Sunday, March 13, 2016

My Come to Jesus Talk (9 months) + Charlotte's Autopsy

I've been asked a lot lately how I'm doing. I figured I'd sit down and write it all right now because I'm not doing too bad. Sometimes, it's too much to answer to anyone let alone a computer. I know you're trying to help and you're curious and it means the world but I don't know how to respond sometimes. So here it is. Actually, you might want to stop here, go pee, grab a snack, get comfy and come back. There is no short way of explaining the months of emotion after the loss of a child, our sweet Charlotte.

When Charlotte was born, after they told us we were going to lose her, they asked if they could perform an autopsy. For any parent that question would be impossible to say yes to, well, it was but that question had been asked many months prior so the answer was already made up. Chris and I delicately and cautiously reviewed each scenario, praying we wouldn't have to make this one decision. We said of course and months, and months, and months of waiting later, we FINALLY got the results.


I need to say that first, if you haven't seen me in person in a while, I've been in a extremely dark abyss of pain and guilt. A place I imagine everyone might slip into once or twice in their life, rarely talks about aloud and to be honest, lucky if they survive it. Maybe it's called depression, or maybe it's worse. I sure felt like it was worse. I know that it is by far the darkest, desolate, horrifying, most destructive place I've ever been and I never want to fall into it again. It's absolutely terrifying. Like an evil power had taken over me. I hated myself for losing her. This might scare some of you but I want to be real.

 I have never in my life thought of purposely leaving this Earth life until we lost her. I had had enough. I figured I'd be given a pass when I got to wherever I'd be sent with what I've been through. I thought I was useless as a woman. And this wasn't just one day of horrible thoughts, this was continued, lingering months. I should have been able to keep my babies alive like other women/friends/family and I didn't. I'd tell myself that it was just luck with Owen. I'd thought that no one needed me, that I had either offended or upset every one of my friends with how I was coping and that they wouldn't care if I were gone. I believed that Chris should marry someone that could give him the children he so desperately wanted and deserved. That I could never make him happy. That something was wrong with me and it couldn't be fixed.We are young enough, he could start over with someone that would be able to give him what he deserved. That I never want to be pregnant again and that he should leave me for that. That I couldn't give him more than our one son. I thought and believed that Owen would be better off without me as his mom. He didn't need this much trauma, sadness and loss in his life. He would be happier with a woman that could give him siblings. These thoughts were horrifying but I believed every one. And as much as they broke my already shattered heart, I thought for the better, for my kid, I would be willing to do that, to leave this Earth for him, for the both of them. They would be so much better off. So for those of you that asked, this was the answer. How do say that in a text?

I believed that God had forgotten about me and that hurt me personally. I felt completely abandoned. But that hurt very quickly turned to anger and hatred. I believed He had forgotten about Charlotte. Like He had too much to do on June 5th, 2015 at 1:00, that He forgot to keep Charlotte alive. That when I got up there, He'd say, "Sorry, I messed that up, my bad". I thought I had enough faith and He didn't think it was enough. That he didn't believe me when I said I couldn't do this again after we lost Conor. I was consumed with thoughts of hate towards Him. It was like I had tunnel vision and this was all I was aware of.

I began to resent Him openly. It took everything I had to make it to church and if I did, I wasn't paying attention. I even mocked others who looked to have it all together and by that I just mean kids that were living. I hated when people would bear testimony of a God that had answered their prayers because I started to believe that He didn't do that. But their stories were so convincing, I started believing it was just me. There was something wrong with me, that my prayers didn't make it to Him or that He simply didn't care. I stopped paying tithing because I wanted to make it very clear that I didn't care what He thought because he obviously didn't care enough about what I thought.

 I believed that I was being punished for being a brat in high school or picking fights with Chris our first year of marriage. That I wasn't taking good enough care of Owen so he wouldn't give me anymore children. I firmly believed I had enough faith to keep her here and if not, the thousands of people praying for her sure did! I told myself not to trust him. That He was a liar. I questioned everything I had ever been taught, every lesson in Young Women, every deep discussion about God with friends and family. I doubted everything and asked several people how they knew God was real. If prayers really were answered. I thought maybe there actually isn't a God. And that scared me. I thought I had been believing in a mystical being for so many years I wasn't sure how to change to find something new to believe in.

