Our beautiful Olivia was born 6 weeks early, weighing 4 lbs. 4oz. via C-section on June 3rd, 2012 (Doctors believe dates may have been out and she was only 32 weeks at birth), and had difficulties breathing. Olivia had an AGPAR score of only 4 at 1 minute after birth, increasing to 7 after 5 minutes. Olivia held her own for the first 24 hours of her life (the "honeymoon" period) but was unable to maintain her sats after this time. Olivia was experiencing periods of sleep apnea and bradycardia. Olivia would switch between C-PAP and a nasal cannula before being trached. Olivia was born with BVCP (Bilateral Vocal Cord Paralysis), bronchomalacia in her left bronchi, and hypotonia (low muscle tone) throughout her body. Unable to swallow, Olivia was fed via a nasogastric tube until she had a feeding tube inserted in her stomach. I exclusively pumped the first couple of months to enable the best start for Olivia. I felt at that time that it was the only thing I could do for my baby and the only thing I had control over. We were hoping Olivia’s challenges would resolve as she grew (premature babies typically outgrow these medical conditions). She was in a lot of danger of aspirating. At just 3 weeks and 1 day old and weighing only 4 lbs, Olivia had surgery: a Tracheostomy, a gastrostomy, and a Nissen fundoplication. Powerless with tears streaming down my cheeks, I watched as my tiny baby was rolled away in her isolette into surgery, and I did not know if I would hold her in my arms again. Olivia was placed on a ventilator post-surgery. It took some time to figure out the correct settings to ensure she had the respiratory support she needed. Olivia spent almost the first four months of her life in the NICU. During this time, we participated in Kangaroo care whenever possible to help with bonding. Olivia’s last MRI before discharge did not come back clear. This was shocking to us, as her first MRI at just one day old was clear. The severity of the damage could not be determined. The neurologist at the time had no bedside manner, telling us, "She may never walk; she may never talk. We do not know. I do not have a crystal ball." Understandably, my husband and I were devastated to receive this news, especially as we had no reason to think otherwise as her first MRI was normal. Olivia finally came home after four long months in the NICU. She came home with 24/7 nursing on a ventilator with a rate, a trach, additional oxygen, and a G-Tube. The last 11 years have been a blur of hospital appointments, doctor appointments, therapies, procedures, hospitalizations, and more. Being far from family here in Orlando, Florida, USA (my family is all back home in Scotland), some days can be tougher than others. Olivia is now 11 years old and is doing great considering her numerous challenges. Maintaining consistent nursing has been my biggest challenge. Now a single mom, with no help from Olivia’s father, financial or otherwise, I must maintain employment to keep a roof over our heads. Trying to keep a job with a child with complex medical needs is difficult. When Olivia requires hospitalization, I must stay with her 24/7. Olivia is non-verbal, and I need to be there for her. She requires constant supervision, and the hospital does not have staff who can stay by her side constantly. Then, when nurses call out, we rarely get a replacement. And then there is my own health to consider. FMLA is not available until one year of employment at the same facility has passed. Trying to get to that year mark is a challenge. I am so happy to report that Olivia is thriving at home. (July 2023) Olivia still has her trach, is vent dependent while sleeping, is G-tube dependent, and still has no diagnosis at this stage. She has global developmental delays, autism, epilepsy, several GI issues, chronic lung disease, hypotonia, myopia, and astigmastism. Extensive genetic testing has been completed for Olivia and has not identified an etiology for her concerns. A microarray identified a 16p11.2 deletion that was paternally inherited. WES (whole exome sequencing) identified changes in two novel genes. Olivia is a happy, strong, brave, resilient, beautiful, content, and adorable little girl. Absolutely enchanting. Olivia takes everything in her stride. She is my Hero! Thank you for continuing to support us on this rollercoaster journey known as life.
