Child Of The Month

Naomi
by Kat Amundsen

Naomi is a beautiful brunette angel with a way with animals and brings out the best qualities in people. I had a normal pregnancy with Naomi, she took her sweet time coming and on December 7th, my labor was induced. I was full term and she was born after 13 hours of labor. I was pretty relaxed during labor and didn’t really get going until late that afternoon; the hard part was the last 4 hours. I scared my family that was there for the birth. I had a sheet covering me and so when I got too hot and kicked it off, my family saw that the bed was soaked in blood. The nurses were not expecting my labor, which had been pretty slow, to speed up as fast as it did that last 20 minutes. Everyone said, don’t push yet, the doctor is not here yet, hold on. I was pretty tired when I finally pushed. She was a good size baby, 7lbs 8 oz.

Naomi was not born with any rooting reflex and I had to teach her how to nurse. We went home on the third day. Naomi was losing weight, 1.5 oz each day. I was pretty concerned that she has not had a bowel movement yet. After 14 days of trying to keep her awake with ice-cold wet washcloths, she was readmitted to the NICU (Neonatal Intensive Care Unit) for “failure to thrive”. The nurses wanted to put her on formula and I came unglued. I didn’t want to have to fight with nipple confusion and breast milk refusal. The nurses were surprised, and tried to explain to me in condescending tones that “the baby needs milk” as if I was not producing any! "Ha," I said, "I will give you the breast milk, you can feed that", and they gave me a very tiny 4oz cup with very doubtful looks. I parked myself in the rocking chair in the NICU unit and proceeded to hand express 4 oz in about 2 minutes. Supply was not the problem. While they fed her the milk in a bottle, I sat in the reading room off from the Nursery and read the La Leche League pamphlets. What I found was that some premature babies are born before the rooting reflex develops. Some babies fold their tongue to the back of their throat and suck on that rather than latch on to the breast properly. I learned in that room that night that I had to force her jaw down to drop her tongue from the pallet of her mouth and get the nipple up over the tongue so that she could get the milk into her tummy so that she could start growing. I had to leave my little angel in the hospital that night just a few days before Christmas 1990, and go home to sleep without her. That night I realized that she might not be here on earth more than a year. After just one night in the hospital she got enough breast milk in her that she was able to have a full blown bowel movement and clear all the meconium out of her body. She got to go home and we started the long difficult process of teaching her to eat on a schedule, waking her up every 2 – 3 hours and feeding her so that she was getting regular feedings. Teaching her to nurse ‘properly’ was just the first thing that we found that made her unique. She was not born with any instincts. Diapers became scheduled, feedings were scheduled.

At 6 weeks, she was thriving but not smiling, not rolling over. She was not meeting the developmental milestones at 4 months so when we went to the NICU follow up clinic, the clincher was the visual tracking. She would not track visually or turn to unexpected sounds consistently. She would not turn to noises so she was referred to an audiologist. That test came back normal. She was referred to an ophthalmologist for her vision and that test came back normal. She was still pretty tiny and the pediatrician ordered bone development x-rays. They were conducted at 4 months and they showed that her bones were those of a 3 month old. Exhibiting a physical growth delay of 4 weeks at 16 weeks of age. She was orally and generally tactile defensive. Her muscles were floppy and hypotonic, she was referred to a neurologist and that test came back for additional testing at Shodair Genetics Hospital in Helena Montana.
Those blood tests were sent to Houston, Texas in December 1991 for analysis. The initial diagnosis hinted at Prader-Willi or Angelman Disorder. I was busy researching Prader-Willi and Angelman disorder and grew very concerned. Severe eating disorder was very scary. I was terrified. But rather than a deletion in genetic material, Naomi had additional material. Not just duplication, but a triplication of a segment of the chromosome. What did it mean, no one knew. She was one of 4 or 5 children known to have any abnormality in this region. There was no information in January 1992 when we got the diagnosis.
By this time she was 1 year old and after weekly physical therapy she was starting to crawl. She was weaned and drinking from a cup and eating finger food. All in all, she has a 50% delay in all areas. She was still on a schedule, she was not able to vocalize to get her needs met so I continued to get aid from physical therapist, speech therapists, occupational therapists, even enlisting swimming lessons to get her into the water. The water helped in the ability to tolerate different textures. She could only tolerate 100% cotton, diapers, clothes, blankets, everything. But in the water, she would touch rubber duckies, and foam turtles and plastic cups and lots of textures. It was wonderful, slowly she was making progress. One day when she was 18 months, we were in the front yard, she was on a cotton blanket watching me weeding the flowerbed, I had the water hose going, the yard was pretty much flooded, the grass was ankle deep in water. She crawled off the blanket and touched the grass - major accomplishment for her. She crawled through the water and grass to get to me. It was a wonderful transition for her. She took her first tentative steps at 22 months and was walking solidly by her second birthday, December 1992. Potty training was a nice idea but a totally unrealistic goal. We worked on the word “more” for food and drink needs. By the time she was 4 years old, she could say “more”, I was thrilled. She had been in preschool for years, and the therapy was paying off.
We moved to Texas in 1996 and she was in a classroom of 6 students and 3 adults. She had learned to identify the Texas flag and the state shape. We were making tremendous progress on self-help skills. Four years ago she was ordered by the courts in Montana to go for visitation with her biological father from Texas to Montana for the summer. So now she is not allowed to leave the county and I have to have all visitations in Montana and her sisters have to miss school to see her. Visitation is 3 hrs a day, 4 days a week, which makes me sick to my stomach. But I refuse to give up and go up as often as I can. She is growing and developing and I find that each day she is making progress. Or perhaps I am making progress in learning about her world.

