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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💜 Did you know that infants born premature may

💜 Did you know that infants born premature may face health challenges that extend beyond the NICU?

This episode of the Empowering NICU Parents Podcast is one of the most emotionally impactful I’ve ever created—but it’s also one of the most important.

We explore the lasting effects of prematurity on babies, parents, and families, focusing on the importance of awareness, advocacy, and proactive care. From health challenges to emotional resilience, this is a must-listen for anyone touched by the NICU journey. While this episode is filled with valuable insights, I want to acknowledge that it may also be difficult for NICU parents to listen to. Please know it is shared with the utmost care and compassion to empower and support you.

🎧 Why listen? ✔️ Understand the long-term impacts of prematurity ✔️ Learn how to advocate for your child’s care ✔️ Raise awareness for NICU families

Together, we can raise awareness, inspire others, and support families navigating life beyond the NICU.

✨ Tag a NICU parent, healthcare provider, or supporter. Let’s empower each other and make a difference. 💪💜

#PrematurityAwareness #NICUJourney #EmpoweringNICUParents #PreemieStrong #LifeBeyondTheNICU #NICUParentSupport #PrematureBaby #NICUWarrior #PreemieLove #preemiemom #nicunurse #nnp #micropreemie #micropreemiemom #nicuparents #nicugraduate #nicuawareness

Prematurity Awareness Month is a time to honor the

Prematurity Awareness Month is a time to honor the resilience of premature infants, celebrate the strength of their families, and raise awareness of the lasting impacts of preterm birth.

For NICU families, take it one day at a time, show yourself grace, and know you’re not alone—during or after the NICU. Advocate for your little one every step of the way.

To NICU clinicians, the care you give and how you give it truly matters—never underestimate your impact. Together, we can make a difference. #prematurityawarenessmonth #prematurityawareness #preemiestrong #preemiebaby #preemiemom #preemieparents #nicuparents #nicunurse

Prematurity Awareness Month The NICU journey with

Prematurity Awareness Month

The NICU journey with a premature infant is long, scary, unforgettable, and some days, it feels never ending.

Not only does the trauma from the NICU last for years, but for some children, the lingering complications from a preterm birth remain at the forefront throughout their lifetime.

Although the co-morbidities may not be apparent to the naked eye, their affect on the child and family are very impactful.

This month is a time to honor all premature infants, celebrate the strength of their families, and to also bring awareness to others that the physical and mental impacts of a premature delivery remain with the infant and family for years and years.

For NICU families, remember to take it one day at a time, and know that you are not alone in the process - whether it’s while you’re in the NICU, or post discharge.

Show yourself some grace and always advocate for your little one.

For NICU clinicians, know that the care you provide and the manner in which you provide it truly matters - do not ever underestimate it or your value.

Together, we can make a powerful impact.

#prematurityawarenessmonth #prematurityawareness #preemiemom #preemiepower #preemiesrock #preemiestrong #micropreemie #micropreemiemom #micropreemiesrock #prematuritymatters #preemiebaby #preemieawareness #preemielife

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

Instagram post 18041897378323338

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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