The Weeks and Months to Follow

It has been just over 6 months since we lost Aiya.  My mind still goes back to the day we lost her and the weeks before.  My heart is heavy when I think of her, but it is also so full.  She has made me a better person; a more caring person.  I pray so much more than I ever used to.

Today I was thinking about after we left the hospital and went home.  I was supposed to go back to work a couple days following her delivery.  I thought it would be a good way to keep my mind off everything.  When I got home, I fell deep; down into this hole of darkness.  I would catch myself staring out the window as time passed by.  Hours would pass at what seemed like a glance.  I stayed home for two weeks. 

Having to go into our room and box up all the clothes and things we had already bought her was horrible.  I held them and cried and cried.  And threw them into a box and put it down stairs.  I still haven’t opened it.

Christmas was awful.   Just two weeks after delivering her.  I had picked out the cutest outfits for her that I knew were wrapped up for me from my family – thankfully they did not give them to me.  I did not want to go anywhere or see anyone.

In January we went back to Minnesota to collect her ashes.  I walked into the place alone, trying to keep it together.  It was time to take my baby girl home.  The lady walked out with a small white plastic jar that looked like a urine sample collection cup.  Her name was written on the side.

I lost it.  I lost all of me in that building.  My baby was dead.  This was real.  This is how I get to bring her home.

Instead of cuddling my newborn-smelling, baby girl, I get a urine cup with a bag of ashes in it.  I opened the top to see inside.  There was hardly anything in there; maybe a teaspoon of ash tied in a plastic bag.  Last time I seen her, she had 10 fingers, 10 toes and a beautiful little face.  Now she is dust.

They make preemie urns.  Her’s is a bird.  It fit her ashes perfectly.  I find myself walking through the living room talking to her.  I occasionally pick up her urn and kiss it.

At the hospital, they dressed her in an angel gown.  It had been made from someone’s wedding dress.  I will never know who it came from, but thank you to whoever you are.  It was beautiful.  I have a wedding dress from a wedding I called off 7 years ago.  That dress now has a purpose.  I will make gowns to give to hospitals in Wisconsin so anyone who loses a child can dress them in a beautiful dress if they choose.

At her ultrasound in Milwaukee, they made a disk of pictures and I believe, a video of her.  I have yet to look at it.  It may be a couple months or years from now until I am able to bring myself to see her when she was alive.

We had her wrapped in a pink blanket, at the hospital. I had received it from a lady that went through the same thing we did.  I truthfully would never have been able to get through everything, if it wasn’t for her.  She was the one person in this world who knew exactly what my heart felt like.  How scared I was.  How guilty I felt for having to make a choice for my baby.  And how broken I was every day after.  I sleep with the blanket every night.  It smelled like her for a while.  Now it is getting dirty and needs to be washed, but I can’t bring myself to wash her out of it.

I like to talk about her now.  I tell everyone about her.  About who she was to me and to this world in the short time she was here.  Because of her story, I have talked with numerous people who lost babies or went through something similar.  I feel her story is helping others cope and heal and understand that life can be unfair and they are not alone. 

But,

There is a rainbow with this story.  And it is 18 weeks along.  Handpicked by Aiya from heaven.

We had our harmony test at 10 weeks and found out the baby is low risk for trisomy 21, 18 and 13.  We also found out that we were having a girl!!  We had our anencephaly ultrasound at 11 weeks at Milwaukee’s Children’s Hospital and found out that as of 11 weeks, she has a round head and everything looked great and she was measuring on.  The next nervous step was waiting for our 18 week anatomy appointment to make sure her organs were functioning and there wasn’t a small encephelocele anywhere.  We found out that she is as normal as normal can be.  She is healthy with no concerns.

Praise.  Jesus.  We will hopefully get to hold our baby girl and watch her grow.

The day we found out we were pregnant again, I was 3.5 weeks along.  We went trap shooting that night.  Out of the woods, in the midst of 15 people shooting clays, an eagle flew out and circled for about five minutes.  Our first good ultrasound was at 6 weeks.  That night we shot trap as well and again, an eagle flew out.  She knows.  She’s happy.  She’s our guardian angel, letting her mama know it’s going to be ok this time.  I have faith and I pray hard.  The power of prayer, I truly believe, can conquer.  Please pray for this baby; for her health and for her life.

