Heart Warrior ~ Guest Post by Shalimar Niles

You know when you meet someone and they radiate calm kindness and patience? The kind that actually calms your own heart just from being in their presence?

Meet our new friend Shalimar. She is one of Kate’s Girl Scout troop leaders and I was amazed by her before I heard the story she’s about to tell. We invited her here because this woman’s life is full of grace–grace given by God and then distributed outward in total love. She knows that God is not here to test us, but to see us through.

She was born on a Friday morning. 10 fingers, 10 toes, and a head full of hair. Her daddy followed her to the nursery, and I went to recovery and waited for someone to bring my baby in to me. No one came. For more than an hour I waited, when finally, my husband came in, empty-handed, to tell me.

Our daughter was 1 in 100. That’s the likelihood of having a baby born with a congenital heart defect, or CHD. The ultrasounds showed us a healthy baby girl, but she was born with a severe CHD called Pulmonary Atresia. We had no indication that anything was wrong, and yet, our newborn daughter was now in a race against time to fix her heart before she started running out of oxygenated blood.

Emma at one day old

Shalimar with Emma at two days old

Hours after she was born, she was transferred to a hospital that could give her the care she needed. My husband went with her, and so it happened, hours after giving birth, I was alone in my hospital room, in shock and recovering from a c-section.

I held her for the first time when she was two days old. At four days old we walked her to the operating room doors for her first catheter procedure, which was unsuccessful. At one week old, her due date, which also happened to be our wedding anniversary, she had another procedure, also ultimately unsuccessful. From that point on, she was intubated and sedated, her right leg was purple and had almost no pulse because of damage to the artery during her procedures. We were broken-hearted for our girl, anxious to get her well and terrified of how bleak things looked for her at the moment.

Prayers and support came pouring in from friends and strangers alike. Her story was shared and thousands of people were praying for her around the world. I, however, was not one of my daughter’s prayer warriors. I told a friend that I felt like a hypocrite for allowing, and even encouraging others to pray for her when I could barely speak to God. “This is the time to let us lift you up,” she said.

We call June 7th our daughter’s Happy Heart Day, because that’s the day that things started improving for her. She had open heart surgery, which was terrifying, but we had the hope that things would be better on the other side. The texts, phone calls, and Facebook messages were incredible, and did give us strength through those awful hours. All those people kept me close to God when I couldn’t do it myself, and they all have been able to witness the miracle that is our daughter.

Emma after her surgery

Emma after her surgery

She came home just a week after her surgery. On medications, and 24 hour oxygen, but she was home. And the medical miracles kept coming. Just a couple weeks after surgery, I started nursing her (which for being on a feeding tube for most of her life was amazing) and she began to thrive. She gained weight, she went on to oxygen just for sleeping and by the time she was three months old she was off all meds and supplemental oxygen. At 10 months old, she had a hole between the chambers of her heart closed, which improved her health even more. By looking at her, you would never know the challenges she has had to face in her young life.

I think the real miracles have been the intangibles. After being sedated and lacking oxygen her first month of life, she opened her eyes for the first time after her surgery and she was there. In the sense that I knew our worries about any brain damage were answered. She was delayed in rolling, crawling, and walking, and you could see the determination and grit in her face as she struggled in physical therapy to meet those goals. She is quite simply, a force of nature. Our daily reminder that miracles do happen, that God is with us even through the storm, and that hope we have in Him is real.

I live in a constant state of gratitude. I quite literally thank God daily that He saw fit to let us keep that sweet baby girl, who just turned two years old. A CHD is never truly cured, she does have more surgeries and challenges to face, and that is not what I dreamed of for my child. But as she healed, so did we, and I am certain that our strong family foundation, built of love and strength and faith will carry us through whatever may come.

Emma turns 2!

Emma turns 2!

 

 Tomorrow, Emma’s family and friends will wear pink to celebrate the anniversary of her surgery.

Happy Heart Day to Emma from all of us at Full of Graces!

 

5 thoughts on “Heart Warrior ~ Guest Post by Shalimar Niles

  1. As a soon to be mother (again) this story had me so emotional! I cannot thank you enough for this story, Shalimar .I will be thinking about you tomorrow as your family so appropriately celebrates the very important anniversary.

  2. This little girl and her precious family has shown us all how to stand in the middle of a trial and put all our faith in God. It was hard to even take a breath, yet this mother was up all night pumping for her precious child. Emma is a true warrior and I am so very privileged to have her in my heart. I look forward to watching her grow up and continue to inspire all those around her. Fantastic, honest and brave writing Shalimar. I’m honored to be your friend. Love, Keri

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