Rachel Haw-Cheng Ngai Born August 4, 2003 @5:59PM 4 pounds 16.5 inches
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About Rachel...
Rachel was diagnosed with full Trisomy 18 the day after her birth. There were signs on the level II ultrasounds: large VSD (ventricular septal defect) and clenched fists (maybe more... we were informed of these two). Because of the timing (the level II u/s was performed @23 wks), no amnio was done to confirm the suspicion. None of the doctors prepared us for the possibility of a T18 baby. Rachel was induced @37.5 wks due to IUGR (intrauterine growth restriction). The induction went well and she was born on August 4, 2003 @5:59PM weighing a little over 4lbs and about 16.5 inches. A geneticist examined her the next day and informed us he was 99% certain Rachel is T18. Blood test confirmed this diagnosis 2 days later. Besides T18, Rachel has a large VSD with double outlet right ventricle. Other than that she currently has no other major physical problems. She has trouble sucking and swallowing and is being gavage fed through a NG (naso gastral) tube. At 6 months, Rachel was 8lbs...twice her birth weight. She battled her first illness, bronchitis turned into a nasty cold, just before her scheduled Gastrostomy (G-tube surgery). Other than that her major issues has been constipation, gas and spit ups. She's been on Lasix and Digoxin for her 7mm VSD since her 3rd month. She has excellent head control, tracks objects for a short period of time, loves to be kissed, loves music and dancing, loves bouncing, dislikes bath in general, but loves to have her hair washed. She started smiling at 5 months and smiles frequently when comfortable. Her bottom front teeth have started to come up. Rachel's doing extremely well at One Year Old. Weight gain had be very slow; only 2lbs in the last 6 months. She's up to 10lbs and 24.5 inches. Her constipation and gas problems resolved with the change of formula to Nutramigen after her G-tube surgery at 7 months. She continued to have occasional spit ups, but nothing to be alarm about. Another EchoCardiogram at 11 months showed a small to moderate ASD (astral septal defect) as well as the large VSD. The cardiologist said the ASD will be a good thing for pulmonary hypertension as it can act as a blow valve. It was decided that there will be no open heart surgery for Rachel. The issue will be reconsider if she requires surgery to survive. Developmentally, Rachel is severely behind; at 3-4 months. She can roll from side to side...on the brink of rolling on to the belly, but refused go all the way; sit up with assistance; laughs and giggles when tickled or kissed at the right spot. She's swinging her arms and kicking her legs more. She has just started to play with some toys that generate lights and sounds. She can be vocal with aaaahhhhh, eeeeeehhhhh, and gaaaaahhhhhh. She now has 4 teeth...3 on the bottom and the front one on top. Rachel receives physical therapy twice a week, speech therapy twice a month and special education once a week (to encourage cognitive skills). At 18 months, Rachel continues to amaze everyone. She's now 12lbs and 27 inches. There has been no major health issues...just a minor cold here and there. Rachel's been working really hard on sitting and enjoys the upright position. She splashes during bathtime, gives the sweetest and cutest smiles, yells when displeased and calls for attention. She's starting to reach...mostly for faces, but sometimes for a toy. She just received a pair of foot splints (AFO) and will be working on standing...doing big girl stuff! Rachel's spitups suddenly stopped when she was around 17 months, which is wonderful! She now has 6 teeth...4 on the bottom and two front ones on top...working on another one on the bottom. Rachel continues to receive physical therapy twice a week, speech therapy twice a month and special education once a week. At 2 years old, Rachel's almost 15lbs and 30 inches. She started school in the spring, but lasted only 6 weeks b/c she ended up with many illnesses...stomach viruses, colds, etc. She had her first battle with pneumonia which required intubation for a couple of days and a week of hospitalization; after which she was pulled from school and went back on home care. Rachel reached a major milestone (rollover) a week before her 2nd birthday. She can sit up pretty good with minimal assistance, loves to stand, reaches and grabs on small objects (into her mouth if it's close by), bites...esp Mommy's hand. She now has many teeth with molars coming. She's on 100% pediasure. Spit ups re-occurred after her illness with pneumonia. She receives PT 2x a week, OT 1x week, SE 2x week and ST 1x month. At 3 years old, Rachel is 22lbs 13oz and 34 inches tall. She aged out of Early Invention. Her services will be provided for by the local school district. We decided to keep her services at home rather than make her travel 45 miles to White Plains for school. All her therapists and services remain unchange. Rachel had no major illness this past year. She did have to deal with many viral infections over the winter. We discovered that she has alot of trouble with body temperature regulation. When she has a sweaty head, then she's nice and cool; when she doesn't, she's warm and cranky. The doctors think it's neurological and the meds will do more harm than good. This is the major reason for her erratic sleeping patterns as she doesn't sleep good when her body's too warm. Her other issue is spit up...at least once a day...more when ill. Developmental wise, she made some good strides. She can sit independently for a 10-15 min with occasional balance assistance, pushes herself against an object when standing, reaches for and swipes at toys. She receives PT 3x a week, OT 1x week, SE 3x week and ST 2x a week. At 4 years old, Rachel is about 26lbs and 36 inches tall. She had a wonderful year health wise. She came down with "something" (low grade temp, congestion, mucous) every month and always managed to fight it off in a day or two; did not even require any sick visit to the pediatrician. She continues to have reflux issues with daily spit ups. Rachel started school (45 miles away) at the Children's Rehabilation in May. She got sick and was out for a week in both June and July, but has been doing well since. Rachel receives all her therapies at school now. She's shown vast improvements in sitting, standing, grasping and sleeping since entering school. Rachel said "Mama" in Dec 2006 and a couple of times after that, but not with any consistancy. She said "Dada" in April 2007; Daddy was luck enough to capture it on video dada Rachel was born on the 7th day of the 7th month on the Chinese lunar calendar. The date of the annual meeting between The Cowherd and The Weaving Girl in Chinese Legends.
About the name...
Rachel (orig. Hebrew) an ewe or lamb
chosen because 2003 is year of the sheep in the Chinese lunar calendar
Haw lovely
Cheng clear, as in clear sky