Isabel was born on Monday, November 22 on the 30th anniversary of the assassination of JFK. I don’t think I would have really known this fact had it not been for the constant television reporting and my pacing in front of the television while experiencing labor pains in the early hours of the morning of November 22nd. This was one of the memories imprinted on the reel that goes through my head when I think of Isabel’s birth. My water “broke” at home, and it was tinged with a black coloring. This meant nothing to me except that I noticed it and then went on with pacing, waking my husband, and going to the hospital. I was in labor all day as is typical- no “red flags” during labor. At one point, the doctor told me to it was time to start pushing and then another doctor told me to STOP I wasn’t ready or Isabel wasn’t ready yet. I recall that it was discouraging to be so close and then to be yanked back.
Fast-forward to the actual birth. Isabel was born full term, no problems during pregnancy. She was not doing well, though. Not breathing well. I was able to get a fast peek at her, I swear to this day (18 years later, perhaps the memory plays tricks) that she looked at me and knew who I was, before they whisked her off. I turned to Craig and whispered to him, “Go find her.” Dutifully, he went off to see where they had taken our brand new baby girl. Later he told me (and we can laugh about this now), he claims to have stumbled upon a baby in a bassinet. He thought maybe this baby was Isabel so he hung around waiting to see if this was our baby. Well, it wasn’t, as our baby was being taken to the NICU for treatment.
In looking back on these first hours, I can say that I didn’t feel any urgency or alarm. I was tired, happy to have given birth. Happy to have seen our baby. I recall that I fell asleep eating a sandwich, and then remembered I needed to call my mom. My in-laws came to visit and to see Isabel. When I was allowed to see her, she was in a breathing “tent”, not yet intubated, or hooked up and sedated, as she would later be. My father-in-law was congratulatory; my mother-in-law was visibly worried. I remember feeling confused. Should I be worried or should I be happy? I think none of us knew what to feel or think.
Later that evening, a doctor visited our room and told us that Isabel had “significant breathing problems.” The use of the word “significant” jolted me from oblivion to concern and urgency. I recall asking if Isabel would be home by Thanksgiving, (she was born on the Monday before Thanksgiving) and watching the health care team give each other knowing looks, telling me that she was not going to be coming home for Thanksgiving. In retrospect, I realize how naïve my question was, given what Isabel had to overcome to be able to come home.
From that point forward, we went from a congratulatory mode to feelings of being scared, sad, worried, hopeless, and isolated. I want to emphasis that we had a great deal of family and friend support. But no one, or so it felt, seemed to be able to get inside that “bubble” that I felt was surrounding me and my husband. That bubble of fear and uncertainty. My parents immediately came to Iowa City from the Chicago area. I recall that both families went out for dinner, and that I was feeling very disconnected from the “normalcy” that was going on around me. Although we celebrated Thanksgiving, I was not really “there” with the family. As much as our dear family and friends wanted to provide help and support, we felt alone, because it was, or seemed to be, a unique situation. One they could not understand as much as they were also sad and scared. The form of support for us came from the health care providers and a newly formed group of parents who offered peer support, called the Parent Connection. Dr. Ed Bell came to see us to let us know of this support option. We didn’t hesitate in agreeing to meet with a parent. It truly was a relief to have a Parent Connection volunteer come to our hospital room to share her story with us. The circumstances of our babies’ births were not the same but that didn’t matter. It was knowing that we were not alone. This parent showed us care and concern throughout our stay in the hospital; the relationship continued beyond our stay, once we brought Isabel home.
I would say that my husband Craig provided to me a great source of support and hope for a good outcome. It was close to Christmas, yet I was very reluctant to plan for the holidays, decorate a tree, and buy Isabel a Christmas stocking. Craig convinced me to plan as if Isabel would be coming home. We found an embroidered stocking that matched the ones that Craig and I had. He reminded me that if we were faced with the worst case possible, the death of our daughter, that putting forth our greatest hopes of her recovery and the best outcome, would not change how we would feel if faced with the worst outcome. His ability to plan for the very best outcome provided me with a center and resiliency that helped me cope with the highs and lows of Isabel’s stay in the hospital. I always felt that the staff at UI Stead Family Children’s Hospital was on our side -- taking the time to answer our questions and build relationships with us. I never felt that we were just one of the 600 + families that needed specialized care in the NICU. Even after 18 years, I can say that I have strong emotions about how lucky I feel that we had that wonderful staff caring for us and for Isabel.
Isabel was in the hospital for five weeks; she was able to come home right before Christmas, on December 23. She received follow-up assessments up to age three, in the Center for Disabilities and Development. In my office, I have hanging a poster of Isabel, blowing bubbles, that was used for marketing the children’s hospital. She is in kindergarten in this photo -- she is now 18 years old and starting to plan for college. Although we were not in any way prepared for this type of birth experience, it is our and Isabel’s experience and it is our story.