Dan, Karen and Hope
Dan and Karen’s daughter, Hope, was born weighing one pound, three ounces in July of 1992. At 25 weeks gestation Karen was transferred to University of Iowa Hospitals & Clinics from a Davenport hospital after suffering from severe pre-eclampsia. Hope remained at UI Hospitals & Clinics until July of 1993, six days shy of her first birthday.
Here’s a, “He said, she said” account:
What was it like for you as a soon-to-be parent just before Hope’s birth?
Dan: It was anxious, uncertain, and scary. I had no real idea what we were in for or what was going to happen. In the days leading up to Hope’s birth most of my focus was on my wife, Karen, who was in intensive care with severe preeclampsia. Her health and life was at risk, and the only way to cure her illness was to prematurely deliver our baby.
Karen: Toward the end of my short pregnancy, my legs, feet, and hands were so swollen but I was barely showing. I was getting horrible headaches. A friend commented that I wasn’t going to make it to term but it didn’t quite register. Then just before Hope was born, I felt even more horrible and the swelling got worse. I went to my doctor and he admitted me to our local hospital because my blood pressure was really high. He put me on magnesium sulfate. It made me feel really strange – like my legs weren’t attached to my body and I was burning up and so nauseous. By the next afternoon I was in Iowa City. I was very scared and I couldn’t sleep. Dan was scared, too. My mom and dad came from Wisconsin and stayed nearby and my mom read to me from the premature baby book.
What do you remember about the birth?
Dan: I remember it being a well-planned, well-organized event with a lot of people involved, including multiple residents, staff doctors, and nurses. I remember being at Karen’s side (by her head), while the team performed a C-section. The staff physician did some coaching with a resident through the process, but overall it seemed to be a smooth delivery.
Karen: At about 9 PM on a Sunday night, three days after I was admitted to UI Hospitals & Clinics, the chief resident in my unit told us my liver enzymes were starting to cause concern and my lungs were crackling with fluid. “It is show time,” he said. The nurses prepped me for a C-section and helped Dan prepare for being at my side. An anesthesiologist injected a nerve block into my spinal column.
It was very quiet in the delivery room, but there were several people there and I recall the resident and the staff physician argued briefly about where to position the gurney in order to have the best light. Just before they lifted Hope out of me, the staff doctor said, “This baby has taken a turn.” I was horrified and took it to mean she was coding, but really she had just flipped position and they had to adjust. Dan was calm but excited in the delivery room.
Hope gave out a tiny cry (yes, it was like a kitten) and they whisked her over to a warming table where the NICU team went to work. Neonatologist Dr. Ed Bell was in the delivery room with three or four yellow-suited residents and nurses, including Myrna Gordon. She became Hope’s guardian angel.
How did you feel the first time you saw your daughter in the NICU?
Dan: I was a little stunned by how small and fragile she actually was. It seemed clear that we were in for a long hospitalization. I was also extremely thankful we were at UI Hospitals & Clinics during the time leading up to Hope’s birth and her actual birth. I was confident we were in the best place we could be.
Karen: I’m not sure when I heard the term “micro-preemie,” but it fit. Hope was so tiny. I later described her to be about the size of a Beanie Baby. Her legs were no bigger than my little fingers. Her skin was quite dark and it looked very thin and she had some tiny bruises.
Do you recall any concerns about her future?
Dan: Yes, I remember asking our neonatologist whether Hope would have any long-term problems. Obviously, it was impossible for him to predict what the future would hold.
Karen: I remember discussing possible problems with her vision and learning. I tried not to imagine more severe problems. I also remember that as I started to get better physically, I started to worry more. I woke up in the middle of the night about two or three nights after her birth scared to death something was wrong. That happened several times over the next year, even when she was relatively stable.
What were the hardest times your family faced in the hospital?
Dan: The absolute low point – and the worst day of my life – was a day after Hope had heart surgery, when she was about two months old. She got extremely sick and we literally went minute by minute for several hours not knowing if she would live or die. Thanks to God and a great medical team she pulled through.
It was also difficult to just get through the marathon of it all. Hope was in the hospital for a full year, going home for the first time a week before her first birthday. It was difficult to get through the months and months of hospitalization while we waited for her lungs to develop.
