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."