This Little Girl Taught Us So Much in Her Lifetime

Thanksgiving week 2014 we welcomed Emilia Louise, 20 weeks too early.  Here is our story.  It is VERY long.  There are many details that I simply couldn’t leave out and had to rewind a bit in time to tell the whole story.

Not everyone knows, but over the years I have struggled with fertility — unfortunately, the cause is “unknown”.  Like many other unknown medical things in my life, this doesn’t surprise me.  My son was the result of 2 in vitro (IVF) attempts. 

This year, we decided it was time to go back to IVF and were scheduled for September.  A few months before IVF, we enjoyed our summer and spent time with the family on vacation.  In early July, I did my final tests to prepare for the IVF procedure and I received devastating news that my blood work was so bad that IVF may not even work.  Needless to say, we carried on and had all the hope in the world.

Mid-July, my dear husband (DH) and I decided we were going to be tennis pros (stay with me here) and go out on the court for a few hours to exercise.  I pounded my serves like I was Serena Williams – why, I will never know.  The next day I woke up and couldn’t even move my neck.  Couldn’t rest my head on top of my body.  Not even for a second.  I could only lay down and knew something was wrong.  Thanks, Serena. The long story short is I had an MRI the following Monday and was told I had a herniated disc with severe impingement — most doctors don’t use the word “severe”.  A week of diagnostic tests and steroids revealed that I truly needed surgery and we were scheduled for the following Monday.

I went to the doc’s office for the pre-op exam and was told I wasn’t pregnant (they have you take a quick test at all pre-op appointments).  I scratched my head for a second as my cycle was late, but just played it off for the moment.  And…bought some tests on my way home.  I just had a feeling. Friday morning I woke up around 4:00AM and just couldn’t wait.  Within minutes, a very faint second line showed up on a pregnancy test.  It was a miracle.  I was pregnant!  NATURALLY!  No IVF!! I ran to the store to get more tests (thank you 24 hour CVS!).  And every brand came back positive.  Why the doctor’s office one wasn’t positive is strange, but I was so early, I’m sure that’s why it did not pick up.

I spoke with the surgeon and my OB and they both decided there was no way I was going to have spinal surgery – especially given my fertility record and the miracle here, we just decided to not go forward.  I rested for weeks without moving.  Worked from home with an office on my lap and somehow made it through the worst part of the pain.  Weeks turned into months of physical therapy and somehow, I have basically healed.  Thank you, Emilia…?

Time went on and every test for pregnancy came back normal.  Early scans showed no issues.  All genetic tests came back normal and low risk.  My OB and IVF docs were shocked that I defied the odds of infertility.  Everyone hoped for success.  And we thought little Emilia was very healthy, as she made me so sick.  Straight for 17 weeks.  I just KNEW she was a girl, based on my level of nausea.  DH and I paid for an early gender scan to see what we were having and I should have just skipped it…of course I knew it was a girl!

Fast forward to 20 weeks.  The appointment everyone looks forward to.  The one where you “officially” find out gender and see baby in all of her glory.  You see the little fingers wiggling, legs kicking, even sometimes sucking a thumb.  But our appointment quickly went from laughter and joy to silence.  Something was wrong.  The ultrasound tech called my OB and sent me to the hospital for a level 2 ultrasound.

I cried and cried and cried all the way there, don’t even know how we actually drove.  Within minutes they confirmed Emilia had an omphalocele, a birth defect of the intestines.  They also saw two cysts in her brain that were suspicious, but sometimes not anything to be concerned about.  With the defect and the cysts together, Trisomy 18 (a chromosomal abnormality) was likely.  My only true option was to get an amnio to see what was going on.  So I did, right then and there.

Why these things happen on a Friday I will never understand.  The weekend following the amnio was the worst wait of our life. We researched omphaloceles extensively.  I even joined multiple groups and talked to mothers about the defect and what their lives were like as infants.  Multiple surgeries, a long stay (up to a year) in the hospital, not being able to hold the baby, etc. was what I learned. And not necessarily a guarantee of survival. How unfair to a child is all I could think.  But if she had it, we would fight for her no matter what.  Between the two awful paths (extensive surgeries for the birth defect vs. Trisomy 18) all I prayed for was a clear answer.

Monday morning following the amnio couldn’t have gone slower.  By 3:00PM we got the phone call.  Poor Emilia had Trisomy 18, a random and unavoidable occurrence unrelated to genetics or anything I could have possibly done.  She had little to no chance to live and most definitely according to my doctor would never make it to birth.  It was the clear answer I prayed for.  The doc listened to her heart rate and it was barely there.  I should have known this as Emilia stopped kicking over the weekend.  She was on her way out. We had some time to think and decided to follow OB’s orders of going to the hospital on Tuesday (Nov 25).

