Rh-Issue, Part II

I waited the four weeks they demanded, and just got my blood test yesterday.  Today I just found out...nothing.  My test results came back, but are almost identical to last month--too small to titer, but there.  Which tells me that A.) it's not time to freak out about rh-disease and treatments yet but B.) I could still have it.

The problem here is, I have an issue that has been all but eradicated since the dawn of the rhogam shot in the 1950s.  So, there's almost no research on it.  I can ask questions until I'm blue in the face, and all anyone can really tell me is that I have to wait and see.  The test is so rare, even, that they have to send my blood to the state lab.

But here is the best we can figure:  There are two possible explanations for me having Antibody-D in my system.  1.) It's just from the Rhogam shot, like getting the flu from the flu shot (sort of).  Or 2.) I actually was exposed to some of my daughter's blood, and I developed the antibodies as a defense. 

Let's get honest here, though.  Option #1 is looking pretty improbable.  The rhogam is supposed to last only 12 weeks...and it's been 9 months since I got it.  The math doesn't really add up that it would still be in my system.  

So, the other two possibilities would be that either I will develop Rh-disease, or I have some strange base-line level of antibodies that I will always have.  

Which there is no research on.

So for now, we'll test again in four weeks.  Here's hoping the numbers change...or someone learns how to answer my questions.

Day 28, Capturing My Grief

Day 28, Memory

Carpenter was born around 7pm.  I had been awake for about 36 hours, unable to sleep for crying.  After he was born, the nurse let us hold him for a while until it looked like I couldn't keep my eyes open any more.  Knowing now Mike could take care of him for me, I accepted my exhaustion.  I laid back to rest as the nurse and Mike were prepping Carpenter for a few photos.  Right before I fell asleep, I begged Mike to get a picture of his little feet, in a heart shape.  Luckily, he did...and I love this picture.  I guess it's because so many living babies have this photo.  It's so normal.  And my sweet boy was totally normal--just gone too soon.  He is my son no less than Liv is my daughter, and deserves a few sweet shots like this around my house.  I love this memory...

Finding normalcy amidst the fog...this is my grief.

Day 27, Capturing My Grief

Day 27, Artwork

I am not the most artistic person in the world.  My hands don't do well with drawing, painting...or even writing.  Ask anyone I've ever written a letter.  But one thing I really like doing is playing with flowers.  And on Sunday, I wanted to make something for the altar at church.  It was, after all, the day Carpenter was supposed to have been baptized.  So I made him an arrangement to celebrate that I knew he was there for his sweet cousin on her special day.  This is a forty-pound pumpkin, white, filled with roses, spider mums, button mums and daisies.  Bright colors to remind my sweet Carpenter what a bright spot he is in my heart and in my life.  

Never seeing flowers without thinking of my son...this is my grief.

Babyloss in Gifs, Rainbow Emotions

Stages of Pregnancy After A Loss:

"Holy crap I'm pregnant again."

"Wait.  What?"

"OMG I'm pregnant!"

"Calm it down.  There's a long way to go from here."

"But I'm pregnant!"

"HOLY CRAP!"

"This is awesome!"

 

"But this time we know what can happen!"

"But still..."

*Now play on a loop every minute for 40 weeks.*

Babyloss in Gifs, Insurance Company

So, my insurance company called the other day

They had heard I was pregnant.

The nurse was all

Until I told her I'm all

Then she was all

She asked me a million questions about Carpenter

When I told her it hurt to talk about him so clinically, she was all

So I felt

And we continued

But at the end she said that I'm doing everything right

And there's no reason this pregnancy won't go perfectly

But I did everything right last time...

You know,

Day 24, Capturing My Grief

Day 24, Siblings

These are my babies.  All three of them.  Each captured in this moment, living, warm, protected by my body.  Completely equal in life.  When each of these photos were taken, no one would deny that I had a new baby.  No one would deny the life inside me.  But all too often, people quickly forget about that second little picture there--the picture that shows an adorable, growing, living baby.  

But I will never forget, and his siblings won't either.

