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Challenge: NICU Parenting

Life after N.I.C.U: Effects of Prematurity After Coming Home

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You are a first time young mother patiently waiting for your twins to arrive, but what if that arrival comes 15 weeks too early? How do you prepare yourself mentally and physically? Everything you have dreamed about for the day that you give birth is turned upside down. You have doctor's giving you statistics and nurses giving you hope that your 25 week 1lb twins will pull through!

Far too often, families go through the emotions of delivering premature infants especially when it is unexpected. In fact prematurity has played a major part in my family's life even after leaving the neonatal intensive care unit. Here is the inside scoop on how prematurity has played a big role in parenting twin four year old boys. Our life has changed drastically walking through those doors of the nicu in 2013.Our twins came 15 weeks early 1lb 12 oz and now four years later we still face the effects of prematurity.

Noah and Nathan came into this world fighting for every breath. Both boys spent six months in the neonatal intensive care unit. They faced many obstacles and needed multiple life saving interventions. It wasn't just one baby fighting, we had two fighting, learning to breath, maintaining body temperature and of course learning to feed. See Nathan and Noah we're micro preemies. They faced many blood transfusions and surgeries at two pounds and were vented for about three months. Looking back now, I wouldn't wish that experience on my worst enemy. Bradys, apnea, lazer eye, heart procedures ,nitric oxide, nasal cannulas, hernia repairs, collapsed lungs and the list keeps going playing in my head like it just happened over and over again. As a parent, I witnessed my babies fight for every breath to be able to graduate the nicu life, but life as we knew it didn't go back to our "normal" after leaving the nicu. "normal" became welcoming my babies home after a six month hospital stay. Our twins were far from healthy at six months old and as a parent's of two fragile infants we grew to depend on our twins nurses in the nicu. Now, it was our turn to put everything we learned from the nicu life into use at home. You see Nathan and Noah we're diagnosed with many multiple conditions and most of those conditions followed the twins out of the nicu. Chronic lung disease,poor weight gain, paralyzed vocal chords, just to name a slight few. Prematurity reared its ugly hand in those diagnosis and we as well as our twins had to adapt to life around those needs.

The first three years of our twins lives were specialist appointments, dozen of emergency room trips and hospital stays, early intervention, and speech and physical delays. Informing family that didn't understand and educating the ignorant. Prematurity just didn't end after the nicu. As parents we adapted, and accepted that what our life was before parenting two medically fragile boys didn't exist anymore. We have become content that prematurity plays a big part of our family life and adventures. I had some one come up to me before and flat out tell me that enough is enough with how I portray my twins needs and how I cannot use the word "prematurity" with the twins now in 2017. Both boys are as "healthy"as Nathan and Noah can be as four year olds and prematurity wasn't relavant no more. The comment drew me back a little bit. I felt as if it was disrespectful and ignorant because, Nathan and Noah do not live a typical life nor do we as parents. Every battle Nathan and Noah have faced and still face is because of prematurity. Through my eyes prematurity has shaped us to be grateful for what you have. To love your healthy babies and appreciate every small milestone. Nathan and Noah will be turning the big 5 this coming new year and they are just a small glimpse into what it means to fight and keep moving. To be able to understand inclusion and to educate and bring advocacy into what the nicu life is all about even after you walk out of those nicu doors.




















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