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01-22-2007, 10:39 PM
[left:528809c0ce]http://www.cherubs-cdh.org/Album/new/nagurski-naomi.jpg[/left:528809c0ce]Naomi is my daughter. She came into the world and into our waiting arms. As I looked into my newborn’s eyes for the first time, I felt as though I stared straight into her soul and she into mine. Such beautiful, dark, Navajo eyes, just like her grandpa’s.
I nursed her and Ben and I took turns holding her, and giving her messages of welcome. I was so relieved to see her. As an expectant mother, I knew, all too well that not every baby is born healthy. My son Gabriel has Downs Syndrome, and we’ve had quite an adventure. So I was really hopeful during my pregnancy that this baby would be alright. It was so good to have her here with us and such a relief to see that she looked fine.
Her Indian name, Hiishch’I (Sunflower), was decided on before she was even born. We went home to Ben’s village quite often during the early summer months before Naomi was born. After seeing some dances, the whole family would all sit around the parent’s kitchen table after eating stew with Grandma’s oven bread and talk. We’d talk about all kinds of things, the past, the future, the children. Sometimes we’d talk about the new baby. Sunflowers were blooming everywhere. Naomi’s Grandma thought it was such a beautiful name which brought to mind all the wonders of summer, the long days and warm nights, tall corn rustling in the breeze, feast days and the rain that falls. A sunflower is the flower that happiness grows and so Naomi was named after them.
She came into the world in the usual way and we were tickled to have her here. After the midwife checked her, the nurses took Naomi to the nursery to clean her up and I was taken to our room in the OB ward to rest and wait for her. Ben went home for the night excited to bring the news of Naomi’s birth to our parents and our children, Kamani, Gabriel and Jericho who were all waiting at home. I must have fallen asleep listening to my roommate cooing to her baby, so excited to have my baby in my arms soon.
Someone was tapping me on the shoulder. I sat up in bed all bleary-eyed. It was a young nurse with a pink jacket and a stethoscope around her neck. She said she was from the newborn ICU. I wondered aloud," What do you mean, the newborn ICU?" This time I'd had a healthy baby, or so I thought. And then I thought, "Oh, no, not again". She explained that when they tried to check Naomi's heartbeat, they couldn't find her heart (my heart sunk). So they did a chest X-ray and found that her stomach and some other organs had slipped up high into her chest cavity through what they thought might be a hole in her diaphragm. So they pumped her stomach because I had nursed her and then stabilized her (my stomach suddenly felt sick). She reassured me that Naomi seemed so healthy since she weighed 8 pounds, 15 ounces but they were concerned. They thought she was born with a diaphragmatic hernia, and it could be very serious. I asked if I could see my baby. The nurse who’d helped me settle in brought me a wheelchair and wheeled me into another world. I felt so disconnected and unsettled, it was like a dream.
I remember so many wires and things, it was hard to find my baby underneath all of them. I saw the pain in my baby's eyes, those beautiful eyes, and was powerless to help. I wanted to pick her up, hold her close and make everything better. I was helpless. I shuddered. I stayed a long time, looking at her. I wanted to touch her, but wasn't sure. I felt like I was out of my body, watching this happen from afar. I went back to my room in the OB ward and called Ben, waking him to tell him the news. I curled up in my hospital bed, listening to the sounds of a mother in the bed next to me nursing and singing to her newborn baby and at some point, I fell asleep.
I spent most of Sunday sitting in a rocking chair next to Naomi's crib watching her sleep. I don't really remember if I got to hold her, but I don't think so. I really don't remember much about that day, it was a blur. I know I pumped my breasts every two hours, around the clock, in the "pump room" in NBICU, freezing it 'in little bottles and storing it in the hospital freezer. Since Naomi couldn't have anything by mouth, I had to ensure my milk supply by pumping as often as I would have been feeding her. I'm grateful to the parents who serve on the pediatric advisory board and worked with hospital staff to make the room a comfortable one. It turned out to be the only place I could be alone with my thoughts. Making bottles of milk for Naomi every couple of hours was somehow therapeutic, I felt like I was doing something to help her, but I longed to hold her in my arms and feed her myself. I was learning the routine of the unit, how to properly scrub my hands and nails before entering, and what goes on at different times of the day. I was also waiting to go down to the OB area to have a tubal done. There were too many births that day, so I had to be rescheduled for tomorrow.
Ben spent the day going back and forth from home to the hospital, checking on me and the baby, while at the same time, caring for the children at home. He also had the task of telling our parents and the children that Naomi wasn't as healthy as we'd hoped and the doctors were going to help her get better before we could bring her home.
A neonatologist approached me and said they were pleased with Naomi's status. Babies born with diaphragmatic hernias are typically very sick babies, unable to breathe, but Naomi appeared to have both lungs functioning,, but her stomach and possibly also her intestines were up in her chest, displacing her heart and lungs. But she was a nice weight and looked good. They were waiting for surgical staff to evaluate her so we could repair her diaphragm, placing her stomach and other organs in their correct positions. They were optimistic that once these repairs were done, Naomi would grow and develop and be just fine. Five minutes spent with this doctor helped reassure me, give me information and help me understand my baby's condition and helped me put things into perspective.
Monday morning, the pediatric radiologist and surgeons decided it was necessary to operate on Naomi that afternoon. Ben was juggling children and us at the hospital. I was trying to juggle my classes and a decision as to whether or not do have my tubal done. I decided to wait, and the spinal tap needle used during the birth was removed from my back since I didn't need it for my tubal, and I was finally able to shower for the first time. As I visited Naomi, a surgical resident brought me forms to sign to consent to surgery. He seemed in such a hurry, reading off instructions to me. When I read that one of the risks was death, reality hit and I got that creepy feeling, you know the one you get when you see police lights in your rearview mirror. He rushed off once the papers were signed, and they prepared Naomi to go to surgery. I was also trying to arrange for a breast pump because I was being discharged and needed to continue pumping my milk while Naomi couldn't eat and was hospitalized. I was paged by the surgeon who was going to do the operation. She was the chief of surgery at the hospital and said a few things about the procedure, told me not to worry because "we do this all the time". I felt unsettled, scared and so sad to see my baby being hurt and in pain. The surgeon didn't understand.
Ben and I watched them whisk Naomi by, in her little see-through crib with the IV and monitors rolling down the hall. We waited on the bench in the hallway, holding hands and looking out the window. I remember something Ben said during a break in the silence about how she'll be just fine. After the surgeons did the operation, she'd come home, heal and we'd tell her about it someday.
