Sunday, March 10, 2013

Lasting effects of prematurity on this 2nd annual Parents Of Preemies Day

Today is  Parents of Preemies day!

Parents of Preemies Day is a national day of awareness on Sunday, March 10th, 2013 recognizing the courage and commitment it takes to stay strong and resilient when premature birth turns a family's world upside down. 

Each year, 13 million babies are born prematurely across the globe to parents who never expected their birth stories would be so challenging. Though medical breakthroughs continue to improve outcomes for preemies, experts are only now beginning to understand the intense psychological effects that premature birth has on moms and dads. 

In my husbands and my 17 years of being married, we have had 8 preemies. Our first was born at 34 weeks after 5 weeks of bedrest because my water broke at 29 weeks. My track record got a little better after that, my second daughter was born at 35 weeks, my third daughter...she was a 34 weeker along with daughters 4 & 5. There were no real concerns with my first five other than apnea, feeding/sucking issues and temperature control...which was all pretty much resolved when they left the hospital. I do think that it did have lasting long term effects which, to this day, have been fluffed off by pediatricians and counselors. From OCD to communication issues..with a slight case of autism like actions. But that's a whole other post ;)

When we thought we were done having kids, there came the shocker to us...TWINS. Now, anyone knows that when you are diagnosed with a bicornuate uterus, chances of carrying a baby is slim...but twins? Almost impossible. I was going to prove everyone wrong...well...sort of.
At 21 weeks I was put onto 23 weeks, I delivered our twins via c-section. That first day was scary...the whole second day was a dream...I was a mom to twin boys. I couldn't imagine anything ruining my happiness. I was on top of the world, even though my babies had an extremely low chance of survival. I never a million years that anything horrible could did. By the end of the third day, our world shattered into a million pieces...Our Nicholas passed away. It was such an out of body experience of every emotion possible...every raw feeling ripping through every inch of my soul. How could we...I...have a child that passed a way? It's a feeling that I feel over and over again thanks solely to my diagnosis of PTSD...yes, even after almost 6 years, I am suffering from a horrible mental issue that gives a person such vivid flashbacks...I can smell, feel, and see everything as it happened on that evening. Then, to go 129 days in NICU with our surviving twin...yes, the roller coaster ride was a very hilly one. One with a heart surgery, a NEC scare, many, many infections, a PICC line, to many numerous blood and platelet transfusions...and much, much more.

The worrying has not stopped in the NICU like I hoped or thought. There have been tons of hospital stays (knock on wood...not too many this year), diagnosises of microcephaly, Cerebellar hypoplacia, a possible rare chromosome issue, being put on the autism spectum, global delays, feeding tubes, hearing loss/hearing aids, muscle tone issues, eye surgeries, being non-verbal, severe lung problems which have landed him in the PICU...and epilepsy. 
Every day consists of medications, tube feeds, diaper changes ( almost 6...and let me tell's not fun), doctor and therapy appointments, a lot of repetition of...everything. And more anxiety and stress. 
The anxiety and stress gets worse when I sit and think of what the future holds...something that is a no no when ou have a chronically ill/special needs child. But I'm only human. I do think of the future..and it's scary. But on the other hand...he has come a long way and has proven that he is a fighter! The doctors told us that he may never walk...well...thanks to our baby #8...Gina...our rainbow surprise baby...she has been Kenny's surrogate twin. Helping fill the void where Nick should have been for her big brother Kenny. We went to a school skating party and she wanted to skate...well, Kenny saw that she has skates on and really wanted to try, so we got a pair of Fishe-Price skates from the rental booth (yes, they do carry skates for kids that have special needs), and he loved them! 

My little 1.7 pound miracle was actually skating!

So, the roller coaster ride will continue, the worrying never stops. At every runny nose. at every cough, the scary ride teeters at the top of a hill that makes me want to close my eyes tight and find my happy place, but I know that he lasting effects of having preemies and micro preemies...and even losing a preemie will always be my ride in life.
So happy Parents of Preemies Day! To all my readers that have premature children or even if you know of a preemie about it. It helps. It makes the stresses of the birth, the NICU stay and  beyond that much easier.

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