Monday, October 4, 2010

Tweeps Helping Peeps: Meet Ollie and his Parents, Renee and Steve

Hello!  Welcome to "Our Story"...the one we were completely under prepared for; one we never knew we'd ever be telling someday! This is a story of Premature Birth...Extreme Premature Birth.
I'm Renee' and I am the Wife and Mom in this story.  Meet Steve, he's the Husband, Dad, and Step-Father.  Our family consists of us as Parents and 4 children:  3 Teenagers (from Renee's first marriage, thus the additional "Step-Dad" title) and 1 little 6 year old Redheaded boy, our son together.  Oh, and we have 3 fabulous rescued Greyhound dogs...recently added to the family, over the last year.
"Our Story" began in 2003 when we got married and decided that we wanted a child together, the sooner the better...we weren't risking Renee being in the 35+ group. Our son was conceived without difficulty and it wasn't until Renee was 16 weeks along that we had any inkling of the pregnancy being anything other than normal.  Through a series of screening tests and the more specific testing that followed, we learned that our pregnancy, our child was not progressing normally.  By 19 weeks along, Renee was put on bed rest for the duration of her pregnancy and though we didn't know the exact cause of our child's medical problem, we knew our child was in danger.  For the next 9 weeks, she rested and we hoped and prayed for the best.  We knew our baby was only half the size he was supposed to be for gestational age and was not making appropriate growth gains as time went by. We also knew that there would come a day, when our child would have better chances of survival outside of the womb than long as he survived to 28 weeks and weighed in at 1lb or more, the doctors said his chances of survival were higher. We were going to have a "small" Premature Baby...definitely not what we had planned.
Our son was born via planned C-Section at 28 weeks 0 days and though the best doctor's ultrasounds had estimated his weight at 450gms (1lb) and length at 16 inches, Oliver was born at 430gms (15.2oz) and 10.5 inches long.  Although we knew from books we had read about Premature Babies and from our doctor's information, that Oliver would likely spend 3-4 months in the Level 3 Intensive Care Nursery at the hospital, Oliver remained hospitalized for 7 long months (218 days) before we were able to bring him home to join our family.  We joke that Oliver is both the smallest baby born in the family and also the biggest baby we brought home...but at 7mos old, Oliver only weighed in at 9lbs 8oz. We were admonished by the hospital's Neonatalogists to be careful in choosing Oliver's pediatrician and run from anyone who said or acted like they knew exactly what to do for Oliver as there wasn't and still isn't data enough on Micro-Preemies with birth weights <500gms.  We realized quickly that while the survival statistics for a 28 week Preemie were pretty high, Oliver's extremely low birth weight had given him a less than 1% chance of survival.  But, Oliver survived birth by surviving those 7 months in the hospital and now it was all in our hands to try to continue that great care at home.  Loss of life in the first 2 years is a big danger for Premature babies and we were scared.
Oliver came home on Oxygen, G-Tube feedings, and with a list of medications longer than anyone we had ever known.  His medications and feeding schedule went around the clock and Private Duty Nursing support was scarce at first.  Over time, we have had more on/off success with proper nursing support yet Ollie's needs have only been able to be modified to fit into a 6am to 1030pm feeding and medication schedule. Around the age of 2yrs old, we took a sigh of relief...we made it! Oliver made it to 2 years old and with only a few hospitalizations for illness to boot!  It is also at this age that we found out that Oliver was deaf due to life-savingmedications he received as a newborn. Soon after tho, Oliver would be hospitalized repeatedly for many surgical procedures for varying issues. Now, to date, Oliver has been under general anesthesia 16 times for approximately 26 or so procedures. All of his medical issues are directly related to his Premature Birth and extreme low birth weight, and Oliver does not have any diagnosed "syndrome" other than that. It quickly became a rollercoaster ride of doctor's appointments, surgical procedures, and diagnoses of symptom after symptom, issue after issue.
At age 3, Oliver attempted to attend the local Deaf and Hard of Hearing Preschool but by the second year, it was painfully evident that his medical conditions interfered with his ability to attend typical school outside of the home. Oliver attended Kindergarten at age 5 and just started First Grade, as a medically fragile Homebound student with a Deaf Education Tutor in our home.  Additional required therapies are also provided in our home for Oliver by our School District.  For more details about Oliver's current medical needs resulting from his Premature Birth, please read this story here. Our sincere gratitude goes out to Leslie O'Donnell, author, for writing Oliver's story. Leslie has made telling the details so much less stressful with her Examiner Online article. THANK YOU! Though her story was written in October 2009 and published in December 2009, not much has changed and we wish we could report improvements, but we cannot.
All of this may seem overwhelming and sad....we understand that because yeah, we are overwhelmed too.  But mostly we are grateful, amazed, challenged, and so deeply changed by all that we go through with Oliver. Premature Birth is serious; it can have lifelong consequences not only for the child but for an entire family. We are living proof of that. While "Our Story" is not the one we were initially prepared for, it is certainly one we love writing with Oliver, one day at a time. This is "Oliver's Show" and we are honored to be along for the ride.
Steve & Renee' Cole and Family
For more information about Premature Birth, please visit the March of Dimes.  Also note: November is Prematurity Awareness Month

1 comment:

Eric - BHF said...

Thanks for sharing your story. Prematurity is near and dear to my heart - while we haven't had to deal with much of what you've had to, our son was born just before 30 weeks and was in the NICU for 6 weeks. Glad to hear he's a fighter and Good luck to you guys and Oliver!

Also, as an FYI, November 17th, specifically is prematurity awareness day and I invite all bloggers to participate with me and hundreds of other bloggers!

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