The First Year Together

   Within a few days, Evan would be going home. Born 2½ months prematurely, he had stayed in the intensive care and intermediate care nurseries for weeks, and we were about to evaluate him with the Brazelton Neonatal Behavioral Assessment Scale. We, like others, find that the Brazelton NBAS is an excellent way to show parents the skills and behaviors of their baby, in addition to providing important clinical information. Although the Brazelton NBAS does not give us a score, it does yield a profile of the child's ability to manage the type of routine handling he or she will probably receive at home.

      Evan's mother, Carolyn, was sitting by his crib as we began to administer the Brazelton NBAS. She was pleased that he was heading home soon. In addition to the emotional trauma of having a baby in the intensive care nursery, making the daily trips to the hospital and the nursery had been very tiring. Now Carolyn was quiet and appeared very interested in the exam. Later we learned she was actually very nervous because "This was his first test and I wanted him to do well."

      Evan showed us that although he was quite competent in many respects, he was still at risk. Evan was competent in that he was able to bring himself to an alert state, focus on the examiner's face, and follow slow movements from side to side. He attempted to control interaction by looking away from the examiner's face for short periods, and he made efforts to console himself when he was upset by trying to slow his movements. Once he tried to get his hands together, and another time, he tried to grasp his face. These attempts were only temporarily effective, but showed us Evan's strategies for consoling himself. Knowing this, we were able to help him follow through with his own strategies by holding his hands for him. Evan also showed us that he was having difficulty making the transition from sleep to wakefulness. He needed help to do this as well. Evan tired quickly and needed a long break before he could complete the assessment. These behaviors, however, are typical of children born 2½ months prematurely. Overall we were pleased that Evan was doing so well.

      From our perspective, Evan's stay had been smooth. He needed the ventilator for only 10 days and, within 2 weeks, was breathing room air. A mild heart problem, which is typical in premature infants, responded well to medication, and he had required 2 days of phototherapy for jaundice.  Evan had some bleeding in his brain, also not unusual for a premature infant of 30 weeks gestation, but it had been very small, was resolved quickly, and was not likely to cause any developmental problems later. In addition, he had several spells in which he stopped breathing for short periods (i.e., apnea) and his heart rate slowed (i.e., bradycardia). Again, apnea and bradycardia are typical in premature infants. In sum, Evan had a very good prognosis and was fortunate to have parents with the means and motivation to offer an excellent environment for his growth and development.

      It was time for Evan to go home. Carolyn and her husband, Terry, were happy and excited, and as Carolyn said later, "It was frightening at first to leave him behind, among hospital strangers, but as the weeks passed, it became more frightening to think of him ever coming home without a room full of machines to keep him alive."
 

A Rocky Start

      Home life was not going to be as everyone anticipated. Evan developed gastroesophageal reflux (i.e., mile would not stay down), which tends to make babies uncomfortable and irritable. Evan spit up shortly after most of his feedings, and Carolyn was pumping breast milk to feed him from a bottle because he wasn't nursing well. Carolyn was troubled that Evan couldn't keep down her milk.

      Evan was not thriving, and Carolyn and Terry were exhausted, frustrated, and feeling incompetent. After several visits to the pediatrician, Evan finally declared whose side he was on. This occurred when a nurse was feeding Evan, seeming to imply that all Carolyn needed to do was relax and feed Evan like she was. Suddenly, Evan spit up all over the nurse. Carolyn thinks that she concealed her pleasure fairly well. After the situation was fully assessed and it was confirmed that Evan was losing weight, he was sent to the hospital and admitted for failure to thrive. This was a blow to Carolyn's confidence. As she said later, "To me, that translated into being a bad mother."

      Evan was only in the hospital a few days. Several tests were administered, and it was determined that reflux was the cause of the excessive vomiting and weight loss. As a result, medicine was prescribed and strategies were developed to assist Evan in accepting and retaining his feedings. Evan's parents learned the procedures, which seemed to have the desired effect, and Evan started to gain weight. Once again, Evan was ready to go home with his parents.

