The next two months were a horrible period in our lives. Rach spent all day and all night at the hospital. After work I went straight to the hospital and we were typically there until 10:00 or 11:00. Poor Bella had so many tests ran and so many needle pokes and multiple blood transfusions. We theorize, and I say theorize because the hospital will not confirm, that she had a stroke at roughly 2 weeks of age. After that day of the stroke we saw a discernable difference in her behavior and an MRI confirmed our suspicions. Brain damage so severe that at one point a doctor referred to her brain as “Swiss cheese.” We were not sure to what affect it would have on her future. Sadness. Despair. Depression. Anger. These words described my feelings.
I mentioned multiple blood transfusions because of her bleeding disorder. Initially it was diagnosed as hypofibrinogenemia which mean she did not produce enough fibrinogen. So to dissolve the brain bleed, she was in need of additional fibrinogen and there was no way to get pure fibrinogen so she received a cryoprecipitate, which is a blood product that has many different blood plasmas pulled together. Whew, still with me. So in short, she received a blood transfusion of cryoprecipitate three times a week.
One vivid memory from the hospital was a good one. It was New Years Eve, and of course Rach and I were with Bella in her room and it was dark and quiet and at about 11:58 Bella woke up just long enough for us to kiss her and wish her a Happy New Year. There was a fireworks display nearby that we were able to see from her window. It was perfect. One of the best moments of my life.
Two months, tons of questions, no real answers. That pretty much sums up the grueling hospital experience. Rach had endured more hurt and pain that anyone should ever have to. I was an angry, emotional wreck. We found out that we were finally getting to go home. Bella was going to get to sleep in her crib, in her room, meet our dogs, and take a bath in our bathtub. Finally, what a relief. Her future, still uncertain, but for now we got to go home and experience being parents. We had a discharge meeting with the nurses where we were told that we would have to come back three times a week for blood transfusions to prevent bleeding and that Bella had such severe damage to her brain that she may never progress past the point of a two month old baby mentally. The anguish that one feels to actually hear that is torture, but there was a bright side, we did get to go home.
Rach had to quit working to take care of Bella which hurt us financially, but it had to be done. It was the only option. Also a plethora of therapists were going to come to the house to work with Bella on developmental progress and to continue to assess her. If you are keeping count we now had to go to the hospital three times a week, schedule therapists come to the house weekly, and continue our appointments with neurology and hematology. It was hectic, very hectic, and Rach had to take it on by herself, as I was so mad that I let it affect our relationship. I shut down and fell into depression. My baby girl was sick, my career was pitiful, and my marriage was suffering.
Some may wonder why I am writing such a painful memory, but I do not want to forget. I will never go back to what I was. I gained more and more weight during this period. I lost more and more confidence. I was at rock bottom, for several years, even after my son was born in June of 2008. My life, as I have written earlier, changed drastically whenever I made the choice to lose the weight and get healthy. This is part of my healing. I am going to be the husband and father that my family deserves. I am making incredible progress. Bella’s story for me is motivation. I will never shut myself off as I did then. Bella’s story is incredible and inspiring. I cannot wait to continue to share it…