Our daughter, Abigail, was born on August 28, 2004, almost four months before her late December due date. She weighed one pound at birth. Abby was delivered at UI Hospitals & Clinics and remained in the University of Iowa Stead Family Children’s Hospital NICU for 109 days. She was on a ventilator for a little over three months and continued to receive supplemental oxygen until she was around 10 months old.
Related to her prematurity, Abby faced a number of additional challenges. She was born with an infection and an extremely elevated white blood cell count. She also had a heart murmur that required surgery before she turned one month old. Later, she would need laser surgery to treat retinopathy, a hernia repair, and corrective surgery for amblyopia. All of these conditions were successfully treated at University of Iowa Stead Family Children’s Hospital.
Abby came home on December 15, 2004, weighing five pounds, six ounces. Today, she is a typically bright, joyful, curious, six year old girl. She is an avid reader, interested in nature, loves to draw, work on the computer, and play with her friends and younger brother.
For my wife and me, Abby’s premature birth came as a shocking surprise. This was our first pregnancy, but through the first five months, everything seemed to progress as normal. That all changed early in the 23rd week, on a Wednesday afternoon, when premature contractions began. It was a harrowing conversation when my wife called to tell me she thought she was losing the baby. I had a difficult time getting the words out when I then had to call my own work to tell them I couldn’t come in.
There were no immediate indications as to why premature labor had begun, so the doctors’ initial goal was to stop the contractions, which they were able to do by Friday afternoon. At that point, my wife was feeling fine, so we were hopeful that the worst was behind us. Unfortunately, on Saturday, lab results indicated that a "stealth" infection had attacked her uterus, and it was necessary to immediately change direction and speed delivery for the safety of both mother and baby. Perhaps the only good news at that point was that the interim had allowed enough time to administer steroid injections aimed at helping the baby survive the premature delivery.
Once the treatment course had been reversed, the delivery was stunningly quick. To me, the room seemed to overflow with medical staff and equipment. As the father, I felt very much on the periphery of what was happening. I cannot recall if anyone told me where I should be, or whether I just sensed I should stay out of the way. I do remember that the room seemed very dark. I was probably more concerned for my wife’s safety than anything else. In the back of my mind, I was more worried that the baby would be born with profound disabilities than that she wouldn’t survive.
Because Abby was so small, it only took a few pushes for her to be delivered. She was born at approximately 10:30 PM and immediately whisked to a table at the far corner of the room from me, where a doctor I did not yet know tended to her. After she was resuscitated and quickly examined, I was given a brief opportunity to see and photograph Abby. Because she was our first born, her tiny size was not as shocking to me as it should have been. Lacking a typical newborn’s roundness, her features seemed almost more adult, though also somewhat alien.
As I recall, Lori did not even get to see her before the baby was taken from the delivery room.
As it became clear that the baby was indeed alive and stable for the time being, I called our families to pass on the news. My wife and I had some time to realize how unprepared we were for the baby’s arrival. We had just purchased and moved into our first home the previous month, but we had not prepared the nursery, purchased a crib, etc. We had not even chosen a name. We had expected to have another three or four months to get that all done.
Having a newborn in the NICU was a strange sort of limbo. We were parents, but we weren’t the primary caretakers for our baby. Still, we spent as much time as possible with Abby and learned all we could from the medical staff about caring for a preemie. My wife was doing her residency at UI Hospitals & Clinics so most days she was in the same building and able to visit frequently. She returned to work the week after the birth, saving her maternity leave for when Abby came home. I was teaching part-time and doing computer work from home, so I, too, was fortunate enough to be able to come every day.
We were also fortunate to receive overwhelming support from our family, friends, and my wife’s colleagues. Soon after the birth, I began sending emails and pictures to immediate family and close friends, but quickly learned that they were being passed on to many others. We were truly amazed by how many times we heard that people we had never even met were monitoring Abby’s progress through a network of contacts. She was being sent good thoughts from more states, countries, and religions than we could keep track of.
One aspect of the NICU itself that we greatly appreciated was how easy it was to measure progress and improvement in Abby’s status. We were constantly aware of weight gain, milk/formula intake, oxygen levels, etc. We kept data records on the white board in her room. This made it easier to gauge how she was moving toward the goal of coming home.
Ironically, one of the more difficult adjustments during our time in the NICU was when we went from the intensive care unit to the intermediate ward. Of course we were excited to mark Abby’s improved health, but Bay 1 had felt very private, almost serene. It was always dark and generally peaceful, with little noise outside of the monitors and oxygen system. The new room was much smaller, in a higher traffic area, and a lot louder. There was less seating for visitors and no door. We also left behind all the nurses who knew Abby well and with whom we’d built relationships.
As she had with so many things, Abby ended up being released from the NICU earlier than expected. On December 4th, she pulled out her breathing tube, which had become a repeated theme for her, and the doctors decided to let her try going off of her vent. She did well, but we were still told to expect to be home sometime after Christmas. Less than a week later, however, we were moved to Bay 4 of the NICU, and on December 15, one week shy of her original due date, Abby came home.
In some ways, we probably had an easier time bringing a baby home than do most first-time parents. We had already had nearly four months to bond with Abby, get to know her moods, and start to understand her. We knew her sleep patterns and how to soothe her. Of course, we now faced the challenge of being on 24-hour duty and not having ever-present medical staff for support. Besides typical parental concerns, we had to learn how to deal with the oxygen system, having a giant tank in our dining room, and cords that could stretch throughout the house.
Our greatest fears revolved around the portable heart monitor. In the NICU, it seemed that the monitors were going off constantly. We worried that sleep would be difficult to come by. Fortunately, it turned out that the home monitor almost never went off, and when it did, it was almost always due to a disconnected lead.
Abby continued to thrive at home, just as she had at the NICU. Everyone involved in her follow-up care marveled at her ability to gain weight quickly. She did face some additional health challenges, including a hernia repair and surgery for amblyopia, and a moderate hearing loss requiring a hearing aid wasn’t discovered until she started school, but when compared with the possible outcomes of her prematurity, these have all been relatively minor complications.