Capture Your Grief - Day 6: Rituals

When you were alive in my tummy, your big sister sang made up lullabies every night and sang them to you before she went to sleep, about all the things she was going to teach you when you were born. She would draw pictures on my belly for you and stick little pieces of food in my bellybutton for you to eat. She insisted that I swallow toys so that you would have something to play with. Now that you're gone, she still talks about you every night and asks me questions about you before we go to sleep. Your first angelversary is coming up on 10/25 and she wants to put presents in balloons and send them up to you in Heaven. She is worried that you won't be able to have a good birthday party there without your family. This will be the first of many of your birthdays that we will celebrate - you are remembered at every holiday with candles and drawings your big sister continues to make you. I make sure to say your name out loud and look at your pictures every day. I have learned now to trust my instincts more and my body less. 

Capture Your Grief 2013: Day 5 - Memory

It breaks my heart that every memory I have of you fits into one small box. I remember so much about you, Nicolai. When you were born, I remember staring at all your little features from the minute you came into the world until the next day when they took you away. I wanted to make sure that every detail was burned into my mind so that I would never forget how you looked. I saw your sweet face on the back of my eyelids every time I closed my eyes. You were so warm and pink when you arrived, I remember thinking that at any moment you would open your eyes and prove them all wrong. I remember trying desperately to keep you warm throughout the night, hoping for the miracle that never came. I remember those last soul wrenching hours, when despite our best efforts, we could not keep you warm and pink anymore. I remember the way you started changing before my very eyes and how I knew that it was finally time to let you go. I remember you every second of every day.

Capture Your Grief 2013 - Day 4: Legacy

Day 4: Legacy

You were to be our firstborn son. Concieved in love one year after we were married, you were desperately wanted. From that moment on, you only knew unconditional love. You were never alone, never knew sadness, never knew heartache or fear. Your big sister would sing you lullabies every night before bed, softly rubbing my bellybutton until one of you fell asleep first. Your daddy loved to feel your strong kicks against his cheek when he would talk to you in the evenings. You loved our warm morning baths, and I would lay back and dream about the day that I would be holding you and playing with you in the water after you were born. I remember the day you died, my first nagging feeling that something was wrong was after our bath, because I hadn't felt your usual tumbling and rolling around.

When I found out that you were gone, my whole world crashed down around me. My body wanted to hold on to you, and it was nearly 24 hours after my labor was induced that you and I became two instead of one. I can remember the delivery room, so still and silent, the little plastic incubator/crib meant to hold newborns lay silent and dark in the corner. I knew from that moment that I was now a grieving mother, and I would be grieving for you every day until my last breath. It seemed like such an insurmountable task, lying there in labor, knowing that I would carry this all-consuming weight of grief over the loss of you forever; and I had yet to even see your tiny face.

My sweet child, your legacy will live on through your family. Your short life, your birth, and you death changed me forever. I will never be who I was before. Your big sister still talks about you everyday - she makes you presents and draws you pictures and leaves them at night for you to fly down from Heaven and look at. If your little brothers make it, they each will have your name as their middle name. I look for signs of you everywhere, and I write your name in beautiful places that I would have loved to have taken you. Your big sister always called you "Pi," and Pi you will remain in her heart forever. I love you, I miss you, and the world will never be the same without you.

Capture Your Grief 2013 - Day 3: Myths

1.                   Myth #1:  It will never happen to me.

Stillbirth happens more often than people realize.  Pregnancy loss affects 1 in 4 women.  2^nd trimester losses are only 2% less likely than 1^st trimester losses – the risk doesn’t go away after 12 weeks.  Pregnancy loss after 20 weeks happens in 1 out of 150-200 pregnancies.  60% of the time, there is no reason found – cord accidents only account for 2-4% of fetal deaths.   Stillbirth doesn’t discriminate based on age – stillbirth still happens even if you are young, healthy, and have a low risk pregnancy.  Just because you have had successful pregnancies and children in the past doesn’t mean that you are immune. 

2.                    Myth #2:  You shouldn’t share your pictures of your baby because they make people                        uncomfortable.

