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Christian Homes And Special Kids |
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Birth Parent's Line 1-800-266-9837 Contact CHASK 208-267-6246 |
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For Birth Parents
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Baby Sydney— born the last week of
October 2009 Editors note: Baby Sydney has been placed with a loving Christian family. Thank you everyone for your interest and prayers! Please view our Children waiting for adoption page.
Sydney is the most beautiful and kissable baby. She has the brightest blue eyes, cutest button nose, and the softest strawberry blonde hair. When she smiles, which to our disappointment is very limited, she makes your heart melt. She loves to cuddle and she loves to listen to music and nature sounds.” - present temporary care givers Sleeping Habits · Sydney sleeps well at night. She typically goes to bed for the evening between 9:00 p.m. and 10:00 p.m. and awakens between 3:00 a.m. and 4:00 a.m. to eat and have her diaper changed. She’s back down to bed in 30 minutes and will sleep for another 3 to 4 hours, waking up for the day between 7:00 a.m. and 7:30 a.m. · Sydney struggles to sleep during the day. She typically nods off for a cat nap between 9:00 a.m. and 9:30 a.m. and she will sleep for about 15 to 30 minutes. Her afternoon naptime is unpredictable and more difficult to achieve, but when she sleeps, she will sleep between 3 to 4 hours. We try to put her down for her nap at 11:30, but sometimes we aren’t successful in getting her to sleep until 2:30 p.m. or 3:00 p.m. It’s not uncommon for her to have another cat nap in the early evening either for about 15 minutes · Sydney loves her soothing machine. It’s a toy hanging on her cradle that plays lullabies, classical tunes, and nature sounds. She really loves all of the sounds, but the cricket noises seem to be her favorite. This toy, along with a musical seahorse are very helpful in getting her to sleep · Sydney currently sleeps comfortably in a large-sized cradle that is in our bedroom. We haven’t transitioned her to her crib yet, because we want to monitor her closely. She’s increasingly experiencing some reflux, so we want to make sure she doesn’t choke on any spit up or experience any other issues while she’s sleeping · As of her 2 month checkup on January 5, Sydney weighs 11 lbs 9 ounces and measures 23 inches long. We were told that these measurements equate to her being in the 50 – 60% of both weight and height Feeding Habits
· On average, Sydney eats 4 ounces of formula every 4 hours, except overnight when she’s sleeping. That being said, it’s not uncommon for Sydney to go off schedule during the day and have an additional 2 ounces of formula between · feedings (which can often times throw off her schedule). · Sydney eats a special formula called Alimentum, which is manufactured by Similac and readily available at many stores such as Target and Osco. At her one month checkup, her pediatrician switched her to Alimentum to help address what was thought at the time to be colic. Prior to this switch, Sydney was sent home at birth from the hospital with instructions to feed her soy formula. We are unsure why the hospital chose soy, but the hospital, Palos Community, is not adoption-friendly and would not allow us to visit or speak with the doctors about Sydney’s care · Sydney has extreme difficulty latching onto her bottle and feeding. It can take up to 30 minutes for her to finish eating. Her facial expressions and crying could easily be misinterpreted as her not being hungry. However, she requires a lot of patience to talk her through and soothe her into latching and eating. Most of the time, she cries during and after her feeding and it’s not uncommon for her to stop unexpectedly during her feeding and cry. An exception to this is her “3:00 a.m.” feedings, which tend to go fairly smoothly · Hoping for improvement, we’ve recently bought new bottles that have a thinner nipple, thinking that the bulbs on her Avent bottles were an interference. Unfortunately, that’s not the case and she’s still having latching problems with these new bottles. We are also introducing a more rapid flow nipple hoping to improve any frustration she may have with the amount of food she’s receiving. As a result, we have seen her increase her intake to 6 ounces of formula from time to time · Sydney signals when it’s time to burp her when she starts to blow bubbles, gurgles, or bite down on and twist the bottle’s nipple. She burps very nice unladylike burps and seems most comfortable being burped sitting upright on your lap · Over the past couple of weeks, Sydney appears to be experiencing reflux. She will spit up bile and often cries during these episodes
Disposition
· Overall, Sydney’s disposition isn’t happy. Her best time of the day is when she awakes in the morning at 7:00 a.m. until she takes her cat nap at 9:00 a.m. During this time, she is at her calmest and will smile from time to time. We try to optimize these 2 hours of the day as much as possible by playing her music, interacting with her on her playmate, doing exercises, singing to her, and other playtime interaction · Sydney is extremely fussy and quite often has major crying fits for no reason. Calming her takes time, patience, lots of cuddling, her favorite pacifier, and sometimes a soft blanket. It’s an exhausting process because what worked in the previous outburst doesn’t always work in the next outburst. We walk through many different soothing methods to calm her down, including walking with her, singing to her, whispering to her, patting her butt, sitting her up on our lap, holding her over our shoulder, laying her on her side and patting her butt or back, swaddling her up in a blanket, playing music, and rocking her in the rocking chair Clothing · Sydney sleeps in a sleeping sack that is sized for 0 – 9 months · Sydney wears a size 3 – 6 months · Sydney wears a size 1 diaper. · She poops once every other day and wets 6 to 8 times a day. She is getting increasingly agitated when she has a wet diaper and we always change her diaper before she eats. So far, she does not have any sensitivity to a particular brand or style of diaper or wipe. We’ve used Pampers and Huggies thus far. Medical Notes · Sydney was