Every day, Liv sits on my bed, staring at her brother's photos, sweetly saying, "Baby!"  Today, she sat at my desk, pointing and chanting at Little M's ultrasounds.  She wears "Big Sister" t-shirts and awareness ribbons.  She knows about her siblings, and she always will.  And I will talk to all of my children about their siblings, so that while they may not get to be together in body, they will always be together in spirit.  

Because death is not the end of sibling love...this is my grief. 

Day 23, Capturing My Grief

Day 23, His Name, His Photo

This is my beloved son, John Carpenter Vorys II.  

This sweet boy who sleeps with a teddy bear protector was named for his great-grandfather. 

I'll let his beauty speak for itself.

Day 21, Capturing My Grief

Day 21, Altar

On their frantic rush through airports to get back home to us, my parents called a family friend, Sister Anne, to tell her of Carpenter's death.  When they finally arrived at the hospital, Sister Anne had already beaten down the door of Father Brian's house--right in the middle of the night.  She demanded that we were important to her, and he needed to be there for us the minute we were ready.  And he was.  The morning after Carpenter was died, Father Brian showed up in my hospital room.  Right there at the foot of my bed, this kind man performed a baptism for my sweet baby.  And it was an absolutely beautiful service.  It couldn't have been more intimate.  It was in a cold hospital room with no fancy clothes or foods or presents, but it was perfect.  It's the only sacrament my son will ever be able to celebrate, but at least we were there, and we got to experience this rite together.  My family just stood in their place, and my niece climbed up on my lap while I cried.  This was our altar, and this is my grief. 

Day 20, Capturing My Grief

Day 20, Charity

Yeah, yeah.  I'm skipping a couple.  It's a hard day, really, and so it's been a hard week.  Anyway, on to Day 20, which is near and dear to my heart.

Lil Angels Hankies is my favorite charity for pregnancy and infant loss survivors.  This seems a little obvious because I actually sew awareness ribbons for each hankie that goes out to families.  But, LAH is more than that.  This group of women, many of us who have never actually met, are the best group ever, bar none.  In fact, today, I rely on them like sisters.  You see, I began my relationship with LAH by requesting a hankie for Carpenter.  I furthered it by sewing ribbons.  But now, I turn to this beautiful group of women for support when I can turn to no one else.  And others turn to all of us through our Facebook page.  The universal truth of babyloss is that we all must bind together to best survive this tragedy.  Lil Angels Hankies binds us together. 

For more information on what we all do, visit Lil Angels Hankies Website.

Day 17, Capturing My Grief

Day 17, Special Dates

I just got a call yesterday from a friend who is pregnant with what we hope to be her rainbow.  She had an ultrasound and found out her due date.  She's due on June 17.

Carpenter's due date.

I'll be honest.  It slapped me across the face.  As if sensing my grief, my phone dropped signal, and I was left alone.  

June 17.  It was supposed to be the day I held a crying baby boy in my arms.  

This year, on his due date, I was going to make a huge deal.  We were going to do so many things to celebrate our son's short life.  I felt the worst for Mike, since this would also be his second Father's Day.  Of course, life's curve ball surprised us with some extended-family drama.  A few people decided to make sure the spotlight was on them that day.

Our big day was overshadowed.

But we did do a few special things, just for us.  I had bought Mike something special for his first Indian's game coming up soon, and we had bought a tree to plant in my parents' yard. 

We realized that day that June 17th may have been a big deal for us, but it probably wouldn't be for many people.  It was really hard for me to accept, but we saw then that birthdays, due dates, anniversaries, memorial events--they would probably be private events, just for our little family. 

And that's okay.

Because I know that the people who loved Carpenter the most will always remember him.  Those that never left his side--they will help us celebrate his life.  And that is exactly how it should be.

Remembering what's really important--remembering our Carpenter...this is my grief.

Day 15, Capturing My Grief

Day 15, Wave of Light

Day 14, Capturing My Grief

Day 14, Community

Heartstrings saved me.  

I cannot overstress that statement.  8 months ago, I was totally lost, and my nurse Jenn told me, "You have to go to Heartstrings."  Too scared to travel this dark road alone, I signed up immediately.  The top picture is of a number of the couples in our support group.  They saved me too.

They not only listened to Carpenter's story and held my hand, but they were brave enough to share their stories with me.  They showed me I was not alone.  We were wounded, vulnerable, and still opened up our arms to one another.  We saved each other.