A few hours later the little see-through crib with Naomi and even more equipment and lots of people in scrubs burst through the double doors, whisked by and back to a bay in the newborn ICU. The surgeon came to speak to us. She stood facing us and explained the technical aspects of the surgical procedures she had done and said she felt confident that Naomi would do well. She seemed in a hurry and went on her way. They made an incision and collapsed Naomi’s lung. Then they moved her spleen, intestines and stomach down into Naomi's abdomen, and repaired her hernia by sewing her diaphragm on the left side near the esophagus, where there was a hole. After surgery, she was able to breathe on her own. We wanted to see Naomi and touch her to make sure she was ok. Once in NBICU, we scrubbed up and put on hairnets and yellow coats to cover our clothes.
She was swollen and sleeping under even more wires and things. There was a tube coming out of her chest and an IV line coming out of her forehead, another IV in her foot, oxygen and heart monitors, tubes down her nose... it was so hard to see her tiny little body like that.
We stayed with her until the doctors came to do rounds and Ben went home to tell everyone that things went well. We were hopeful that Naomi's surgery was successful, her stomach and other organs were now in her abdomen, she would now heal and soon we would bring her home.
I returned to my room and hospital routine for the evening and prepared to be discharged in the morning. I was going home without my baby, but wanted to be home with my family. I missed my children so much. Before I left I had to endure the baby class for moms, which is required before discharge, you know, the one where they teach you how to care for your baby now that you’re going home. It was so hard because all the other moms had their babies with them as I sat there with empty arms. I don't remember a thing they "taught" us, but I remember the emptiness I felt as if it were yesterday.
Once home, I walked into my room and saw the empty crib there waiting. I wanted my baby so badly, I ached. But there was no time to grieve. The next few weeks were filled with juggling life at home with our family and being at the hospital with Naomi. Ben had to go back to work so I had to arrange for childcare for Kamani, Gabriel, and Jericho in order to spend time at the hospital with Naomi. I went every chance I could, several times a day, usually. I would hold her and rock her and tell her stories. I got to change her diapers a few times and then one evening they said it would be OK to give her a bath! It felt so good to take care of her, it helped me feel like her mom. Then one day the docs said it was time to feed Naomi some of my milk! It had to be measured, just a small amount, so I had to give it to her through a bottle. I was excited and terrified at the same time. But she drank it all up, so a few hours later they let me give her another bottle, this time with a bit more in it and she drank it all up too. We did this a few more times that day. The next day I was allowed to nurse her. We found a way to position her to make allowances for all the wires and things, then I held her in my arms and we nursed. I rocked and sang and we both felt so good inside.
Now that I was nursing the schedule got much more intense since I now had to be at the hospital every two hours. There was a lot of pressure because if I missed any feedings, it would be replaced by a bottle-feeding and they warned me that might mean that Naomi might come to prefer the bottle,
Then one day it happened. We got word that Naomi would be discharged soon. We were going home! At the appointed time, Ben brought the children so we could all bring Naomi home together. Everyone scrubbed up and put on yellow hats and hospital coats and after a mini lesson in CPR and incision care (the NBICU version of the baby care class) we gathered up Naomi, feeling so good that she was healing and would now begin her life with us.
.Coming home meant all those adjustments families typically face when bringing home a newborn. New routines, sibling issues and a lack of sleep are all part of what we expect with a new baby. We had all really been through so much. Our older children had missed me, were worried and didn't know what to expect. Ben and I were reeling from the reality of Naomi's condition, so tired and trying so hard to be all things to everybody. Naomi had been through so much. She wanted to be held all the time so I carried her in a sling so she cried less. We also wrapped her up in a receiving blanket and laced her up in a Navajo cradleboard when she slept because we could prop her up. It supported her stomach snugly and was great for rocking her to sleep. But she spit up a lot. And it seemed that she suddenly started spitting up every time I fed her. I would nurse her on my lap and up would come the milk, all over us, like a garden hose, just pouring out. Reality was setting in that something wasn’t right and we had to go back to the doctor.
When I heard the surgeons voice on the answering machine, I got that creepy feeling again. I just knew something was really wrong or she would have had a nurse call. The results of the barium swallow showed that Naomi's stomach was rising up into her chest and was positioned so that she was refluxing all her feedings. I needed to bring Naomi back to the hospital that evening because she needed to have another surgery done the next morning. The plan was to make an incision along the same one used before, check the repair on her diaphragm and this time they would also do a nissen Fundoplication (use the stomach itself and sort of wrap it in a knot at the top to keep the food down) and then insert a g-tube (a feeding tube) in her stomach (so that the scar tissue would help anchor the stomach into place, and also in case she needed it for feeding purposes).
Even though I had sensed that Naomi wasn't healing properly and deep down, maybe I even suspected another surgery was necessary, I heard myself gasp with surprise at this news. Naomi was five weeks old. We called Ben's parents and they drove in from the pueblo and we talked. It was decided that they would spend the night so Ben could take Naomi and I to the hospital. I would stay with Naomi until she was ready to come home after the surgery. Grandpa and Grandma would stay with the children so Ben could go to work.
We were admitted into the pediatric sub-acute care unit (PSAC). I was familiar with the routine from my previous stays with my other children. Lab work, IV's, procedures which cause pain to my children (such as needle sticks) are probably the hardest time for me. Every instinct I have, every cell and neuron in my brain wants me to protect my children and keep them safe. I felt so helpless holding Naomi down as she screamed and cried while the nurses worked at getting the IV line in. It took three different people five tries to get the needle in correctly. Her veins were so tiny. I put my finger into her little hand, stroked her hair and talked to her. She cried so hard that her hair was soaked from sweating and she kept hiccupping long after she fell asleep.
I made myself a little bed of blankets and since Naomi couldn't eat before surgery (and wouldn't be able to after surgery for quite awhile) I made my way to the "pump room" to begin the routine of pumping my milk to maintain the supply until Naomi was able to nurse again. This time the pump was located in a closet filled with diapers and other supplies. There was a narrow path from the door to a chair and table where the pump was. Some of the nurses have since made the room homey and comfortable, but then it was uncomfortable and not very private since people sometimes unlocked the door to come and get supplies out. I didn’t have a place to be alone with my thoughts.
