Saturday, November 1, 2008

Trick or Treat

Clara the Puppy

Cowboy Owen

Spooky Jack-o-Lantern

These cute kids went out and rustled up piles of good candy for Mommy and Daddy. We live in a neighborhood that is not conducive to through traffic, so we have a lot of visitors that bring their little ones trick-or-treating. For the first hour, the parade of kids is virtually non-stop. With the new daylight savings time schedule, it is nice to be able to see the costumes before darkness falls.

Saturday, October 18, 2008

Fall Fun at Leeds Farm

Today we enjoyed some fellowship with other families from our church at Leeds Farm in Ostrander, Ohio. Even on a buckeye football Saturday, this agritainment center was a popular destination for families in Central Ohio.

Owen in the Corn Box

Clara in the Corn Box

Drain Pipe Sliding

Playing in the Straw

Wednesday, October 1, 2008

Clara's Story Part II - In the Hospital

As the June 6th scheduled C-section date inched ever closer, I think that Ellen and I were both surprised that there were no frantic last minute preparations. We had moved Owen from the nursery into his new room six months earlier, so minimal nursery preparations needed (clean sheets, clean infant clothes, diapers and wipes). Car seat bases were already in the cars, the pack n' play was set up, toys and bottles had been brought out of storage and cleaned. Owen had been delivered via C-section by the same doctor at the same hospital, so we knew where to go and what to expect when we got there.

We were ready, but still a bit nervous. We had normal concerns about our ability to parent two children younger than three and about potential complications associated with childbirth, particularly those associated with a C-section delivery. The pericardial effusion detected in February (see Part I) simply piled onto those normal concerns. We knew that the pericardial effusion had almost completely resolved and that there were no other hard markers indicative of potential complications; however, we still did not know the cause of the pericardial effusion. As such, there was a tickler in the back of our minds lending caution to our optimism.

Something unexpected happened on June 5th - Ellen started to have contractions. Although Owen was delivered full term at 40 weeks, he showed no indications that he was willing to come out on his own and Ellen never experienced anything beyond Braxton-Hicks contractions. Ellen was at home on what was her first day of maternity leave visiting with her Mom and Dad. Ellen had plans for the day to get some last minute things done (e.g., haircut, grocery shopping, etc.), but gave in to her parent's "encouragement" and let them drive her to the hospital to make sure everything was okay. Once she got to the hospital, the contractions subsided and the triage nurses indicated that there were no indications of progress. Since the C-section was scheduled for the next day and her OB was at the hospital, Ellen was given the option of waiting to see if they could fit her into the schedule or to return the next day for the scheduled appointment. The contractions had subsided, so Ellen chose to return home with the understanding that the hospital would call if they could conduct the C-section earlier in the day on June 6th than originally scheduled. Shortly after arriving home the contractions resumed.

After a night of sleep regularly interrupted by contractions, Ellen contemplated whether to call the hospital to see if they could get us in early or to wait for their call. In the end she decided to wait. Since she could not eat before the surgery she stayed upstairs while Owen, my parents and I had breakfast. The hospital called approximately an hour before we were going to leave for the scheduled appointment and told us that they had an earlier opening. We quickly gathered our bags and departed for the 30 minute trip to the hospital. During the pre-op process, Ellen told her OB that she had contemplated calling first thing in the morning. Her OB said that she should have as the 10 AM appointment had delivered the night before and they could have gotten Ellen in then. In the end, we only got into the operating room 30 minutes earlier than scheduled.

Waiting in the pre-op area, the possibility of complications associated with the pericardial effusion weighed heavily on our minds. While we were excited to welcome our daughter to the world, the excitement felt muted compared to the experience when Owen was born. During my wait in the hall as they administered the spinal anesthesia, I felt the need to say a silent prayer that all would go well and that Ellen and Clara would be safe.

We were in the same operating room in which Owen was delivered. Clara was in a breech position, which we knew going into the surgery. It took some effort to cut through the scar tissue from Owen's C-section, but they soon had Clara's feet and body out. Before long, I could tell they were having difficulty getting her head out. The determination of the surgical team became increasingly intense. Suddenly one of the staff sent an intercom page for assistance STAT - a word you do not want to hear when it is your loved ones on the operating table. The pace of activity in the room became frantic and the called for help arrived. Before he could get gloves on Clara's head was finally clear, but she was not screaming or breathing. They rushed her over to the warming bed and a flurry of activity ensued. Soon thereafter we heard her weak screams and I could see her start to move. The team spent some time suctioning her lungs while providing oxygen in the vicinity of her face and her body began to pink up. I was then able to go over and see her. Her face was swelling from the effort needed to extract her head and she was working hard to breath, but she was breathing on her own. As she was laying there, I thought that something about her eyes looked different; however, it is hard to focus on such a thought when you are simply thankful that your baby is breathing. They wrapped Clara up and brought her over so that Ellen could see her briefly, then they took Clara to the NICU for further evaluation.