Thank you to all who has followed Aiya’s story.  To those who think about her when they see an eagle.  Or tell people about her short life and who she was.

After every storm there is a rainbow of hope and her name is Nova, in memory of her sister, and she is 20 weeks along.

The Time Before and After

2016 was the worst year of my life.

There was so much good and so much bad, but the overall depth of the bad, drown the good and held me under.

I started the year a single mother.  I had a job I liked, that put food on the table, allowed me to own my home, and give my child many things, others are unable to give their children.  I’m not rich financially, but I am doing ok.  I am rich in the love I have in my life.

In the Spring of 2016, my son was 3 – soon to be 4; a June baby.  He was the best gift God ever gave me.  Even with the challenges of being a single mother, he was worth ever struggle, tear and worry that came with it.  I was soon to be turning the corner to 30, and told myself that if I didn’t find “Mr. Right” by the time I was 32, I was going to go to a sperm bank and have another child by myself.   Being a mother is the best thing I have ever done with life, and I had soo much more love to give another child.

One of my girlfriends at work knew I was on and off dating sites, hoping to find “the one”, but always coming up short.  I just never found myself interested in become a relationship with anyone I went out with.  She said there was a guy at work I should go on a date with-see how it goes.  Long story short, we hit it off and fell in love.  Quickly.  We were pregnant 4 months later.  My son loved him, I loved him, I was turning the corner to becoming 30 and all my dreams and wishes were coming true.  I was certain this was the best year of my life.

I am a worrier.  A worrier x100.  I found out I was pregnant at 3.5 weeks.  Barely had a positive at home test.  I went in for blood tests, and sure enough, my numbers were rising perfectly.  I was beyond thrilled to say the least.  We both were.  This was my boyfriend’s first child and he was in for the ride of his life.  The amazing life of parenthood.  The cravings came on strong right away – this was much different then with my son.  My doctor scheduled me an early ultrasound to “ease my worry” about the pregnancy.  I went in at 6 weeks and they said I had a blighted ovum.  This means my sac was empty; no baby.  No heartbeat.  No fetal pole.  I was crushed.  They asked me if I wanted to have a D&C to speed up the miscarriage or let my body do it by itself.  I told them I was pregnant.  I knew I was.  I told them I wanted another ultrasound.  3 days later I went back in expecting the worst.  There it was.  My baby’s heartbeat.  Strong and steady.  I sobbed and sobbed.  God answered my prayers.

The weeks after were a whirlwind.  We had the harmony test done.  We found out that our baby was low risk for Trisomy and down syndrome.  We opted to find out our baby’s gender as well.  I was certain he was a boy, my boyfriend, however, was certain it was a girl.  I just wanted a healthy baby.  The friend from work that set us up, helped with our gender reveal.  She created a chalk bomb, that when you shoot a bullet into it, it would explode either red for a girl or blue for a boy.  She was the only person who knew until it exploded.

We were having a girl.  My family was complete.  My little boy and now a little girl; I was blessed beyond measure.   I checked her heartbeat every day to make sure she was doing ok.  I found it super early with my at home Doppler; 8 weeks.  I started buying the sweetest little dresses.   Couldn’t wait till she was old enough for ballet.  We went over name after name after name.  Lola was a top choice and then we decided on Nova.  I felt her kick at 18 weeks.  She was so strong.  She was like a little tube in my belly when I laid down.  I gained no weight going into my 19^th week, but she was growing.  I remember making a pie for work the week before my 20 week ultrasound.  A pumpkin pie.  She loved it.  She went crazy every bite I took.  I will always remember her love for pumpkin pie.

My 20 week appointment was scheduled for the end of November.  I could not wait for my boyfriend to experience this for the first time; to see the tiny details of his baby.   Everything started out great.  She was measuring a little big.  She had 10 toes and 10 fingers and the cutest little face.  And then they went up to the top of her head.  They tried and tried and said they couldn’t get a good angle because she was stuck in my ribs.  She brought another ultrasound tech in and she said the same.  Her head was measuring 15 weeks in one spot and 17 weeks in another.  The rest of her was measuring 21 weeks. They sent me home with the pictures they could get.  That is when I knew.  In my heart, I knew, there was something wrong with my baby.