We arrived at the hospital…seeing other moms ready to deliver in the waiting room brought me to violent tears.  Walking into the room where I potentially would deliver brought on a panic attack almost immediately.  I couldn’t believe I was there and didn’t believe I would be strong enough to do it.  I leaned onto my DH crying and he just looked me straight in the eyes and said “You are strong…you can do this”.

The nurses confirmed Emilia’s heart stopped.  I don’t know if it was the cross I was wearing around my neck, but the nurse asked if I wanted to speak to the chaplain.  Yes!  Please!! Father P. came into the room and was brought up to speed on the circumstances.  I wanted to know it was okay to start labor and that I would have the blessing to move forward with the procedure.  He was so supportive and said he’d be around for anything and everything we needed.  I thank him so much for that.

I was induced.  The night went on without any progress.  I was given medication every 3 hours, poked, prodded, etc.  We barely slept.  By the next morning, my OB decided to do what was the most painful procedure of my life to attempt to dilate me.  I think DH was close to tackling her based on the screams he heard from me.  And, even with all that, nothing worked.  Even though this had failed, the doctor still advised me to get an epidural as anything could happen and it could happen quickly. I did and honestly it wasn’t too bad.

Hours passed.  As DH drifted off to sleep, and the nurses were just waiting it out, I had a lot of thinking time.  I tried to distract myself as much as possible as I didn’t want to “break”.  I lay there, closed my eyes trying to dig deep for strength.  The pain was one thing, but the waiting was a whole other story.  All of a sudden I felt this very strong presence…a voice, if you will.  “It is time…tell her it is time to go to God.”  I had to push past the fear and out loud told Emilia it was time.  That is when everything changed.

My next measurement was a 3.  A huge change!  And within just about an hour or so, I was at an 8, very close to delivery.  My doctor (who was supposed to have the day off, bless her heart) sat by my side and said the time would be soon.  With tears in my eyes and a look to my sweet husband for strength, he grabbed my hand and held on tight. The room was quiet and I asked DH to turn on hymns.  I have an “O Lord, Hear my Prayer” online station and we listened to that quietly.  The nurses and my OB were all praying.  I had a few final large contractions and pushed.  Emilia and the placenta came out at once and it was over.

DH and I weren’t sure if we wanted to see Emilia, but were open to it.  I closed my eyes and asked the doctor and nurses to let me know if anything was graphic.  They both agreed she was beautiful and brought her over to me wrapped up in a tiny pink blanket and pink hat. She was absolutely beautiful.  Her face was perfect.  I could see her little hands had signs of Trisomy 18 (clenched together) and the omphalocele was present.  I held her for a while and DH decided he would look at her and give her a kiss.  It was one of the best moments I’ve ever experienced in my life.

We asked the priest for a baptism – even though she was stillborn, he was fine with our request.  He also did a blessing and named her.  We had some beautiful moments and decided it was time to say goodbye.  We figured there was no other better time than the touching ceremony we had together.

From the outside, I’m sure most of you are thinking about how tragic all of this has been.  And, yes, of course it has been.  But somewhere deep, there really is beauty and DH and I are very much at peace.  This little girl taught us so much in her lifetime – more than most ever will.

1) Emilia taught us we can get pregnant on our own.  How amazing is that?!
2) Emilia saved me from getting surgery on my neck.  Would something have gone wrong?  We’ll never know.
3) Emilia taught me to listen to my instincts and to be brave.  I can never thank her enough.  I feel like I can do anything now!
4) Emilia strengthened my faith in God, even when some may turn away when times are difficult.

We have so much to be thankful for from her gifts.  We are incredibly humbled by the superb care we received from all of our health care providers leading up to pregnancy, throughout, and through the birth.  We are thankful to hundreds of people who held us all in prayer.  I am thankful for all the notes, texts, gifts, and space people have provided to us.  And I am especially thankful to my family and husband.  Though he is equally as sad as I am, DH has been my rock throughout the entire experience.  I have never felt this supported in my entire life.

We hope to get pregnant again, but know that miracles don’t always happen twice.  We will be as positive as we can and hope for the best.  If there’s anything to now pray about, please pray for us to be successful again with a healthy baby.

As a final note, “Emilia” means industrious/hard working and “Louise” means renowned warrior.  And that she certainly was, impacting us in ways we would have never known possible.  Emilia will forever be with us.  She is our little angel.  We miss her dearly but know she is in a much better place.

Thank you all for reading this and for your support.

Emilia Louise
Born November 26, 2014 (20 weeks)
4:44 PM
8.5 inches, 8.5 ounces

— Anonymous

Photo credit: adapted from  Infomastern | Flickr