The experience of Clara's delivery was so different than the experience with Owen. When Owen was delivered, he was shown to us immediately; he screamed, pooped, and peed as the doctor was showing him to us; he remained in the OR with us until they were done stitching Ellen up; and, stayed with us for some time in the recovery room. Ellen was able to attempt to nurse him within the first 30 minutes of his life. Clara's birth was traumatic and we were left in the OR during the surgical repair wondering if she was okay.

As they wheeled Ellen into the post-op recovery area, we were greeted by her OB and the neonatologist from the NICU. We should have been suspicious that difficult news was about to be delivered, but we were still in shock after the traumatic delivery. The neonatologist began with "I have some good news..." - Clara was no longer experiencing respiratory distress and was breathing room air on her own. This news was followed by "I also have some difficult news...we believe your daughter has Down syndrome." That may not be the exact quote, but it is close enough for the purposes of this writing. We were handed a few photocopied sheets of paper about Down syndrome, and the diagnostic features observed on Clara were explained. We were asked if we had any questions, then the neonatologist left. Ellen's OB and the recovery nurse stayed with us and offered what comfort they could in a difficult situation. Soon they left us to ourselves in what little semi-privacy a hospital curtain can afford.

After awhile, the recovery room nurse escorted me to the NICU while Ellen remained in the recovery area. Ellen did not want Clara to be alone without either of us. The NICU nurses were fantastic, answering questions and reassuring me that it was okay to interact with her while they worked with her. They noticed that she reacted to my voice and touch and seemed to be encouraged by those reactions. They allowed me to comfort Clara while they drew some blood, then allowed me some time to hold her before they inserted an IV. In the hour that I was in the NICU, the shock of the traumatic delivery and the Down syndrome diagnosis faded away. In that hour, I knew that everything was going to be okay.

Just as I got back to the post-op recovery area, they were getting ready to wheel Ellen down to the NICU. We decided that I should gather our parents to give them an update on Clara's status and the Down syndrome diagnosis. Upon Ellen's return from the NICU, I could tell that Clara had worked her magic on Ellen as well. Ellen was able to hold Clara and to nurse her. That short bonding time was as powerful and reassuring for her as it was for me.

By that point we had been at the hospital for several hours and had experienced a complete range of emotions. We discussed as much as we could with our parents, given our very limited understanding of Down syndrome. We found it easy to focus on the positive - no apparent bowel obstructions, no apparent major heart problems, good breathing and oxygen saturation. Ellen's parents left to get Owen from the baby sitter so that he could meet his long awaited baby sis. I took my parents to the NICU so that they could meet their granddaughter and Ellen could rest.

Upon their return, I took Owen and Ellen's parents to the NICU. Owen was curious about his baby sis, but not quite sure what to think about her with all of the wires attached to her. Not only did he have all four grandparents spending time with him, but now his baby sis was finally here also. It was an exciting day for a two-year old.

Before long, it was time to eat dinner so that the grandparents could take Owen home to put him to bed. Ellen was only allowed clear liquids at that point, so she went to the NICU to spend some time with Clara. Although I had not eaten since breakfast that morning, I was not very hungry. I ate because I felt worn down by the days activities. It was nice to have our parents there with us.

Ellen and I were frequent visitors to the NICU, delivering pumped colostrum. Eventually we were given the correct bottles and appropriate labels to conform with hospital and NICU policy. Although the NICU is physically located in the hospital, it is staffed and run by Children's hospital. As such it is a separate entity from the hospital in which it is located and hospital maternity nurses are not completely up to speed on NICU policies and procedures. Approximately 24 hours after her birth, the neonatologist was completing his rounds while we were visiting Clara. He examined her and indicated that there was no reason for her to remain in the NICU setting. Therefore, he initiated the paperwork to have her transferred to the hospital well baby nursery. This bit of good news boosted our spirits as Clara would be able to room in for the remainder of Ellen's stay in the hospital.

During the second and third nights of Ellen's stay in the hospital, my Mom stayed with Ellen so that I could go home at nights with Owen. We did not want Owen to feel abandoned by us because of his sister's arrival in this world.

Clara was born on a Friday afternoon. Following her diagnosis, we did not receive any additional information about Down syndrome until Sunday morning when our pediatrician visited following her exam of Clara. A social worker visited Monday to explain some of the governmental resources available to Clara. Fortunately, the hospital had WiFi access, otherwise it would have been more than three days before we could have begun educating ourselves about Down syndrome. Looking back, we would have appreciated communication from someone that had walked a mile in our shoes to reassure us that everything would be okay. Although I am a scientist by education and training, my initial research was not focused on the science of Down syndrome, rather on stories from parents of children with Down syndrome. The following books were particularly beneficial to us in those early days following Clara's diagnosis:

Stay tuned for Clara's Story Part III - The First Few Months

Friday, August 15, 2008

Pure Joy

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