 If He was real, how could He do this? Did He forget I'm only twenty-three and I can't handle this? I don't know what I'm doing, surely He knew that. Why did He have to make it harder for me? Didn't He realize everything I was going to miss with her? We didn't just lose her, our precious baby, we lost our future. We lost Owen's best friend and little sister. We lost the endless possibilities of what babies carry. Did He not know me personally like everyone had told me He did? Did I not pray enough as a teenager allowing a good relationship between us? How could ask for her back too?

Soon I stopped praying completely and if I did, it didn't start with a "Dear," it started with "Hey you better listen to me!" or other things.. It didn't end with "amen", it ended with "or whatever".


These thoughts were tormenting because they felt so absolute. So palpable. I was ruined by this thinking of doubt, fear, guilt, agony, despair, suffering and loss and those feelings can and WILL damage a person, their beliefs, their family, their marriage, their life. It was a very, very bleak place. Like an abyss of black space I couldn't escape and all I had to look at or think about was how I could have saved her but didn't. The days leading to her traumatic birth and the day of replayed in my head thousands of times. The worried doctors yelling and nurses frantically running. I had nightmares of that day every time I laid my head on my pillow. Like an old record being stuck and playing over again in a loop. It just replayed Chris and I saying "Okay" and all of the sudden that turned into every machine being shut off. She was dying. I was desperately wailing, Chris was sobbing, everyone in the room was crying and then she was lifeless. Her body turned cold. And it would start all over again. And then sometimes it was I was at the end of the hallway in the hospital running to her in slow motion and I couldn't stop the machines from being shut off. The nurses station to the left and other rooms on the right, I was screaming for help, no one was there to save her but me and I physically couldn't do it. My mind just replayed all of the "What if's?"and "Could have's".

So.
Much.
Guilt.

I actually believed these thoughts. It had turned into my reality. I had been pregnant four times and only one lived. I felt worthless as a female, a woman and a wife. I'm not trying to scare you, I always been very real here so why stop now? I want to write this down so (1) if you're in this dark, horribly terrifying place, to not give up and (2) for my own sake, so I can look back and see how far I've come.

 After we lost her, they (doctors/parents/friends) told us there was nothing we could have done. And that we did everything we could. But I KNEW I could have kept her alive, by sheer will, love and faith. I knew I could. We are told with enough faith we can move mountains and I am telling you I believed I could have moved this country. That everyone was wrong and I was right, that I could've saved her.

For months I obsessed over these very real thoughts, I'd tell Chris and I would see terror on his face when I did. He didn't know how to help, no one did. People just kept telling me that I had to move on, get over it, cope in a better way, realize that they were struggling too and I hated that. I hated that no one understood the over whelming grief I was forced to wake to everyday. I began to be upset with anyone that wasn't in that room when we watched her life slowly leave her helpless little body. Anyone that didn't know what I was going through.

A friend told me this horrible truth that there is a time limit, a "social expiration date on loss and mourning". As much as I hate it, it's very true. "Like a timer goes off and it's no longer socially acceptable to be openly sad/upset/devastated/angry about a life changing experience. That once some unquantifiable amount of time lapses between you and a life shattering experience, people sort of cut you off and time you out if you're still "dragging on" about what happened. Some unwritten time span when it's no longer appropriate for people to wear their inescapable sadness on their sleeves any longer. If you do, you become that person that can't move on."  Hate began to take over my heart and deep in the trenched of my soul. I know some people go years with this much hate and I can't begin to imagine what that is like because eight months was long enough for me.

