Tag Archive | chromosome abnormality

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!

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Is He Your First Baby?

I meet many people throughout the course of the day, who stop and say how beautiful our little Miles is.  They’ll ask his name, how old he is, how much he weighs…and then this question always seems to follow… “Is he your first?”  I usually let out a long, heavy sigh before I attempt to answer this question.  Do I tell the truth and give as many descriptive details about Sephora’s life as I can?  Or do I simply say yes, and move on?

Our first baby passed away.  She had a severe and extremely rare chromosome abnormality that 1 in 16,000 babies are diagnosed with.  Trisomy 13.  I learned at my 20 week ultrasound appointment that she had several internal issues that we later would find were lethal to her.  We named her Sephora Angeline after that appointment.  It didn’t matter what any medical professional had to say to us.  She was our first baby.  Our first daughter.  Our little Sephora.

Days passed, and we met with a neonatologist who recommended they perform an amniocentesis to determine exactly what was ailing our baby.  When we discovered Trisomy 13 was in fact the correct diagnosis, we were sitting at our kitchen table.  When I hung up the phone, I collapsed into my husband’s arms and cried.  Our first baby wasn’t going to live outside of my body for very long.  All we could do was love her.  We loved her even more after we’d learned about her fatal diagnosis.  Every day from that point on was spent singing to her and rubbing my belly, poking her and feeling her poke back.  We made memories with her throughout my pregnancy, and we couldn’t wait to meet her.

We knew Sephora’s life would be short.  We grieved for her during my pregnancy, and we grieved for her after she had passed away.  We loved her every second of every day she was with us.  Today, as I kissed her baby brother’s cheek, I imagined what it would be like to have a toddler running around the house.  What would she look like?  What would we be doing with her?  What would we be teaching her?  What would she be doing to make her baby brother giggle?  I miss her today, but I will see her again!

1 Corinthians 13:7  Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.

The Summer Heat

Sephora’s due date was supposed to be in 3 short weeks from now.  The amount of swelling and fluid I’d been retaining 5 weeks ago when Sephora was born due to the preeclampsia and HELLP Syndrome was awful!  I don’t even want to imagine how swollen my whole body would be if I actually made it to my due date!

Summer certainly has made itself known in my town!  My husband, Chris and I stayed in the house for most of the day today because the temperature was close to 100 degrees!  He went outside to water all of our beautiful plants this morning before the sun got too hot.  We contemplated going on our “daily date” to the grocery store, but because the air conditioning in our car doesn’t work, we decided to hang in for the day.  I’m hoping summer doesn’t stay this hot, because I don’t foresee the air conditioning being fixed until possibly next year.  The idea entertaining a bill for labor, for a mechanic having to rip apart the entire front console in the cab of the car, just to figure out where the freon is leaking into the cab, then fixing the hole and putting everything back together makes me a little dizzy.

Last night, we met with our Life Group from church as we do every Tuesday.  The new series we started discussing is called “Beautiful Things.”  How do you find beauty in tragedy and death around you?  When we first started attending our church last fall, I’d been waiting to start to “feel” an emotional tug at my heart.  It only took a few short weeks for this emotional tug to take place.  Although I didn’t know this at that time, I firmly believe this was the way God was trying to reach me.  He was trying to tell me to hold on tight, because you’re going to need me.  A few months later, we’d received the horrible news that our little Sephora had Trisomy 13, an awful chromosomal abnormality that would likely take Sephora away from us too soon.  I also believe, had we not found this church and called it home, and heard the sermons and lessons every Sunday when we attended, I’m not sure emotionally where I would be.  Chris and I have each other.  We have our family and friends.  If we didn’t have God…if we didn’t have a firm understanding that this life on Earth is not going to be our final resting place…if we didn’t learn that Sephora ws given to us to teach others about love and humility, and also to shape and strengthen our story…I would envision a never ending rain cloud following over my head.  Instead, I have hope of a brighter day.  My Little Ray of Sunshine is always with me, her beautiful garden grows, and her incredible story continues.

Isaiah 55:11:  The LORD will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail.