Kaelyn – Age 4
Diagnosis-Down syndrome- heart defect, micro preemie
Kaelyn was born at 32 weeks weighing only 1 lb 11 oz. She was diagnosed in utero with Down syndrome, AV canal/tetralogy of fallot and Severe Intrautero Growth Restriction. At her 20 week ultrasound they could see her heart defect and suspected some sort of genetic disorder, so we opted to have an amniocentesis performed that day. Throughout the pregnancy Kaelyn failed to grow and develop so we spent many hours in the hospital monitoring her through non-stress tests and ultrasounds. Kaelyn was born via emergency C-Section because I developed a severe case of Eclampsia/HELPP and she was no longer passing the non-stress test.
After birth Kaelyn spent 105 days in the NICU before we were able to bring her home. Throughout this time she lived in an incubator and used oxygen, c-pap and a ventilator, depending on the severity of her condition. She was fed primarily through a NG-tube. At one point she was not doing very well and couldn’t keep her sats up so they did a procedure that ballooned open her tiny pulmonary artery. This was successful and helped her gain the strength to continue to grow and eventually come home.
At 8 months Kaelyn had open heart surgery to repair her major heart defects. They patched up the holes between her chambers and widened the pulmonary artery. Her surgery was successful and she spent two weeks recovering in the pediatric intensive care unit before coming home. Sometime in the future she will have to have her pulmonary artery widened again via open heart surgery. We are hoping that before that time there will be advancements that will allow this procedure to be done via catheter or something less invasive.
Kaelyn biggest struggle medically since heart surgery has been respiratory virus’s. For three years she was given Synagis vaccines to help prevent her from getting RSV. Though she never got RSV until her first year off of the shots, she was hospitalized multiple times with another respiratory viruses. These viruses are just so hard on her due to her tiny airways, therefore she requires high pressure oxygen to keep her saturation’s up. The only place to get these treatments are in the PICU.
Other tests, surgeries and treatments she has received include; ear tubes, adenoid and tonsillectomy, yearly echocardiogram and EKG, eye tests, blood draws, sleep studies and feeding and physical therapies.
Other diagnosis’s include, developmental delay, sleep apnea, near sighted ness, hypothyroidism, anemia, biotinidase deficiency, constipation, asthma and hearing loss. At four years old she is not walking, is non-verbal and due to oral aversion does not eat solid foods. Her primary source of nutrition comes through whole milk and carnation instant breakfast she drinks from a bottle. At four and a half she is about the size of a typical 2 year old, weighing about 22 lbs.
As a caregiver to Kaelyn our biggest struggle is the time we have had to watch our precious little girl suffer through sickness and pain. Since the second she was born she has been poked and prodded. We are very grateful for modern medicine and the amazing children’s hospital, because without it she would not be alive, but we hate to see her have to endure so much. Our biggest hope for Kaelyn is that she will continue to be the happy, easy going little girl she is. She has taught us so much about enjoying and celebrating the little things in life and we are so blessed to have been privileged to be her parents.
The biggest issue we have with Kaelyn’s education is the lack of communication between her teachers and us. We don’t really know what she is working on in school and only get to talk with her teachers a couple times a year. I wish they would send home more communication specific to the things they are working on and observing with her in the classroom setting.
Kaelyn is such a joy to have in our family. Although her medical background was a steep learning curve for us as first time parents, she has been the easiest little girl to raise. She loves music and spends lots of time meandering around the house playing with various musical toys. The iPad has been a great motivator for her growth motor skills and is the tool that finally got her to crawl and climb to standing. She loves being held by others and is very willing to make new friends, especially if you will sing in her ear. She doesn’t pay too much attention to other children, but she is more now than ever. Having her younger sister has been very motivating for her in acquiring new motor skills. She is very much a daddy’s girl and loves being spun and thrown into the air. We view ourselves as very lucky and blessed to have the honor of spending every day with our tiny little miracle girl. She is the light of our life and we couldn’t imagine our family without her.