This past weekend, Heartstrings hosted our 8th annual Walk To Remember.  I was so excited I was allowed to be a part of the planning committee.  I was really in my element, getting volunteers in the right spots and putting out fires.  I realized yesterday that my work through Heartstrings is accomplishing two things.  I am staying close to an organization that lifts me up every day.  But maybe, just maybe, my work in this community is going to one day save someone else from their grief.  

Never forgetting to give back to the community that saved me...this is my grief.

Day 13, Capturing My Grief

Day 13, Signs

I am obsessed with rain.  I love rainy days.  Sometimes I think I might love to live in the Pacific Northwest, but then I remember it snows there, and I thank my lucky stars I live here.  Cold = ew.  

But there's just something about rain.  It reminds me of when I was little.  My grandmother used to watch my brother and me during the day.  If it rained, she would dress us up in my late grandfather's work shirts and send us out to her long driveway.  We would hop from puddle to puddle, demanding Grandma watch us the whole time.  Barefoot and happy, and connected with my grandfather long gone--that's how I remember rain storms.  

Since Carpenter died, every time I see a rain storm, I just know Carpenter and my dear grandfather sent it to me.  When the wind blows huge washes of water across our cul de sac, I throw open every window in the house and breathe in the fresh air, straight from heaven. 

Waiting for a rainy day...this is my grief.

Day 12, Capturing My Grief

Day 12, Scents

A few weeks after Carpenter died, Liv and I headed out for the mall in search of some hand soaps.  Bath and Body Works was having a sale, and I figured it was a safe trip for our first outing post-loss without daddy.  While there, I remembered in college having a pillow spray that was just heaven, so I checked the aromatherapy side.  Anyway, I apparently hate lavender now, and ended up leaving with this orange-ginger body wash called "Energy."  

I don't want to get into an advertisement for this soap, but I have become obsessed with it.  Honestly, when I first used it, I felt alive.  Now I need to smell ginger all the time.  I use this soap and lotion.  I cook with ginger (Ginger Walnut Salmon, anyone?).  I even made agua fresca de lima with a bunch of ginger ground into it.  Fabulous.  

I can't explain it.  I've never cared about ginger before.  But now, when I smell that tart, citrusy scent, I think of my little Carpenter in such a lively, positive way.  He really does give his mommy energy.

Finding energy wherever I can...this is my grief.

Day 11, Capturing My Grief

 Day 11, Supportive Friends and Family

 

This is my family--Carpenter's family.  I cannot say enough wonderful things about them.  

My parents flew home from New Mexico the minute they heard about Carpenter, and brought him a beautiful rosary that sits on my desk now.  There's a tree planted in their yard, and my father comments on how he thinks of Carpenter whenever he pulls in their driveway.  They are always there for us.  

My brother and sister-in-law dropped everything to rush to the hospital the minute we heard the bad news.  My brother barely left my side the whole time I was there.  He helped us say goodbye one last time.  My sister-in-law seemed to run the world, making sure I had everything--and everyone--I needed.  She is my best friend.

My niece, the oldest of the cousins, she never--ever--lets me forget about Carpenter for even a day.  I'll never forget how many times she wanted to look at him in his bassinet in the hospital.  She sat on my lap through his baptism and let me cry.  I'm sobbing now just thinking about it.  

My nephew provided excellent comic relief, and insisted everyone stare out the window at the first snowfall my children had ever seen.  Carpenter was born on Liv's first snowfall.  She hasn't seen another one since, I think.  

And my little niece, born two weeks after Carpenter--born on his funeral day--well, she and I are working on it.  She's patiently waiting on me, and I'm growing stronger every day.  But while it was so hard for me to be near her for so long, she gave us something we desperately needed this Spring:  something to hope for.  She was born 11 weeks early, and watching her fight her way through the NICU gave us a light in the distance.  We followed that light slowly out of the horrifying darkness.

There are so many others that were there every step of the way, and I hope that I have told them how much they mean to me.  If not, I promise, I will.  But today, a date is looming in my mind.  Next Sunday would have been Carpenter's baptism into the Church.  Just like Liv and my nephew were baptized together, Carpenter would have been baptized with his newest cousin.  

