A letter to JHC about Hailey
Dear JHC,Hailey is a calm, easy going child that truly loves to wake up each day and look out her window at the sunlight. She was born 8 weeks early and only weighed 2 lbs 4.6 oz. at birth. At two weeks old she was diagnosed with TRISOMY 9. This affects her muscles and joints. It requires Physical, Speech and Occupational Therapies twice a week. She stayed in the hospital NICU (Neonatal Intensive Care Unit) for 5 1/2 months and when she came home she required a feeding tube and a ventilator 24hrs a day. She has never taken a bottle because she is unable to suck, swallow and breathe all at the same time. At 4 months old doctors told us Hailey had Chronic Lung Disease due to being on the ventilator for such a long period of time. Hailey also has HYPOGLACIMIA and her blood sugar tends to drop fast. So she is fed through the G tube 24 hrs a day. Only recently, we were able to wean her completely off Oxygen. She has not needed it for almost 6 months now! Hailey is still the happiest baby ever, nothing keeps her down. She absolutely loves taking a bath and listening to music. The only thing that she doesn't seem to like is wearing her eye patch. She has to wear it 6 hrs per day due to her premature retina. Another medical condition Hailey has is called 'HYPOPITITARISM'. She is missing her Pituitary gland. This is what tells a person to grow, to stay a certain body temp and to go through puberty; it also allows a person (woman) to conceive a child. She takes a hormone shot every night to replace this gland, so she can grow. But, there is no guarantee as to how much she will actually grow. It's all a "live and learn" experience!
Richard and Amy, Hailey's Parents