Elise's Story Part II

Sleep did not come easy on Sunday night. We were so tired and yet so worried, our minds did not stop thinking one thought after the other, though all we really wanted was to shut it off. I awoke to my alarm every 3 hours to pump and I think that was the time I felt the most alone. I sat at our kitchen counter and cried, wondering if Elise would ever benefit from the milk I was making. It was such a ridiculous substitute for what a new mother should be doing and at the same time, it made me feel like I was being productive for her.



Monday came quickly. It took the balance of the day to get things arranged for her MRI and angiogram. We spent the day with our little girl, talking with her and doing the few things that we were able to do in the NICU setting. We met with lots of doctors, including an amazingly kind and gentle neonatologist and another physician who is one of 30 researchers in the world to focus on brain injury in full term infants. Finally, we talked at length with the pediatric interventional radiologist who impressed upon us the risks of the procedure she would undergo and what the possible outcomes were.



As she left for her tests, we bid her goodbye and took a walk. Throughout the day, AJ and I had consciously and subconsciously begun to prepare ourselves for all types of outcomes. We both felt it was important to stay grounded and realistic and face the reality that we could lose our little girl. We didn't want our selfish desire to be with her to cloud our judgment if it seemed clear she wouldn't have any quality of life. At the same time, we felt like we were betraying her to even consider life without her, like we had allowed ourselves to lose hope. It was a gorgeous fall day and we talked for a long time about how in such a short time she had changed us forever. The day to day decisions that seemed so important to us before, the rushing to get more done in less time, the stress over work...it all seemed so pointless to us now. Elise had taught us about the most important things in life like love, family, faith, kindness...all these things that are so different from what our culture tells you are important. We knew that whatever happened to her, we would never be the same.



We sat in the hospital chapel and prayed and sang "Be Not Afraid" and "On Eagle's Wings." We held the cross my friends from college had sent to us and asked God once again to give us strength for what was ahead. We thanked God for each other. Shortly after we got back up to the NICU floor, we heard her name over the intercom and realized they had brought her back to the unit...she had only been gone an hour for what was supposed to take at least 2 or 3. AJ and I knew this was not a good turn of events and we again prepared ourselves for the worst news.



We sat in the conference room with AJ's parents, the pediatric interventional radiologist, the neonatologist, our nurse for the night, and the neonatology fellow. The radiologist explained that the MRI revealed there was diffuse swelling and widespread hypoxic damage to both cerebral hemispheres. Her brainstem, which controls primitive reflexes, was the only area that was spared. They postulated that seizures or the brain swelling had caused the widespread hypoxia. The damage was significantly more severe than anyone had anticipated or expected and they felt that there was no benefit to doing the angiogram with this information. It was clear there was no hope for meaningful recovery or any quality of life; basically, the decisions had been made for us.



AJ and I were devastated but amazingly calm. I think this was the information we were fearing all day and possibly longer. For AJ, it was the end of worry. We now knew the task ahead of us and although it would be the most difficult thing we had ever had to do, we knew we needed to be strong and let our little girl go home to God.