Always supportive and a true, true friend, my sister-in-law wants to make Carpenter a part of the ceremony nevertheless.  One of the ways she suggested was to add a note on the invitations.  I expected a short comment.  I'll leave you now with what she wrote:

"Eight months ago an angel was born to heaven. While we are recognizing this baptism for E, we would also like to honor our nephew John Carpenter Vorys II who was born with wings just a couple weeks before our Nora’s surprisingly early arrival.

Our oldest daughter C has kept us well informed on how our family up above has been adjusting without us. We have heard stories of Carpenter making friends with former presidents such as George Washington and Abraham Lincoln, as well as enjoying tea parties and cake with our dear Grandma. C recently taught us something we have been so naive to have overseen; This is what we have learned about angels... "Angels come by when we are sleeping and sprinkle sparkle dust on us so we have sweet dreams," said C.

I asked her, "So if we wake up in the morning and remember what a sweet dream we had, what does that mean?"

"That means an angel came by and told us what dream they wanted us to have and the angel sprinkled the sparkle dust on us to make it come true," informed C. "They also give us cloud kisses so when our mommy kisses our cheeks she thinks we have cloud fluff on our cheeks."

She said this to me while hurrying along our bedtime routine in hopes she might see Carpenter that night. Without even realizing her accomplishments, she has reminded us adults a way to keep him close. Carpenter, until we meet again, we love you and we look forward to watching you grow in our dreams.

Love,
Your Family

Heaven will hold you before we do and keep you safe until we come home to you.

Day 10, Capturing My Grief

Day 10, Symbol

This is a ginkgo leaf.  All along the road leading up to Indians' stadium, there are beautiful ginkgo trees, dropping their sweet little leaves on the ground.  We stopped to take a few pictures of Carpenter's teddy with the stadium behind it, and Liv crawled around collecting leaves.  Ginkgo leaves have been with us since the beginning of this journey.

At our hospital, there's no special hallway for mothers delivering dead babies.  They do their best to separate us from the other deliveries, and I only remember hearing one other mother, sobbing.  But the nurses also make a special effort to remind hospital staff you're in mourning.  They put a ginkgo leaf on your door.  It's just a little sign with a silhouetted leaf, shedding a tiny raindrop that looked like a tear.  But that sign reminded hospital staff that I was not to be congratulated.  I was to be treated with more care and respect.  It was such a kindness to me.

If only I could wear a ginkgo leaf around every day, reminding people they may need to treat me with care.  They may see me cry, and they should understand.  They may hear me yell, and they should forgive.  

But there's no such symbol.

On the way out of the hospital, they insist on pushing you in a wheelchair.  A sweet old volunteer came around and picked me up to take me to my car.  Of course, there was no ginkgo leaf on my wheelchair...none on my shirt.  That man didn't know to treat me any differently.  He took the shortcut straight through labor and delivery, and passed the happy mothers on our way.  I sobbed, knowing I couldn't say anything without hurting this innocent man.  He waited with me while Mike got our car, and tried to chat.  He told me "that box is so pretty," and motioned to the handpainted box holding everything I would ever have of my son's.  I lost it.

Sometimes I still lose it.

Wishing I could cover myself in ginkgo leaves; wishing the whole world knew my story...this is my grief.

Day 9, Capturing My Grief

Day 9, Special Place

This is Jacobs Field.  Mike is probably the world's biggest Cleveland Indian's fan, and has been since he was ten years old.  The way he cheers for one of the losing-est teams in the Major League never ceases to amaze me.  But, he was born in Cleveland.  He was born into loving this team, so he'll tell you.  

Ever since we first met, I've heard the same strange request.  When Mike dies, he's leaving money in his will to anyone who will take his ashes and spread them across Jacobs Field.  The money is just in case you need bail, or to have a victory toast if not.  When Carpenter died, Mike was determined his son would rest in the same place as his father.

When my mother (also from Cleveland) found out what a fan he was of the city, she was determined we should all take him there.  It would be his first visit since he moved at two years old. 

So last month, my mother, father, brother, sister-in-law, 2 nieces, nephew, daughter, husband and I all packed up and headed for Cleveland.  We went to Mike's first Indian's game.  He held our son's ashes and his teddy bear through the whole game.  At one point, my dad looked over and said, "Is that my grandson you've got there?"  

