oops

When I heard the term Trisomy 18, I immediately began researching.  I found a lot of information - sadly not much of it gave me hope for the quality of life for my sweet Willa.  To learn more, follow this link Trisomy 18 Facts .  I was desperate to get her home, and prayed she would be able to make it through NICU.  It wouldn't be for her.  Ultimately she got an infection that required a blood transfusion and an extensive anti-biotic treatment before we could even begin to address her individual issues with Edward's Syndrome. Social media offered a look into the lives of other children with the condition who were still alive and struggling with issues.  Some common, some completely random.  I wanted to know exactly how that third 18th chromosome had affected her little body as outwardly there were no obvious markers that she was sick.  We had even been referred to Primary Children's for a fetal echo cardiogram and were given a clean bill of health...

I love this song by Gungor - This Is Not The End: http://youtu.be/t5Cjt83wWDk This is not the end This is not the end of this We will open our eyes wide, wider This is not our last This is not our last breath We will open our mouths wide, wider And you know you’ll be alright Oh and you know you’ll be alright This is not the end This is not the end of us We will shine like the stars bright, brighter It makes me think of you baby girl. It makes me think of the morning of your last day on Earth.  Three months ago today.   Scrubbing off our "germs" to come see you felt foolish.   Nothing I could do could make you sicker, nothing I could do would heal you.   As we approached your incubator, I expected to see you look at me as always - with your eyes meeting mine, assuring me that you knew who we were, followed by your gaze upward, looking for your daddy's strong hand on your head.  Instead. you looked at me like your big brother does when he doesn't feel go...

Once the pain had become manageable, we were assigned a room in the Women & Newborn wing.  It was a weird feeling to be headed there without my newborn to recover.  She stayed in NICU for what we thought was going to be a long stay until she could come home with us.  The nurses offered me the chance to see her on my way there.  I happily agreed and met my daughter for the first time through the Plexiglas of an incubator.    She was even more precious than I anticipated,  and looking into her eyes for the first time I was completely and hopelessly in love - captivated by the opportunity to meet this little human that had been growing inside of me.  I had been envisioning what and who she would look like, and so I began studying every feature of her that I could see.  She had my webbed toes, but she was mostly her Daddy.  Yes, from her full head of dark hair and perfect nose down to her precious feet, she was definitely her Daddy's lit...

After being told that we would be having an emergency c-section that afternoon, we were scurried off to the same room where we met with the geneticist.  I remembered the conversation at 12 weeks upon finding her hygroma.  They asked if we wanted to continue with the pregnancy and conduct more decisive testing.  We opted for neither, wanting to give Willa her best chance at life.  The hygroma had resolved by 22 weeks, she was given a clean heart scan at Primary Children's, and we had no indication in that moment that the complications we were facing were a result of Trisomy 18.  The pregnancy hadn't been easy (as was promised to me in a blessing) but the Lord had been there. to guide and comfort. We began to accept this new mountain path and prepared ourselves for a preemie baby. "I need a blessing right now," I said to Phillip as we sat there together with his arms around me trying to calm my sobbing.  He promptly pulled out a chair and began to tell me to ...

October 15 2014.  Ironically (unbeknownst to me) National Infant Loss Awareness Day.  When I woke up that Wednesday, I  knew something important was going to happen. I hadn't slept well for a couple of nights, and the morning felt very heavy.  It was cold and raining as we headed up to McKay-Dee for a 9:40 appointment with Maternal Fetal Medicine.  We had been seeing them weekly since Willa had started lagging in growth, measuring just 2.26 pounds at 30 weeks.  She had slipped from the 15th percentile for growth down to the 8th, and the planned steroid injections to help her lungs mature stopped due to an allergic reaction in me.  I had already been to the hospital once for bleeding after lifting laundry, and was nervously counting every kick and movement each and every day.  The placenta had started tearing, and our goal was just to keep her safely inside as long as possible and aim for 37 weeks gestation.  Our hope was that in the three wee...