H–is for HIE

     In a few months our first granddaughter will reach her second birthday, which will be a great day of celebration, as was her first birthday.  Her actual day of birth, those many months ago, was a time that should also have been full of smiles and joy, but instead filled with worries and questions.  She had HIE–hypoxic ischemic encephalopathy. Hypoxic–lack of oxygen. Ischemic–restricting blood flow. Encephalopathy–affecting the brain. Simply put–oxygen deprivation that affects the brain at birth.

    The medical staff took immediate action, but it still took hours to stabilize, make preparations, and transport her to the NICU in the larger city. They couldn’t use the life-flight helicopter because of there being such bad thunderstorms going on that night. Instead she was taken by ambulance, with one of the first actions taken being to cool her body, which slowed blood flow to prevent further brain damage. It was a month later that she was able to go home. Her parents quickly learned and gave the day by day care needed, one of the biggest of which was getting used to feeding her via a gastronomy tube. They were fast learners, and Samantha thrives physically. In the next photo you can see her "button" for feeding.

Samantha with her beloved Grampa

     One of the HIE effects was that she was never able to cry. One doesn't usually think of a crying baby as a blessing, but it truly is. How thrilled we were when Samantha first started making some vocalizations!

Samantha having a meal via tube with the help of the orange feeding pump.

     Because of a “default mode” of mostly keeping her head turned to the left (which she still does), her head was getting flat on that side.  So, until her skull fused, she had several months of wearing a helmet, which did its reshaping job.

Helmet "graduation day"

     Samantha has a variety of specialists and therapists who help with different developmental aspects. Even though she has always received her main nutrition through a gastronomy tube, she is also undergoing therapy to strengthen her face and mouth muscles to be able to eat by mouth. A wonderful by-product is that those same stronger muscles help her be able to vocalize more, and to smile. It’s such a blessing to see her eyes light up during an interaction; and now to see an occasional added smile just makes my heart rejoice!

     One always expects and hopes the best with a new baby. And you know, that’s just what the family got with Samantha. No, she isn’t developing at a “normal” rate, but she is making progress and developing at her own normal rate, just as God knew she would.  She reminds us all not to take anything for granted, and is such a sweet joy!

The biggest smile I've seen–looking forward to many more!

     (If you want to know more about HIE, you can read here. Our friend Kacy writes about her own daughter here and here. Of course each child affected by HIE has different diagnoses, but some of Hudsyn’s–the GERD, the gastronomy tube–are similar to those of Samantha.)