The picture of her head was not round.  Above her eyebrows it was flat and extremely elongated.  But the rest of her was perfect.  It had to be a bad angle right?  I would wait to talk to my doctor.  My ultrasound was on Friday and he wasn’t in the office until Monday.  So I researched and researched and waited and waited.

He finally called Monday morning.  He said that he had bad news.  It looked as though the sutures in her lower skull we overlapping.  He wanted me to see a specialist of Maternal Medicine an hour away.  He said to not get worried until they looked at it.  I had to wait a week until that appointment.

I researched and researched overlapping sutures.  Ok.  Misshaped head.   That’s fine.  There would be potentially little to no problems with the brain, low chance of paralysis. Ok.  Good.  I will get my baby girl the best helmet and surgery to fix this for her.  Anything I can do I will do for her.

I waited that week in agony.  My baby, what is wrong with my baby?  The day finally came and the answers we received were worse.  The doctor said she had an encephalocele.  The worst encephalocele she had ever seen.  An encephalocele is an opening in the skull where the brain protrudes out.  She said my daughter’s condition was lethal.  Lethal means she would die.  No matter what.  She wanted to send me to the Children’s Hospital of Milwaukee to further look into my daughter’s situation and they would be able to give me options.  Options?  What do you mean options?  Like surgery?

Terminating the pregnancy is what she meant.

No way.  Kill my baby?  Are you kidding me?  Never.  Never.  Never.  That is not my choice to make.  There has to be hope.  There has to be something.  Surgery maybe?  Even if she is disabled, she is alive and I can learn to take care of her with any challenges she has.  Please.  Please God.  Anything but death for her.

I waited another 3 or so days before I could go to Milwaukee.

I locked myself in a room at work as I couldn’t cope with the world.  I was broken.  This was broken.  What will they say in Milwaukee?  They are the best in the state.  They have to have an answer.  A surgery.  Something.  Pray.  Pray.  Continue to pray for her.

I prayed harder than I have ever done before.  I called on friends and family to pray for my family and my daughter.

In my heart I knew.  I knew there was no hope for her.  So I prayed for guidance.  I prayed that God gives me the answers I need to make the best choice for my baby, even if it is the worst choice a parent would ever have to make.

Milwaukee came and went.

The news got worse.  “Her skull ends at her eyes.”  “ The top of her head is open.”  “We are unsure what is keeping the inside of her head inside.”  “She is missing parts of her brain.”  “She will never live outside of you.”  “Your baby will die.” “We have never seen anything like this, we are surprised she has made it this long”.

I watched her suck her thumb on the ultrasound that day.  It breaks my heart to write that. 

But how can she suck her thumb I asked them. She has to be ok right?!  I mean right?  No.  No she isn’t.  Even babies without brains can live inside their mothers.  We protect them as mothers.  From all the bad.  We protect them while we carry them.

What do I do!?  What can I do?  Is there a surgery!?  Help me.  PLEASE.  Help me.  Help her.  Save her.

“There is nothing we can do.”  “There is no way to cover where her skull is missing.”  “Her head is full of fluid and it is twice the length of a normal baby.” “She is missing the part of her brain that will ever let her breathe outside of you.”

“If you carry her to term, she will either die in the birth canal or suffer.”  “If she doesn’t die right away, she will die within a day or two and get meningitis and suffer.  We can drug her up on pain meds until she passes to help ease the pain.” “Her head might explode during delivery because she is missing her skull.”

Are you kidding me?

I have to make this choice.  For my baby.  My little girl.  I asked them how I could possibly choose?  I choose death or I choose suffering and death.  Their response put the choice I had to make in perspective. “Sadly, her death has already been chosen for her.  You will just be choosing her birthday.”  “It is the best choice you can make for your daughter.”