A few things have changed.
About a month ago an antique shopping day with my mom turned into an unexpected discussion about Charlotte. The drive home we talked about everything regarding her. Up until this point my mom had tread lightly. She has no idea this talk affected me as much as it did, so surprise mom! I was telling her how convinced I was that I could have kept her alive with my faith. That she should have lived and that I could not only handle but absolutely adore a handicapped child. That I had enough faith to keep her here. The more I talked the more emotion came into play. My eyes were tearing up and I began to feel personally hurt all over again. I got defensive and angry. Then she asked me the difference between hope and faith. I can't remember what I said but I remember her suggesting that maybe we had had enough hope and been mistaking that for faith. Not that we didn't have faith but that instead of blaming God for not accepting my faith it was me not accepting His will and having faith to believe that this was the plan all along. That I couldn't have kept her here no matter what I believed. No matter how little or how much faith I had. No matter how much I had hoped. When she said this I remember thinking "Well, you don't know anything and you're wrong" only to walk in the house to Chris sobbing and tell him how right she was. How I needed to hear that but how I hated the truth of it.

Every doctors appointment we went to, we were given a little more hope. Carrying our deathly sick baby to full term was an uphill battle.  Every time we saw her chubby little body in an ultrasound we were given a little more hope. Looking back, it wasn't all faith, I'd say more was hope. It was hope; a feeling of expectation or desire, a feeling of trust. Not faith; complete trust in someone or something. I realized I had been blaming this on "God's lack of faith in me".


Only a few months after Charlotte died I was talking to my sister about how I was beginning to hate going to church. I complained and complained about the "stupid" lessons and the people, it's annoying how cheerful Mormons are when you're miserable. I told her I was only still going because I wanted Owen to go. I didn't want him to miss out on Primary. Right then, she interrupted me and said "Why do you want your kid to go and believe in something you don't?" I think I was pretty angry about that but it helped me realize that I needed to figure out what I do believe in.

Another life changing thing was given to me. I asked a dear friend for help and boy she came through. She wrote me a novel of insight, advice and thoughts all with a deep love for me. Every word she wrote sounded exactly like the feelings I've had, so it was comforting to be able to relate and not feel so alone. I want to share a small piece of what she wrote;


"It's time my relationship with Heavenly Father grew up. There is a scripture in Mark where there is a multitude of people gathering around the Savior and a father approaches a man with his son who 'has a dumb spirit'. The son foams at the mouth and gnashes his teeth, I'm not sure if the son is possessed or whatever it is, I can imagine it has made life miserable, depressing, and burdened with unending laborious care on part of the poor father. He asks the Savior to have compassion and help his sick son. As he asks, he says something extremely remarkable. He says,
 "Lord, I believe, help thou mine unbelief" (Mark 9:24)
I have read this a hundred times but this time it seized my heart. I re-read it again and again. How can you believe and yet not believe? Can these two things co-exist? Unexpectedly that is exactly how I feel. I DO believe, and yet, somewhere in the deep recesses of my heart there lurks unbelief too.
 I am this man.
Somehow I'd always thought that unbelief cancelled out the belief. But it's not true. They can totally exist. I just need to try to focus on the positive side and feed what I do believe. 
Every time some major "test" has come my way I have lost my testimony's footing a bit. Was there no safety net? Wasn't there a God that could put a limit on the amount of stretching that was required of me? (Could He stretch someone else?) Because if not, if there is no safety net, so to speak, that is utterly terrifying. And I'm not up for that. I quit. I give in to my unbelief. 

I realized there were only two options. 
Give in to my unbelief and suppose that Heavenly Father didn't know what I could realistically handle -OR- start believing that there is something bigger and more important to Him than my feelings and perceived ability that He truly cared about. Something grander than how I personally felt about what I was thought a fair Earthy experience should be. So given those two options- unbelief or belief- after months of seriously and meaningfully contemplating it and wanting to hold fast to my belief, I realized my relationship with God had to grow up. 

This childish notion that He won't give us more than we can handle is so middle school. My grown up perception is that I honestly think God allows life to happen and unfold. 