Naomi has been visiting our world for some time now. And when stress gets to be too much, she would drift behind a veil and shut us out so that she could get some peace. I feel that she is an angel and she would simply slip off and commune with the other angels and then come back to us when she was ready. I felt lonesome when she would leave. I felt sad when she refused to make eye contact with me and put me in visual "time out". But I am patient and I am ready to love and hug her when she "returns". The more I am drawn into her world, the more I am aware that she retains everything. She takes in all the information and stores it like a computer. She has a very slow processor, somewhat like my old 8086 with a 10 GiG hard drive. She has shown me how much more complex that she is that I am now alternating between sheer awe and sheer terror at the magnitude of the situation.
For instance, she lives far away and can only talk to me on the phone most of the time. I had a baby 10 months ago. She has seen him for 3 months off and on in the last 10 months. She becomes very upset when we are talking about him. At first I thought that it was sibling rivalry, but I spoke with her last night and she told me that she misses him. She is worried about him when he cries. It hurts her heart that he is sad. She wants him to move his bed in her room so that he can be with her. She wants to come home to my house (sigh). I told her that baby Erik says that she is HIS Naomi, but I tell him that she is MY Naomi and he says HIS Naomi. She laughs hysterically with sure pure joy that we would fight over her.
Naomi has a tremendous understanding. She has poor communication skills, but the thoughts are going on in that head and heart of hers. My advice is never assume that the "processor" in our little angels is ever broken. The information is converted and translated several times in those brains, and the time that it takes is beyond most parents' attention span, so we miss the important answers / revelations. This for me has been such a phenomenally important revelation, not just for myself but for all parents of these displaced angels. I don't know how many parents realize how lucky we are to be chosen to care for these totally awesome little creatures! It is so hard for grandparents / outside family members to understand what is going on. The reason that THEY were not chosen is simply because they just do not have the right qualifications of PURE unconditional love that is so critical for the care of these angels. I can see into Naomi's world. I have been drawing her into my world for nearly 10 years, but lately she has been sharing her world with me. She has made an effort to come into mine, but she is opening hers up to me and that is so awe inspiring. I just want to share this information with you. These wonderful kids are "in there" and they are some of the most beautiful people that I have ever known.

About Naomi's family:
My name is Katherine (call me Kat). I am mother to Jasmine, Krystal, Naomi, and Erik. I am wife to Sverre (pronounced Svada). Sverre is a computer systems engineer at Compaq. I am a WAHM, I own my own business, making websites on the internet (http://www.ausome.com). Sverre and I met on the Internet in 1996. He lived in Norway and I lived in the US. We moved here and were married a year later. We have no pets, I travel too much and Sverre has no interest in caring for them. We live in Houston. In my former life, I received my bachelor’s degree in Forestry and I was a publication’s Editor. I am from Montana and spend 3 months total a year there. I watch movies incessantly, surf the net uncontrollably, and shop profusely. I am mouthy and opinionated but I hope that I am a good friend.
Erik is the sweetest baby that sleeps through the night and is so pretty with his golden auburn blonde curls. When Erik was born, he was kept in the nursery for 5 hours rather than with me because he could not warm up and his blood sugar was too low. From three days to six weeks he had pretty bad jaundice but no bili-light treatment. His face, and occasionally his arms turned blue, frequently. He has gastroesophageal reflux: the acid from his tummy was coming back up into his throat and irritating his heart and lungs. He had low oxygen levels in the blood, so they put him on an apnea monitor. They x-rayed his chest and found that his heart was enlarged due to irritations from the acid reflux. The whole problem was from lactose intolerance. I stopped consuming all dairy products and he is never sick. If I consume even one slice of cheese, he gets reflux all over again. We live off of Rice Dream Milk.
Jasmine and Krystal are identical twins - extremely gorgeous and too pretty for their own good. At 14 they are already 5 ft 7 and 140 lbs with long blonde curly hair. There was a complication and the second twin was born breach. Jasmine is ADHD and Bipolar. The Bipolar makes our life very interesting. She is like having a Pentium III 800 mHz computer with 1 Megabyte of RAM. She is a rapid cycler so she can go from Happy Happy Tigger to Super Super Sad Eeyore. Each day we medicate to find the Pooh within and help her have a good day.

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