      Before Evan was discharged, we talked with Carolyn and Terry about our home-based program called First Years Together. The program is a collaborative project between the hospital and the local school district and is designed to provide support to families while they make the transition from the intensive care nursery to home. Although Carolyn had been told about the project when Evan went home the first time, she didn't think she needed it or wanted it then. All that she had wanted was to take her son home and be a mother to him. Because she now believed that receiving support from people who were more familiar with premature infants might be a good idea, Carolyn gave permission for someone from the project to call her at home to explain the program in more detail and possibly set up a time for a visit. Eventually, arrangements were made for Bonnie, a project staff member, to visit Evan and his parents in their home.
 

A Tired Mom

     Bonnie's first visit took place 2 weeks after Evan's second discharge. Carolyn had requested an early afternoon visit because Evan would be napping and she could more easily talk with Bonnie. The family lived in an older, quiet neighborhood with heavily planted pine tree lots. Carolyn met Bonnie at the door and invited her through to the kitchen where she offered to make some coffee as she continued cleaning bottles from the morning.

      "I'm sorry for the mess," apologized Carolyn. "I didn't get a change to straighten this morning like I'd planned."

      "Don't apologize," said Bonnie. "It just looks like a baby lives here." Carolyn laughed and they joked about how housekeeping standards dropped to a basic minimum with a baby in the house.

      Bonnie warned, "It seems to me that, as my kids grew, their messes also grew." Bonnie was pleased that this seemed to break the ice and that Carolyn appeared so open and willing to talk.

      Despite her pleasant manner, Carolyn looked exhausted. Her face and eyes were drawn and she sighed deeply between activities, as if she had little energy left. Carolyn seemed to have put herself on automatic pilot to make it through the day.

      "I need to get these ready to go when Evan wakes up so I can manage him without having to prepare bottles," she said. "If I skip part of my routine, it seems that something always goes wrong." Carolyn's movements were slow and she was careful to layout everything in preparation for the next feeding. As she described her schedule it was easy to understand why.

      After Evan's reflux had been diagnosed, the doctors prescribed medicine and a number of feeding procedures. Carolyn, trying to be a "good mother," followed them precisely. She recited the routine as if being asked for the thousandth time: "I need to give Evan medicine 30 minutes before feeding, then I can only feed him 3 ounces. After he eats, I have to keep him quiet and hold him in an upright position for 30 minutes. After that, I can put him down, but I have to pump breast milk for the next round. During the day, I have to do this every 2 hours and, at night, every 4 hours unless he wakes up, which he usually does." She paused, stared out the window, and said in a lowered voice, "This sounded really easy in the hospital."

      Carolyn seemed to have hit a low point for energy and motivation. After 3 months of unsuccessful nursing, she had decided to give up breast feeding because Evan would not accept milk directly from her. Nevertheless, she continued to pump her breast milk and feed it to him from a bottle. Every hour and minutes of the day seemed to revolve around feeding Evan, who did not want to eat and often threw up what he did eat. Carolyn seemed to be nearing her limit.

      As they talked, it seemed to Bonnie that Carolyn wanted to stop pumping breast milk, but felt guilty over the prospect of doing so. Bonnie wanted to grab Carolyn by the shoulders and tell her that she had gone above and beyond the call of duty. Evan would survive on formula but she might not survive if she continued pumping the breast milk. However, Bonnie knew that her role was to affirm and support Carolyn's decisions, not to direct them.

      "Carolyn, I know that you've decided to stop nursing, but how do you feel about Evan getting breast milk?" she asked.

      "It's difficult to set limits on how much care and devotion to give a sick child," answered Carolyn. "My heart says the care for my baby should be limitless, but your body knows better. Your body wins, but not until you exhaust yourself, your marriage, and your confidence."

      "Do you think Evan needs the breast milk?" asked Bonnie.

      "The pediatrician said we could try feeding him formula," answered Carolyn. "But all you ever read is how much better breast milk is for babies. I want to do everything I can for him." Carolyn's eyes reddened and teared up as she spoke.