Our room was filled with the night sounds of a pediatric hospital ward. The curtains around Naomi's crib were our walls. The machines were making their sounds, beep, beep, beep; hissssssssss; dong, dong, dong. Babies were crying and whimpering down the hall. While it was still dark, someone pushed the curtain aside and said it was time to take Naomi down to the O.R. I hold her in my arms, pulling the IV pole along as we are escorted through the hallways. We get into an elevator I'd never been in before. It goes down, the elevator door opens and there we are standing right in front of the operating room. I hold Naomi close and kiss her. We step out of the elevator and are greeted by a young Asian man in green scrubs, a stethoscope and green shoe covers. His mask is down around his neck. He smiles and introduces himself as the anesthesiologist. Someone interrupts and has me sign some papers. He tells me it's time to take Naomi now and says he'll take good care of her. I kiss her one more time and place her in his arms. He pulls up his mask and goes through the big double doors with Naomi. As the doors close behind them my mind is screaming nooooooo!, but I stand there and say nothing.
That morning has repeated itself over and over again in my dreams ever since. I was escorted to a waiting room crowded with people seated in chairs connected in rows. It reminded me of an airport. The tv was on and some children were playing on the floor. Ben and I sat together and waited. It was too noisy and busy to talk so we just held hands. After three or four hours the surgeon came to the door and called us out. We stood in the hallway as she again explained the technical aspects of the surgery. After she made the incision, they found a lot of scar tissue from the previous surgery and had to carefully cut it away. Naomi's liver and spleen had stuck together since the last operation and needed to be gently separated. The repair to the diaphragm appeared to be holding so they did the nissen to wrap her stomach and inserted the g-tube. This time she felt confident that Naomi's hernia was repaired.
Naomi was sleeping when we first saw her. She was so swollen, her face and everything. I didn't realize she would look so bad and I heard myself gasp as my heart skipped a beat. She had all the same tubes and wires as the first surgery and this time she had a tube coming out of her stomach. Ben put his arm around me as we each held one of her little hands.
For the next couple of weeks Ben juggled the children, work and visiting us. I stayed with Naomi in the hospital, caring for her as she recuperated. Ben and I would switch places for about an hour each evening so he could spend time with Naomi and I could go home to spend time with the children. We were taught how to care for her g-tube (in addition to her incision). The clear plastic tube came out of her stomach and hung down about four inches. It had gauze and tape wrapped around it where it came out of her skin and the other end had a plug stuck in it. Since Naomi could no longer burp( a result of the surgery) we had to unplug the tube to let the air out of her stomach. We also had to flush it with a syringe of water several times a day. I also needed to continue pumping my milk every couple of hours to maintain the supply. I found a way to lay her on her cradleboard and lace her up, making room for all the wires and tubes coming out of her body. Some of the hospital staff expressed concern about it, but Naomi really liked it, the cradleboard brought her much comfort, and soon they were helping me lace her up when she cried. Our family pediatrician who works in the Indian hospital next door made time to stop in and see us often. It was very comforting to see a familiar face and he was always willing to answer questions about things we didn't understand.
Time passed and Naomi began healing and soon it was time for her to begin nursing again. Just like before, we started with small measured amounts in a bottle, and after a few days she was nursing again. Soon, she was home again. Naomi was eight weeks old now. We were hopeful that she would heal and we again began to adjust to the routines and issues we now faced as a family.
It was now autumn and Naomi's checkups had gone well. Her incision had healed nicely, but her g-tube needed to be cauterized a couple of times because tissue was growing up around it. Since she wasn't using it for feeding, the surgeon had it removed six weeks after the surgery. I remember leaving clinic that day feeling as though a ton of bricks had been lifted off my shoulders. Naomi had been freed of all her tubes and plastic things. She was all baby. Her next appointment wasn't for six months! My insides actually fluttered.
A week later those feelings crashed to the ground when Naomi vomited again. The next morning, on Halloween, we were back in the hospital for a barium swallow. It revealed that Naomi was refluxing again. It appeared that the nissen had come undone and Naomi’s stomach was moving back up into her chest again. The surgeon drew some pictures on the white paper covering the examination table and tried to explain that another surgery needed to be done. But she said it would be best to wait as long as possible because Naomi was so small and there was simply not enough tissue inside to sew the repair. We needed to wait for Naomi to grow some for the surgery to have a chance of being successful, but waiting too long could be dangerous. When I asked the surgeon for her estimate on what window of time was likely she compared it to her stocks, when to buy, when to sell. She still just didn't understand.
It was a long, anxious winter. Naomi cried a lot and she spit up a lot. But I kept nursing her and she was growing. But I worried because she couldn't roll over, she couldn't sit up for very long, and she wouldn't lay on her stomach at all. She also cried constantly when she was in the carseat. When I called to inquire about early intervention services, I was told that she probably wouldn't be eligible. Through another parent, I learned that the hospital had a special baby clinic that could evaluate Naomi and give us ideas on how to help her. It took a couple of months and a few phone calls to get an appointment, but the feedback they gave us was helpful. They listened to our concerns and helped us seek out support and services we asked for. They put us in contact with a massage therapist who visited us a couple of times at home and once in the hospital to teach us massage techniques to help Naomi cope with the pain and discomfort.
As Naomi seemed to be getting sicker, I was becoming more and more anxious. I called a pediatrician I remembered who had been very supportive when Gabriel had been hospitalized often. I told him about Naomi's impending surgery and that I felt I had the support of our pediatrician from the Indian hospital, but I needed a friend at the "big" hospital. He invited me over for lunch in the cafeteria. He bought my three-year-old son a hot dog and as we talked, I shared my fears and he offered support and information. The partnership we formed has strengthened our family and has enabled us to make difficult decisions and work through things together.
It was during this time that we began contacting relatives hoping to locate a medicine man or native healer who could possibly help Naomi. Ben's pueblo relatives from his mom's family really tried to help, but there was no one alive in the village who did that kind of thing anymore. So Ben's dad began asking his relatives out on the Navajo reservation. All we could do was wait and hope.