born full term, weighed 7 pounds 6 ounces. The head circumference at birth was 13 ½ inches which placed her at the 25 percentile. The child seemed irritable at 2 weeks. At her one month checkup she appeared normal. Concerned about a cold, she was seen 11 days later at which point her pediatrician noted that her head was enlarged. A head ultrasound showed what looked to be hydrocephalus · She was admitted to Comer Children’s Hospital, University of Chicago and a shunt to drain fluid from the brain was placed on December 16, 2009. Following that MRI and CAT scans were taken of the brain. The child has only islands of cortex present in the frontal and occipital and to some degree temporal regions. She has no septum pellucidum. There is a massive amount of fluid present in the brain. The brain stem and cerebellum appear normal. The head circumference prior to the shunt had increased to 41 centimeters considerably above the 98th percentile. · Sydney had an adverse reaction to both Vancomycin and Morphine while she was in the hospital · Sydney’s Neurosurgeon has requested that he monitor Sydney’s shunt every 2 months until she’s 1 year old and then annually thereafter. Her next appointment is on Thursday, January 28th . Any new information from that appointment will be shared Sydney’s shunt appears to be functioning at this time. She last saw her Neurosurgeon on December 28 and Dr. Rosen was pleased with her incisions’ healing progress, the softness of her soft spot, and the size and shape of her head. U of C has given us a booklet about caring for a child with a shunt, which includes symptoms to look for if Sydney starts to have issues. Because Sydney’s head is filled mostly with fluid, the setting on her shunt is set to the second highest setting at 2.0 on a 2.5 scale. The shunt settings begin at .5 and increase in increments of .5. Sydney’s shunt is magnetic, which means that she needs to stay away from magnets to avoid her shunt’s setting from misaligning. Most importantly, whenever Sydney has an MRI, which is highly magnetic, she needs to have her shunt reset immediately after the MRI to avoid it from draining too much fluid or too little fluid · On January 5, 2010, a pediatric neurologist was consulted. On that date Sydney’s head circumference was 40.5 centimeters which placed her right at the 98th percentile. She weighed 11 pounds 4 ounces, height 23 inches, heart rate 120, respiratory rate 26, blood pressure 114/46 crying. Lights were turned out to see if the baby would fix and follow. Her pupils worked very well and she did some limited fixing and following but not a full 180 degrees. Facial movements were symmetric. Tongue and palate were normal. Her tone was increased in all four extremities and she has a tendency to fist bilaterally. Her tone is increased in all four extremities and she has a tendency to fist bilaterally. Her tone is increased in upper motor neuron distribution in both upper and lower extremities. Deep tendon reflexes are brisk, but there is no clonus. No sign of a neurocutaneous disorder. When placed on her legs, she bears weight better what would be expected. She does not scissor and is not totally up on her toes however · Pediatric Neurologist’s Prognosis: Neurological development very abnormal. Unlikely that she will walk, talk, or be able to take care of herself with activities of daily living. Epilepsy likely to be very common and should expect cerebral palsy. It is expected that she will be able to move her arms and legs, sit up and be able to eat, possibly with a G tube · Sydney’s doctors said that she most likely will need to begin therapy at around 4 months, when she starts to miss her development milestones. Sydney will need physical therapy to help prevent her muscles from stiffening and she will need speech therapy to address potential feeding issues. She will also need occupational therapy. She is not holding toys like a 3 month old should and is exhibiting difficulty in latching onto her bottles and feeding calmly · As per her formerly prospective adoptive parents. “Sydney functions like a 6 week old baby at 13 weeks of age. According to the doctors and published books on baby development, she is starting to fall behind normal development. Her movement is still jerky and erratic instead of responsive. She can grasp objects, but does not reach for them. Her legs kick sporadically. She can smile, but · doesn’t smile interactively. She doesn’t interact or react to facial expressions. Her “crying language” is not clear. She can cry for no reason. She cries in the middle of a feeding, cries after a feeding, and she can stop crying just as quickly. Her hands remain clinched in a fist instead of open. She does not explore with her hands, and she does not put her hands or fingers in her mouth and she often stares into the distance. By themselves, none of these deficiencies is a problem, but together they add up. They reinforce what the doctors have told us that her development will be extremely impaired and that sitting up may be her biggest accomplishment. She is getting bigger and getting harder to handle.”
Additional Non-Medical Information · Sydney was placed with her prospective adoptive parents at 2 days old. They are withdrawing from adoption and would like child to be placed with other caregiver as soon as possible (ideally within the next few weeks) · The birth mother describes herself and appears to be healthy. She had one prior birth and is not aware of any family medical history of neurological problems. · She had no information to disclose about the birth father and nothing is known about him · The birth mother is not aware of the child’s medical issues · The adoption agency, Journeys of the Heart, has applied for Illinois Medicaid and has received verbal approval that he child is approved. · The adoption agency applied for and on January 25, 2010, received an amended birth certificate which is needed to apply for a social security number which is needed to apply for SSI (Supplemental Security Income disability benefits). · The adoption agency applied for the social security card and SSI on January 26, 2010 · The adoption agency will consent to placement with/adoption/guardianship by appropriate caregiver . The agency is seeking someone who will take permanent legal guardianship – ideally through adoption. |
