Just finished your book . . .it is my story! Mt 27.5 weekers are now 11 years old! Here is a snap shot:
Imagine holding five sticks of butter in the palm of your hand . . . that is equal to the birth weight of my daughter, Annika. Her twin brother, Linus, weighed in at a hefty two pounds, one ounce. My children were born three months premature; they were not much bigger than the beanie babies that kept them company in their isolettes in the NICU (Neonatal Intensive Care Unit) at Crouse Hospital in Syracuse.
Linus struggled in the hospital for three months. He suffered from a brain bleed, severe lung problems, apneas, and bradycardias, retinopathy, and other preemie related hurdles. Annika was in the NICU for four months and then re hospitalized twice before finally coming home six months after her birth. She breathed with the help of a ventilator for two months; we could barely touch her because of her raw nervous system. She underwent eye surgery at three pounds due to severe retinopathy. Between the two babies, every chapter in the preemie books seemed relevant. My husband, Martin, and I spent those months in a fog, driving an hour each way, each day to see our children. We could only look at them at first; then, eventually, we were allowed to practice kangaroo care—bare skin to skin contact with the babies (and the wires and tubes) on our chests.
We have learned more about neonatology, insurance companies, nursing, and living for the present, than we ever cared to know. We functioned as medical technicians for Annika for over a year as she required oxygen and many medications. We enjoyed each day, each moment; and we thanked the doctors, the technology, and the many people that supported and prayed for us.
Annika and Linus are now two and one half years old. Over time, the many doctors and medical treatments have been replaced by an extraordinary support team of early intervention therapists, teachers, family members, and caregivers. I am overwhelmed at the progress my children have made; I attribute their amazing strides to this incredible support system.
Annika dearly loves her two nurses, Judy Perkins and Carolyn Tavaris. She receives at home care through the NY State Care At Home Program. Linus attends a wonderful family daycare program –the Children’s Corner with Christine Barley. Their grandparents also are integral components in their care.
The kids know all of their therapists by name and the color cars that they drive. They receive occupational, speech, teacher, physical, visual, and psychological services. The team involves Nancy Quarrier, MaryAnn Simpson, Cheryl Moore, Patti Meyers, Leslie Shakespeare, and Dalia Tamir. Our pediatrician and care coordinator, Dr. Marguerite Uphoff and Janet Karas, are also excellent supports.
My two year olds can now say “I love you Mommy!” and they can walk and climb and jump and count. Their prognoses are excellent. EARLY INTERVENTION from both a medical and environmental prospective WORKS!!
You have a very informative flotsamblog website and would like to work with you!
I would like to know if you accept pre-written blog post with links! Could you please give me the general rates?
I hope to hear from you soon!
Just finished Half Baked. LOVED it. I am an OB nurse/lactation consultant and thought it would be interesting. No. It was a revelation. Thank you so much for presenting–with guts and humor–the other side.