Our lives changed forever on July 29th, 2011, and then they changed forever again on July 30th, 2011. On the 29th, we became parents to the most beautiful 7lb, 7oz little boy, Oliver. Justin and I went through all of the wonderful feelings and emotions (elation, exhaustion, overwhelming love, etc.) that I imagine most first-time parents do. Little did we know, we were just beginning our emotional roller coaster.
Oliver had a minor bleed on his head when he was born that continued to ooze even with the application of pressure. After several hours of oozing, our soon-to-be favorite pediatrician stitched him up, the bleeding stopped, and we breathed a premature sigh of relief. A few hours later, he started oozing blood from the heel prick that they do on all infants at birth and then soon after from the other foot where they had taken a second sample of blood to run some tests as a result of his initial bleeding. By Saturday morning, Oliver’s second day on earth, he was being monitored in the Neonatal Intensive Care Unit (NICU) and this is when the roller coaster really took off. Twelve hours after making his way to the NICU at the hospital where I gave birth, he had lost a lot more blood from his feet and then even more from his belly button (umbilicus), had received two blood transfusions, been transferred to the NICU at Children’s Hospital, and was getting a CAT Scan which would soon reveal he had a brain bleed.
Also during these 12 hours, Oliver was diagnosed with Severe Hemophilia A, a complete and utter shock to us, as we had no known family history of the disease. We also experienced the magic of clotting factor during this period of time, because once the diagnosis was confirmed, the doctors gave Oliver his first of many doses of recombinant Factor VIII. As we like to say in our house, “It was like all of his holes were plugged at once.” The bleeding that had been going on for hours came to a halt.
Oliver spent a week in the NICU before finally making his way home and I can’t even begin to describe the range of emotions that we experienced during that first week. We went through everything from shock and disbelief, to fear and questioning of our preparedness, to worries about what Oliver’s life would be like, to a strong desire to provide and protect, all the while still overwhelmed by that new parent baby lust for our beautiful little boy.
The chaos and emotional swings that we experienced during that first 48 hours and beyond were very much a preview for what these first 2 ½ years of Oliver’s life have been for us (though on a much smaller scale). We have faced a number of surprises and challenges since Oliver was born and we have started to recognize a pattern to our own process of coping. Since that day in the hospital, Oliver has had two surgeries, we learned how to infuse his clotting factor medication through a porta-cath implanted in his chest, we spent 9 months fighting off an inhibitor (simply explained, it is the immune system’s rejection of the clotting factor medication that is so important for Oliver), we discovered a blood clot (yes, in a kid that doesn’t clot well) in Oliver’s jugular vein in his neck, had the port removed to prevent further damage to his neck, and now we have learned how to infuse his medication directly into his peripheral veins in his hand, arms, and feet and have been doing so every other day for 9 months (not an easy task with a toddler).
Each time we are faced with a new challenge we progress through a now pretty predictable set of steps. Usually we start with shock (because with Oliver nothing ever goes quite like you would expect), which is pretty immediately followed by a bunch of fear and overall freaking out. As we slowly start to deal with whatever it is (e.g., being trained by a nurse to give infusions at home) we stagger back and forth between, “Ok, we can do this” and “What if we can’t do this, what then?” In the end we always discover that we CAN manage whatever it is that we are facing. Even more important we discover, over and over again, how truly resilient children are as Oliver may be screaming one minute, because he is being held down as we infuse factor and then two minutes later he can be dancing and laughing and smiling. Of course sometimes a little extra cuddling with Mommy or Daddy is required before he is fully recovered, something that neither of us mind providing. With each new challenge it doesn’t take long (though it may seem like forever while we are going through it) before it becomes “our normal.” Knowing Oliver, I am certain that we have more challenges on the horizon, but I’ve also learned in the last two-and-a-half years that we can, and will, handle it.
Now, this story may make us sound tough and I think that we are. However, I can honestly say that we would not have been able to keep it together or show as much strength as we have without a ton of people in our lives that love and support us or without wonderful access to so much education. We have been blessed with a great network of family and friends and doctors and nurses who provide all types of emotional and practical support, and thanks to someone special in that network we were also able to get immediately connected to the Nebraska Chapter of the National Hemophilia Foundation.
Lucky for us, I just happened to be friends with the Executive Director of the Foundation (a connection I never knew would be so important). Kristi got us hooked up with educational materials right away and we attended our first chapter event, the Hemophilia Walk, only eight weeks after Oliver was born. During the first year, we gained so much from being connected to the organization. It was so important for us to talk with other parents that had experienced similar emotions and fears and it was immensely helpful to be able to attend educational conferences in Omaha, San Diego, and Orlando.
I learned something new at each event and I appreciate the safety net that comes along with it. I know that with the next surprise and the freak-out that will follow shortly after, there will be somebody involved with the organization that I can call, somebody who “gets it.” I have since become a member of the Board of the Nebraska Chapter of the National Hemophilia Foundation and my biggest hope is that I can help ensure that every family that could benefit from our support is able to find out about us and to get access to this incredible network as soon as possible.