These are the only pictures I will ever have of my child, and thus they are sacred to me.  I will never get to have milestone pictures of him growing up and doing all the things we had dreamed for him.  My baby is no less cherished than your baby who lived, and I refuse to act as such by not honoring his pictures.  I’m sorry if the most devastating event of my life makes you slightly uncomfortable, but this is my reality every single day.  The only way that awareness regarding stillbirth can be spread is to inform others about it through our stories, pictures, and experiences.  Had it not been such a taboo subject, and had I known how common it happens, perhaps I would have been more aware of the symptoms to watch out for and more diligent in doing kick counts, which could have potentially saved my son.  If one pregnant woman (or mother, grandmother, daughter, or spouse of a pregnant woman) sees our story and it causes them to Google stillbirth prevention so they are aware of the signs and risks and do something about it; it is worth it.   

3.                   Myth #3:  You’re pregnant with twins now – that is God’s way of making up for the                           baby you lost plus giving you another one.

My son will never be replaced.  There is no “making up” for my loss – you cannot replace one of your children with another.  Would you ever say this to a person who lost an older child?  And please don’t tell me that my son’s spirit has come back into a baby that I am currently carrying – my son is gone – implying that he died and is now back in my womb is just another way of trying to tell me that everything is back to normal. 

4.                   Myth #4:  Now that you’re pregnant, you can stop grieving and get on with your life.

I can see it in people’s faces every time they look at me and see that I am pregnant.  Relief washes over them, and I can hear them saying in their head “Finally, now we can start acting normal around her again – she will go back to being the way she used to be.”  I will never stop grieving over the loss of my son – NEVER.  Every little kick that I feel now in my womb is a reminder of my son and the only memories I have of him alive.  Pregnancy after loss doesn’t magically fix everything, like the rest of the world would like to believe.

5.                   Myth #5:  Lightning doesn’t strike twice

Statistically speaking, just the fact that you have had one late term pregnancy loss increases your odds of having another in a subsequent pregnancy by 2x-10x.  Clinical evidence shows this data applies even if there was no obvious cause of death, or even if it was a cord accident.  I will never feel safe in another pregnancy until I have the baby alive in my arms.

Capture Your Grief 2013 - Day 2: Identity

Our son, Nicolai Daniel Liedel, passed away in the early morning hours of October 24, 2012 before I woke up. I found out at 5:17pm, after not feeling him move all day, that he was gone. 24 hours later, on October 25, 2012 he was born, weighing 4lbs 14oz. I was 33 weeks and 4 days when he died. Despite a complete autopsy and blood work, no cause was found for his passing. It was a blissfully uneventful pregnancy, and we had no indication of the gut wrenching loss we were about to endure. He will always be my firstborn son. It would not matter if I went on to have 1000 more children, I would always be missing one. 

Nicolai

Capture Your Grief 2013 - Day 1: Sunrise

"With each sunrise, we start anew."

Praying for Rainbows.

There are no words to describe the fears that accompany pregnancy after loss. For 23 weeks, I have hesitated to write about it, fearing that the minute I mentioned it would be the minute it was taken from me (again). As I sit here bleak and bleary eyed, my fears all consuming, I don't know where to turn.

 The six months that we waited after the loss of our precious son were excruciating. My arms ached to hold the baby that was no longer with me. My heart tore at the sight of pregnancy and newborns. My brain systematically shut down at the sound of a baby crying in a store. I say these things as if they are in the past tense, but they are not. The truth is, over 10 months later and I still cannot process these things. I avoid mirrors and cameras as much as possible, I am filled with fear and dread when I catch a glimpse of my stomach in the mirror. I know the tragedy that I could be facing yet again.

 Almost six months to the day after the loss of our Nicolai, after Clomid and trigger shots and ovarian ultrasounds and blood work, we were blessed with a positive pregnancy test - this time with fraternal twin boys. The first 13 weeks were beyond rough, starting with an emergency room visit at 6 weeks, a diagnosis of Hashimoto's Disease at 8 weeks, and a diagnosis of probably celiac disease at around the same time. I easily visited the bathroom 20 times a day, terrified at each visit that I would find blood. I added thyroid medication. I removed gluten. My first trimester I lost a total of 14lbs. I had a bedside ultrasound every 2 weeks to make sure both little ones were still there. Each time I was terrified that I would see the cardiac stillness on the ultrasound screen that will continue to haunt me for the rest of my life.