      "It looks to me as though you are doing everything you can-and then some," reassured Bonnie. "You look tired. Would you like to explore the possibility of formula feeding a little further?"

      "Maybe," answered Carolyn, blotting her eyes with the towel that was slung over her shoulder. "I'm disappointed that I had to give up nursing Evan, but at this point, I just want some relief so I have energy left to be a mommy for him."

      "That sounds like a good priority to me," said Bonnie. "Maybe you could talk further with your pediatrician about formula or, if you'd prefer, I would be happy to try to find out more about it at our office or at the hospital. There are also some other moms who have participated in our program who have gone through struggles similar to what you are experiencing. If you'd like to talk to one of them, I'm certain they'd be pleased."

      They continued their conversation a while longer, discussing the various aspects of switching to formula, and Bonnie told a few stories about other babies she had worked with over the years. No decisions were reached, but some options were explored. Carolyn needed some time to think about what she wanted to do. The conversation gradually drifted toward Carolyn's experiences with Evan in the intensive care nursery, but this topic was soon interrupted by the sound of Evan stirring in the next room.
 

An Unhappy Baby

      Carolyn immediately left the room to get Evan. This was not a happy baby! He wrinkled his brow like a very old man. He rolled his head back, arched, and looked at everyone with huge, unhappy eyes. He seemed unusually stiff and uncomfortable. While waiting the 30 minutes between taking his medicine and being fed, Bonnie spent some time with Evan.

      Through the observation and questions, Carolyn and Bonnie began to try to figure out what did and did not work to increase Evan's comfort. Carolyn was a good observer and could identify a number of things that helped to comfort Evan. Offering him a pacifier, changing his position every few minutes, and using a rapid, rocking movement were all helpful in relaxing Evan, but no strategy had a lasting effect. Carolyn also pointed out that, although these strategies were somewhat effective when he was hungry, after feeding she needed different strategies because of the required upright position. For example, rocking after eating made the reflux worse.

      Carolyn seemed pleased that she could offer suggestions and appreciated the positive comments about her skills. Helping Carolyn see both her own and Evan's strengths was a positive step toward rebuilding her confidence in herself as a parent. After all, the strengths were there; it was the confidence that was lacking.
 

 Reflecting on the Past

      Evan finished his bottle, but only after many fussy breaks during which Carolyn quickly lifted him to her shoulder, rocked him, and gently patted him on the back.

      She explained, "I used to try to get him interested in the bottle again, hoping that he would drink a little more. But, now I know that it works better if I give him a break and help him calm down before I try the bottle again. If he stays mad for even a few minutes, the food usually comes right back up."

      After the feeding, Evan was much more content and even dozed as he was held upright in Carolyn's arms for 30 minutes. Sitting outside on the patio, Bonnie asked a few questions about Evan's birth, and Carolyn described the events that took place as well as her feelings during Evan's first critical days.

      "I was so scared going into the delivery room. I just knew that it was too early for the baby to survive," Carolyn reminisced. "But when they showed him to me, I looked into that little, pinched, wrinkled, blue-gray face and just had to smile. He looked like his dad." She paused for a moment to kiss Evan on the head and then continued. "He gave a single yelp as they carried him away to the intensive care nursery. You know, it's funny how important that little yelp was to me. While he was in the nursery, unable to make a sound because of the ventilator tube, I desperately tried to recall the sound of that one cry."

      They talked a while longer, but soon it was time to put Evan to bed and Carolyn needed to pump milk in preparation for the next feeding. Bonnie helped to clean up a little, and they arranged the next visit.

       During the first visits, Carolyn and Bonnie often returned to a discussion of Evan's birth. One day in early spring, Bonnie complimented Carolyn on the beautiful gardens in their yard. "I did most of that when Evan was in the hospital," explained Carolyn. "I needed something to do that I could succeed at. I felt like such a failure as a mother." She went on to say, "Although I visited him every day, did all the caregiving tasks that the nurses would let me do, and kept on top of his medical progress, it was hard to feel like a good mother. Evan's life was in the hands of the doctors and nurses and $1,000-a-day hospital machines. I was just the visitor."

