Hand to Hold's Official Blog: Written by Parents for Parents

Empowerment, Advocacy for Your Child in the NICU and Beyond

Taking a hands on approach

Taking a hands on approach

The day my son was born, it’s safe to say I felt the entire spectrum of emotions. Since he was in relatively stable condition, it was a cocktail made mostly of unwavering joy and crippling fear. Being a dad for the first time was certainly a great experience, though I  would have chosen a less stressful path, given the choice. I remember having two predominate thoughts the first couple of days: “I cannot believe this is my child” and in some ways more importantly “I have absolutely no idea how I am going to properly care for him.”

While in a lot of ways the NICU is a controlled environment, with monitors, equipment and a NICU staff trained to care for your child, a lot of parents feel a complete lack of control when their child comes early or is sick at birth. The wires, the alarms, the three million terms and acronyms you learn at breakneck speeds can leave a parent feeling dizzy. The benefits of NICU parents taking a hands on approach can make such an incredible impact on both parent and child. It is my dream that one day all NICU’s, regardless of your stats or circumstance, will take time to purvey that you can be empowered, that you can advocate for your child.

Finding my voice to advocate for my son was something that took a little while to do. It wasn’t because I didn’t care or wasn’t worried. But like most NICU dads I’ve gotten to know, it took a little while to feel comfortable in the NICU. We were fortunate to have a very accommodating staff at the hospital. When we started to get a clearer picture of how things would play out over the coming weeks, we started to ask more questions, sit in on rounds, and doing things like feedings and diaper changes. But it was so much more than that. We grew fond of a nurse and asked that she become our son’s primary. In the same regard we made a request that a nurse not take care of our son. It wasn’t a matter of her being incompetent, but after a miscommunication in the NICU we felt she reacted a bit too casually to our concerns. These are just some of the many decisions parents in the NICU need to know they can make.

Something you also need to keep in mind is how important being an advocate for your child can be after the NICU. Knowing when to speak up can make a colossal difference in your child’s development. We had a county health department nurse who came to check in on Jayden’s progress at three, six, twelve and eighteen months. At the time Jayden was right about in line with his milestones, so we were very pleased with his progress. Despite the reality that his speech progress was delayed, the nurse told us during his 18 month checkup she felt he was right on track and closed his case. I think both my wife and I naively thought, or hoped, she was right. As Jayden closed in on his second birthday, it was quite apparent that his speech was farther behind than it should be. We decided to contact our county nurse and set up an evaluation through Early Intervention. Despite knowing in our minds and hearts he was behind is his speech progress, to hear he was farther behind than we thought was a tough pill to swallow. All the same it validated our concerns, and because of our choice to speak up, Jayden has, and is, receiving the support he so desperately needs.

Feeling empowered and speaking up to advocate for your child is such an important aspect of helping your child. Whether it’s in the NICU, or after you come home, being your child’s voice when they can’t say anything can make a world of difference in how your child thrives.

Joel Brens About Joel Brens

As a father, Joel Brens (IL) wants to dispel the idea that dads can't be scared or emotional beings. His wife gave birth to their son via emergency c-section due to complications from diastolic umbilical artery flow at just under 33 weeks. Their son was born in May 2010 at 3lbs. 6oz. and spent 25 days in the NICU while his lungs developed and he learned to eat. Presently, he is undergoing evaluation for developmental and speech therapy but otherwise doing well. Community and support have been essential to Joel and his wife. You can connect with Joel on his Facebook page, via email or on his blog, Papas of Preemies.

Comments

  1. Kristen Padavic says:

    Advocacy is the single most important thing I have learned about parenting, having lived as a preemie mother. Never stop asking questions, and when you think something is not right, keep looking for answers. We were told my daughters were getting big and that prematurity was behind us when they were 6 months old (30-weekers). Since then, we’ve seen the shoes drop! From vision to behavioral issues, lungs, and other things in between – prematurity doesn’t end for many of us once they start gaining weight. It’s a long journey, and advocacy is the primary thing we must stick with! Great post, Joel!

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