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Challenge: NICU Parenting

Stella's Story

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Our daughter, Stella Rose, was born at 28 weeks gestation, weighing 1 pound 6 ounces. She was taken via C-section due to severe intrauterine growth restriction, and I was suffering from HELLP Syndrome. I was shocked when they took her from my womb, at how wonderful she looked. She was a bright pink/red color with her eyes wide open, meowing like a kitten. I knew the second that I saw her that she was going to be a strong surviver. She was intubated immediately, but she didn't need it. Within 4 hours post birth she was breathing room air. She didn't need oxygen support until day 3. She required high flow nasal cannula, CPAP and regular nasal cannula off and on during the next several weeks. But, she did very well considering her size. She had the newborn screen flag her as positive for a rare metabolic disorder called LCHADD. This disorder causes children to be unable to use the long chain fats found in breast milk and foods, for energy. This explained my HELLP syndrome during the pregnancy and her growth restriction, which caused the need for an early delivery. She was started on a specialty formula that her wonderful NICU nurses would measure out and mix with small amounts of my breast milk (Stella is allowed a small percentage of long chain fats for proper brain and organ development). The genetics team was always changing her "recipe" and the nurses would joke about being Stella's Chef since she had such special nutritional needs. The NICU team from Mercy Hospital in Baltimore, MD and genetics team from University of Maryland Medical Center in Baltimore we're phenomenal. We felt confident and safe in their care. Having a NICU baby is it's very own unique experience, and as difficult as some days were, most were filled with hope and promise. During our 75 day stay in the NICU we learned that these tiny babies have a will to survive that is bigger than our fears, and we experienced God's peace that does transcend all understanding and circumstances. We are grateful for our daughter and the testimony she holds. She is now 15 months and still only 12 pounds as her LCHAD has complicated her physical growth, however her fine and gross motor skills are right on track for a child of her age. I know that her LCHAD has and will continue to give us hurdles, but with the NICU experience in our pocket, we know we can get through the challenges ahead with strength and endurance.

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