medically complex child – Empowering NICU Parents

Life After NICU With a Medically Complex Child: What is the Reality? Part II

by empoweringnicuparents

Introduction If you are getting ready to bring your baby …

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Good morning! Grateful for a beautiful day!

Good morning! Grateful for a beautiful day!

Today, on World Prematurity Day, we recognize the

Today, on World Prematurity Day, we recognize the resilience of preterm infants and their families and bring awareness to the challenges they face—not just in the NICU but for years to come.

Each year, 1 in 10 babies worldwide are born too soon.

Let’s stand together in support and hope for every baby born too soon. 💜

#WorldPrematurityDay #SupportPreemies #prematurityawarenessmonth #prematurityawareness #preemiemom #preemiepower #preemiesrock #preemiestrong #micropreemiemama #micropreemie #micropreemiemom #preemieparents #preemiebaby

Meet Thursday’s 30 weeker! Forrest was born on

Meet Thursday’s 30 weeker!

Forrest was born on May 8th, 2023 at 30 weeks’ gestation. He weighed 2lbs. 2oz

He had quite the battle and fought like a true hero. He was born with an imperforate anus and hypospadias. On his second day of life, he underwent a crucial surgery to address the imperforate anus, which led to a colostomy of the larger intestine.

Despite the early hardships, Forrest showed remarkable resilience and progress, bringing hope to everyone around him. He became very ill when he was a month and a half old. He underwent an emergent exploratory laparotomy on July 20th. Unfortunately, they discovered a malrotation of his small intestines. In a courageous display of strength, Forrest survived the intricate surgery, but not without a toll. The medical team had to remove 44cm of his small intestine, leaving him with a temporary jejunostomy.

Unfortunately, during his reanastomosis, they found 15cm of his small intestine that was necrotic. The surgeons removed it which only left him with 30cm of small intestines total. Forrest had a G-tube and broviac central line placed to get nutrients from TPN and lipids. He has “short gut syndrome” and works everyday to build up his tolerance of food.

So far he has had six major surgeries and he faces another four daunting operations to create an anus and revise the hypospadias. Forrest has had a long and arduous journey. His Mama @mcanelo1028 said that they are so thankful to have him as their some and to have him home. They are in utter awe of his strength and determination to live.

He is the most joyful little boy who lights up every room he is in.

His Mama said that she hopes his story inspires other NICU parents. “The days are long but there is light at the end of the tunnel and you are never alone. I pray for all the families and babies that are in the NICU and hope they all get better and get to come home soon.” - Madison Canelo

#nicuparents #nicubaby #nicugrad #shortgut #hypospadias #nicustrong #preemiestrong #preemiepower #preemieparents #preemiepride #30weeker #prematurityawarenessmonth #preemiebaby

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Instagram post 18041897378323338

As a NICU parent and advocate for families, I’m

As a NICU parent and advocate for families, I’m continually inspired by the powerful stories shared by NICU families 💜

This #PrematurityAwarenessMonth, I invite you to share your NICU story to spread hope to others. 💫

If AngelEye’s solutions—like their Camera System, staff messaging, education support, or MilkTracker—have been part of your NICU journey, please leave a comment. Your words can make a meaningful difference.

✨ Three selected stories will receive a $100 grant for the NICU of your choice to support family-centered care

To participate, follow @AngelEye_Health and share your story in the comments by November 30. Winners will be announced on December 5.

I’m grateful to be part of this journey with you. Together, let’s build a stronger, supportive community. 💙

#AngelEyeHealth #ShareYourStory #PrematurityAwareness #PreemieParents #NICUParents #nicubaby #nicuparents #nicugraduate #niculife #nicucams #nicunurse #preemiestrong #preemiepower #preemieparents #preemiemom

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Instagram post 18010881815458863

🎃 Happy Halloween to all the amazing NICU famil

🎃 Happy Halloween to all the amazing NICU families! 👻 Wishing you sweet treats, tiny miracles, and endless strength as your little pumpkin continues to amaze you each day. 🧡

Remember, you’re never alone on this journey!

#NICUstrong #HalloweenInTheNICU #halloween #throwbackthursday #throwbackhalloween #nicumom #nicumama #nicuparents #nicuhalloween #happyhalloween #ilovemymummy

💜 Honored to be featured on Care OutLoud Podcas

💜 Honored to be featured on Care OutLoud Podcast with the incredible Mary Coughlin! 💜

Over the years, Mary has become not just a respected colleague but a friend whose dedication to trauma-informed care inspires me daily. We dove deep into topics that are so close to my heart—trauma-informed care, family-centered support, and the impact the NICU journey has on families. I shared how I felt led to create Empowering NICU Parents, resources like Our NICU Roadmap, and the Empowering NICU Parents’ Podcast all to help families feel more informed, connected, and empowered through their NICU experience.

Advocating for compassionate, connected care that walks alongside NICU families every step of the way, ensuring they feel supported, informed, and empowered, remains at the heart of my mission. I am able to fuel my passion through my advocacy work on the Family-Centered Care Taskforce and at AngelEye Health, with NICU2Home which provides essential support, education, and a smoother transition to discharge.

Huge thank you to Mary for giving me this platform to share my story and for all the incredible work she does at Caring Essentials Collaborative to reshape NICU care. 💫

#nicuparents #nicubaby #nicujourney #nicunurse #niculife #preemieparents #nicutrauma #traumainformed #familycenteredcare #careoutloud #nicupodcast

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