital for $660…all of this because there is (an all too familiar) breakdown of communication between the insurance company, the hospital billing department and my OB office about what medical records need to be submitted to show that these tests were medically necessary. I should not have to be the person to spend 45 minutes on the phone with the insurance company to get details about these claims; I should not have to call the doctor’s office to fill them in. The billing department should be following up with this to find out what needs to be submitted, and they should be getting that information from the doctor’s office. Instead, they just send me a bill and tell me that it’s my responsibility to ‘do the leg work.’

Flipping the insurance/hospital/testing coin over, I am still trying to wrap my head around the fact that we did not have any chromosomal analysis done on the placental tissue. We were under the impression, because of information given to our midwife, that the chromosomal analysis would not be covered by my insurance; because of this we opted to fore go the testing because the out of pocket cost was more than we could handle at the time. This was not really a huge deal until I found that in early December that our midwife was given bad information about my insurance coverage for this testing. Two days after my discharge from the hospital, 2 different people from the hospital called the insurance company and were told that it would be covered based on medical necessity. At some point after this information was obtained, communication fell apart and ultimately the tests were never run. Ultimately, we were denied the opportunity to make the final decision about taking a chance in the ‘medical necessity’ ring with the insurance company; the chromosomal analysis was simply not done. There are lots of other details here, but that is the abridged version. Without that chromosomal analysis, we will never know for sure on the T18 / T21, so the about theory will always be just that – a theory.

Six months later I still have no more of a clue about my faith than I did before all of this. Just when I think I have it figured out, God tosses out a huge curve ball to make me question everything all over again. I think very much with a scientific brain – all the time. I need to be able to see or touch it in order to believe it. Faith is not about seeing or touching, and I think that’s why I struggle. I have had a few people IRL offer to ‘help’ me sort it all out, and in the past I have had IRL acquaintances really try to push their religious views and beliefs on me, but it is something that need to figure out on my own. Until I do, I will simply be a little envious of those who take such deep comfort in their faith during life’s catastrophic storms.

I have learned so much from our eternally sleeping 4 lb, 3 oz peanut. The most profound realization is that I have no control over my life. Obviously, there are little things that I can control - but I’m talking about the overall course of life. Sadly, I am a planner; we don’t even take day trips without a concrete plan. Pregnancy was a huge deal, so of course, there was a plan in place for growing Gracie and finally welcoming her into the world. Ultimately, the plan was natural. Natural and/or organic foods for the duration of the pregnancy. Natural and unmedicated birthing process. Minimal intervention after her arrival unless immediate medical needs were identified. A friend who words in the OB field said to me toward the end of my pregnancy ‘Oh Honey, don’t make a birth plan. When you make a birth plan everything goes to shit.’ These words have resonated through my mind over and over and over again in the last six months. Death is certainly not what she had meant, but neither of us had any idea how true those words would prove to be.

I have learned and had to accept that I can no longer be an ‘it will never happen to me’ person. I have been that person all of my life, primarily because things in my life have always worked out okay for the most part, and in the long run I have always skated around the less-than-perfect odds. But this time it happened to me – in larger than life style.

I have learned that sometimes gut instinct tumps all. Sometimes the cold hard facts in black and white mean nothing. Sometimes statistics mean nothing. Sometimes it’s simply all about the gut. No explanation needed.

I have learned, thanks to Miss Gracie, that I will never completely understand her daddy. I will never fully understand what makes the man I love tick on the deepest levels, and I will never understand why he grieves the way he grieves or thinks the way he thinks. But now I recognize that I don’t need to understand. I just need to accept, support, appreciate and love.

I try to think each day about my own ‘theory of relativity.’ I try to remember that everything that happens in our lives is relative to us. Simply because an event has no bearing on my life does not mean that it is unimportant, and just because something is important in my life, I cannot assume that it will have any impact at all on anyone else. As frustrating as it is to feel like my world is standing still some days, I cannot expect anyone else’s life to stand still. As much as I want them to understand this pain and how awful it is, they never will – because it’s all relative.

I would give just about anything to have Gracie here with us as a healthy, living child. Anything. But I must settle for the mere 8 months that we had with her. I am grateful for this time with her, and I am grateful that I was chosen to carry her. As each day ticks by, I continue to learn, realize and accept. As each day ticks by I find new outlets for my grief and new ways to honor Gracie. We have started new traditions, and I know that more traditions will continue to evolve as our first year without Gracie continues. I know that she will forever be part of our lives, but every day I fight the fear of forgetting. A few weeks ago I realized that I had lost count of how many weeks Gracie has been gone. I panicked, then realized that it was simply a stepping stone of acceptance (I felt even better when I remembered that I occasionally lost track during pregnancy, as well.).

The world has continued to spin every day for the last six months; the sun has continued to rise each morning and set each night. Although some days I would give anything for the world to stand still, it will continue to spin and the sun will continue to rise and set. Ultimately, we will continue to move forward. We will continue to cope with the plethora of emotions and experiences that lie ahead of us. We will continue to support each other as husband and wife. We will continue to love Gracie with everything we have and know that she is watching over us. We will continue to live life within the new normal.

We love you, Baby Girl.


5 comments:

The Blue Sparrow said...

Susan, I am at the 6 month point as well and I am right there with you, and can relate almost everything you've written here. I too sometimes wish that the world would just stop and remember, but I know it doesnt work like that. The only world that stopped was mine and Im slowly finding my way back to our "new normal" as well. Thinking of you! *HUGS*

Maggie said...

Hi Susan. I'm almost to the 3 month point, but I can still relate to everything you have said. Depsite the length of time, it still feels like yesterday. Time continues to move on even though sometimes it seems like our world has stopped. I wish we were reaching milestones with our babies instead of these new milestones of remembering them and wondering what they would have been doing instead. Take care and know we are thinking of you. Many hugs. (((HUGS)))

Jessica said...

I could feel the heart in this post. A real heartfelt post. We are going on seven months tomorrow and I can't believe it....I am now closer to being without my boy for a year then just a few months....its as fresh as yesterday. It would just be nice if people would just acknowledge our pain by just trying to put themselves in our shoes....maybe then they would start to get it.

*hugs* I can only imagine the frustration with the insurnace. I work for an insurance and have now learned what its like to be the patient and on the other side. I will pray that the insurance overturns any denials so that you don't get stuck with the bills. I am hoping you can appeal.

Holly said...

Thinking of Gracie on her 6 month birthday. I have a scientific mind too, always have. You're right, you do have to figure things out for yourself.

Anonymous said...

I'm only 3 and a half weeks out, but I can relate to the "wanting the world to stand still." I hope that I will be able to accept that my world is relative to my life and not everyone else's the way you so gracefully put here. It is a lonely place to be to realize that other's lives are continuing when mine feels like it has stopped.

Angela