 Second trimester. New worries. Did they run all the right tests after our loss? Why wasn't my medical protocol the same as other babyloss mamas who got the same postmortem results? I switched endocrinologists. I switched rheumatologists. I was very close to switching MFMs and perinatologists. None of my requests for blood panels were granted - everyone keeps saying they are unnecessary. I requested Lovenox since I also found out I am heterozygous for the MTHFR gene mutation and I have positive anti-nuclear antibodies indicative of auto-immune issues. Denied. Put on a baby aspirin. Today I went to the new rheumatologist. I made the appointment in April, before I was even pregnant. Today was the first available slot. Rheumatologist looks at my medical records and says that my previous rheumatologist and OB/GYN did not run all the blood work that should have been run. She started naming other antibodies that I could be positive for (SSA and/or SSB) that can cause fetal heart blocks (which wouldn't show up on an autopsy). She says that I need continuous fetal cardiac monitoring, even before we get the results back. She took about a liter of blood from me. Also told me that the diagnostic criteria for lupus has changed in the past year and a half, so there are more tests that need to be run to rule that out. I went back to the MFM practice after the appointment. They tell me that doing continuous fetal cardiac monitoring is practically unheard of and not something that is feasible, especially with twins. I start crying. I am so frustrated. I am so tired of being told "no." He says that if the antibody tests do turn up positive, I will be sent to pediatric cardiology, however the 2 doctors in that practice cannot come to a common consensus on the proper protocol for treatment of fetal heart blocks - one is very proactive and wants weekly monitoring and the other feels that it is not necessary. There is no telling which doctor I would get. I have the pediatric ECHO ultrasound scheduled for this Wednesday.

 Other concerns - I haven't gotten back up to my baseline weight. With twins, you are supposed to gain at least 20lbs my 20 weeks to lessen the chances of preterm labor. One of the boys also has some fluid built up behind one kidney. Google that and you will read all kinds of stories of cystic kidneys and how it can lead to death. I am scared everyday. I have tried so hard not to become attached to these babies, knowing the heartache that could come crashing down on us again. I feel their kicks and it is so bittersweet. It's good to know that they are still there and alive; although I can never tell if I am feeling one or both of them. If I didn't have my home fetal Doppler, I feel quite sure I would be on the psychiatric unit by this time. It makes me remember Nicolai, sitting on the couch or laying in bed feeling him tumble around beneath my ribs, kicking at the sound of our voices. All those innocent moments that I took for granted, that I will never be able to get back again.

 Today the nurse told me about a woman she is seeing whose baby is not going to make it. The baby will pass away either shortly before or after being born. This woman has a four year old daughter who is very intuitive, and every morning at 4am the little girl crawls out of bed and goes to the bedroom to check on her mommy and the baby to make sure that they are okay. She does this without any prompting from anyone. The mom tells the little girl that the angels are watching over her and the baby, and each night the little girl will draw an angel and tape it to the headboard of the bed over her mommy. This is the angel that protects their family, and that is the only hope that they have.

Time

March 16, 2012 to October 24, 2012.
You were alive under my heart
■19,267,200 seconds
■321,120 minutes
■5352 hours
■223 days
■33.5 weeks

October 25, 2012 to July 3, 2013.
I have been without you
■21,772,800 seconds
■362,880 minutes
■6048 hours
■252 days
■36 weeks
I miss you. 
I wish you would visit in my dreams.
I need to know that you are there.

Excellent article from 'Still Standing'.

Explaining Cremation to young children.

I've been struggling to find ways to explain to Natalie where her little brother's body is.  We recently talked about gravestones, as we quietly meandered through the Spanish moss covered cemeteries of historical Charleston last month.   But when she asks me, "Mommy, where is Pi's gravestone?  Is he in a cemetery too?," I have not had answers for her.  I didn't think there was a delicate way to explain cremation, as the mere concept of what's involved is quite frightening, especially to a child.  After reading this article, I now feel comfortable in what I will tell her next time she asks.   

The Reaper and the Flowers.

There is a Reaper whose name is Death,
And, with his sickle keen,
He reaps the bearded grain at a breath,
And the flowers that grow between.

He gazed at the flowers with tearful eyes,
He kissed their drooping leaves;
It was for the Lord of Paradise
He bound them in his sheaves.

``My Lord has need of these flowerets gay,''
The Reaper said, and smiled;
``Dear tokens of the earth are they,
Where he was once a child.

``They shall all bloom in fields of light,
Transplanted by my care,
And saints, upon their garments white,
These sacred blossoms wear.'' 

And the mother gave, in tears and pain,
The flower she most did love;
She knew she should find him safe again

In the fields of light above. 

O, not in cruelty, not in wrath,
The Reaper came that day;
'Twas an angel visited the green earth,
And took the flowers away.

