At 29 weeks gestation I received the worst news ever (or so I thought – but more on that later.) My baby had Critical Aortic Stenosis, a tightening in the aortic valve that had completely shut down her left ventricle, causing Hypoplastic Left Heart Syndrome.
She was born on October 5, 2011, and the next day she had a balloon valvuloplasty to open up her aortic valve. We thought it was successful, but on October 13th everything changed overnight and we were told she needed immediate open heart surgery. At 9 days old she had the Norwood – the first of three staged surgeries for HLHS. It was a 6-hour surgery, but she did well through it. She had some major complications afterward and spent 6 weeks in the cardiac ICU before being transferred to the children’s surgical unit.
One of the complications, NEC (necrotizing enterocolitis), is a stomach infection, which, in her case, was caused by poor profusion to her gut. I have since learned that it is fairly common in heart babies to get it once. Each time it occurs, it takes 2 weeks in the hospital to treat it. Shiloh got it 6 times before January. It was brutal. Just when we were about to take her home, I’d dance in with a car seat and I would be told she had NEC again. It was quite the rollercoaster to say the least.
On January 14th she had her second repair, the Glenn, earlier than expected. It was decided that it was the only hope to stop the NEC. We dealt with plural effusions for 3 more months after the Glenn and finally took our baby home at the end of March 2012. We had one more stay in May for 2 weeks, totaling our hospital stay at 6 ½ months in Shiloh’s first year of life.
We have not been admitted since. She had a feeding tube for 9 ½ months and with diligent work between a therapist and me, she hasn’t had one since. She only needs oxygen now when she gets sick.
She crawls and cruises the furniture, has about 10 words she says, and claps her hands to “Patty Cake.” She is full of sunshine – the happiest baby I have ever seen. She lights up my world. Her big sister loves her, and my heart leaps to see them play together.
Through this journey I have had the joy of meeting hundreds of other heart moms. Wonderful women who also care for the miracles in their lives, as well as the angel moms who have had to say goodbye a little early. I have been able to help new heart moms on their journey. I have witnessed miracles, I have seen my baby’s left ventricle pump on an echo – something that many doctors never thought would happen.
I am lucky. We are so lucky to be a heart family. I don’t know where this journey will take us, but I am looking forward to every step along the way, even the ones that bring tears. Because the “worst news ever” has become my greatest joy in life.
I am a Heart Mom
And if you want a mental image for how I felt about this
Then picture a 3 year old tantrum
(a bad one)
Complete with stamping of feet and the ugly cry.
I just wanted a normal baby
With no tubes
And no oxygen
And no surgeries
And no beeping machines
I wanted to take my baby home in 2 days
And dress her
And lug her around to department stores in her car seat
I wanted to use her car seat.
But instead, here we are
Stuck in a hospital room
Most are afraid to visit – it is awkward and sad.
And then in parade the Heart Moms
Strangers with babies like mine
Even babies who have finished their battle and are in Heaven
You can see it in their eyes -
And they bring chocolate
And Tears and Laughter
But mainly they bring empathy.
And so they hold my hand and lift me up
When I cannot stand
And together we walk this journey.
I am a Heart Mom
I know things one just should not know
I know what it’s like to hear the words Palliative Care
and Heart Failure
I know that it takes 3 days for my baby’s hunger pains
to go away
I know what Necrotizing Enterocolitis is and other
fun medical terms
I know that it is 29 centimeters from her nostril
to the top of her stomach
I know how to put a tube that long
down my baby’s nose, and miss her lung
I know that chest tube juice is impossible to get out
of baby clothes
I know the cry of another Heart Mom losing her child
I know what a running group of doctors means
I know what it’s like to watch a machine
that has your baby’s future written all over it
I know what it’s like to wake in panic at beeping alarms
I know what it’s like to feel like your baby
belongs to the hospital.
But I also know what it’s like
to leap with joy at my baby drinking half a teaspoon
to come out of a 6 hour surgery with good news
to defy the odds
to lift up another Heart Mom in tears
to be surrounded by Warrior Moms
to release a balloon in memory of an Angel
to survive a war
to be in the presence of a Miracle.
So today I am a Heart Mom
And I wouldn’t want to be anything else.
Story Lines is a feature on Play Ground telling personal stories and experiences – written by the individual. If you would like to share your hospital experience on this blog, please contact us.