So there it is.  The beginning of the end.  I had to schedule an appointment for the Children’s Hospital of Minnesota.  Wisconsin’s law states that you cannot deliver a child early, even with a lethal diagnosis, after 22 weeks.  I was 22.5 weeks.

I heard a long time ago, that if you see an eagle, it means you are going the right way in your life; that you are where you are supposed to be at that moment.

We saw 2 eagles on the way to Minnesota.

Minnesota was a whirlwind.  I had another set of ultrasounds and met with 3 more specialists.  Again.  It was the worst they had ever seen.  They were able to diagnosis her there.  Exencephaly.  It is one of the most rare neuro tube defects there is.  The doctors I seen had never seen it before.

Google it. There is almost no information on it.

Children with anencephaly start out with exencephaly.  Eventually the amniotic fluid eats at the skin where the skull is missing and creates anencephaly.  In my daughter’s rare situation, the amniotic fluid never got through, so head continued to fill with fluid and stretch.

I was induced around lunch time on a Friday.  I was given cytotek over and over and over again to try to kick my body into labor.  I cried.  A lot.  The countdown to my baby dying has started.

Why?  I would have given my soul to save her; for there to be a chance for her.  Why!?

I was advised she would most like pass during delivery.

24 hours after my induction started, my daughter was born.  Alive.  She lived for an hour in my and her father’s arms.  She didn’t breathe, or move, her heart just beat and beat until it eventually stopped.  She was beautiful.  Everything about her was perfect.  Aside from her head; but she was still perfect in my eyes.  Her head was worse than I thought it could be.  Her skull ended at her eyes and the skin continued halfway up her head.  The top had a clear membrane where I could see inside her head into her brain and fluid.

They had to plastic wrap her head, because they were afraid it would open while we held her.

She was soo small.  1 lb 2 oz.  My princess.  My angel.

While she was alive, we were fortunate enough to have her baptized.  We took pictures of her and with her to always remember.  As if we could ever forget.

We spent 4 hours with her.  Even after her heart stopped, we weren’t ready to let go.  How do you hand over your baby, knowing you will never hold them again?

As time passed, her body grew very cold and started to turn black.  I didn’t want to remember her that way.  Neither of us did.  We kissed her and handed her off.  That is the last time I seen my baby.

We named her Aiya.  It means bird.

It has been 4 months since she was born.  Her due date is 3 days away.  Since Minnesota, she has been sending me eagles.  So many eagles.  In the last 4 months I have seen close to 75 eagles.  As many as 3 in a day.  That is her.  Telling me its ok.  That she is ok.  That the choice I had to make for her is ok.

I have to have faith in that.  That those are a symbol of her.  A sign from her.

My heart hurts daily.  I cry often.  I still don’t understand why.  I am a good mom.  I would have given anything I had to give her a fighting chance.  Some days I barely keep it together.  My son is the string that keeps me from falling apart.  His innocence and love for me keeps me fighting.

I have to have faith that God has a plan.  This terrible, terrible experience has brought me closer to him.  I hope that someday I will understand why.  Why do shitty, drug addict, neglectful parents get to have healthy kids?  Why did mine have to die?  Why didn’t she get a chance?

Everyone has their own opinions about the choice I had to make for my daughter.  Everyone can keep their opinions to themselves.  Until you have to walk in the shoes I have had to wear, you will never understand the magnitude of having to make a choice like this for your child.  I could never let her suffer.  Ever.  So I made the best choice I could for her to save her from pain.

Now she is in heaven.  Now she is my angel.

We had her cremated.  Her urn is half of the size of a pool ball.  It is a silver bird.  She sits in the living room on the mantel; looking over us.

Do you know why this blog was initiated?  Someone left a Scentsy sample in the work bathroom.  The smell was called Newborn Nursery.  I smelled it, I fell apart and needed to talk about this.  I have held it in in for 4 months.  The pain and the heartache, building and building.

It’s been 4 months and I am still broken.

I hope this finds the family going through what we went through.  Know that you are not alone.  I know the pain you feel.  I know waking up and having my heart break over and over again.  Know that I am sorry that this has happened to you and your baby.  Continue to pray and don't loose faith in God.