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.

Hurry up and Wait.

We just had our appointment at the high risk doctor / perinatologist and I can't stop crying.

My OB had given us the go ahead to start trying to conceive again in January, but the perinatologist told us we needed to wait 6 months - 1 year minimum to minimize our chances of another loss.  I had an uncomplicated vaginal delivery and our son weighed 4lb. 14oz.  The perinatologist also said that now since I have had one stillborn child, the chances of me having another are between 2x and 10x the normal population, even though there isn't a known reason for his death.  She also said that even though I had such tight control over my diabetes, that just the fact that I am diabetic increases those odds and the odds for other problems (pre-eclampsia, pre-term labor, etc.).

The autopsy results still have not come back yet, but preliminary results are not showing that there was anything wrong with him or me, the placenta, or the cord. All my blood clotting results came back normal, and I did not have any exposure to CMV or parvovirus or other viruses that they tested for.  I did have a slightly elevated ANA titer (1:320) and will be seeing a rheumatologist.  I had the same elevated titer 2 years ago as well and saw a rheumatologist, but they didn't find any indication of autoimmune disease.   I had pre-existing diabetes (insulin dependent), but my A1C was perfect throughout my pregnancy - between 4.9 and 5.4, and they do not think that had anything to do with our loss. She also talked about switching the Cymbalta that I have been taking for 6+ years (through both my daughter's pregancy 5 years ago and my angel's pregnancy) and switching me to something like Zoloft that has more research behind it - just to minimize the risks of complications by another percentage point or two. 

I am just so sad, I had my heart set on us trying again in January and was thinking that since I took such excellent care of myself during pregnancy that my chances of having a recurrence were minimal.  I was just hoping for better news.   I feel so defeated.

 

Just Breathe.

Having lost my baby just 6 weeks ago, I now worry excessively and irrationally about my 4.5 year old daughter.  Every little sniffle, cough, tummy ache - and I'm terrified that she is going to die too.  It doesn't help that last night, as she was laying down relaxing in bed, she suddenly jumped up and started crying.  She told me that she thought her heart had stopped like the baby's did (because she was lying so still) and she needed me to check her heart and to make sure that she was still breathing.  She didn't want to die too.

The past week she has come up with a plethora of heart wrenching questions, usually asked during non-opportune times like while we are driving home from school, waiting in line at Walgreens, or on the playground.  These are times when I absolutely cannot lose my composure, lest I drive off the road or make other parents question my sanity.

Some of the questions that have come out this week (note:  my daughter always called the baby "Pi" - we don't really know why and she just called him that from the moment we told her about the pregnancy, and that is what she continues to call him.)

"Did it hurt Pi when he died?"
"Did Pi cry when he died?"
"Did Pi know that he was dying?"
"Why couldn't the doctors help Pi to not die? Hospitals are supposed to make you feel better and not die."
"Why didn't I get to see Pi - you and Daddy did, I really wanted to see what he looked like?"
"Did you bring flowers to Pi when he died to make him feel better?"
"What happened to Pi after he died?"
"Why can't God bring Pi back for just a little while so I can play with him?"
"Am I going to die too?"
"I want to be an angel right now so that I can play in the clouds with Pi"

The questions go on and on.  They are heart-breaking.  She asks me every day when the "baby fairy" is going to come and put another baby in my tummy.  She got so used to me being pregnant, that now all she wants to do when she plays with her Barbies or plays doctor is to pretend that she is having a baby.  It's so fucking sad, I can't deal with it.

Yesterday was my 6 week follow up appointment with my OB.  The waiting room was miserable.  I counted 2 newborn babies (one who was crying) and 5 pregnant women, one of whom bumped into me as I was leaving.  I sat in the chair and plugged my ears with my fingers, closed my eyes, and rocked back and forth until the nurse called me back.  I'm sure everyone thought that I was nuts.  As predicted, no results back from the post mortem, although my OB did call the pathologist who said that the results would be back by the end of this week and that so far, on the preliminary report, she didn't see anything that stood out as a conclusive cause of death.  I had 10 vials of blood drawn to check for various things in hopes that if something showed up in them, I could be treated for it so this wouldn't happen again.

And tomorrow was supposed to be my due date.  Instead of having my baby, I will be more than likely reviewing his autopsy report.