- Posted July 4, 2014 by
Santa Ana, California
This iReport is part of an assignment:
Raising a special needs child
So Small and Writes her own book
I worked in the banking industry for nearly 20 years. I was laid off by the time Nicole was 8 months old & hospitalized again for the 3rd time since her birth. Upon birth, November 4, 1998 a disease that "typically resolved in premature infants within 10-14 days" took Nicole 23 days just to be weaned off the ventilator. Next, a baby is born with the natural ability to "suck,swallow, breath" in order to take a bottle. She was to weak to breast feed, but no one knew she struggled to take a bottle because she was born with the inability to S/S/Breath. She was discharged January 1, 1999, after MANY ups & downs, many 1 baby step forward and 2 baby steps backwards. Another way of saying just when the going is good, she is progressing something else happens that just sets her progress back. More sickness, seizures to medication, feeding difficulties, then home with several medications, a apnea monitor & a very fragile little baby girl. By the time she was 7 months old, it is 7am, she turns blue during a diaper change. We call 911. Her first of many to follow to our surprise admission to CHOC Children's Hospital. It is 4:20pm after a day of various tests, scope, and CT scan, we get a visit from CHOC Neurosurgeon. Our daughter is diagnosed with Hydrocephalus & scheduled for emergency surgery in the morning to have a shunt placed in her brain. Reason is UNKNOWN ETIOLOGY. No brain damage, it is not congenital as seen by a MRI & CT scan taken in the first 43 days of her hospitalization after birth. After a week she is discharged home. Exactly 30 days later, a followup visit for the shunt, we are told the shunt is working perfectly, however, Nicole needs to be in the hospital because she is not growing. The next day, she is readmitted to CHOC. CHOC never having a baby that was 8 months old, and a skeleton of a 1 month old infant per a bone age xray, 8lbs (at birth she was 6lbs), a baby that simply was NOT GROWING, & was taking less than 2 oz of a bottle that took 45 minutes, she remains in the hospital for 43 days & again endures beyond the imagination. Needles galore, infections that cannot be identified, numerous Doctors, Specialist, & the Med. Students Residents, all trying to find answers to no avail. A G-tube is placed in her little belly to feed her, & she is discharged with a diagnosis of Severe failure to thrive, again UNKNOWN ETIOLOGY. Now, she is 1 1/2 years old & still cannot sleep more than 1 1/2 hours per night. We are are out at midnight walking her covered completely in her stroller, trying to help her to go to sleep. We play soothing music. My hands start to crack. My doctor tells me m body is breaking down. Again no medical professional can tell us why this little girl cannot sleep. She is 14 months old, & a Neurologist that takes her on out of the insurance network of doctors. To this day he cares for her sleep disorder that she will live with because she was born with the inability to sleep, her brain just is not made up like the rest of us who can sleep. Why? UNKNOWN ETIOLOGY. Finally, October of 2005 the Japanese find a gene for Costello Syndrome. January 2006 a doctor here in California, finds a gene for CFC (Cardio Facial Cutaneous syndrome). I get a call from 2 doctors, the finding doctor here in California & another in Deleware, Nicole is diagnosed with CFC. A rare syndrome overlaping Costello syndrome whereas only 350 -400 of our children world wide. Now that confirms why she is SO SMALL, her very soft silky skin, her missing eyebrows, but her beautiful smile, her laughter that makes you laugh, her mysterious little self although she cannot talk, she clearly understands. Time goes on & the first 5 years of her life we live with her in & out of CHOC hospital. We have a team of perfect Specialists, Doctors, Nurses, Therapists, & all the behind the scenes that involves the Case Managers, the insurances, the pharmacists, right down to the janitors of the hospital rooms. Our lives have watched helplessly while she had a seizure in 2002 following a surgery that lasted 8 straight hours & again we are told it is a good possibility she will die. BUT.. she recovers with NO brain damage, on a ventilator for a week due to respiratory distress & is discharged now with continuous oxygen. 2003 is as critical as the first 72 hours after birth, when she does nearly die from a lung disease called ARDS. A disease that nearly suffocated her lungs & yet as PICU doctors nod their heads in disbelief that she barely survived. She / Us & our families of parents/ sisters/ brothers/ friends see her through nearly a 4 month hospitalization. She comes home with a Trach & more oxygen. Then 2004 she is given approx. 2 years to live or less. She comes home with a ventilator to sleep on. She has encountered many near death events of sickness & yet to this day, she is the cutest and tiniest little near 16 year old whoms entire hand fits in the palm of my hand, she stands at 46 inches & 51lbs. She is full of love, hugs, kisses & happiness. She has taught us as her family, to friends, medical professionals, & to many others, to be humble, to be grateful, to have faith, to thank GOD, to appreciate life for how short it can be, and to appreciate the value of each day because we truly never know what the next day will bring to us. If we never knew the meaning of loving unconditionally, we know the meaning of it beyond words today because Nicole regardless of what her tiny little body has endured throughout her near 16 years of life, this little girl loves beyond words, smiles beyond the stars, & she hugs & laughs with a little jiggle beyond ones imagination. In the public eye, with her styling sunglasses, her converse shoes, her hair bows that match her clothes, her tiny little self, no one knows more than we do, they are looking at or staring at a very perfect & happy little Angel that continues to write her own story her very own book!
Thank you for allowing me to share Nicole's story with you.
- My life