      There were tears in Carolyn's eyes as she remembered the pain of those first few weeks. "When I was finally able to hold him," she continued, "my touch seemed to offer him little comfort among that tangle of tubes, wires, and needles."
 

Throughout the year

      During the early visits, Bonnie and Carolyn talked about many issues related to Evan's care but also about him as a baby born prematurely. An important concept was that of adjusted age. It was important to remind Carolyn that to determine Evan's developmental age, she needed to calculate from the date he was due instead of the date he was born. Therefore, although Evan had been in this world for over 3 months, his adjusted age for prematurity was just 2 weeks. This helped Carolyn better understand why, for the 3 months that she had been caring and loving her baby, she had not received even one smile.

      During one visit, Bonnie played with Evan while Carolyn prepared his bottle. Just as he began responding to Bonnie's smiling and talking, Carolyn came into the room. "He never does that with me," she said. She sat down beside Bonnie and they both talked and cooed to him. As he heard Carolyn's voice, he turned to look for her and gave her a sweet smile. Carolyn beamed and seemed surprised and thrilled when Bonnie pointed out that Evan turned to look for her voice when she entered the room. As Evan's health improved, Carolyn and Terry continued to reinforce and encourage his social skills. Evan became more responsive and social to his parents and others.

      Although Carolyn claims that Bonnie showed her how to play with her son, the truth is that Carolyn had the ability all along. As Evan's initial difficulties dissipated, Carolyn used her skills and Evan responded to her interactions. Over time, there were fewer discussions of Evan's problems and the things he could not do. The focus of visits shifted toward Evan's progress and future. Carolyn always had questions, ranging from issues related to development to what kinds of toys to buy and when she should start feeding him solid food.
 

Going on Vacation

      As the year continued, Evan gradually outgrew the reflux and life became easier for his family. It was time for Carolyn to redefine her role. She was no longer the mother of a sick premature baby. Over the past year, Carolyn had done very little for herself. All of her activities had been related to caring for Evan. Now she was struggling with questions that many mothers face-when she should return to work, whether Evan should attend a preschool, and so forth-but answering these questions was particularly difficult for Carolyn. After watching her child cling to life, she couldn't help wanting to cling to him and make sure his life was never that hard again.

      By this time, Bonnie was visiting less frequently but still calling on a regular basis. Bonnie was somewhat concerned about Carolyn because, although Carolyn seemed to want to spend sometime apart from Evan, she didn't seem able to take action. Bonnie sent information on classes offered by their project and other programs in the community. They also discussed child care options and what Carolyn wanted for  herself. Carolyn would plan to check out the various options they discussed, but never followed through. Although she said she wanted to find part-time child care, the applications were never filled out and returned.

      Finally, Bonnie learned of an opening in a child care program that had a mother's day-out option. Bonnie knew the caregiver, someone she trusted implicitly. She called and told Carolyn that she "needed a vacation" and that she had plans for her to review. The vacation joke was a familiar one between them since Carolyn was always saying that she was going to take a vacation when she finally got Evan into child care. They laughed at Bonnie's travel agent role and visited the program together. Shortly afterward, Carolyn enrolled Evan. That year, he attended the program 2 mornings each week and the following year, he went 5 days a week. Carolyn then returned to work on a part-time basis.

      Carolyn's concern about Evan's health and development continued for a long time after they left our program, but this was not unexpected. We did not intend to allay all of her concerns. Our goal was to provide support that would ease the added stresses that accompany caring for a premature infant. Through information sharing and emotional support, we strived to enable this family to have the lifestyle they wanted to the greatest extent possible. This we felt we had achieved.

This case story originally appeared in McWilliam, P.J., & Bailey, D., (Eds.). Working Together with Children & Families, Case Studies in Early Intervention. (1993). Baltimore: Paul H. Brookes Publishing Co.

The First Year Together
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