So that might not be huge news to most people. I get it. But to people who have has rapid-fire sequence of life shattering challenges, that's a scary thought. It feeds unbelief. It means the Job story from the Bible could brutally happen to me personally, and if it does, God would be okay with it. 

That doesn't have the look and feel of Godly love. That's not actually in any of the lessons I sat through as a Young Woman. God being okay with pain and suffering is blasphemy isn't it? That feeds my unbelief. But while many unspeakable experiences can cause serious physical guttural pain and intense suffering, my belief says that He isn't the cause of it, 
My belief struggles against my unbelief and tells me that this doesn't mean He couldn't care less. My belief tells me He couldn't care more.

I believe God wants us to open our eyes to His grander perspective so that we can soften the hardest parts of life. I've got to focus more on where HE places the importance. Perhaps the things I think are absolutely important (death and illness) aren't a big deal to Him. I need to disarm this whole harshness of life by looking at it through His lens, not mine.



The things I put critical importance on, God does not. The things God makes critically important are the things I need to pay attention to. 



So what if the worst parts of my life turned out to be the most life changing and saving parts? What if death and illness wasn't that terrifying to God? What if I can't depend on God to save me from earthy pain and death but I could depend on Him to save me from eternal pain and eternal death? 



Love isn't God saving me from the worst parts of Earthy life, Love is God saving me for Eternal Life. I've been confusing the two and blaming God for my confusion". 


This changed the way I think of a lot of things now. It was beautiful. I don't even have to add anything. These words will change my relationship with God. And as weird as it sounds, I needed to forgive God. That's when I had a "Come to Jesus talk". It is growing, our relationship. This relieved a lot of weight from my shoulders. We're on speaking (nicely) terms now.



And then we got the autopsy results.

This changed me as a person. I really believe and have been told at least four times in the last two days that I've changed and that I'm different.

Chris and I walked into the University of Utah Hospital a couple weeks ago now. I'm not going to lie, it was hard. From the parking lot to the pianist in the lobby, memories flooded my brain. I remember being wheeled out past the pianist by Starbucks carrying nothing but my bag full of things that smelled like Charlotte, flowers, and a water jug. I remembered the music and the smell of coffee so vividly. I had the bravest face I could muster on the way out that people smiled at me while passing. I was thinking of all of the possibilities of this autopsy review. We were early so I tried to calm my panicked self down while waiting for our doctor to take us to the conference room. I walked through the gift shop which probably wasn't a good idea. It's full of last minute "I forgot a gift for my new niece" items. I went back to thinking about the autopsy. That we might not find out much. That she could have been saved. That she had so many more problems than we knew about. My doctors found us and lead us to a large conference room. It was down the same hallway I'd had nightmares about, just across from where I stayed after we left Charlotte in the NICU.

We sat down along with three other doctors and a fellow. Luckily our MFM doctor Julie was there. Oh how I love her. They started by asking how we were doing, coping mechanisms, family support, and if we wanted to try again. At first offended, I realized they are just asking questions, trying to get as much information as possible. This will all go in Charlotte Hendrickson's case for students to study.

All of these numbers represent how many things that would have killed her by themselves.

Dr. Fung, who would have taken over if Charlotte had lived, handed us each a 15 page autopsy report. She said, "We found so much in her autopsy". I immediately got excited. She started with telling us that Charlotte had a brain hemorrhage. (1) Actually both sides of her brain were bleeding when she was born. They grade on a four and she had a three on one side and a one on the other. She said that happens during a cesarean in babies under 33 weeks. It was too traumatic for her little body. They explained that that alone could've killed her or had severe lasting damage.

She had a heart defect. (2) Because her little heart was pushed so hard over into her shoulder cavity if had deformed. An artery grew in the wrong place forcing it to wrap around her vocal cords and her esophagus making her voice horse her entire life and she would have had very bad acid reflux.

Because of the Diaphragmatic Hernia (3) her whole small intestine, almost all of her large intestine, her spleen, her liver and stomach were all up in her chest cavity. Making it impossible for her lungs to develop properly. The whole pregnancy we had been watching the liver to make sure it wouldn't go up into her chest and turns out it did.