-Henry Wadsworth Longfellow 

I've been away awhile - physically, mentally, emotionally.  I continue my search for answers, only to find a thousand more possibilities lying behind each corner.  I've found out some other medical issues that may or may not have contributed to Nicolai's death - none of the doctors will say for sure.  My husband and I are both carriers for the gene mutation MTHFR (or as I loving call it, the motherfucker gene).  I have one copy of the mutation (heterozygous) and he has 2 copies (homozygous).  MTHFR mostly interferes with your body's ability to process folic acid and other essential B vitamins, increasing the likelihood of open neural tube defects.  One copy of the gene mutation limits your ability to metabolize about 50% of your folate intake, having 2 copies reduces your metabolization to a mere 25%.  Additionally, those with 2 copies of the gene mutation can experience blood clotting problems and a host of other health issues.  My MFM would not test me for these mutations, as she says the evidence is not conclusive that they end in poor pregnancy outcomes, however it only takes a Google Search to see the thousands of associations between pregancy loss and MTHFR.  There were not any blood clots found in Nicolai's autopsy, or in the placenta or cord, but it makes me wonder if possibly he had the homozygous mutation like my husband and therefore his blood did not clot properly and that was what happened.  I do not think that they looked for blood clots in his body, as they would have been so tiny.  I found out about this gene mutation through an invaluable service that I recommend to anyone who has lost a child (or even people that haven't) that cannot afford the thousands in genetic testing of themselves or their spouses.  It is called 23andme, and for $99 and a test tube of saliva, it gives you invaluable information about your carrier status for over 50 genetic disorders, your percieved health status and outcomes for a plethora of medical issues, and so much more.   

I've also tested positive for autoimmune antibodies that make me sensitive to gluten.  For some reason, as with the antibodies I also have for my thyroid, these antibodies can increase the probability of pregnancy loss and miscarriage.  So I'm trying to go gluten free, and it is wrecking havoc on my blood sugars.  I have never had the nighttime lows that I have had the last few days.  Removing gluten from my diet has halved the amount of insulin I take.  My last A1c was somewhere between 4.8 and 5.1 (two different labs, 2 weeks apart), which is a little low for my endo's liking.  Hopefully it will stabilize soon so that I am not so physically exhausted from going hypoglycemic a few times a day.

I still have no luck being around babies.  The sound of their cries or whimpers sends me into a panic, like someone literally has their freezing fingers squeezing tightly around the chambers of my heart.  There are times I forget that I am holding my breath, and it is a wonder I don't hit the floor when I stand up.  I simply cannot be around them and to take care of myself, I avoid every forseeable situation that I can where any child under the age of two will be present.  My visible Facebook newsfeed consists only of babyloss parents, people with older children, people that don't have children, and people who do not post pictures of their or anyone else's babies.  Needless to say, there isn't much going on there, but at least I can feel safe knowing that I will not be logging on to see belly or newborn pictures.  This is is another thing my husband does not understand about me.  It doesn't bother him at all to be around babies; he says that he does not associate them with Nicolai.  Out grief, although equal in magnitude and depth, is so different.







      "They say that time in heaven is compared to 'the blink of an eye'
for us on this earth. Sometimes it helps me to think of my child
running ahead of me through a beautiful field of wildflowers and
butterflies; so happy and completely caught up in what he is
doing that when he looks behind him, I'll already be there."    

And now.

I live in fear of pregnant women.  I live in fear of babies. To me, they seem not of this world.  I want to scream at their mothers with questions, "How did you get him out alive?!"  Almost six months ago, my innocence and ignorance of the miracle of life was shattered.  It's been six months, and I still can't look at pictures of  babies.  It's hard for me to even look at pictures of my own daughter from when she was an infant.  How bizarre is that?  The only pictures of infants that I can look at without getting that scared, sinking feeling that starts in my womb and spreads to my heart and lungs, are other angel babies.  I drown myself in these pictures. With these pictures, I find solace, peace. I recognize each of them by their features in threads and forums, the way (normal) people recognize live babies on their news feeds.  I feel honored to see these pictures, knowing that these are the only pictures we have of our babies. Pictures that we can only show  other babyloss parents because others will not understand.  Or worse, they will chastise us.  I feel selfish at times.  I can't look at the babies of family and friends, but I am completely at ease when seeing photos of angel babies.  I can see in them so many similarities to my Nicolai.  The cherry lips, the darkened nail beds, the peacefully sleeping eyes.  It is in these sacred photographs that I find the most beauty.  As babyloss parents, we are connected, the survivors, bound to each other by the invisible string of grief.  We are family.