Spring arrived and an X-ray revealed that Naomi's stomach had moved so far up into her chest, it was considered an emergency situation. It was time to operate again. Naomi was nearly eight months old. We arrived at the hospital the morning of the surgery, and again it took several sticks to get the IV in. As I handed Naomi over to the stranger in green scrubs, I realized that I may never get to hold her again. The surgery took six hours, not three. I began pacing the halls after five hours with no word on how she was doing. Then I was approached by a resident I did not know, who told me that the surgeon would like to speak with me in a room near the OR. I felt sick all over and for a few awful moments, I thought Naomi hadn't survived the operation. I resisted going into the little room and waited until I saw the surgeon come down the hall. She didn't understand why I was worried and said the surgery was difficult and wanted to speak with me 'in private. Naomi was doing ok, but wasn't out of danger yet. There was an awful lot of scar tissue from the previous two surgeries. The surgeon said that she's had to re-repair surgeries like this before, but had never seen one that had "blown apart" so badly. The surgical nurse said that it got "kind of hairy for a while". They redid the nissen, this time using half the stomach in a method called a Thal modification and this time they used gore-tex to sew a patch on Naomi's diaphragm and they put another g-tube in her stomach, this time they used a "button" made of plastic which lays flush against the skin instead of the tube. Since the surgery was more difficult than expected, Naomi was admitted into pediatric ICU instead of SAC like the last time.
Again I was surprised to see how swollen and how awful my baby looked. This time there were more monitors, tubes, wires and plastic things than ever. Sometimes Naomi opened her eyes and whimpered, trying to cry. I rubbed her thigh (the only place I could reach) and talked to her and she would fall back to sleep. She seemed to be in such pain. We were transferred to the SAC unit a couple of days later, where Naomi recovered for a couple of weeks. We were back in our hospital routine again. Ben juggling work, the children (with help from his parents) and visits to the hospital. I stayed at the hospital, maintaining my milk supply and trading places with Ben once a day to go home for an hour or so. It was Easter time and the night before I stayed home long enough to color eggs with the children and make a pot of pueblo Easter pudding to put in the oven over night, so they'd awaken to familiar smells on Easter morning.
Naomi was recovering slowly. This surgery was much more difficult on her than the previous ones had been. Then she began to spike a fever. I worried that something was wrong with the patch and maybe her body was rejecting it. The doctors were sure it was probably something minor like an ear infection and prescribed antibiotics. The fever stopped in a couple of days and about two weeks after the surgery, it was time to try feeding Naomi small amounts of my milk. At first they tried to feed her with a pump hooked up to her g-tube, but Naomi cried and kicked the tube out, so that we had to go down to X-ray to reinsert her tube back into her stomach. After that they decided to let Naomi nurse. Sometimes she retched after I fed her but she didn't spit up anything. Soon she was nursing again and she improved enough so that we were able to go home .... but the fevers persisted. For the next eight weeks, every time the antibiotics ran out, Naomi would get a very high fever. She was admitted to the hospital and blood tests showed high white blood cell counts, indicating an infection, but they couldn't figure out where the infection was coming from. They sent us home with more antibiotics.
On the Friday evening before Memorial Day, Naomi had a fever of 104, so I called the hospital and was connected to the resident "on call". He seemed busy and suggested that I go to a drug store and get a refill on the antibiotics and call the surgeon on Tuesday. I was worried because the fevers had persisted for so long. I didn't know what to do. Ben and I talked and we decided to call our friend the pediatrician at home. He advised us to take Naomi into the hospital to have a CBC blood test done. It revealed a white blood cell count of 48,000 indicating a major infection so Naomi was admitted again. They wanted to do a CT scan and needed to have an IV in place. They stuck Naomi eight times and couldn't get a line into her veins. She cried so much, I cried with her and I wanted to take her home. They decided to do the scan without the IV. The next morning they decided to surgically implant a Broviac line, a central IV line, so we could take Naomi home and give her IV antibiotics there. The first line was placed near her groin and was difficult to care for, so Naomi was taken to the OR a second time that week and a new central line was inserted in her neck and came out of her chest. They did a test called an idiom scan to try to locate the infection but since antibiotics had been given the scan didn't show anything (they suspect that the gore-tex patch was the source of the infection, though).
Ben's parents stayed with the children again while I stayed in the hospital with Naomi and Ben went to work. Grandpa had found a medicine man on the reservation near his home who was willing to pray for Naomi and do some things for her. Since she wasn't well enough to travel, they asked us to gather together the clothes Naomi wore that day and so while Grandma stayed with the children, Grandpa made the trip back to Arizona to take the things to his brother who would take them to the medicine man. We had much hope that the prayers and good thoughts would help Naomi heal.
When the fever stopped we brought Naomi home and we were taught how to administer IV medications. We had to flush the line, hook up the IV medicine and let it dispense for about an hour, then disconnect the medicine and put other stuff in the line to help it clot. We had to do this twice a day for at least six weeks. The supplies were delivered in a huge box once a week and a home nurse would come twice a week to change all the bandages and check the IV site.
Naomi began to be afraid of everyone outside our family, the home nurses looked just like anyone of Gabriel's therapists or friends who came to visit. They didn't wear uniforms or badges so Naomi couldn't tell who was who anymore. Before, medical procedures had their own place, in the hospital, but now even home became unsure and unsafe to her. We carried her all the time so she wouldn't cry, but she seemed unhappy, so I called & asked about early intervention services and this time Naomi was eligible. She was now almost eleven months old and wasn't crawling, or able to do many things like get from sitting to other positions and she didn't make many sounds. Her eating was also concerning to us. She ate such a little bit & only foods that were soft and easy to swallow; figured it was because her stomach hurt so much that she didn't try to eat or move around much.
We have developed a nice partnership with our interventionist. She is a good listener and works on helping our family reach goals we have set for ourselves. She has arranged for Naomi to receive services at a local childcare center so that Naomi has the opportunity to interact with her same aged peers. I am struggling with how to meet the needs of all my children and still have room for a typical family life. There are times when as many as eleven therapists and other service providers are seeing our children weekly. My dreams of ballet lessons, soccer teams and little league have been replaced by the reality of PT, OT , visceral manipulation and speech therapy.
In July, just before Naomi's first birthday, her central line was removed. The fevers had stopped. We began the task of healing the emotional scars felt by everyone in our family. We know that Naomi still faces the possibility of more surgeries. The nissen may come undone again or the gore-tex patch may stretch and eventually tear as she grows. Naomi has been admitted to the hospital on a few occasions and had ear surgery to put tubes in to help with her recurrent ear infections. One particularly difficult episode occurred when the scar tissue caused a bowel obstruction, which made Naomi retch and vomit (her own poop) for about sixteen hours until it resolved itself. We are well aware that things like this can happen without warning, but we try to focus on the fact that we are all healing together. The effects of Naomi's medical condition touched all of our lives. We each try to find our place, discover our roles and learn ways to cope with and understand our feelings. That process continues today.
