Life After NICU / Surviving the NICU / Viability

The Need for Change



Yesterday, November 30th, was the final day of Prematurity Awareness Month. It was also the day, six years ago, that James was due to be born. But on November 30th six years ago, James was already 120 days old. 17.14 weeks. He had gone from weighing 15 ounces to a whopping five pounds.

By November 30th James had already endured three surgeries and countless other procedures. He had gone from being the sickest baby in the NICU to the one they saw last most days. James had proven every single doctor and nurse wrong. In fact, less than six weeks from now he would be coming home! Coming home on just a tiny bit of oxygen, no trach, no ventilator. Coming home eating everything by mouth. Born at 22 weeks 6 days and coming home!

I know many preemie moms who celebrate their baby’s due date. Maybe if I did this day would be a little less sad. I don’t celebrate, but I do reflect. It’s the one day I let myself dwell a little bit on what might have been had my body not failed so completely during pregnancy. I’m not sure that guilt will ever go away.

This year as I reflected I listened to a remarkable podcast called Surviving the NICU, Parents’ Perspectives. I listened as parents from all walks of life, with completely different backgrounds and experiences, shared their NICU story with experts in the field of neonatology, in the hopes of improving how these experts relate to moms and dads in the NICU. It’s an excellent podcast and I highly recommend giving it a listen. I loved the beautiful aha moments the presenters created with the NICU experts. They are absolutely making a difference in how families will experience the NICU in the future.

As I listened to this podcast I thought about our NICU experience and how incredibly fortunate we were. James was absolutely in the right place at the right time. We could not have mapped out better care for him if we had weeks to plan. Not to say things couldn’t have been better. In my opinion, his NICU does an absolutely outstanding job taking care of babies – they are definitely one of the best. But they don’t do such a great job of taking care of moms and dads. But the babies – that’s what it’s all about. If you’re going to do one thing well as a NICU, that’s the part you want to get right, and they did!IMG_8455

Because James was so early (even earlier than they realized), we were given the option of having the doctors attempt life saving measures when James was born or provide comfort care only. We were also given the option to stop care and remove him from life support a couple of weeks later when he was so very sick. Even though those options existed, his doctors and nurses always respected our wishes for them to do everything they could to save his life. They never once gave up on him. They always treated him like he would live. His doctors and nurses fought for him and prayed for him. They saved his life over and over.

Had they not respected our wishes and instead put more stock in their own experience and expertise, I’m not sure James would be here today. Statistics told them James wouldn’t live. Had the decision been theirs to make I believe they would have chosen to provide comfort care. Studies show that it was likely James wouldn’t survive, and if he did survive he would have a very poor quality of life. I thought about the doctors who worked so hard to save him on day 8 of his life. His nurse called the Chaplain to sit with us while the doctor bagged him, trying so hard to get even a little oxygen into his tiny lungs. They could have stopped. They could have relied on their past experience and said enough. Thank God they didn’t.

There is an incredible amount of expertise needed in the NICU. In order for this level of treatment and care to be effective everyone has to buy into it. The doctors, nurses, therapists, every expert who impacts that baby’s life in some way has to believe in them. Their decisions have to come from a place of trust. Trust that this baby will live. If they don’t believe in what they’re doing, how can they be successful?

That’s my struggle and my heartbreak right now, knowing his NICU has decided not to save babies under 23 weeks, even though they’ve seen it be successful. Even though they clearly believed in James while he was there, they’ve decided against it now. That’s what I can’t wrap my brain around. It needs to change in hospitals across our country, but I think James’ NICU is a pretty good place to start.





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