Monday, November 17, 2014

A Year of Reflection on World Prematurity Day

Benton's one year birthday was just over a week ago and today is World Prematurity Day and if those two events don't deserve a moment of reflection on life's blessings I don't know what does.
6 days old during our first diaper change

Just over one year ago, I was faced with one of the scariest moments of my life...the premature birth of my beloved son, Benton.  Sitting in that hospital room hearing the odds of your baby's survival is something I would not wish on my worst enemy, yet there I was listening to spectacularly terrible odds that my baby would not make it.  5% chance of survival...and even if your baby lives there's still over a 90% chance of severe neurological impairment.  As the doctors paraded in and out of my room, they went over my options.  1) I could choose to abort my baby since it had so little chance of survival.  2) I could choose to give birth vaginally which would basically be a death sentence for Benton because of the traumatic nature of a vaginal birth on such a small micro-preemie; however, it would save my body from a hard recovery from a classical c-section and would allow any future pregnancies to be easier.  3) I could choose a c-section knowing full well that it was my best chance for my baby's survival but that even then it would likely not save my beloved baby and then I would have a much harder chance at getting and staying pregnant in the future.  I chose Option #3.  I wanted my son to have the best possible chance even if that meant that any future pregnancies might be compromised.
Benton's baptism day

I had made my decision - I would fight for Benton no matter what and hope and pray that God would provide us with a miracle.  That my baby would be part of that 5%.  Later I heard from friends who know OB-GYNs and they told me that the 5% chance doctors tell parents is really just to give them hope.  In reality almost no child ever makes it when they are born at 23 weeks.  I'm glad I didn't know that at the time, because I clung to that 5% chance like it was a lifeline.


On November 8th at 11:41am Benton Robert Bertram came into the world without a peep.  He weighed only 470 grams (1lb 0.5oz or the equivalent of 470 paper clips) and was only 11 inches long.  He wasn't breathing, his skin was almost gelatinous and he had bruises over a large part of his body due to a prolapsed cord.  The doctors told us he wasn't going to make it, but just 15 minutes later they came back and said he was breathing better on the ventilator and had stabilized.  Our miracle was at work.
So tiny and fragile
Over the next 200 days Benton proved that miracles truly do exist, and after 6 1/2 months in the hospital he finally came home.  Our hospital stay was definitely a roller coaster ride full of prayers in the hospital chapel, nights in the nesting room when it looked like Benton wasn't going to make it and days where I cried myself to sleep.  We were told 3 times that he wouldn't make it and it was time to say goodbye, but each time he came back from the brink.  No parent should ever have to say goodbye to their child.  It was a heartbreaking time, but miracles do happen.  The power of love is a miraculous thing. We believe that Benton is here with us today because of God's grace and the miraculous healing power he sent our son.


Each day I remember how lucky I am that my son is alive, thriving and healthy.  However, as Benton gets stronger and stronger its easy to forget how much he's been through in his brief life and how it still affects him to this day.  Benton is one year old now, but he can't crawl, walk or pull up on the furniture.  He can't eat a lot of solids by mouth because he was traumatized by his many intubations and he still aspirates his liquids so he is gtube dependent.  When you compare him to a "normal" one year old he is definitely behind, even if you were to compare him to others his adjusted age he still lags in certain areas.  But when you view his progress in relation to where he was when he was born and for what he has been through you realize that he is the most amazing little boy in the entire world.  Benton has an amazing love of life, he smiles constantly, enjoys sitting up and getting on his hands and knees, he loves babbling and squealing and playing with his toys.  We know that he will continue to thrive and reach his developmental milestones, it will just take time and patience.

To be completely honest, there are days that I look at Benton and wish he could just be normal.  I would love to not be in RSV isolation for all of cold and flu season.  I would love to have Benton get a cold and not end up in the hospital for the umpteenth time.  I would love to be able to have him play with other children at the park or even feel free to put him in a swing with the need to disinfect everything he touches.  I would love for Benton to be excelling at his developmental milestones and be crawling all over our house.  I would love to see Benton scarfing down food in his highchair during family meals.  I would love to feel free to travel and visit my family with Benton for the holidays, but flights are off limits for kids on oxygen.  I would love to feel free to bring Benton on daily errands so as to not feel homebound by his oxygen tanks, monitors and feeding equipment.  But that is not my reality and most days I am okay with that.  There are moments when I throw myself a pity party, but I know that I am so incredibly lucky to have an amazing son like Benton.

Smiling happy Benton today
Despite all of the challenges our family has faced this past year, I consider us one of the luckiest families in the world.  We have an unbelievable son who fills our hearts with joy and melts our hearts with his smile.  We have the promise of many more wonderful years ahead with our energetic son.  We have had the support of countless friends and family all over the world - without their support I'm sure we would have crumbled in the face of so many obstacles.  We have had the best team of doctors and nurses taking care of Benton without whom Benton would surely not be here today.  We are forever blessed and today on World Prematurity Day I feel the need to say "THANK YOU"!!!! Thank you for following our story, thank you for sending prayers and love to our wonderful son, thank you for caring about the plight of premature babies, thank you for supporting our family in our time of need, thank you thank you thank you.  And now I'm going to go kiss and hug my precious preemie who has defied all odds to be here with me today.  He amazes me today and will amaze me for the rest of his life.  And I thank God for all the miracles that have brought us to this point today.

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