Karen: Her bad day was the worst. She had surgery to close a heart valve and she had a very rough time afterwards. It was horrible. Dr. Bell talked to us about the possibility we could lose her. I was literally hyperventilating. But she pulled through – she was such a little fighter. There were a few other times later on when she had a few episodes where her sats dropped or she had a bad blood test and I remember being very, very shaken by these events. I told her nurse, “You have to tell me when to REALLY worry and when it is OK because I can’t tell the difference.” She assured me they would and that helped me relax a bit.
How did you cope with the extended hospitalization?
Dan: We just persevered. It was really kind of a blur. We had all kinds of support from family and friends, and that certainly helped, as did understanding co-workers. It also helped that I could come and go from the hospital at any hour of the day or night.
But it was definitely a big challenge. I had a full-time job (with very necessary healthcare benefits) and at that time, a dairy herd to oversee. We just got through it, but it was probably a little messy at times…
Karen: I spent most every day at the hospital. Sometimes I stayed at the Ronald McDonald House and sometimes in the hospital. Moving back and forth helped me to endure. One of my coping methods was to try to learn everything I could about prematurity and broncho-pulmonary dysplasia (BPD), which is what kept Hope in the hospital for nearly a year. I got to know the nurses and doctors well, too.
When Hope was about six months old, I felt I was slipping into depression. I was encouraged to see a counselor, which I did. He recommended I write about Hope’s situation because I am a writer in my “normal” life. I started a newsletter about topics that interested me for other parents. That was very helpful because it was familiar and therapeutic at the same time.
Another thing that helped me cope was having Dan as my partner -- we learned to advocate for Hope as a team. That has proven very valuable over and over in dealing with the special education system as Hope has gotten older and needed help in the school setting.
Tell us about your experiences meeting other families in the NICU?
Dan: This was a real positive. We met several other parents and families, some of whom became good friends. They became people we could talk with because they understood what we were going through. They helped us persevere. Hopefully, we helped others along the way as well.
Karen: Hope’s doctor introduced us to another family even before Hope was born and it just so happened this family lived in our town. That mom was like a lifesaver tossed to me. I saw that she was sane and happy even after going through what we were going through. We also met many other families that became dear friends. We celebrated milestones and we attended a few funerals, too. The bond we felt with these families was very deep.
After Hope came home from the hospital, I spoke on the phone every few days for quite some time with one particular mom. Her son, Jon, also had a rough time in the NICU and remained on oxygen like Hope. We could relate to oxygen tanks, feeding difficulties and the isolation of taking care of a fragile baby. Recently, we attended Jon’s high school graduation party and I think that Hope and Jon felt a special bond, too, perhaps realizing they had survived together.
What did you do to have a “normal” family?
Dan: I’m not sure what “normal” is, so I’m not sure it was ever a goal. Nonetheless, we’ve gotten involved in everything we can get involved with that works for Hope. We’ve just gravitated to appropriate activities – instead of being in regular sports she’s in Special Olympics, for example. We may be different than a lot of other families, and no doubt different than how we thought it might be, but it’s just fine, and in many ways it has been very rewarding.
Karen and I have carried on with other things in our life, including work and volunteering, so we haven’t wanted for much.
Karen: We celebrated small things like Hope’s one-month birthday, or when she improved on her ventilator settings. I did a lot of hospital “nesting” too, first at her warmer bed and later in her pediatrics room. I decorated for holidays and I carefully chose the quilts I wanted the nurses to use each day. Early on, Dan and I learned to take time as a couple and started going out for dinner about once a week during her hospitalization. I also tried to get some exercise. Our families came to visit us and that was really helpful, too.
What else stands out about the experience of having a baby in the NICU?
Dan: The commitment, compassion, competence, and professionalism of the staff are top notch. Our daughter’s life was in their hands and they took that responsibility very seriously.
Honestly, I’ve told many people over the last 19 years that UI Stead Family Children’s Hospital has to be one of the best NICUs in the world, and that we were so fortunate to be so close to it when we needed it.
Karen: To this day, those early and difficult days in the NICU stand out as probably the most emotional, gripping experience I’ve ever had in life. I am amazed at the technology and science of the NICU but I’m even more amazed at the bravery and dedication by the doctors, nurses and other health care specialists and families. It is a very special place.