Thursday, July 31, 2008

Clara's Story - Part 1 - Getting Ready

While positive pregnancy tests are inherently memorable moments for expecting parents, the positive tests for both Owen and Clara coincided with other memorable moments in our lives. Owen's positive test occurred five days after we closed the purchase of our first house. Clara's positive test occurred during our vacation in Phoenix Arizona visiting Owen and Clara's Nana and Papa.

Ellen's pregnancy with Clara was initially uneventful. At 19 weeks, we were referred to a perinatologist for a Level II ultrasound due to risks associated with Ellen's hypothyroidism and associated medications. Our OB had made the same precautionary referral during Ellen's pregnancy with Owen, so we were not unreasonably concerned.

On January 14, 2008 (my 36th birthday), we arrived at the hospital for the Level II ultrasound appointment, happily awaiting the opportunity to see the newest member of our family. Grammy and Grandpa joined us at the appointment since they had not had the opportunity to attend an ultrasound for any of their other grandchildren. After a short wait, the technician directed us to the procedure room, got Ellen situated, and started the scan. As the first few images of our daughter flashed onto the screen, I was once again overwhelmed by the profound miracle of life. We jumped into that pool of unconditional love as we contemplated images of our newest blessing.

The ultrasound technician asked if we wanted to know the gender of the baby. During the pregnancy with Owen, Ellen and I decided not to find out his gender prior to birth. No such patience was in order during the pregnancy with Clara. The technician directed our attention to an image of three short, parallel lines and indicated that it appeared that we would be having a girl. I think that Ellen did a little happy dance right there on the examination bed upon hearing that news.

Unfortunately, Clara was in a bad position during the January 14 ultrasound - as she would be for almost all subsequent ultrasounds - and the technician could not obtain all of the required views of the heart. Therefore, we were scheduled for another ultrasound four weeks later.

The follow-up ultrasound was scheduled for February 11, 2008, Owen's second birthday. Being cold and flu season, the facility was short one ultrasound technician that day, so we waited for an hour beyond our scheduled appointment time before we were finally taken back to the procedure room. Once again, Clara was in a bad position. Rather than rescheduling again, the technician asked if we could walk around while she saw another patient, with the hope that Clara might shift. Looking back, I think she saw something during that initial scan and wanted a better view to be certain. After another 45 minutes of waiting, we we taken back to the procedure room again. Clara had shifted to a better position, allowing us to see that there was fluid surrounding her heart, a pericardial effusion. Without causing alarm, the technician told us that she wanted to make sure that she had obtained sufficient images for the perinatologist, and she excused herself from the room. The perinatologist quickly joined us, confirmed the presence of fluid around her heart, then asked us to join him in his office. He quickly explained that the primary concerns with discovery of a fetal pericardial effusion include potential heart defects, potential chromosomal abnormalities, potential viral infection, potential cancer, or unknown. He immediately contacted the cardiology department at the local children's hospital and encouraged them to find time in their schedule that day for a fetal echocardiogram. His persistence was effective, and they worked us into the schedule an hour later.

Ellen and I had planned on having lunch after the ultrasound appointment at our favorite Greek restaurant, the site of our first date. Instead, we grabbed a sandwich from a chain restaurant located in the lobby of the hospital and ate in the car on the way to Children's Hospital. Due to construction at Children's Hospital, there was a long walk from the parking garage to the cardiology department. After completing requisite paperwork, we once again found ourselves in an ultrasound room. Clara, of course, was not cooperating. The technician managed to get the views that she needed and confirmed to us that the baby appeared to be a girl. The technician left to make sure she had sufficient images, then returned to escort us to a consultation room. After a short wait, a young pediatric cardiologist sat down to chat with us. He explained that the heart appeared to be structurally sound and that it was functioning properly. We then discussed possible causes of the effusion, which consisted of a refresher on the list of possibilities previously discussed with the perinatologist. He then took the time to listen to our concerns and attempted to answer our questions. We were instructed to schedule a follow-up appointment with the perinatologist, and we were scheduled for another echocardiogram at Children's one month later.

We left Children's hospital with mixed emotions. We were happy to hear that her heart was While that was structurally complete and functioning properly, but concerned because we were still in the dark about the cause of the effusion. It was 4 PM when we left Children's Hospital (our visits with medical professionals had begun at 9:45 that morning) and neither of us returned to work that day. We picked up the telephone to spread the news to our friends and family and to ask for prayers for our baby girl.

