The Six-Year Mark

As we prepare thankful hearts to celebrate Camdyn's first successful surgery tomorrow (the six-year anniversary of her Norwood), four days after being born, I hear of another mom whose HLHS baby didn't make it past day one.  I don't know this heart mom, and I haven't met in person the heart mom who shared this, but just being heart moms, there's an instant, automatic connection.  My heart aches for her and the loss of her sweet baby girl.  And in the back of my mind, I know that it could've been mine.

Nothing anyone can say would ease her heartache.  So much time spent anticipating the arrival of a sweet baby, expecting it to be healthy, being a good "pregnant mommy" and steering clear of all things that could change that.  Wondering whether it would be a boy or a girl, and then planning a beautiful little nursery where that baby would cuddle under a blanket, up on your shoulder, be towel-dried after baths, listen to bedtime stories, the sound of her mother's voice singing softly to her.  Where time getting to know one another would be spent in those first weeks, round the clock...tired mommy, sleepy baby.  Anticipating the connection, listening for her first coos and giggles, giving raspberries to her perfect, unscarred little belly, dressing her in her new clothes and tiny headbands.  Wondering what her first words will be...what the color of her eyes will be...if she will look more like you or her daddy. Painstakingly and prayerfully selecting the name that would be just right for her.

And then finding out that she would be born with a heart defect.  A life-threatening defect.  One to require multiple surgeries and procedures.  And in an instant, all your energy and thoughts go to praying and hoping that the surgeries are successful and your baby can live a somewhat normal and healthy life.  You no longer care or think about the outfit she will wear home from the hospital...because you don't know when that will be.  Your only prayer is that you get to take a semi-healthy baby home.  Your mind is haunted with the "what if's" and the "I hopes" and the "Dear God, please."  And all you can do is bide your time, trusting in God's faithful Word, kept promises, and sovereign plan...enjoy your time with her even though she's not yet born...stay strong for her and try not to let it ruin your entire pregnancy experience.

Photo Courtesy of I See Beauty Photography

I remember the day we found out.  The first time we would be speaking with her cardiologist.  It wouldn't be our last.  I remember what I was wearing, I remember driving to pick up my car from work in silence, sending Phillip in to tell them I would be home from work for a few days because I was unable to form words with the lump that was in my throat.  I remember needing to read the brochures that they sent home with us.  Changing doctors.  Changing hospitals.  Planning and scheduling induction.  Wondering if something I had done had caused this, even though they said it was a random, rare defect.

And then, there we were, finally having her at the hospital, eager to meet her face-to-face for the first time.  She looked like a beautiful rosebud, pink cheeks, pink lips, olive complexion, perfectly smooth chest and belly.  And then, as quickly as you can snap your fingers, she was off to Children's Hospital to get settled in the NICU, a baby with lines and monitors, in this tiny bubble (where she would look like a moose at her 6 lbs, 7 oz frame, compared to the dear, tiny premies growing strong before finally going home).

Holding our Sweet Pea for the first time!

On my 26th birthday, Camdyn was a mere 2 1/2 days old and awaiting her first surgery.  I wanted nothing but to be by her side or have her in my arms.  All I wanted for my birthday was to be with my little girl.  And I wanted to get her first surgery behind us so we could take her home and enjoy being a family of three (a blessing denied to many parents, not just heart parents).  We held her very early in the morning on surgery day, up until they had to take her to the OR.  And then we waited.  Oh, how we waited.  The clock's ticking was in the slowest of slow motions. I had to refuse any thoughts of what the current picture in the OR might have looked like...forcing myself to breathe, periodically.  And then finally, after somewhere around 11 or 12 hours, the final OR update came, in the hallway, with her surgeon.  And we could see her soon.

In the hallway, we could see her little head peeking out from all the covers on an adult-sized bed.  In her PICU room, we saw more wires, tubes, and monitors than baby skin.  You simply cannot prepare yourself for it.  But you take deep breaths and talk to her nurses and doctors in order to gain knowledge and keep informed of all things related to her recovery because you don't want to miss a beat.  The two-and-a-half weeks spent in the hospital are so much of a blur now.  We were nervous to hold her for fear that we might hurt her or mess something up.  We prayed that she would learn to eat while still at the hospital, only to bring her home with an NG tube that she would pull out three times, requiring us to reinsert to a screaming baby while using a stethoscope to listen to her belly so we could make sure it was in the right spot.  We certainly took the learning process in baby steps.  We learned what we needed to, when we needed to learn it.

Mid-recovery, off oxygen, without chest tubes

And we haven't stopped counting our blessings with her since.  Our hearts are constantly grateful for His unmerited favor, His sufficiency, His plans.  We don't know why we were chosen to be heart parents, or why our baby girl is one of the ones blessed with six beautiful years of life under her belt.  We don't know why her health situation has always been the "HLHS ideal."  We may never know.  But we are grateful beyond what words could ever properly express.  Our hearts are full...overflowing...spilling forth with abundant gratefulness.  We will celebrate and praise God every chance we get.

Giving her a kiss mid-recovery

And we will pray for those parents who were denied this opportunity.  Our hearts ache heavily for them.

We hope to encourage other parents in our shoes...to support, to answer questions freely and honestly...and to listen.

Sleeping on her rocking chair for pictures

Happy Norwood-iversary tomorrow, Camdyn.  We want you to know how special you are, little love.  And how encouraging your strength, bravery, and perseverance are to us.

Enjoying a fun family fall day

Friends, squeeze your littles tight.  Be grateful when they scream and cry, run and jump, and spin tornadoes of toys around you.  Be joyful because you get to parent your children...no matter how difficult it is, because there are some who would give anything for that chance.