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Willow Rose

Willow Rose{as written by Willow’s mother} Willow Rose was diagnosed with transposition of the great arteries(TGA) in utero at 20 weeks. With her strong kicks and punches we just knew she was a fighter before we even met her. The first few days after learning about her heart defect our world was shattered but we soon put our energy into putting into place the best possible plan we could for our baby.

I was induced at 39 weeks and the fear of the unknown was paralyzing. When the nurse told me I was ready to push I cried with both excitement and fear, I could not wait to meet my little girl, but I knew as long as she was still inside me, she would be safe and her heart defect could not harm her. Because there was no Ventricular Septal Defect (VSD), a second condition TGA babies are often born with that helps the babies receive oxygen at birth, Willow was born with little to no oxygen and had to have an immediate procedure done after just 30 minutes of life. She responded wonderfully to the procedure and again we knew she was a fighter. Although once seeing her on a respirator and hooked up to tubes and wires it was hard to imagine that life would ever be “normal”, it wasn’t as scary as I anticipated. At first, I wasn’t sure what to do, but when I looked at her, behind all of that “stuff”, I still really just saw my little girl. So I talked to her and sang to her and held her hand, just as you would with any newborn. And we fell even more in love with her each time we saw her just as we did with our first.

At 5 days old Willow had open heart surgery to repair her heart. After a couple of days of uncertainty Willow began amazing the doctors and NICU staff with her strength. One by one she began losing IV lines, wires, her chest tube and began eating “like a hog” as one of the nurses put it. By day 11 and just six days after surgery, and countless visits to the NICU, our baby, and heart warrior was ready to come home. Once home I threw away all of the “rules”, the “shoulds” and “musts” that you so often hear from others and read in books. I let my house get messy, I ran to her when she cried, I held her all day long, rocked her to sleep and embraced her nighttime wakings. I enjoyed every moment of her being home because we now knew that being able to bring your baby home when you’re ready to leave the hospital and hold her and feed her, wake up to her cries with her by your side and even change her diaper is something we had taken for granted with our first. She taught me to slow down and remember what being a mother is all about. Today she is a sweet and smiley 10 week old girl who still holds that strong and ambitious personality and continues to inspire everyone around her and I know she will for years to come.