Oct 19 2013
My daughter, Analeigh Rain, was born 14 weeks prematurely due to a premature rupture of membranes when I was 26 weeks along in my pregnancy. She was diagnosed with Chronic Lung Disease shortly after birth and at 4 months of age, a tracheotomy was performed due to respiratory failure. She was placed on full ventilator and oxygen support and finally came home after spending the first 6 months of her life in the NICU at ClearLakeRegionalMedicalCenter in Webster, TX. Soon after coming home, Analeigh began to thrive. She was bottle fed, learning to sit up with minimal support, was able to roll over from her back to stomach, babbled despite the trach, played with her toys, smiled and was learning to crawl. She was also being weaned on her oxygen and ventilator settings. She was a normal, happy baby with the exception of the trach and vent.
At 9 months of age, the unimaginable happened. After a typical day and an evening feeding, Analeigh became suddenly agitated. Her nurse tried consoling her but was unable to determine what was wrong. Her dad went into her room to check on her and almost immediately, she turned blue and stopped breathing. They put her in the crib and began CPR immediately but it quickly became evident that help was needed. I called 911 and during the ten minutes or so it took for paramedics to arrive, the nurse and I continued to perform CPR to no avail. She had no pulse, no life in her. Paramedics took over CPR efforts and moved her to the ambulance in our driveway. Another twenty minutes or so went by and we were told she was being transported to Children’s Memorial Hermann in Houston via life-flight and we should leave immediately to meet the transport team at the hospital.
Upon reaching the hospital, we learned that they lost her again during transport for approximately 5 more minutes but had since stabilized her. As soon as we were allowed to see her, it was evident to me that something was seriously wrong. My baby girl was no longer the same. She was non-responsive to any stimuli and we soon learned that she had suffered massive brain damage as a result of the prolonged lack of oxygen to the brain.
Analeigh is now 20 months old and has many new medical problems she did not have before. She had surgery to have a feeding tube inserted into her abdominal wall because she could no longer be bottle fed. She is now on many medications to treat seizures, high muscle tone, high blood pressure, severe acid reflux and has to undergo regular physical therapy and also vision therapy as she now suffers from Cortical Vision Impairment (CVI). She may never have the ability to eat, walk, speak or be without the trach and ventilator.
As far as her obvious likes and dislikes, well there aren’t any really. It all depends on what kind of day she’s having. Some days she likes it quiet and doesn’t like to be touched. Other days, it seems like the only way to calm her down is to touch her as much as possible. Since she doesn’t talk or communicate, we kind of have to judge her mood based on her heart rate, respiratory rate and how many seizures she’s had that day. There are hints sometimes like when she makes an ugly face when you touch her, but mostly it’s guesswork.
She is a beautiful baby girl who deserves only the best in life and she is loved and cared for by many. I hope someday she’ll get that miracle that every special needs parent prays for. Until then, we’re just doing the best we can and taking it one day at a time.
Thea M. Joy, Mom to Analeigh