In my struggle to find medical answers, I keep finding things that are wrong with me. Things that are just enough to be clinically significant and treated, but not significant enough to definitively classify as a reason for our loss.  I feel broken most days.  I thought I was doing good by only being diabetic.  I can now add Hashimoto's Disease (an autoimmune hypothyroid condition), polycystic ovaries, and a high ANA titer to the list.  Each of those carries a risk for subsequent pregnancy loss.  And don't forget to add in the risk of already having had a stillborn and being 10lbs overweight.  I feel at times that the cards are stacked against me in ways I never dreamed possible.

I didn't think that I had a problem getting pregnant, but apparently I do.  It was easy with Natalie, I was much younger and free from any of the medical issues I have now.  I was even on birth control when I conceived her.  Fast forward 5 years to last year - 30 years old, diabetic.  It still took us less than 6 months to conceive our angel.  Now, present day, 31, a host of medical concerns (plus some that I am sure I am not even aware of) and I am under the care of an RE, being injected with and stuffed with every female hormone (and then some) known to mankind.  I now have to take Clomid from CD5-CD9, have mid-cycle ultrasounds to look at my (polycystic) ovaries, administer a huge, scary looking HCG "trigger shot" around CD14, then use messy, icky progesterone (Crinone) for another 14 days until the next cycle begins.  Each of these hormones have their own list of side and mood effects, all of which my husband has the poor misfortune of experiencing (as if I wasn't crazy enough already).  What's the worst thing you can do to a babyloss mom who is now having trouble conceiving?  Why, inject a huge syringe full of pregnancy hormones surging into her bloodstream for the next 14 days and give her false early pregnancy symptoms!  Fucking brilliant.  

Carbon Copy.

Neuroticism is a fundamental personality trait in the study of psychology, manifested by characteristics of anxiety, moodiness, worry, envy and jealousy. Individuals who score high on neuroticism are more likely than the average to experience such feelings as anxiety, anger, envy, guilt, and depressed mood. They respond more poorly to environmental stress, and are more likely to interpret ordinary situations as threatening, and minor frustrations as hopelessly difficult. They are often self-conscious and shy, and they may have trouble controlling urges and delaying gratification. (Source:  Wikipedia)

I am really worried about my daughter.  Since we lost Nicolai ('Pi'), her anxiety and worry are starting to noticeably affect her.  Especially at night, when we are laying in bed, side by side.  I see my own neuroticism coming out in her more and more.

Last night she asked me if I would shoot myself in the head if she died, so that I could become an angel and be with her and Pi in Heaven.  I asked here where she came up with such a violent idea - had she heard somebody talking or seen something on TV?  She replied no, that she had just thought of the idea on her own and had been worrying about it alot.  Then she started to cry.  She said that she wants to become an angel so that she can see Pi, but that she would miss me too much to be away from me.  "Why can't we become angels together?" she asked.  She then continued, between sobs, to ask what would happen to her if I died?  If her whole family died, and she was all alone?  And how did I know that I wasn't going to die and leave her all alone?  What would happen if she died before her family, and was all alone in Heaven?

My heart was in my throat.  My little girl, barely five years old, grappling with the permanency and vastness of death.  She shouldn't have these questions t such a young age.  She should have had a few more carefree years, living the life of a normal preschooler, worrying only about trivial issues that can be easily be fixed with a band aid or ice cream cones. 

Throughout this worry and fear, she still has this beautiful idea and vision of Heaven and angels.  I am thankful for that.  However, I truly dread the day when she grows old enough to question the validity of Heaven and the afterlife.  Because that is when the darkness truly sets in, and that is a thought process that no one can escape from once they allow themselves to wander there.

A couple weeks after we lost Nicolai, Natalie had a dream that she and Nicolai were flying through the clouds together and she was chasing him from cloud to cloud.  They both had white angel wings ("but not that round circle thing on our heads") and they were giggling as they flew above the world.  Then, they came back to the earth and were playing hide and seek among the trees, and Nicolai disappeared.  She couldn't find him again after that.  But she wasn't worried, because he was happy and smiling when she saw him last and she was sure that he was okay. 