Which means that her right lung weighed 10.6 grams and her left lung weighed 2.7 grams. (4) Not even close enough for her to have survived. There was also severe damage to her lungs when they revived her right after she was born.

These are straight from the report, except what I've written in parenthesis to help you understand.
a. low set, non-symmetrical ears
b. short limbs
c. rounded forehead
d. Pallister- Killians Mosaic syndrome (may later manifest in mental retardation and a cause for almost everything in her autopsy)
e. hypotonia (low skin tone)
f. broad nasal ridge
g. thin upper lip and large tongue
h. widely spaced eyes
i. hair abnormalities
j. long philtrum (the space between your nose and your upper lip)
k. stress dyserythropoiesis in liver and bone marrow (type of anemia that shows very low level of red blood cells)
l. one artery umbilical cord
m. bilateral cervical ribs (C7) and no ribs on T12 (this was probably the weirdest thing. You read that right, she was missing her lowest set of ribs and she had an extra set off of her clavicle bone. This is NOT her x-ray, I was just trying to show you what it looked like in the autopsy, not that we saw but it helped me understand. Our doctor said this is actually not that unusual in babies with chromosome defects.)



 n. bridging palmar crease or Simian crease (a crease in the hand associated with Downs Syndrome and other genetic syndromes)

   
o. cortical renal cysts (cysts on her kidneys)
p. delayed maturation of oocytes (her eggs were so mature she wouldn't have been able to have babies, kinda creepy that they can tell that in my baby)
q. pars intermedia cyst pituitary gland (5)( she had cysts on the gland that is important in controlling growth and development which would make it dysfunctional)
r. hypercoiled cord (6) (her cord was so tightly wound, blood, oxygen and nutrients weren't getting to her, the cause of death)
s. left lower leg, dusky, and increased in circumference compared to right
t. increased nucleated red blood cells in fetal vessels (7) (she was trying hard to get oxygen, so she made as many of her red blood cells able to carry oxygen, which in the end, didn't work. They told us that it was an astounding number of cells, an adult should have 10 or less nucleated blood cells and she had 117.)

"Urgent delivery was necessitated by persistent bradycardia (abnormally slow heart action) and decreased fetal movement. During birth, fetal heart tones were lost for approximately two to five minutes and infant was cyanotic (blue or purple skin tone due to lack of oxygen) and had no tone, respiratory effort or heart rate at birth, Apgar scores were 0 at 1 minutes, 1 at 5 minutes, 3 at 10 minutes, 4 at 15 minutes and 5 at 20 minutes. Chest x-ray showed bowel loops in the left chest and deviation of the heart and thymus to the right. She continued to deteriorate despite resuscitative efforts and expired at approximately 10 hours of age". (Taken from the autopsy)

Why did she come when she did? I asked that question probably close to a million times. I asked God, Chris, family, friends. Why? She was doing just fine, why couldn't she have stayed in there a while longer and given her a better chance at survival? 32 weeks just wasn't long enough with her.
Well, remember when I talked about the ECHO machine, like bypass for babies? It turns out that our little miss wouldn't have "qualified" to be put on it. She would have had to been 33 weeks. At 32 weeks babies arteries aren't big/thick enough to handle it so she wouldn't have been able to use it. So, if she had come the next week, at 33 weeks, Chris and I would have decided to use the ECHO, hoping and believing that she would live. We would keep her living as long as possible because we wouldn't have known the severity of her defects. She would have lived probably for a while longer (maybe a couple of days, weeks) and been suffering. All the while we would be thinking that she could survive. God knew. I didn't.

So that's it, hahahaha. After every new deformity I felt a little less guilty. It was bizarre and sad but wonderful. I don't think I've ever felt those three feelings in one day let alone in an hour. I felt a small stream of peace come over me. It was back.

I was letting Him back in.

It's hard to describe in words the feelings we both felt hearing all of things that killed our baby. It was great.

