My Story

Told by my mommy

On January 22, 2003 we went in for a routine level II ultrasound, I was 18 weeks pregnant.  We were so excited to see our little baby and hoped we would find out the sex.  We never expected the news we were about to receive.    The ultrasound technician was happy to inform us that we were having a girl, but after about an hour the technician told us she saw a few things that concerned her and was going to talk with the Perinatologist about her findings.  When the Perinatologist came in, she informed us of the finding on the ultrasound.  They saw she had an unusual shaped head (strawberry shaped) a flat facial profile, a two vessel umbilical cord, a ventricular septal defect (VSD) in her heart, clenched hands, abnormal foot posture, a left-side cleft lip, and she was measuring a little small.  We were told that these all are signs of a chromosome disorder called Trisomy 18.  Like most people, we had never heard of that.  We were told that this disorder is "incompatible with life", and most likely would not make it to delivery.  Our family was devastated.  They suggested that I have an amniocentesis, because we needed to know for sure we choose to go ahead with it.  On February 4, 2003 we got the call that confirmed she indeed had full Trisomy 18.  It wasn't a complete shock; deep down we already knew the results.  Now, we had to make the decision on whether to carry to term or terminate.  As difficult and scary that all this was, we felt it was not up to us to determine when our little girl was going to die.  So we will carry her as far as we can, and cherish every moment we have with her.

I had a few more ultrasounds done that showed some abnormalities in her brain, she has a horseshoe shaped kidney (kidney's never separated), and that her growth was starting to fall behind by almost 3 weeks.  I also had a fetal echocardiogram done to determine exactly what was wrong with her heart.  It confirmed the VSD, and also showed she had a coarctation of the aorta.

U/S @ 32 weeks

My pregnancy went well, at every doctor visit I would measure right where I should, and she always had a steady heartbeat.  She was always active and got the hiccups many times a day.  If we would have never had the Level II ultrasound, I don't think we would have known something was wrong until she was born.  We had prepared ourselves and our family to let her go when it was her time.  We decided to induce a few days early, and on June 12, 2003 @ 6:35 PM Nevaeh Faith Mrotz was born.  Her heart rate was very low (20bpm), and was not breathing.  Then all of a sudden she gasped for some air and let out a cry, and her heart rate went up to over 100bpm.  We were so thank full that she had made it and was ready to meet the rest of her family.  Knowing that she could leave us at any time, we had the hospital chaplain, surrounded by family and friends; baptize Nevaeh 2 hours after her birth.

Mommy, a  few weeks before I was born.

The cardiologist did an echo on Nevaeh the next morning.  The news was not good; he said that the coarctaion was so bad, that when her ductus artery closes she would not live long.   This ductus usually closes within 24-48 hours after birth.  After hearing this, we decided that she needed to be at home.  We left the hospital with Nevaeh when she was only 23 hours old, and she only needed oxygen to make her more comfortable when breathing.  The first night home was very rough, she had quite a few apnea spells, and we did not think she would make it through the night.  She had other plans, and decided to stay with us for a while longer!  At her one-week check we decided to get a NG feeding tube placed, because she was not eating enough, it only stayed in for 2 ½ weeks.  We have a lot of ups and downs with her apnea spells.  One day she will have 1-2 bad spells then she will not have another for a week or so.

A few minutes old

Nevaeh is such a little fighter; she has made so many wonderful memories, which we never thought would happen: *Celebrating Father's Day *Family's Birthday's *Walks outside *Dr. Appointments *The Fourth of July (slept through most of the fireworks) *Rolling from her back to her tummy *Many trips to the store *Taking bathes *Smiling *Midnight feedings *Moving out of Preemie diapers *Finding her fingers to suck on *Going to Grandma & Grandpa's house *Holding her head up *Getting lots of kisses from Auntie Beth's Puppies *Getting lots of hugs & kisses from everyone that loves her

A few hours old