It's been nearly 5 months since we lost Nicolai.  I have asked Natalie, on two or three occasions, if she still remembers this dream.  Some of the details have faded (of course), but she still vividly remembers the color of his shoes and his coat in the dream, and what their wings looked like.  Her description to me now is exactly the same as it was 5 months ago.  I try not to put too much heart in this.  There are a million reasons that people dream certain things, and I am (unfortunately) not naive enough to believe that this dream has any cosmic meaning, no matter how badly I want it to.

Then, on the flip side, my own neuroticism.  What if this dream does mean something?  What if both of my children are destined to become angels before me?  What if something is going to happen to my precious daughter and I lose her too?  What if her dream is foretelling the future?

Or, what if something terrible is going to happen to me or my husband?  What if the reason that I lost Nicolai was because he would have lost one or both of his parents and/or his sister and he would been left an orphan, or I would have been unable to mentally/emotionally care for him due to extensive and all encompassing grief ?  What if there really is a cosmic reason for his death?  What does it mean?  Does it mean anything?  How do I process all of this without sounding like a crazy person?

I don't want my daughter to keep herself up for nights on end as I do, to worry about the things she cannot change, in a world that will go on long after we have departed.  I don't want her to feel the darkness and the emptiness that I do.  I wanted to protect her from all of this, and I can't.

Lizard Brain.

I keep going back to the last non-stress test I had 2 days before he died.  It was a Monday morning, and the doctor I was scheduled to see had an emergency at the hospital and wasn't available.  The nurse went ahead and hooked me up to the NST machine and said one of the other doctors would be in to check on me when they could.  The office was packed with patients.

I remember thinking that he wasn't responding like usual to the bit of caffeine and food I had immediately prior to the NST (they told me to do this so that he would move around more for the test).  At the previous NST four days prior to that, the minute the soda hit my throat he practically started doing cartwheels in my belly.  It never took much caffeine or food to get him moving - he was always a very active baby from the beginning.  His movements had definitely decreased that morning.  I chalked it up to the possibility that he was still tired, as I was, and that it was probably nothing to worry about.  His heart rate was also 20-30 bpm slower than it had been four days prior, and I made a mental note to ask the doctor about it when he came in. 

About 10 minutes into the test, the machine ran out of paper and started beeping really loudly.  His heart rate was still registering on the monitor where I could see it, the record of it just wasn't printing out.  When the machine started that horrible beeping, he started moving a little more and I noticed that his heart rate became what I would call erratic (at least it seemed that way to me).  It would go from 140bpm to 170bpm and then it would go to 120bpm and then for several periods of 5-10 seconds, it went to zero. 

The nurse came in the room and was changing the paper in the machine when I asked her what was going on with his heart rate fluctuations.  She said that the beeping probably woke the baby up and that he changed positions to one that was harder for the monitor to pick up. She said it happened all the time, no big deal.  She had me stand up and reposition the 2 sensors on my belly.  After that, the paper started printing his heart rates again. 

A doctor I had never met before came in shortly after.  I told him about the paper running out and about the erratic heart beats that were showing up on the screen.  I told him that I was a little miffed about the decreased movements, because he was always so active (especially after a little caffeine).  The doctor told me that babies heart rates often times fluctuate, and that he agreed with the nurse that the lapses in heart beats were probably just a malfunction of the sensors not being able to pick it up.  And that as babies get bigger, their movements decrease - I needed to not worry.  But just to be safe, he agreed to leave me on an 15 minutes.  His heart rate continued to go up and down - it would fluctuate from 100-180bpm, and then bottom out to zero for a few seconds before jumping back up again.  The last test four days prior, his heart rate stayed at a stable rate of 150 -160bpm range throughout the entire 30 minute testing.  And it never lapsed to anything less than that - and definitely not to zero. The doctor kept saying that the baby was changing positions, and that is why the machine wasn't picking it up.  But I knew that this wasn't the case, because I wasn't feeling him change positions. 

Had the doctor looked at my chart, he would have seen the marked decrease in fetal movements during that test from the one I had prior that.  He would have seen the difference in heart rates.  He told me that all this was normal and that babies don't always move around the same amount every days.  He was busy with all the other patients that he was having to see in addition to his own patients.  He signed off on the NST paper and told me that everything looked fine and to come back on Thursday to see my regular doctor.