Written by Naomi's mom, Lisa Nagurski (New Mexico)
2000
I nursed her and Ben and I took turns holding her, and giving her messages of welcome. I was so relieved to see her. As an expectant mother, I knew, all too well that not every baby is born healthy. My son Gabriel has Downs Syndrome, and we’ve had quite an adventure. So I was really hopeful during my pregnancy that this baby would be alright. It was so good to have her here with us and such a relief to see that she looked fine.
Her Indian name, Hiishch’I (Sunflower), was decided on before she was even born. We went home to Ben’s village quite often during the early summer months before Naomi was born. After seeing some dances, the whole family would all sit around the parent’s kitchen table after eating stew with Grandma’s oven bread and talk. We’d talk about all kinds of things, the past, the future, the children. Sometimes we’d talk about the new baby. Sunflowers were blooming everywhere. Naomi’s Grandma thought it was such a beautiful name which brought to mind all the wonders of summer, the long days and warm nights, tall corn rustling in the breeze, feast days and the rain that falls. A sunflower is the flower that happiness grows and so Naomi was named after them.
She came into the world in the usual way and we were tickled to have her here. After the midwife checked her, the nurses took Naomi to the nursery to clean her up and I was taken to our room in the OB ward to rest and wait for her. Ben went home for the night excited to bring the news of Naomi’s birth to our parents and our children, Kamani, Gabriel and Jericho who were all waiting at home. I must have fallen asleep listening to my roommate cooing to her baby, so excited to have my baby in my arms soon.
Someone was tapping me on the shoulder. I sat up in bed all bleary-eyed. It was a young nurse with a pink jacket and a stethoscope around her neck. She said she was from the newborn ICU. I wondered aloud," What do you mean, the newborn ICU?" This time I'd had a healthy baby, or so I thought. And then I thought, "Oh, no, not again". She explained that when they tried to check Naomi's heartbeat, they couldn't find her heart (my heart sunk). So they did a chest X-ray and found that her stomach and some other organs had slipped up high into her chest cavity through what they thought might be a hole in her diaphragm. So they pumped her stomach because I had nursed her and then stabilized her (my stomach suddenly felt sick). She reassured me that Naomi seemed so healthy since she weighed 8 pounds, 15 ounces but they were concerned. They thought she was born with a diaphragmatic hernia, and it could be very serious. I asked if I could see my baby. The nurse who’d helped me settle in brought me a wheelchair and wheeled me into another world. I felt so disconnected and unsettled, it was like a dream.
I remember so many wires and things, it was hard to find my baby underneath all of them. I saw the pain in my baby's eyes, those beautiful eyes, and was powerless to help. I wanted to pick her up, hold her close and make everything better. I was helpless. I shuddered. I stayed a long time, looking at her. I wanted to touch her, but wasn't sure. I felt like I was out of my body, watching this happen from afar. I went back to my room in the OB ward and called Ben, waking him to tell him the news. I curled up in my hospital bed, listening to the sounds of a mother in the bed next to me nursing and singing to her newborn baby and at some point, I fell asleep.
I spent most of Sunday sitting in a rocking chair next to Naomi's crib watching her sleep. I don't really remember if I got to hold her, but I don't think so. I really don't remember much about that day, it was a blur. I know I pumped my breasts every two hours, around the clock, in the "pump room" in NBICU, freezing it 'in little bottles and storing it in the hospital freezer. Since Naomi couldn't have anything by mouth, I had to ensure my milk supply by pumping as often as I would have been feeding her. I'm grateful to the parents who serve on the pediatric advisory board and worked with hospital staff to make the room a comfortable one. It turned out to be the only place I could be alone with my thoughts. Making bottles of milk for Naomi every couple of hours was somehow therapeutic, I felt like I was doing something to help her, but I longed to hold her in my arms and feed her myself. I was learning the routine of the unit, how to properly scrub my hands and nails before entering, and what goes on at different times of the day. I was also waiting to go down to the OB area to have a tubal done. There were too many births that day, so I had to be rescheduled for tomorrow.
Ben spent the day going back and forth from home to the hospital, checking on me and the baby, while at the same time, caring for the children at home. He also had the task of telling our parents and the children that Naomi wasn't as healthy as we'd hoped and the doctors were going to help her get better before we could bring her home.
A neonatologist approached me and said they were pleased with Naomi's status. Babies born with diaphragmatic hernias are typically very sick babies, unable to breathe, but Naomi appeared to have both lungs functioning,, but her stomach and possibly also her intestines were up in her chest, displacing her heart and lungs. But she was a nice weight and looked good. They were waiting for surgical staff to evaluate her so we could repair her diaphragm, placing her stomach and other organs in their correct positions. They were optimistic that once these repairs were done, Naomi would grow and develop and be just fine. Five minutes spent with this doctor helped reassure me, give me information and help me understand my baby's condition and helped me put things into perspective.
Monday morning, the pediatric radiologist and surgeons decided it was necessary to operate on Naomi that afternoon. Ben was juggling children and us at the hospital. I was trying to juggle my classes and a decision as to whether or not do have my tubal done. I decided to wait, and the spinal tap needle used during the birth was removed from my back since I didn't need it for my tubal, and I was finally able to shower for the first time. As I visited Naomi, a surgical resident brought me forms to sign to consent to surgery. He seemed in such a hurry, reading off instructions to me. When I read that one of the risks was death, reality hit and I got that creepy feeling, you know the one you get when you see police lights in your rearview mirror. He rushed off once the papers were signed, and they prepared Naomi to go to surgery. I was also trying to arrange for a breast pump because I was being discharged and needed to continue pumping my milk while Naomi couldn't eat and was hospitalized. I was paged by the surgeon who was going to do the operation. She was the chief of surgery at the hospital and said a few things about the procedure, told me not to worry because "we do this all the time". I felt unsettled, scared and so sad to see my baby being hurt and in pain. The surgeon didn't understand.
Ben and I watched them whisk Naomi by, in her little see-through crib with the IV and monitors rolling down the hall. We waited on the bench in the hallway, holding hands and looking out the window. I remember something Ben said during a break in the silence about how she'll be just fine. After the surgeons did the operation, she'd come home, heal and we'd tell her about it someday.
