Sunday, June 20, 2010


The first few days of Ginny’s life were unlike anything I had experienced in my life. The word surreal seems a bit cliché, but I cannot think of another way to describe it. When I entered the operating room for Rachel’s C-section, it was as if I was watching a movie of someone else’s life. This wasn’t actually happening to us.

When we saw Ginny having trouble in the first few minutes of her life, I could see the worry in Rachel’s eyes. We knew something was wrong, we just didn’t know what. I remember looking at her as tears began to run down her face and telling her, “It’s out of our hands now. She will be OK.” We had no idea what was going on, but I knew that everyone around us was doing everything they could to help her.

Alone in the waiting room at Shands, time seemed to stand still. There was no one else in the room, the television was off and it felt like even the clerks behind the desk had disappeared. I was alone with my thoughts. I kept thinking about how I would break the news to Rachel if Ginny didn’t make it. I couldn’t tell her on the phone. I would have to get someone to drive me back across town to NFRMC to tell her in person and leave Ginny alone at Shands.

The doctors would come out to the waiting room periodically to give me updates on Ginny’s status. At one point, they told me that Ginny would have to have a treatment called extracorporeal membrane oxygenation (ECMO). ECMO is a high-risk treatment and the doctors tried (successfully) everything they could to avoid it. As they explained to me her problems and the appropriate treatments - that night and over the following days - I felt a sense of serenity. Discussing the technical medical issues put me in a little more comfortable place, though to them I’m sure I looked anything but comfortable or serene.

Rachel and I have asked a lot of questions in the weeks since then – questions about anatomy and physiology and about the treatments for and characteristics of her conditions. The one question I have not asked is “Why?” I don’t mean “why” in the sense of “What are the medical causes of Ginny’s sickness?” I don’t mean, “Why didn’t we know about this before?” Those kinds of questions are normal and need to be asked. I mean “Why us? Why - when we took such good care during pregnancy - is Ginny so sick?”

Rachel had a textbook pregnancy. She had great prenatal care. She took good care of herself. She didn’t drink, smoke, or do anything to endanger Ginny’s health. Still, Ginny is sick. Asking why won’t make her better. Asking will only lead us to feeling sorry for ourselves. There really is no answer to “Why?” Ginny doesn’t need parents who feel sorry for themselves. She needs parents that are willing to put their feelings aside and do what needs to be done to make her better. We’re trying our best to be those parents.

Yesterday was a good day for Ginny. Today was also. She is still doing sprints – alternating between the CPAP and nasal cannula. She tried again today to breastfeed and is getting closer to a latch each time. Despite all she has been through, she is not really a fussy baby. She cries when she’s moved or when you change her diaper or when she’s hungry - almost normal baby stuff. The surgeon stopped by and was very happy with her progress. He told us he was hoping for surgery early next week and he would have a date for us some time tomorrow.

Yesterday was not, however, a good day for Ginny’s parents. Late in the afternoon, we were brought face to face with the reality that not every baby in the NICU will make it home for a full recovery. Some babies are just born too soon and too small to survive. As I tried to deal with what was happening around me, the question “Why?” came and kicked me squarely in the gut. Why do I get to take my baby home, while another dad doesn’t? Unfortunately, that question doesn’t have an answer either.

Please keep all of the NICU families in your prayers tonight.


  1. Lori and I have faced that question recently and as you have posted there is no reason or answer that will have make sense. You have the right attitude about being strong for Ginny and for each other. People can give all the advice in the world about being a parent and nothing prepares for these moments in time. I have the same questions with Emma, I see others kids who were not be able to come home and regain the functionalty (sp) that they once had. It is a terrible thing but focus on the postive, you have Ginny, you have each other and you have lots of people behind you wanting nothing but the best and keeping you and your family in your thoughts.
    Here is to more good days ahead.
    Lori and Josh

  2. Focusing on the good in each day, the progress Ginny makes and being there for each other is the best medicine for the emotional ups and downs during this period of time. You're right 'the why' really isn't important. What is important is Ginny, and her getting well and healthy.

    Long ago we went through a similar, yet not the same, period of time. We all made it through and twenty-one years later we celebrate the precious life we were given to love and care for.

    I know that you and Rachel will do exactly that. You will love, care for and cherish Ginny all the days of your lives and when she's a teenager with an attitude, you'll be forever grateful for that moment too.

  3. Jason, this post is so eloquently crafted and written! Very moving indeed! Happy to hear things continue to progress for you guys...I'm wearing my little purple Ginny Lee Haeseler bracelet every day at work!