I trusted him.  He was the doctor, after all.  He knew what to look for and he had probably done thousands of these tests.  If he was telling me that everything was normal, then surely I had nothing to worry about.   I was still innocent in that moment.   I still had 100% confidence in my care providers and felt that I was in the home stretch.  My pregnancy had been such an absolute breeze compared to my last one. 

That night, laying in bed with my husband, I had a (very) sudden and unshakable sense of dread and fear. I can only describe as a darkness, a void, a hopelessness that oozed over me.  I told my husband about this unexplained feeling and that I hoped my postpartum depression wasn't coming early. I didn't think it was related to Nicolai.  In fact, laying in bed, at that very moment, he was wiggling around under my fingertips.  I tried to shake the feeling.  I convinced myself that it was just pregnancy hormone fluctuation and that I should just go to sleep and stop trying to over analyze it.  And so, after about 15 minutes, I drifted into a restless sleep.

In clinical settings, it is a common phenomena for people to sometimes gain a sense that something very bad is about to happen. It is not a panic attack, as often the person experiencing it is very calm, but knows that something bad is happening. The Mayo Clinic even lists this 'impending sense of doom' as notable sign for myocardial infarction (heart attack).  This phenomena is sometimes called, "The eye of Casandra," referring to the Greek heiress of Troy who was able to sense the worst before it happened. It is an occurrence that paramedics report in the field.  Parapsychology teaches us that we all have a built in warning system that stems from our evolutionary roots.  Often referred to as our 'lizard brain,' this part of us is responsible for our instincts.  The famous analytical psychologist, Carl Jung, coined this the "collective unconscious."

Charles Darwin described instincts as being unconscious; that is, they are not the result of conscious deliberation and are not learned behavior. Many instincts are inherited virtually unchanged from parents to offspring.   He noted that 'pointers' (dogs that are used to hunt waterfowl) do not need to be trained in how to “point” at their target. On the contrary, they do need to be trained to hold still when a gun is fired, and to not maul a duck if it is shot and lands nearby. “Pointing” is an instinct.
 
We all have these inherent instincts that alert us to impending danger.  It is just too often that we do not listen or adhere to them.  Our conscious brain uses reason and past learning experiences to calm our 'lizard brain' down.  Sigmund Freud described this mental battle as a struggle of power between two of our three ego states, the 'id' and the 'super-ego'. 

The id is unconscious, instinctual.  It is the dark, inaccessible part of our personality - the construction of our neurotic symptoms.  We approach the id with analogies: we call it a chaos, a cauldron full of seething excitations.  It is filled with energy reaching from the instincts, but has no organization, produces no collective will, but only a striving to bring about the satisfaction of instinctual needs.  It is the only component of personality that is present from birth."  (If you know me in the real world, you will know that my id is dominant ego-state.)

The super-ego is in constant contradiction with the id.  It is the part of our unconscious that is formed through internalization of moral standards, parental expectations as a child, and society's norms. It helps us 'fit in'  to society by acting in socially acceptable ways.  The super-ego criticizes and prohibits our instinctual drives, fantasies, feelings, and actions. It is the part of our unconscious that punishes us with feelings of guilt and self doubt. 

My lizard brain, my id, my collective unconscious, my 'sixth sense,' - it knew that something terrible was about to happen.  It knew at the doctor's office during the non-stress test.  My super-ego convinced me to doubt myself.  It paraded all the statistics and research, all the reasons that my medical providers knew best.  It made me self-conscious, it persuaded me not to be the high-maintenance patient and insist that something was wrong when the doctor was telling me everything was fine. Later that night, my id was screaming at me, desperately, in any attempt to alert me of impending danger that lay ahead.  My dark super-ego waited quietly before sneaking up and attacking it, rendering it unconscious and unable to keep me awake with the fear of the reality that was about to unfold.               



        

Our Nicolai.

Autopsy results, etc.

We got Nicolai's autopsy results back on Christmas Eve.  What a way to add insult to injury, eh?  As suspected, there was no clear cause of death.  The genetic analysis could not be performed because they were unable to get the culture cells to grow from the tissue sample.  I can't help thinking - what if it was something genetic?  Just because he appeared healthy from the autopsy doesn't neccessarily rule out a genetic factor, does it?     

So, I guess we will never know; and that is the scariest part.  No doctors are able to tell us what kind of increased risk we would have of this happening in another pregnancy, just that it is somewhere between 2x and 10x the risk of the regular population (which is 1 in every 160 babies past 20 weeks gestation).  I don't even know what I would change, except probably everything.