I know, it's horrible, but it was everything I needed. At the end, they asked if we had any questions and I didn't. We asked lots of questions along the way and by the end I think we heard everything we needed to hear.

I walked out of that conference room with not a tear in my eye. God knew me. I felt it. It took a while to feel it but I was the one stopping that feeling. He knew that I needed seven reasons for her not to be here. There were seven things that could have killed any regular baby individually and our amazing little girl survived as long as she did with ALL of them. ALL of the odds against her. It truly was a miracle that she lived on this Earth for nine hours and twenty-nine minutes.

We're working on things over here. There is still sadness but there is so much less guilt. We still long for a future with her. Owen talks about her a lot. He wants her to have friends and be happy up there. He is worried she isn't. We talk about Heaven a lot. We don't visit her grave anymore. (Not that we won't ever again) but it's different now. The autopsy finalized that she really is gone. That she isn't coming back. Going to her grave is somber and sad. It isn't helpful for me. It reminds me that I put her in a box and I don't like that.

We miss her. A lot. I still daydream about summer dresses on her nine month old chubby, wobbly body. I daydream about playing with her and Owen in the grass at a park. I daydream about her trying new foods and laughing about what she doesn't like. Taking her for her first swim, watching her little legs kick with excitement. I dream about Chris holding his little girl. His big arms delicately holding her little frame. We lost her and that hurts. She is gone. We won't see her for a long time. But she is very much apart of our lives. We talk about her hourly and we always will. She means so much to my little family.

And I can finally say this with the most sincerity and with tears falling down my cheeks.

It was an absolute honor to carry her as long as I did. To get to know her. I feel privileged to be her mother. She is valiant and perfect. Our reunion will be so joyful.





















I'm secretly rooting for Hillary to win because that must mean the world is ending, Christ is coming and I can reunite with Charlotte sooner than we thought.

8 comments:

  1. Thank you Sarah. Thank you for always being real and opening up and letting us in. I am not trying to compare but since I just went through a miscarriage at 12 weeks this speaks up, down and sideways to my heart right now so thank you so much. Take care and keep writing! xx

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  2. Thank you for sharing. I can't believe how many of your thoughts were the same as mine at times. After 27 years I still remember those days and months after the death of our infant twins. Your post was healing for me. Sometimes I think no one understands. I still miss my little ones. Time doesn't heal (because I really hate that saying) but it does change perspective. I too look forward to the second coming.

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  3. Thanks for sharing. I think about you a lot. You are a beautiful wife and Mother. We all love and miss you.

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  4. Thanks for sharing. I think about you a lot. You are a beautiful wife and Mother. We all love and miss you.

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  5. Thank you for sharing your intimate and very insightful thoughts. May God continue to bless you.

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  6. Sarah, you are incredible. Thank you for sharing your feelings, even though it has been such a hard battle. I know I don't understand what's it's like, but I do wish I could do something that could help. I just love you and I'm so happy to hear that things areat least improving for you. Big hugs!

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  7. You freaking rock! Thank you for sharing this your blog is such an inspiration.

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  8. You do not know me. I feel kind of funny leaving you a comment because I am typically not a follower of people I do not know. In fact you're the only person I've ever silently viewed and I hope you don't think that is crazy weird!?! I stumbled upon an Instagram post of yours a long time ago when you were pregnant with your baby girl and my heart was instantly touched. I followed the link to your blog and have followed your touching posts. Throughout your experiences I have thought about you many times and prayed for you and your family. I cannot even begin to describe what an amazing example you are. I have never come close to experiencing any of the trials that you have edured but when I read your words and think of my own trials (that don't even compare) I am comforted. You are so real and inspiring. Please know that you have helped me. A complete stranger. I am 12+ years older then you and you are wise beyond your years. I know that through your experiences that you will and do help so many others to cope and try to understand life. You truly are a special women. Thank you for your testimony. My Instagram name is maegantbarnum... I leave this because I seriously feel weird being a stranger. I promise I'm normal :)

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