It was the best game ever.

After the game, at an undisclosed time and date, a small portion of Carpenter's ashes made their way onto the field.  (Undisclosed because we haven't saved up the bail money, yet.)  Now every time Mike sees the field on tv, he just looks at me and says, "Our son has the best seat in the stadium." 

Seeing my son in the blades of grass at a baseball game...this is my grief.

Day 8, Capturing My Grief

Day 8, Jewelry

This isn't even all of it.  These are probably the five pieces I wear most often, but I have other necklaces and bracelets.  The two small hearts are from In Our Hearts Photo Pendants.  The large heart is a locket from England I bought when I was in the hospital.  The "Carpenter" necklace was a gift for Mother's Day.  The round pendant has his monogram, a gift for my birthday.  Mike makes sure I get one present from Carpenter for every special occasion.  In the beginning I prayed wearing my jewelry would encourage people to speak about Carpenter, ask me about him...anything.  It was amazing to me how few people mentioned it.  Now I wear my jewelry just for me, as a way to keep my sweet Carpenter close.  My niece often wants to borrow a necklace to wear around for a day.  It means the world to me.

Carrying my son around my neck instead of in my arms...this is my grief. 

Day 7, Capturing My Grief

Day 7, What To Say

So many of us can agree.  The most important thing you can say is our angel's name.  This weekend, my cousin's daughter was visiting and we were all playing in the yard.  We were trying to show my niece there was nothing to be afraid of in the dark by explaining the shadowy figures she saw.  My cousin's daughter totally shocked me when she pointed left and said, "That's Carpenter's tree over there."  Every single time I hear someone say his name, my heart smiles.  Because as long as we all talk about him, remember him, remind each other he is real...he lives on.  

Clinging to the moments someone randomly says my son's name...this is my grief.

I Would Like To Cry Uncle Now

I haven't answered my phone in about two days.  No texts, no emails.  I've tried to unplug and hide.  

I got some bad news this week.  

On Thursday, about 7 hours before Mike was supposed to come home after a week-long conference, I got a call from my nurse.  They had done my standard OB blood panel on Monday, and she had just gotten the results.  

First, she said, my Progesterone is not looking good.  It's not climbing.  It's not even staying the same.  It's dropping.  So now the dreaded suppositories are gone, and I have to move up.  Two shots, every Tuesday and Friday, right in the butt.  

And that was the good news.

She wanted me to come in to talk about the second part.  She really needed me to understand, and this was going to be hard to hear. 

I have Antibody-D.  No, I don't expect gasps of instant understanding.  Let me explain.  I have a negative blood type.  If you're Rh-negative and pregnant, you have to get a shot during pregnancy that you're told "will keep your baby safe."  That's all they really say.  So I never really thought anything about it.  

This shot apparently keeps you from ending up with antibody-D.  But I got it, most likely from delivering my daughter.  Her blood mixed with mine, and since she's a positive blood type, my body saw her blood as an attack and developed antibodies to attack it.  This is called Rh-sensitivity.  

In four weeks, they will test my blood again, and count the antibodies.  If they keep multiplying, I have Rh-disease.

Rh-disease causes anemia in the baby.  The mother's blood attacks the baby's, and destroys the red blood cells.  So they have to do an amnio to find out the baby's blood type, then do more amnios to keep an eye on the red blood count.  If it gets bad, the baby gets blood transfusions.  

(How the hell do you give a baby a blood transfusion in-utero?) 

If this is what killed Carpenter (which we may never know), there is an 80% chance this will happen to Little M.  Eighty percent.

It's possible this is what killed my son.  It is possible I don't have anything wrong with me.  But either way, I cannot retest for four weeks.  I have to live with this information for a month, and there's nothing I can do about it. 

I call uncle.  But since I know the world isn't going to let up any time soon, I'm just going to crawl into bed now and pretend everything is okay until the sun comes up. 

Day 6, Capturing My Grief

Day 6, What Not To Say

I will preface today's entry with sage words from Mike.  It's not that these words are intended to hurt.  They do come from a place of love.  And this exercise is not intended to hurt or embarrass.  It is merely a list of things that can hurt to hear.  I ask that you please don’t tell me...

