From NICU to Now: One Mom's Journey with Premature Twins - Anna James

Finding Strength, Community and Purpose in the Special Needs Parenting World

 

November 5, 2023

As special needs parents, we often find ourselves thrust into a world we never expected - one filled with medical terminology, therapy appointments, and equipment we never knew existed. It can feel overwhelming and isolating. But within this challenging journey, we can also discover incredible strength, supportive communities, and a sense of purpose in helping others.

Today, I'm honored to share the story of Anna, a mom of premature twins who has become an invaluable member of our special needs parenting community. Her journey from shocked NICU mom to passionate advocate offers inspiration and practical insights for families navigating similar paths.

1. An Unexpected Beginning

Anna's journey into the world of special needs parenting began suddenly and dramatically. Already a mom of three, she was shocked to discover she was pregnant with twins at 10 weeks along. The pregnancy quickly became high-risk, and at just 28 weeks, Anna found herself being rushed into an emergency C-section.

"I remember sitting in the OR and them holding up these tiny babies, saying 'Here you can kiss them, they've got to go,'" Anna recalls. Her twin boys, Walker and Wyatt, were whisked away to the NICU weighing just over 2 pounds each.

The NICU Rollercoaster

• Emotional ups and downs of having babies in intensive care
• Challenges of balancing NICU time with caring for other children at home
• Lack of preparation for the realities of premature birth

For many parents, the NICU experience is a crash course in medical terminology, equipment, and procedures we never imagined we'd need to know. Anna found herself struggling to absorb all the information being thrown at her while also processing the trauma of an emergency birth.

"I felt so alone at that point," she shares. "I had no clue what was going on. I didn't know why we were going through this or what half of it meant, even as a nurse."

2. Transitioning Home: New Challenges Emerge

After 70 days in the NICU, Anna was thrilled to finally bring her boys home. But the challenges were far from over. Both twins came home with multiple medical issues requiring ongoing care and monitoring:

• Chronic lung disease
• Feeding difficulties
• Developmental delays
• Vision impairment (CVI)
• Hypotonic cerebral palsy

One of the biggest hurdles was feeding. Despite Anna's best efforts, the twins struggled to gain weight. At 4 months old, doctors recommended G-tubes (feeding tubes surgically placed in the stomach) for both boys.

"I fought it at first," Anna admits. "But eventually I realized it was what they needed. I said, 'I would rather them have it and us get over it and not need it than to not have it at all.'"

The G-Tube Learning Curve

• Lack of training on G-tube care and feeding
• Difficulty finding childcare for G-tube dependent children
• Balancing G-tube feeds with attempts at oral feeding

Anna was shocked to discover how little information and support was provided for such a major medical intervention. "They give you this baby with a G-tube and no one says you're going to need to call this dietician, you're going to need to find a supply company," she explains.

3. Finding Community and Purpose

As Anna navigated the complex world of caring for medically fragile twins, she found solace and support in connecting with other special needs parents online.

"I kept saying there's got to be more, there's got to be something else that's going to help us along," she recalls. "And then I met this community of moms who just got it."

Realizing how isolating the journey can be, Anna became passionate about using her experiences to help other families. She began actively participating in online support groups, offering advice and encouragement to parents facing similar challenges.

The Power of Peer Support

• Sharing practical tips and resources
• Emotional support from others who truly understand
• Celebrating small victories together

"I love hearing everybody's stories because I think we all have so many different experiences," Anna shares. "But in this group, we're normal. This is what we do normally."

4. Embracing a New Normal

Today, Anna's twins are thriving 13-month-olds. While they still face medical and developmental challenges, Anna has found beauty and joy in their journey.

"I'm telling you, after seeing all this and seeing that... there's no way that this is all there is," she reflects. "There's got to be more."

Anna continues to be an active and supportive presence in our special needs parenting community. Her story reminds us that even in our most difficult moments, we have the strength to not only survive, but to reach out and lift others up as well.

If you're a parent of a child with special needs, know that you're not alone. There is a community of understanding, supportive parents ready to walk alongside you. Don't be afraid to reach out and connect - you may find it's not just your child who grows and thrives, but you as well.