Friday, February 6, 2009

The Shock...and After Shocks

The Clinical Care Coordinator came into the room and "welcomed" us to the High Risk Clinic at New York Presbyterian Hospital. She briefly described what was happening and that she would taking care of all the scheduling of appointments and directing our care. We were assured that we were in the best hands possible and that people from all over the country and the world came here for these types of procedures.

That should have made me feel better, but in that moment, I felt so much that I didn't know what I was feeling. Drew and I kept looking at each other and shaking our heads and crying. I remember pulling myself together a bit because I knew a little bit about human anatomy and physiology from college. As I tried to draw out the normal heart and the path of blood flow, I realized that right off the bat, I was a little ahead of this game. Not by much. As my pen began to draw what was happening to our baby's heart, my eyes welled up with tears and I couldn't see the paper. I dropped my pen once, picked it up and kept explaining what was going on through my tears. We were both filled with confusion, despair, helplessness, and sheer terror about what this meant for our baby's life. We went from overjoyed to terrified in a split second.

Over the next 48 hours, I found myself crying constantly, only pulling myself together long enough to help my 8 year old daughter with her homework or to feed my 10 month old. I had no time for grief. I knew what this meant in the short term, but I really had no idea what it meant for the rest of our lives.

I had an echocardiogram on the baby's heart within the next few days and I'll never forget it. Not because of what I was seeing on the monitor, but what I was seeing through my suddenly blurred vision. Out of no where, I was getting a glitter like effect in my central vision and I couldn't see things that were right in front of me. As we walked back to our baby's cardiologist's office, I remember it getting progressively worse. As we were sitting there listening to her explain what all of this meant, I recall not being able to see her face as she was speaking. When she asked what was wrong, I told her what was happening and she had me escorted down to the High Risk Clinic to get my blood pressure checked.

As it turns out, I was having something called Ocular Migraines. The optometrist that I saw told me that it happens sometimes when people are very stressed. You think? Anyways, this was just one more thing that helped me become more aware of myself. I had to let a lot of my personal struggles go so I could focus on what I could do immediately for this little miracle inside of me and my two other children.

Over the next several weeks, I underwent 3 additional echocardiograms to monitor the baby's heart. They clearly indicated HLHS. We met with our Genetics Counselor and went over family histories to rule out any hereditary heart problems or other anomalies in the family.

Around week 29 in my pregnancy, they began to notice that my amniotic fluid was beginning to drop. So instead of my once a month visits, I was there once a week for ultrasounds. For about 6 weeks toward the end, I was going in twice a week to get this checked. Finally, at my last ultrasound, the day before I was officially 38 weeks, my fluid reached the lowest it had ever been, a mere 4.2 on a scale of 0-25. So they wanted to induce me. It was no longer safe for my baby and they called Cardiology to let them know that we were going to move forward and it was time to call the NICU and give all of the appropriate specialists a heads up.

The only problem was that everyone and their sister was having a baby that night, so they sent me home until "a bed became available."

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