Tag Archive | trisomy 13

19,613,070 Seconds

Our lives have changed so much in the last 4 years.  I’d always wanted to have children of my own.  I’d always wanted to hear little voices calling, “Mommy” from upstairs.  I’d expected my life would be care free, worry free, and pretty easy.  Never did I ever imagine my first baby would die.

4 years have passed since we received the word that our 1st baby had some pretty severe abnormalities inside of her tiny little body.  Our 20 week anatomy scan was supposed to be a very exciting hour of watching our baby move and wiggle on the tv screen.  We watched in awe as the tech showed us her face, fingers, and feet.  When she finished, she told us to hang tight until the doctor could see us.  We walked out of this appointment with sad eyes following us out of the building, and tears flowing down our cheeks.  I looked at my husband as we walked arm in arm and exclaimed, “We’re having a baby girl!”  I was so excited and sobbing hysterically at the same time.

We met with our peri-natologist.  After 2 hours of scanning my belly, and eventually scheduling an amniocentesis, we learned our 1st baby was indeed going to die.  She had a very rare and severe chromosome abnormality called Trisomy 13.  We then were faced with the decision of what to do next.  I’ll be honest…for 30 seconds, the thought of inducing and delivering her early crossed my mind.  Then I woke up from my daze and remembered she was OUR BABY!  There was no way in Hell were we going to remove her from her most safe, sacred space before she was ready to be welcomed earth-side.

Sephora grew happily in my belly for 32 weeks and 3 days, until I developed Severe pre-eclampsia and HELLP syndrome.  My liver and kidneys were shutting down, my blood platelet count dropped, and my blood pressure was 190/98.

32 Weeks

Sephora Angeline was born on Friday, May 18, 2012 at 10:25pm via ceserean birth.  She was blue and not responding well to the oxygen they had given her, so my husband brought her over to me to hold.  The nursing staff thought we’d only have seconds with her alive.  She was so small.  3lbs 9oz, 16in.

Sephora Angeline

Knowing she wasn’t going to live very long, I did the one thing I knew would console her.  I sang.  Our little Sephora came to life when she heard my voice.  She passed away peacefully in my arms 4 1/2 hours later.  Although our time with her was short, I loved every single second we spent with her.  All 19,613,070 seconds with her.  She was perfect.

We have grown a lot as a family since writing my last post, both emotionally and literally.  We have another beautiful little girl who will be turning 1 year old very soon, Mr. Miles is 2 1/2, and Sephora would have been 3 1/2.

Family

Stay tuned for more updates!

Mother’s Day Came Again

I’m not sure when it happened.  I’m not sure when I stopped thinking it was fun.  I’m not sure I’m happy.  I’m not sure why it is such a big deal.  I’m not sure why I feel this way…

…Until Mother’s Day came.

As social media becomes filled with anthems for the “love of moms,” I reflected and spoke my thoughts out loud to determine my inner issue.  I don’t feel like Mother’s Day is such a big deal.  “Happy Mother’s Day,” I hear while I’m doing some last minute shopping for our 2nd child’s 1st birthday party.  I respond with a quick, “Thanks,” and keep on going.  I suppose I should be “happy” to be “honored” on Mother’s Day.

2 years ago on Mother’s Day, we went to church, and I was handed a red rose for being a 32 week pregnant “Mom.”  Sephora was due in another 8 weeks.  We had no idea that we’d be celebrating our daughter’s birthday 5 days later.

On this day, 2 years ago, we were blessed with a 3D/4D ultrasound from Sustaining Grace, where we received a recording of Sephora’s heart beat inside of a teddy bear.  I was so happy to be able to get a glimpse of her, knowing our time with her was running short.She was still cozy and safe inside of my body.

I feel this way because she isn’t here.  A part of me is missing.  I don’t feel her like I used to.  There are not an over-abundance of butterflies this year.  I don’t see much of her signs anymore.  The only sign of her that I see every day, is the dimple on her brother’s face.

I feel so scatter-brained.  I can’t think straight.  My heart aches for my daughter today, and there is nothing I can do to bring her back to me.  She may be watching over me, but I can’t feel her!  I JUST WANT TO FEEL HER SPIRIT!!!

It’s Simple… “Love”

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It is hard to believe that Sephora would have been 1 1/2 years old already.  As I sit and write today, I’m currently watching Miles play with his toys on the floor and crawl around the room to pull himself up using anything he can hold onto.  It makes me wonder what Sephora and Miles would be doing together.  Would she nicely share all of her toys?  Would she be chasing the dog around the house?  Would I be chasing her while she chases the dog around the house?  I’d imagine she’d be dressed in something frilly with little curly pigtails in her hair.