Everything happens for a reason.  God has a plan. 
- I cannot believe God's great plan had anything to do with my son's death.  If so, I deserve an amazing explanation.

It was probably for the best.
- A baby dying is never a positive thing, in any capacity.  Ever. 

 He died to glorify God. 
- He could have glorified God plenty through a life of prayer and good deeds. 

 I know how you feel.   
- Unless you have lost a child in pregnancy, you do not know how I feel. 

You can always have another.
- I want my son.  No new sibling of his can possibly replace him.  He was an individual, and is loved and needed as such.

Now that you’re pregnant you can be happy now. 
- No new pregnancy will ever erase my son, my love for him, or my grief.

This baby’s going to be healthy. 
- You don't know that.  And since I know what can happen, I will be more realistic this time around.

Don’t worry, things will get better.  Time heals all wounds.
- Time does not heal all wounds.  In time, we will better incorporate our feelings and grief into our daily lives.  It will not go away. 

We just really want a boy.
- One in four of us just want a baby to have lived. 

He’s in a better place.  
- He would be just fine here in my arms.

You really shouldn’t cry all the time.  
- I don't choose to cry all the time.  It just happens.

I just can’t be around you anymore.
- Honestly, that's okay.  But don't tell me.  Your inability to deal with my grief does not help me.
 
Why won’t you hold my baby?
- I won't hold your baby for plenty of tragic reasons.  If you don't understand this, please just pretend.
 
When are you going to be over this?  
- I will never ever ever get over this.

Day 5, Capturing My Grief

Day 5, Memorial

As a memorial to my sweet Carpenter, I have been making Pregnancy and Infant Loss Awareness Ribbons for the past seven months.  At first, I donated some to our local hospital. Now, they're included in every package that goes to bereaved families from an amazing charity -- Lil Angels Hankies.  To date I have made about 600 ribbons, including 150 for our local Walk To Remember coming up next weekend.  I make these ribbons so that families might have an outward representation of their angel that could even open up conversation on the topic.  It's only through speaking out, both actively and passively, that society will come to understand the horror that affects 25% of all pregnancies.  And every time I see one of these ribbons, anywhere, I am reminded that my son is with me at all times.  This is my grief. 

Day 4, Capturing My Grief

Day 4:  Most Treasured Item

This is Carpenter's teddy.  Nurse Jen gave it to us in the hospital.  Starting that day, wherever I went, that bear went with me.  It was as if I was able to take Carpenter with me.  I slept with this bear every night, and if I got up for something, Mike took over bear-care.  I gave this bear all of my kisses and hugs because I had no one else little to snuggle.  My arms would have been totally empty if not for this bear, which got me through the worst times.  After many months we decided that a great way for Liv to connect with her brother would be to play with his things.  Now Carpenter's teddy is in Liv's toy bin, and gets played with every day.  And one day she will understand when we tell her, "This is your brother's bear." a

Day 3, Capturing My Grief

Day 3:  Self Portrait, Post Loss

This is the exact day I delivered Carpenter, just a few hours before he came into the world silently.  I don't know why, but I was taking a few pictures around the room, and decided to turn the camera on myself.  I'm swollen and puffy from crying and being on fluids for days.  I hesitated to post this picture, because I feel so ugly.  But it was an ugly moment, so this photo is as honest as I could possibly be.  I was destroyed, lost, broken and ugly.  And still some days I feel just like this photo.  This is my grief.

Day 2, Capturing My Grief

Day 2 of CarlyMarie's photo challenge: Self-portrait pre-loss. 

This is me the weekend I found out I was pregnant with Carpenter. We had a photographer do pictures of our whole family (siblings, kids, parents, etc) and we had a fabulous time. This is one of very few family portraits that includes Carpenter. I realize today I will never have a picture that includes my whole family now that Little M is here. I will never see my whole family together. Would that I could regain the innocence captured in this picture. Just four happy people, who knew nothing would ever hurt them. Until it did. This is my grief.

Note:  Day 1 was skipped.  The theme was "sunrise" and as it's been pouring for two days straight, that's not been an option.  :)