Sharing Insights On My 5th World Prematurity Day As a Preemie Parent

I “celebrated” my first World Prematurity Day in the NICU. Sam was just two months old actual and was on his second full day of being off oxygen support.

A lot has changed since that day, and I thought I would take a moment and reflect back on the five main things I have learned in the past five years.

The Trauma is Real

The NICU is terrifying. It doesn’t matter if you are in there for one day or for 95 days, like Sam and I were. Any amount of time in the NICU is too much. The beeps, the alarms, the uncertainty, the fear… they are all there and they are all all consuming. Leaving the NICU unscathed is just not possible – for you, your preemie or those in your immediate inner circle.

It is important to acknowledge the trauma. You all suffered in one way or another. I came out of my experience with a nice case of PTSD. Sam came out of his experience with a health fear of doctors and hospitals. Irene came out of this experience convinced that a health crisis was always on the horizon. Even my marriage suffered from the trauma – and crumbled under it.

Be strong enough to know the trauma is real.

The Fear Never Ends (preemie parent or not)

Life inside the NICU is filled with fear. Will my preemie ever be strong enough to go home? Will his bladder start working? Will he lose his eyesight? Is his stomach filled with gas for has he developed NEC? The one thing I realized is, at least in the NICU that fear is in the safety of the hospital. The NICU is a place filled with amazing people who are there to make sure that even if the worst is happening, your preemie is safe.

Once you are discharged, you are on your own! Yes, you will still have doctors and nurses and specialists in your life, but they are not there with you 24/7. It makes each cough that much more terrifying – because you are alone.

And once you get past the early stages of terror of not knowing if your baby is suffering a Brady or an Apnea event… there is all the rest of the fear. In my case, I could not believe that I was going to walk away from having a twenty-four weeker with just slight nearsightedness and some digestion issues. I was convinced everything was more than it was. 90% of the time I was wrong. For the times I was right, it was terrifying. We went through skull fractures, five days at children’s for RSV, and an Autism Diagnosis.

Your child starts its life bathed in fear – and honestly, that fear never goes away.

The Resilience Of Your Child Will Amaze You – Every Day

OK – so you have suffered a trauma and you are bathed in fear all the time. That’s the bad news. The good news if these preemies are amazing. They are the most resilient children around. Hell – these kids have survived more than most of us before they were even supposed to have been born. With that in their past, how can they be anything but inspiring.

I know I look at Sam on a daily basis and wonder. I wonder how he can be so happy. How he can be so healthy. How he can be so tall. Sam is the picture of resilience and his amazes and inspires me every day.

Life Will Never Be The Same

This is so true. I mean, how could you go through that experience and not have your life completely change. The NICU is an earth shattering experience. I know medical terms I never wanted to know. I have friends that have enough medical equipment in their houses to start a small clinic. Hand sanitizer is in every room of my house, in my purse, in my car, in my parents house…

Yes – I have suffered. Yes – I am constantly afraid. Yes – I am a much better person than I was before I had Sam. My life has changed. I have changed. I am so grateful for these changes.

You Will Change In Ways You Didn’t Think Possible

All of these changes I have made, personally, emotionally and professionally have been wonderful. I never felt I was a patient person before Sam. Now, I have a patience even I am in awe of. I never saw myself as a stay at home mom. Well, I work – but I work from home, allowing me to be present for my kids at a moments notice. I never envisioned myself as a single parent or a divorcee – yet here I am and I am OK with it.

The bottom line is, my life was altered in many ways on September 16 2010 and I am OK with it.

So, remember, while the NICU experience is awful and overwhelming, you can still come out the other side. Of course, I would love nothing more than to see the number of premature births continue to drop. When Sam was born it was 1 and 8 births worldwide were premature. Today that number is now 1 in 10 births.

World Prematurity Day

Sam the Anti-Preemie: On the beach

I had planned to write a moving and deep post about world prematurity day.  Since my friend, Nicole… Kenna’s mom took care of that with her beautifully written post.  Instead, I will take another approach.

SCREW PREMATURITY.

I would like to scream that from every roof top around the world.  Prematurity sucks.  It sucks for the parents.  It sucks for the siblings. It sucks for the grandparents.  It sucks for the extended friends and family.  In a word… it SUCKS.

Yes.  I have a beautiful boy who is in better shape than most would expect for a 24 weeker.  Yes, I am a stronger person because of having my preemie.  And yes, I made some amazing friends in the wonderful nurses and doctors at Alta Bates Hospital.  Would I trade all of these positives in for a son born at full term.  Hell yes.

And now, I have a new battle ahead of me, thanks in most part to Sam’s prematurity.

When we were in the NICU, I obsessed every day that Sam would get NEC and die.  I was consumed by this fear.  We were lucky enough to never experience the soul crushing blow of NEC, but the anxiety of it did a number on me.  Once we were released from the NICU, I turned all my fear and anxiety on to autism.  The chances of autism in premature babies is over 5 times higher than for term babies.

At every home health visit and every doctors appointment, I would ask about autism.  I wanted to know the signs.  I pointed things out that worried me with Sam.  Each time, I was reassured that Sam was perfect.  When Peter and I left for a long overdue vacation, I was worried about Sam, but not overly.  Coming back after six days away, I was able to see things more clearly.  I took him to his Occupational Therapy appointment, and voiced my concerns.  The therapist voiced hers.  I wrote about this on Wednesday.

We saw the speech therapist on Friday, and the results were not great.  It appears that Sam is on the path to an autism diagnosis.  Yes, there is still a chance that with speech therapy we can correct all the red flags that we are seeing and he will be fine, but it doesn’t look great.  The next few moths will be long and hard and filled with quite a few chewed nails and tears.  But most of all, I think they will be filled with anger towards prematurity.  Once again, prematurity will be impacting me, my husband, our daughter, my parents, our extended family, and our friends.  Worst of all, prematurity will once again be taking a toll on Sam – my wonderful little boy who has already been through so much and doesn’t deserve another thing to go wrong in his life.

So, today, on World Prematurity Day I saw SCREW YOU.