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.

The Chicken’s Way Out

Did anyone notice?

That is what I kept asking myself after hitting publish on my last post. The opening line was so obvious:

After 7 months of single parenting,

But, since I hadn’t told a lot of people, I wasn’t sure if anyone would really notice… or realize what I had just said. This was something I had been holding back from most people. Only a select few knew what was happening. Hell, my own grandfather didn’t even know until a few weeks ago.

But there it was. Published for all to see.

I was now a statistic. A public statistic. Like many marriages, mine was on the rocks. We had suffrered through much in our ten years of marriage – with the last five being complete killers.

When Sam was still in the NICU, I heard someone say that the percentage of preemie marriages that fail was astronomical.

When Sam was placed on the Autism Spectrum, I heard again about how hard a special needs kid is on a marriage.

Well… Here I am. Separated from my husband. Single parenting the best I can. Living the life of a statistic.

Now, before anyone gets the wrong idea, this is not because of Sam.

Not by a long shot.

The problems in my marriage were there before Sam was born. The stress of Sam’s birth and special needs haven’t help, but they are not the cause of split. Life is the cause of our split.

At least now it is out there. The truth is out there, and I finally feel like I can get back to writing, and telling my story without holding back. It has been so hard these past seven months to write as I felt disingenuous. For anyone that has been reading this blog since it started knows, the absolute last thing I can be accused of is holding back and not being totally honest. Sometimes, I have been TOO honest and raw. Now that I took the chicken’s way out and copped to my single parenting status, I can finally go back to writing the way I like.

Raw, honest, open and uncensored.

I will start now. My husband and I separated in January and I am terrified about what is to come, but honestly excited about the possibilities.

Of Lice and Poop

After 7 months of single parenting, I really thought I had a handle on things.

We were a well-oiled machine. We were eating better. There was less fighting in the house. We were on-time to everything. Kids were happy. I was happy.

Then, in one evening, my façade came crashing down in a pile of poop and lice.

It wasn’t until my daughter announced her head itched while Sam was in a corner screaming while trying to poop that I realized I was outnumbered and on my own.

Both kids needed me and they both needed me at the exact same time.

And don’t get me started on the pets. Because it was clear they were in need of attention as well.

What was a single mom to do?

Cry. Prioritize.

I explained to Irene that I had to help with Sam’s pooping issues first, and then I would turn my attention to her. She didn’t complain because it gave her time to read.

So, my confidence in my super powers restored, I set about to getting a suppository in Sam.

Right – I was the only adult in the house and getting a suppository in Sam is a two-person job.

Well shit.

After 20 minutes of screaming and crying (some of it Sam’s) and a near miss with a broken nose (all mine), I finally managed to use my Twister skills and pinned Sam down long enough to get the suppository in. Then it was just a matter of waiting for him to pass the largest brick of poop I had ever seen. (I will spare you the screaming and crying that took place between the suppository and the poop – but needless to say, I am still shocked that one of the neighbors didn’t call child protective services.)

After rocking Sam to sleep, I turned my attention to Irene. The shampooing of her hair with Nix was easy. The almost two hours it took to comb her hair with the little lice comb was another story.  Like me, Irene is blessed with a thick head of hair… and according to the Nix box, each and every stranded needed to be combed carefully.

Again, Irene didn’t really complain as she was allowed to watch TV the entire time I combed little bugs out of her hair.

With Irene’s treatment done, I stripped her bed down, gathered her favorite stuffies and headed to the laundry room to start washing all her linens.

It was at that moment one of the cats followed me in, and while looking directly at me, pooped right on the laundry room carpet.

It was 10 pm and there was not enough beer in the house.

EPILOGUE
After finding a beer or two, I did a lice treatment on my own hair to be safe. Then washed all of my linens. The next day Sam was as happy as could be and Irene seemed to be itchy head free… until today (a week later). This time, we went to a professional place (SO worth the money). Now I say with confidence that neither Irene nor I have lice… and a good inspection of Sam this evening, and I am declaring him lice free as well.

Sam the Anti-Preemie's sister after lice removal

Irene after the de-lousing

Sam the Anti-Preemie with a fluffy fro

What curly blond hair looks like after a lice check