Watch as 3.5-week-old (31.5 weeks corrected gestational age) Eleanor has her isolette bedding changed. She was on minimal support at the time – a high-flow oxygen nasal cannula and an orogastric tube that carried fortified breast milk from a syringe into her esophagus – but you can see what a production it still was to move her safely from her bed and into her mama’s arms.

Then, if you look closely, you can see a mix of emotions on my face as I try to relish the not-often-enough chance to hold my daughter and fight back the tears brought on by feeling helpless to help my daughter – an emotion I felt again and again and again.

Her nasal cannula was crooked, and her tiny nose was being pulled with it. Forget that she carries a scar under her nostril from initial CPAP device that helped her breathe in her early weeks, this just looked terribly uncomfortable, probably even painful. And I was powerless to help her. I had to stand by and hold her and try to focus on how simply awesome it was to have her in my arms and to enjoy that rare moment, knowing her nurse could fix the cannula as soon as Eleanor was back in bed.

It hurts so much to watch your child be uncomfortable or in pain. It’s even worse to feel helpless. Worst yet is when you know you can’t do anything to help but ask for someone else to help.

World Prematurity Day is all about being aware. As a community, we need to be aware of the advancements neonatal care still needs – nationally but especially worldwide. Premature birth is the number one killer of newborns. As individuals, we need to be aware of risk factors and prenatal care that prevents or delays premature birth. As new parents, we need to be aware of our premature babies’ needs because, while we may not be able to fix them ourselves, it is up to us to be their voice and ask the professionals in charge to do the work for us.

My past World Prematurity Day blog entries:

4 Responses to World Prematurity Day 2013

  1. Andrea says:

    Sobbing as I watch this think back 3 years ago when these babies were born, as I remember my own kids’ NICU stays, and as I try to fathom your journey and strength. Your family never ceases to amaze me. Love you!

  2. Sara says:

    That video brought me to tears and they just kept flowing with your story. My son was a 35 seeker in the NICU and I felt so similar. You are amazing and ETC is so incredibly lucky to have you as their mama!

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