On February 25, 2008 we had another ultrasound appointment with the perinatologist. The ultrasound indicated that the fluid was still present, but had not increased. The ultrasound also indicated that there was no fluid in the lungs or abdomen, and confirmed that growth and development were on track. Following the ultrasound, the perinatologist discussed the plan of attack. We planned to continue to monitor the situation closely to make sure that the fluid was not increasing and that other problems were not developing. We were scheduled for a second fetal echocardigram at Children's Hospital on March 12, 2008. If that scan indicated that there was no decrease of fluid, the perinatologist planned to admit Ellen to the hospital for more frequent monitoring and in preparation of a possible preterm birth. Ellen and I decided that if the fluid did not decrease by 30 weeks (March 28) or if other problems developed, we would consent to an amniocentesis to give the medical professionals as much information as possible prior to the birth. Our ultimate goal was to keep the baby in utero as long as possible.

During the first week of March, Ellen's OB decided to schedule steroid injections to mature the baby's lungs in preparation for the possibility of a preterm birth. The injections were scheduled to begin the week after or March 12 echocardiogram appointment at Children's Hospital. Blood tests conducted at the request of Ellen's OB indicated that viruses were not detected and likely were not the cause of the effusion.

We arrived at Children's Hospital on March 12 still digesting the possibility that our baby girl might be joining us sooner than we ever expected. In addition to fears and concerns about the effusion, we had heaped on fears and concerns about a possible pre-term delivery. Following the paperwork exercise, we were escorted back to the same ultrasound room we had visited four long weeks earlier and were greeted by the same technician. In the dimly lit room, the technician started the scan and Clara was in a bad position (big surprise). Our baby girl did not like to be photographed! The technician found the heart and it appeared that the fluid had decreased to two small pockets. After obtaining as many of the required views as possible, the technician left the room to confer with the cardiologist to make sure the images were sufficient. Shortly thereafter, the cardiologist informed us that Clara's heart looked good and confirmed that the fluid had decreased.

On March 17, 2008 we had a follow-up appointment with the perinatologist. The ultrasound confirmed the findings of the March 12 scan. The ultrasound also confirmed that growth and development appeared to be normal. The technician noted that the two pockets of fluid around the heart measured less than 2 millimeters thick. Based on these findings, the perinatologist indicated that we should continue to follow up with the cardiologist at Children's Hospital, but that we would not need any further appointments with him. The perinatologist and Ellen's OB also decided to hold off on steroid injections since the possibility of preterm birth had significantly decreased.

We left the March 17th appointment with a significantly reduced sense of concern, feeling like the pregnancy had resumed a "normal" track. Over the course of a month we had mentally prepared ourselves for the possibility of hospital bedrest, preterm birth, and medical complications; therefore, we happily drank from this pool of good news that had been laid out before us.

On April 9, 2008, We made our monthly journey to Children's Hospital for another fetal echocardiogram. The results indicated that one small pocket of fluid continued to persist, but that the heart was in good condition and growth and development were on track. The cardiologist indicated that he would like to conduct one more echocardiogram shortly before birth just to make sure that there were no surprises going into the delivery.

On May 14, 2008, three weeks prior to the scheduled c-section, we returned to Children's Hospital and made the long walk for the final fetal echocardiogram. Everything appeared to be consistent with the April 9 echocardiogram. In response to our question about whether continued monitoring would be needed after birth, the cardiologist stated that he would write an order for her to have an echocardigram shortly after birth.

As we inched closer to the due date, we continued to drink heavily from the pool of good news, pushing to the back of our minds the possibility that there might be complications that could not be determined in utero. At the end of the day, I am glad that we did not spend those last few weeks worrying about the "what ifs". We spent the time preparing ourselves and our home for the newest member of our family, while enjoying the time we had remaining as a family of three.


Wednesday, July 9, 2008

All Aboard

Like most boys, our son Owen is into anything with wheels, including trains. He is particularly fond of the phrase "all aboard" which he shouts with gusto each time he hears or sees a train - a habit he developed after repeated viewings of The Polar Express last Christmas.

On June 6, 2008 Owen welcomed his baby sis Clara Rose aboard our family train. Shortly after her birth we were informed that there would be a detour in our planned journey - Clara was diagnosed with Down syndrome. While initially shocked and concerned about such an unexpected detour, we have come to realize that our new route is just as scenic and wonderful as our previously planned route. Along this new route are people and experiences that we might never have known prior to the detour.

So, this is how our new journey begins, full of hope and with great appreciation of our many blessings. I hope to chronicle our adventures, good and bad, here on these pages.

Big brother Owen with his baby sis Clara