The holiday season wasn’t as challenging as I’d imagined it would have been.  We had our moments when we wished she were here to open presents, to giggle with excitement, and to make holiday crafts together.  We spent the days as a family, enjoying our time while playing with our little rainbow baby boy.  …and then I’d heard the ignorant comment through the grape vine, that someone couldn’t believe we were still talking about her.  How could we still be grieving for her?  Why haven’t they moved on?  My answer is simple.  Losing a child is completely different than losing a parent or other family member.  It is unnatural for any mammal to bury a baby.  Elephants, whales, monkeys, chimpanzees, dolphins…they all grieve for babies that have passed away.  We all grieve for as long as we live.  You should thank God that you’ve never had to experience as loss like ours.  Hold your kids a little tighter tonight knowing they are safe in your arms and not in the ground or in a tiny urn on the shelf.

Some days I still wonder why our baby had to be the one to leave earth after 4 1/2 hours of life to be made an angel in Heaven.  Why did she have to have Trisomy 13, a chromosomal abnormality that 1:16,000 babies get?  She looked so perfect on the outside.  Why did every cell inside her body have to be “abnormal?”  For what purpose was she given to us, only to say goodbye so soon after her birth?  The only reason I have come up with…she was made with love and born to show the world that something beautiful and perfect could be born and pass on into a better life.  She taught us the real meaning of “love.”  All Sephora ever knew was love.  She knew love from her family, friends, and people who never met her.  I had no problem telling anyone who asked when her due date was, that she wasn’t going to live very long.  The amount of belly touching, with permission, was phenomenal!  People asked us why we chose to carry and give birth to a baby who likely wouldn’t survive.  My answer…She was my daughter.  She was my first born.  I sang to her every day.  We worked out together.  I loved her.

It’s Simple…  “Love.”

Capture Your Grief, Day 15: Wave of Light

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Today is Baby & Infant Loss Awareness Day.  If everyone across the globe lights a candle for 1 hour beginning at 7pm, there will be a continuous Wave of Light across the world, to remember and honor each baby that never had the chance to come home, and those babies that were taken from us too soon.  Please join my family today as we remember all of those precious angels that are no longer on Earth with us.

Sephora Angeline

Sephora Angeline

Capture Your Grief 2013, Day 9: Music

From the moment I found out I was pregnant with Sephora, I sang to her every day.  The one song that I would repeat to my belly over and over again was “You Are My Sunshine.”  When arriving at the hospital and being diagnosed with preeclampsia and severe HELLP Syndrome, we knew that day, Friday, May 18, 2012 was going to be Sephora’s birthday.  When we were told I’d be taken back for a c-section, my husband sat on the hospital bed next to me and cried.  She was taken from us 8 weeks earlier than we had planned.  We didn’t know what God had in store for us and how long she would live.  We held our breath until I felt them pull her from my belly and rush her over to the drying/warming table.  All I remember is wanted to see her!  Little did I know, Sephora wasn’t doing very well.  They had dried her quickly and gave her a little bit of oxygen, but she wasn’t responding to their treatment.  The nurse told my husband to rush Sephora over to me because she thought we would only have seconds with her, and she knew how important it was for me to hold her.  He held Sephora close enough for me to kiss her.  When I started singing to her on the operating table, her color started to get better, and she even started to cry a little!  She recognized my voice and was comforted by the song she had heard every day.

Capture Your Grief, Day 4 – Legacy

Sephora’s life, though short, was beautiful.  She changed me and all who loved her.  Her purpose was to bring people together.  Her purpose was to share love with those who didn’t know love.  Her purpose was to walk others through grief and tragedy, pain and suffering, and prove to others that despite what they’re going through, nothing is impossible.  The rain clouds do disappear.  The sun does shine again.  Somewhere, there is always a rainbow waiting to greet you with a smile on the other side of the storm.  Grief isn’t pretty…but when you’ve made it to the other side, the tears and memories are beautiful.

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Capturing Your Grief, Day 2: Identity

The month of October is used to remember many important things in our lives.  We mention awareness to Domestic Violence and Breast Cancer, but one that is not mentioned very often is Infant Loss Awareness.  There are many reasons for a baby’s passing that we’ll never fully understand.  For the month of October, I choose to celebrate my beautiful rainbow baby, and also remember our precious little girl who never got to come home–Sephora Angeline.  Our “Beautiful Angel.”

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Sephora Angeline…Her name came from my husband.  We were walking around our local mall, and passed a large make-up store called “Sephora.”  He looked at me with a large twinkle in his eye.  I knew he had instantly fallen in love with the name.  I, on the other hand, was not in love with it.  One day, before leaving the house, he screamed her name from the bathroom…”Sephora Angeline!  Get down here!!!”  He poked his head around the corner with delight and said, “See baby!  It sounds great!  Even when she’s in trouble!”  From that day on, I had fallen in love with it.

Sephora’s birth was quite unexpected, although we knew she wouldn’t live very long, due to the Trisomy 13 diagnosis.  She was delivered via emergency c-section at 32 weeks, 3 days due to me developing a severe case of pre-eclampsia and HELLP Syndrome.  She weighed 3lbs, 9oz and was 16 inches long.  She had dark brown, curly hair.  12 fingers.  10 toes.  She was tiny, but perfect!

Psalms 34:18 – The Lord is close to the brokenhearted; he rescues those whose spirits are crushed.