A few hours later the little see-through crib with Naomi and even more equipment and lots of people in scrubs burst through the double doors, whisked by and back to a bay in the newborn ICU. The surgeon came to speak to us. She stood facing us and explained the technical aspects of the surgical procedures she had done and said she felt confident that Naomi would do well. She seemed in a hurry and went on her way. They made an incision and collapsed Naomi’s lung. Then they moved her spleen, intestines and stomach down into Naomi's abdomen, and repaired her hernia by sewing her diaphragm on the left side near the esophagus, where there was a hole. After surgery, she was able to breathe on her own. We wanted to see Naomi and touch her to make sure she was ok. Once in NBICU, we scrubbed up and put on hairnets and yellow coats to cover our clothes.
She was swollen and sleeping under even more wires and things. There was a tube coming out of her chest and an IV line coming out of her forehead, another IV in her foot, oxygen and heart monitors, tubes down her nose... it was so hard to see her tiny little body like that.
We stayed with her until the doctors came to do rounds and Ben went home to tell everyone that things went well. We were hopeful that Naomi's surgery was successful, her stomach and other organs were now in her abdomen, she would now heal and soon we would bring her home.
I returned to my room and hospital routine for the evening and prepared to be discharged in the morning. I was going home without my baby, but wanted to be home with my family. I missed my children so much. Before I left I had to endure the baby class for moms, which is required before discharge, you know, the one where they teach you how to care for your baby now that you’re going home. It was so hard because all the other moms had their babies with them as I sat there with empty arms. I don't remember a thing they "taught" us, but I remember the emptiness I felt as if it were yesterday.
Once home, I walked into my room and saw the empty crib there waiting. I wanted my baby so badly, I ached. But there was no time to grieve. The next few weeks were filled with juggling life at home with our family and being at the hospital with Naomi. Ben had to go back to work so I had to arrange for childcare for Kamani, Gabriel, and Jericho in order to spend time at the hospital with Naomi. I went every chance I could, several times a day, usually. I would hold her and rock her and tell her stories. I got to change her diapers a few times and then one evening they said it would be OK to give her a bath! It felt so good to take care of her, it helped me feel like her mom. Then one day the docs said it was time to feed Naomi some of my milk! It had to be measured, just a small amount, so I had to give it to her through a bottle. I was excited and terrified at the same time. But she drank it all up, so a few hours later they let me give her another bottle, this time with a bit more in it and she drank it all up too. We did this a few more times that day. The next day I was allowed to nurse her. We found a way to position her to make allowances for all the wires and things, then I held her in my arms and we nursed. I rocked and sang and we both felt so good inside.
Now that I was nursing the schedule got much more intense since I now had to be at the hospital every two hours. There was a lot of pressure because if I missed any feedings, it would be replaced by a bottle-feeding and they warned me that might mean that Naomi might come to prefer the bottle,
Then one day it happened. We got word that Naomi would be discharged soon. We were going home! At the appointed time, Ben brought the children so we could all bring Naomi home together. Everyone scrubbed up and put on yellow hats and hospital coats and after a mini lesson in CPR and incision care (the NBICU version of the baby care class) we gathered up Naomi, feeling so good that she was healing and would now begin her life with us.
.Coming home meant all those adjustments families typically face when bringing home a newborn. New routines, sibling issues and a lack of sleep are all part of what we expect with a new baby. We had all really been through so much. Our older children had missed me, were worried and didn't know what to expect. Ben and I were reeling from the reality of Naomi's condition, so tired and trying so hard to be all things to everybody. Naomi had been through so much. She wanted to be held all the time so I carried her in a sling so she cried less. We also wrapped her up in a receiving blanket and laced her up in a Navajo cradleboard when she slept because we could prop her up. It supported her stomach snugly and was great for rocking her to sleep. But she spit up a lot. And it seemed that she suddenly started spitting up every time I fed her. I would nurse her on my lap and up would come the milk, all over us, like a garden hose, just pouring out. Reality was setting in that something wasn’t right and we had to go back to the doctor.
When I heard the surgeons voice on the answering machine, I got that creepy feeling again. I just knew something was really wrong or she would have had a nurse call. The results of the barium swallow showed that Naomi's stomach was rising up into her chest and was positioned so that she was refluxing all her feedings. I needed to bring Naomi back to the hospital that evening because she needed to have another surgery done the next morning. The plan was to make an incision along the same one used before, check the repair on her diaphragm and this time they would also do a nissen Fundoplication (use the stomach itself and sort of wrap it in a knot at the top to keep the food down) and then insert a g-tube (a feeding tube) in her stomach (so that the scar tissue would help anchor the stomach into place, and also in case she needed it for feeding purposes).
Even though I had sensed that Naomi wasn't healing properly and deep down, maybe I even suspected another surgery was necessary, I heard myself gasp with surprise at this news. Naomi was five weeks old. We called Ben's parents and they drove in from the pueblo and we talked. It was decided that they would spend the night so Ben could take Naomi and I to the hospital. I would stay with Naomi until she was ready to come home after the surgery. Grandpa and Grandma would stay with the children so Ben could go to work.
We were admitted into the pediatric sub-acute care unit (PSAC). I was familiar with the routine from my previous stays with my other children. Lab work, IV's, procedures which cause pain to my children (such as needle sticks) are probably the hardest time for me. Every instinct I have, every cell and neuron in my brain wants me to protect my children and keep them safe. I felt so helpless holding Naomi down as she screamed and cried while the nurses worked at getting the IV line in. It took three different people five tries to get the needle in correctly. Her veins were so tiny. I put my finger into her little hand, stroked her hair and talked to her. She cried so hard that her hair was soaked from sweating and she kept hiccupping long after she fell asleep.
I made myself a little bed of blankets and since Naomi couldn't eat before surgery (and wouldn't be able to after surgery for quite awhile) I made my way to the "pump room" to begin the routine of pumping my milk to maintain the supply until Naomi was able to nurse again. This time the pump was located in a closet filled with diapers and other supplies. There was a narrow path from the door to a chair and table where the pump was. Some of the nurses have since made the room homey and comfortable, but then it was uncomfortable and not very private since people sometimes unlocked the door to come and get supplies out. I didn’t have a place to be alone with my thoughts.
