Love: 400 Extra-Ordinary Days

At this time, three years ago, I was pregnant.  Expecting our fourth child.  We were thrilled to be having another baby.  We love babies, at our house.

During the twentieth week of pregnancy, my husband went with me to the obstetrician’s office.  It was ultrasound day.  My husband was supposed to be on a business trip, but it was cancelled early that morning.  That was our first miracle.

The ultrasound showed that we were going to have a baby girl.

The doctor came in.  We smiled at her, and she didn’t smile back.  Instead, she began to gently explain to us all the problems that our sweet baby’s developing body already had.  It was a long list.  Two vessel umbilical cord.  Hydrocephalus.  Hypo-plastic left heart syndrome.  A possible fatal chromosome abnormality.
My husband gripped my hand.  We tried to ask questions.  We cried.  We already had one child with a heart defect–we had already experienced long days in the hospital and an uncertain future for one baby.  We had been confident that this baby–our last–was to be our miracle baby.  
We named our baby Lily, for the lilies of the field that Christ used so eloquently to teach his followers of our Father’s love for His children.
We prayed.  We tried to make difficult decisions without the aid of concrete evidence and information.  We moved forward in faith, sometimes not sure if faith was enough.
Our Lily was born alive, another miracle.  She was tiny and perfect, without the facial deformities or extra fingers or toes or enlarged head that we had been prepared to love along with her.

I was able to see her, pink and soft and wiggly, before she was taken to the NICU.  In the NICU, she grew, her little body preparing for the first of three surgeries her heart needed to function.

For three weeks, we loved and fed and held our baby in the NICU, not knowing if her sweet, tiny body would be able to handle the complex surgery.  

It did.  Lily spent many days in the hospital.  What would be unusual for some families became the norm for us.  Picnics on the floor of a hospital room.  Walks through the halls with IV pump and monitor in tow.  Saying goodbye to one child so I could go home to do laundry for three others.
Things that others might take for granted, we celebrated.  Like Lily’s first trip outside.  Wires, and tubes, and all.

Two months after her birth, we brought Lily home.  Another miracle.  One we hadn’t dared to hope for.
The following days were not ever easy.  Caring for Lily at home, as joyful as it was, was also complex and exhausting.  She had frequent trips to doctors’ offices, more surgery and more procedures, more hospital stays.  I learned to insert a feeding tube and carry a baby in a carseat, a preschooler, and an oxygen tank across a snowy parking lot and through the grocery store.  
We were so grateful for the people who stepped in to help us.  Family, friends, neighbors, doctors, nurses, therapists, strangers…all of them became part of the fabric of each miracle.
Lily’s siblings could have been envious or resentful of all the time that it took their parents to care for their youngest sister.  But they weren’t.  Their unconditional, unwavering love for Lily was nothing short of miraculous.  And they way she returned our love so enthusiastically was yet another miracle.
 

We had been told, when our doctors first diagnosed Lily’s condition, that we should be prepared that our baby girl might not survive the pregnancy.  There were so many unknowns, so many steps into the dark. I realized, as my baby grew and kicked inside me, that each day she was with us was a miracle.  
There may be some skeptics in the world that say miracles have ceased. 
They have not.  I’ve seen 400.
Lily lived for 400 days.  
Many of those days were difficult, for her more than anyone.  
Many of those days were spent in a hospital.  But many of them weren’t.  Despite the 200+ days Lily spent with her friends at the hospital, she managed to be at home for Halloween, Thanksgiving, Christmas, New Year’s Eve, St. Patrick’s Day, Easter, Memorial Day, and the Fourth of July.  She was at home for the birthdays of each of her family members.  She went on a family vacation.  She spent Valentine’s Day and her own first birthday at–appropriately–the Heart Center.

More days have passed, now, since Lily returned to her Heavenly Father, than the 400 she spent on the earth.  Some days have been really hard.  We miss having Lily in our home and in our arms.  But we are convinced that we will be with Lily again one day, and we’ve learned that joy can still be present in our lives.  
I’m so grateful for each of the 400 extra-ordinary days that we spent with Lily.  
I’m also grateful for each day since.  Ordinary days that become extra-ordinary when I look at how far we’ve come, how far we have to go; how much joy we’ve tasted, and all the joy we have yet to taste; how much love we’ve felt and how much love we have yet to give.
This week is Congenital Heart Defect (CHD) Awareness Week.
This post has been linked to Tuesdays Unwrapped at Chatting with the Sky.

Comments

  1. Ruth.

    Thank you for sharing the miracle of your daughter's life. More, thank you for recognizing it as a miracle and encouraging my small faith to grow even by the end of your post. Your words are powerful; your faith even more so

  2. Thank you for sharing your 400 days with us. The photos truly touched me and I have seen so many and have read so many stories of these precious kiddos….living it as well. But I truly don't know what it is like to lose a child nor the spiritual journey I am sure it has sent you on.
    You have an amazing faith! Thank you for sharing that with us as well!

    Stef, Ryan, Wyatt and Logan
    http://www.whenlifehandsyouabrokenheart.blogspot.com

  3. what a beautiful story and beautiful angel you were able to have in your home for such a short time. you will be with her again.

  4. The Chidesters says:

    Oh Ruth…she is so beautiful! I'm blotting my eyes after reading that post. You and Ben are amazingly strong. I can't imagine the emotions you've gone through and I appreciate your willingness to share Lilly's story. What a precious gift…both Lilly and her legacy.

  5. Hi!
    I came across your blog today. Your post about Lily was beautiful and heartbreaking. I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.
    I think blogs are a great way to get the word about about CHD’s and I commend you for what you’re doing.
    My wife and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are handmade and pertain to Heart Defects and the Heart Community in general.
    Please check out our site when you get a moment. If you could help us get the word out about our new business we would be very grateful. It’s a project that’s very dear to our hearts.
    http://www.lucky10.etsy.com
    Thanks so much and we look forward to reading more on your blog!
    Thanks,
    Vito Lisa

    P.S. If you want to keep up with Cassidy’s journey here is her Carepage info:
    http://www.carepages.com , Page name: cassidylisa

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  1. […] I am the mother of two little girls born with congenital heart defects, known here as Superkid and Lily.  I’m also an avid Pinterest pinner–I love collecting ideas and inspiration via […]

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