In the beginning…….

To know me is to know my story.  To know the part of my life that forced me to grow up.  Forced me to understand what is important.  Forced me to stand up and protect my child and rely only on myself (and my husband) when it comes to her care. 

I was 33 weeks pregnant and deathly ill.  I couldn’t eat without puking, was working full-time, had horrible, sharp back pain that never ceased even when resting, was dead tired and had only gained 20 pounds in my pregnancy.  I was so done with being pregnant.  So when my water broke, I was actually relieved.  I was young and dumb and didn’t realize all the complications that come with a preemie.  But I was about to learn.

After 29 hours of labor, at 4lbs, 3oz, Marley came into this world screaming (thankfully) and no oxygen was needed.  But a bout of apnea forced the NICU to order a head ultrasound.  Just protocol for a preemie with apnea they said.  One week after delivery, they told me they are going to order another head ultrasound.  But again, young and dumb, I didn’t catch on.  So when Marley was two weeks old, the results were in.

Marley was a permanent fixture in the special infant care nursery and the nurses were doting on her as if she was their own.  I had just finished nursing Marley for only the second time in her life.  She was just starting to eat on her own with no feeding tube and I had a sense of peace that only oxytocin can bring.  All the bright florescent lights and beeping heart monitors could not dampen my euphoria.  She was mine.  She was beautiful.  And she was finally nursing.  

I was basking in that euphoria, rocking Marley in an old wooden rocking chair in the nursery when a middle-aged Asian female doctor came over and introduced herself to me as the pediatric neurologist on duty.  She sat down across from me and asked me abruptly “Where is your husband?”  I told her he was at work and she proceeded to tell me that she wished he were here.  She pulled up a seat across from Marley and I and began talking.

I only heard the beginning.  She began “We have had seven radiologists at Duke look at these head ultrasound findings because we simply cannot believe that she is doing as well as she is with this amount of damage to her brain.  Marley had a Grade 4 IVH, Intraventicular Brain Hemorrhage.  That means the bleed has gone into two quadrants of her brain.  Here is some paperwork……”  I didn’t hear anymore.  My ears were ringing and I could hear the blood pounding in them.  I had a fear I would drop my baby but I didn’t want to let go of her.  How could this be?  Everything has been fine.  What does this mean?  Is she going to die? My mind was racing.  I was clearly shaking.  The tears were starting to well up and a sweet young nurse came over to the rescue.  She could see that I wasn’t listening anymore.  She gently took the baby from me.  I think she thought I was going to drop her.  I stood up and said “I need to call my husband.” 

When I got into the hall, I doubled over.  I felt like I couldn’t breathe.   I called my husband at work and told him I needed him to meet me at home immediately.  He was further away but there when I arrived.  I sat down next to him and said ”I hope this is the hardest thing I will ever have to tell you……..”

Oh my husband.  That man is a rock.  He is my gift from God.  I really don’t remember what he said, but he put me at ease immediately and then had tons of questions.  I handed him the papers that the doctor gave me and he said “We have to go see her.”  Visiting hours were over because it was late by now, but I called and they said to come.  We drove back to the hospital in the dark.  I was weeping. 

Chris and I sat with our new two-week-old daughter for a long time.  She looked so precious and peaceful but now I was so scared I could barely comprehend what was happening.  That moment changed me forever.  I knew right then I would fight for her.  It was a powerful feeling of fierce protectiveness that I felt.  I still feel it to this day. 

However, I didn’t want anyone to know.  I didn’t want their pity.  After all, we didn’t know how it was going to affect her, right?  Why worry people?  This went on for about two weeks until my husband couldn’t keep it a secret anymore and starting telling his family.  I was horrified.  I didn’t want people telling me they were sorry.  “Don’t be sorry! She is my baby!  She is going to be fine!  I will make sure of it!” 

There are things in this life we cannot control and this control freak was learning that lesson the hard way.  She stayed in the hospital another two weeks and they discharged her on Thanksgiving.  The best blessing of all. 

But just before they let her go, they asked if I wanted her to get the Hep B shot now or at the pediatrican’s office in a few days.  I asked “what is it?” They told me it is a required shot.  And this mama who had just said she would protect her (now 5 lb.) baby said “sure, go ahead”. 

And so the story goes……..