Our room was filled with the night sounds of a pediatric hospital ward. The curtains around Naomi's crib were our walls. The machines were making their sounds, beep, beep, beep; hissssssssss; dong, dong, dong. Babies were crying and whimpering down the hall. While it was still dark, someone pushed the curtain aside and said it was time to take Naomi down to the O.R. I hold her in my arms, pulling the IV pole along as we are escorted through the hallways. We get into an elevator I'd never been in before. It goes down, the elevator door opens and there we are standing right in front of the operating room. I hold Naomi close and kiss her. We step out of the elevator and are greeted by a young Asian man in green scrubs, a stethoscope and green shoe covers. His mask is down around his neck. He smiles and introduces himself as the anesthesiologist. Someone interrupts and has me sign some papers. He tells me it's time to take Naomi now and says he'll take good care of her. I kiss her one more time and place her in his arms. He pulls up his mask and goes through the big double doors with Naomi. As the doors close behind them my mind is screaming nooooooo!, but I stand there and say nothing.
That morning has repeated itself over and over again in my dreams ever since. I was escorted to a waiting room crowded with people seated in chairs connected in rows. It reminded me of an airport. The tv was on and some children were playing on the floor. Ben and I sat together and waited. It was too noisy and busy to talk so we just held hands. After three or four hours the surgeon came to the door and called us out. We stood in the hallway as she again explained the technical aspects of the surgery. After she made the incision, they found a lot of scar tissue from the previous surgery and had to carefully cut it away. Naomi's liver and spleen had stuck together since the last operation and needed to be gently separated. The repair to the diaphragm appeared to be holding so they did the nissen to wrap her stomach and inserted the g-tube. This time she felt confident that Naomi's hernia was repaired.
Naomi was sleeping when we first saw her. She was so swollen, her face and everything. I didn't realize she would look so bad and I heard myself gasp as my heart skipped a beat. She had all the same tubes and wires as the first surgery and this time she had a tube coming out of her stomach. Ben put his arm around me as we each held one of her little hands.
For the next couple of weeks Ben juggled the children, work and visiting us. I stayed with Naomi in the hospital, caring for her as she recuperated. Ben and I would switch places for about an hour each evening so he could spend time with Naomi and I could go home to spend time with the children. We were taught how to care for her g-tube (in addition to her incision). The clear plastic tube came out of her stomach and hung down about four inches. It had gauze and tape wrapped around it where it came out of her skin and the other end had a plug stuck in it. Since Naomi could no longer burp( a result of the surgery) we had to unplug the tube to let the air out of her stomach. We also had to flush it with a syringe of water several times a day. I also needed to continue pumping my milk every couple of hours to maintain the supply. I found a way to lay her on her cradleboard and lace her up, making room for all the wires and tubes coming out of her body. Some of the hospital staff expressed concern about it, but Naomi really liked it, the cradleboard brought her much comfort, and soon they were helping me lace her up when she cried. Our family pediatrician who works in the Indian hospital next door made time to stop in and see us often. It was very comforting to see a familiar face and he was always willing to answer questions about things we didn't understand.
Time passed and Naomi began healing and soon it was time for her to begin nursing again. Just like before, we started with small measured amounts in a bottle, and after a few days she was nursing again. Soon, she was home again. Naomi was eight weeks old now. We were hopeful that she would heal and we again began to adjust to the routines and issues we now faced as a family.
It was now autumn and Naomi's checkups had gone well. Her incision had healed nicely, but her g-tube needed to be cauterized a couple of times because tissue was growing up around it. Since she wasn't using it for feeding, the surgeon had it removed six weeks after the surgery. I remember leaving clinic that day feeling as though a ton of bricks had been lifted off my shoulders. Naomi had been freed of all her tubes and plastic things. She was all baby. Her next appointment wasn't for six months! My insides actually fluttered.
A week later those feelings crashed to the ground when Naomi vomited again. The next morning, on Halloween, we were back in the hospital for a barium swallow. It revealed that Naomi was refluxing again. It appeared that the nissen had come undone and Naomi’s stomach was moving back up into her chest again. The surgeon drew some pictures on the white paper covering the examination table and tried to explain that another surgery needed to be done. But she said it would be best to wait as long as possible because Naomi was so small and there was simply not enough tissue inside to sew the repair. We needed to wait for Naomi to grow some for the surgery to have a chance of being successful, but waiting too long could be dangerous. When I asked the surgeon for her estimate on what window of time was likely she compared it to her stocks, when to buy, when to sell. She still just didn't understand.
It was a long, anxious winter. Naomi cried a lot and she spit up a lot. But I kept nursing her and she was growing. But I worried because she couldn't roll over, she couldn't sit up for very long, and she wouldn't lay on her stomach at all. She also cried constantly when she was in the carseat. When I called to inquire about early intervention services, I was told that she probably wouldn't be eligible. Through another parent, I learned that the hospital had a special baby clinic that could evaluate Naomi and give us ideas on how to help her. It took a couple of months and a few phone calls to get an appointment, but the feedback they gave us was helpful. They listened to our concerns and helped us seek out support and services we asked for. They put us in contact with a massage therapist who visited us a couple of times at home and once in the hospital to teach us massage techniques to help Naomi cope with the pain and discomfort.
As Naomi seemed to be getting sicker, I was becoming more and more anxious. I called a pediatrician I remembered who had been very supportive when Gabriel had been hospitalized often. I told him about Naomi's impending surgery and that I felt I had the support of our pediatrician from the Indian hospital, but I needed a friend at the "big" hospital. He invited me over for lunch in the cafeteria. He bought my three-year-old son a hot dog and as we talked, I shared my fears and he offered support and information. The partnership we formed has strengthened our family and has enabled us to make difficult decisions and work through things together.
It was during this time that we began contacting relatives hoping to locate a medicine man or native healer who could possibly help Naomi. Ben's pueblo relatives from his mom's family really tried to help, but there was no one alive in the village who did that kind of thing anymore. So Ben's dad began asking his relatives out on the Navajo reservation. All we could do was wait and hope.
Spring arrived and an X-ray revealed that Naomi's stomach had moved so far up into her chest, it was considered an emergency situation. It was time to operate again. Naomi was nearly eight months old. We arrived at the hospital the morning of the surgery, and again it took several sticks to get the IV in. As I handed Naomi over to the stranger in green scrubs, I realized that I may never get to hold her again. The surgery took six hours, not three. I began pacing the halls after five hours with no word on how she was doing. Then I was approached by a resident I did not know, who told me that the surgeon would like to speak with me in a room near the OR. I felt sick all over and for a few awful moments, I thought Naomi hadn't survived the operation. I resisted going into the little room and waited until I saw the surgeon come down the hall. She didn't understand why I was worried and said the surgery was difficult and wanted to speak with me 'in private. Naomi was doing ok, but wasn't out of danger yet. There was an awful lot of scar tissue from the previous two surgeries. The surgeon said that she's had to re-repair surgeries like this before, but had never seen one that had "blown apart" so badly. The surgical nurse said that it got "kind of hairy for a while". They redid the nissen, this time using half the stomach in a method called a Thal modification and this time they used gore-tex to sew a patch on Naomi's diaphragm and they put another g-tube in her stomach, this time they used a "button" made of plastic which lays flush against the skin instead of the tube. Since the surgery was more difficult than expected, Naomi was admitted into pediatric ICU instead of SAC like the last time.
Again I was surprised to see how swollen and how awful my baby looked. This time there were more monitors, tubes, wires and plastic things than ever. Sometimes Naomi opened her eyes and whimpered, trying to cry. I rubbed her thigh (the only place I could reach) and talked to her and she would fall back to sleep. She seemed to be in such pain. We were transferred to the SAC unit a couple of days later, where Naomi recovered for a couple of weeks. We were back in our hospital routine again. Ben juggling work, the children (with help from his parents) and visits to the hospital. I stayed at the hospital, maintaining my milk supply and trading places with Ben once a day to go home for an hour or so. It was Easter time and the night before I stayed home long enough to color eggs with the children and make a pot of pueblo Easter pudding to put in the oven over night, so they'd awaken to familiar smells on Easter morning.
Naomi was recovering slowly. This surgery was much more difficult on her than the previous ones had been. Then she began to spike a fever. I worried that something was wrong with the patch and maybe her body was rejecting it. The doctors were sure it was probably something minor like an ear infection and prescribed antibiotics. The fever stopped in a couple of days and about two weeks after the surgery, it was time to try feeding Naomi small amounts of my milk. At first they tried to feed her with a pump hooked up to her g-tube, but Naomi cried and kicked the tube out, so that we had to go down to X-ray to reinsert her tube back into her stomach. After that they decided to let Naomi nurse. Sometimes she retched after I fed her but she didn't spit up anything. Soon she was nursing again and she improved enough so that we were able to go home .... but the fevers persisted. For the next eight weeks, every time the antibiotics ran out, Naomi would get a very high fever. She was admitted to the hospital and blood tests showed high white blood cell counts, indicating an infection, but they couldn't figure out where the infection was coming from. They sent us home with more antibiotics.
On the Friday evening before Memorial Day, Naomi had a fever of 104, so I called the hospital and was connected to the resident "on call". He seemed busy and suggested that I go to a drug store and get a refill on the antibiotics and call the surgeon on Tuesday. I was worried because the fevers had persisted for so long. I didn't know what to do. Ben and I talked and we decided to call our friend the pediatrician at home. He advised us to take Naomi into the hospital to have a CBC blood test done. It revealed a white blood cell count of 48,000 indicating a major infection so Naomi was admitted again. They wanted to do a CT scan and needed to have an IV in place. They stuck Naomi eight times and couldn't get a line into her veins. She cried so much, I cried with her and I wanted to take her home. They decided to do the scan without the IV. The next morning they decided to surgically implant a Broviac line, a central IV line, so we could take Naomi home and give her IV antibiotics there. The first line was placed near her groin and was difficult to care for, so Naomi was taken to the OR a second time that week and a new central line was inserted in her neck and came out of her chest. They did a test called an idiom scan to try to locate the infection but since antibiotics had been given the scan didn't show anything (they suspect that the gore-tex patch was the source of the infection, though).
Ben's parents stayed with the children again while I stayed in the hospital with Naomi and Ben went to work. Grandpa had found a medicine man on the reservation near his home who was willing to pray for Naomi and do some things for her. Since she wasn't well enough to travel, they asked us to gather together the clothes Naomi wore that day and so while Grandma stayed with the children, Grandpa made the trip back to Arizona to take the things to his brother who would take them to the medicine man. We had much hope that the prayers and good thoughts would help Naomi heal.
When the fever stopped we brought Naomi home and we were taught how to administer IV medications. We had to flush the line, hook up the IV medicine and let it dispense for about an hour, then disconnect the medicine and put other stuff in the line to help it clot. We had to do this twice a day for at least six weeks. The supplies were delivered in a huge box once a week and a home nurse would come twice a week to change all the bandages and check the IV site.
Naomi began to be afraid of everyone outside our family, the home nurses looked just like anyone of Gabriel's therapists or friends who came to visit. They didn't wear uniforms or badges so Naomi couldn't tell who was who anymore. Before, medical procedures had their own place, in the hospital, but now even home became unsure and unsafe to her. We carried her all the time so she wouldn't cry, but she seemed unhappy, so I called & asked about early intervention services and this time Naomi was eligible. She was now almost eleven months old and wasn't crawling, or able to do many things like get from sitting to other positions and she didn't make many sounds. Her eating was also concerning to us. She ate such a little bit & only foods that were soft and easy to swallow; figured it was because her stomach hurt so much that she didn't try to eat or move around much.
We have developed a nice partnership with our interventionist. She is a good listener and works on helping our family reach goals we have set for ourselves. She has arranged for Naomi to receive services at a local childcare center so that Naomi has the opportunity to interact with her same aged peers. I am struggling with how to meet the needs of all my children and still have room for a typical family life. There are times when as many as eleven therapists and other service providers are seeing our children weekly. My dreams of ballet lessons, soccer teams and little league have been replaced by the reality of PT, OT , visceral manipulation and speech therapy.
In July, just before Naomi's first birthday, her central line was removed. The fevers had stopped. We began the task of healing the emotional scars felt by everyone in our family. We know that Naomi still faces the possibility of more surgeries. The nissen may come undone again or the gore-tex patch may stretch and eventually tear as she grows. Naomi has been admitted to the hospital on a few occasions and had ear surgery to put tubes in to help with her recurrent ear infections. One particularly difficult episode occurred when the scar tissue caused a bowel obstruction, which made Naomi retch and vomit (her own poop) for about sixteen hours until it resolved itself. We are well aware that things like this can happen without warning, but we try to focus on the fact that we are all healing together. The effects of Naomi's medical condition touched all of our lives. We each try to find our place, discover our roles and learn ways to cope with and understand our feelings. That process continues today.
Written by Naomi's mom, Lisa Nagurski (New Mexico)
2000