The Many Looks of Clara - Spring 2009

An Easter outfit and a silly face.

Wearing Mommy's sun visor.

Checking out the manatees at the Columbus Zoo

Happy to be outside in the swing!

Taking a break from a conversation with herself in the play gym mirror (her favorite pastime).

Happy Easter!

Do you think these two like each other?

Owen started this adventure using the copper dipping-handle and a single color per egg.

By the end he decided that using his hands was more efficient and that each egg should have a turn in each color.

It took several washes to get all of the dye off those hands.

Some of the single color finished product.

Is this the same kid??

After Owen has a haircut, we are always amazed how different (and older) he looks. In the interest of full disclosure, Owen made the decision to have all of his curls cut off. When Ellen asked if he was sure, he told her not to be sad because his curls would grow back.

February 2009 - With Curls

March 2009 - Without Curls

Owen the Mighty Golfer

After being trapped inside during the long Ohio winter, Owen took full advantage of the perfect weather in Phoenix during our recent vacation at Nana and Papa's house. Playing golf in the back yard was one of his favorite activities. Looks like I have a golfing buddy.

He has pretty good form for a three year old. The fact that he is left-handed and the clubs were right-handed did not bother him at all.

No Dad!! I want to do it by my own self!

Ear Tubes

Clara's six month hearing screening indicated that she was experiencing moderate hearing impairment. She could hear sounds at higher volumes but not at lower volumes. The audiologist suspected that she might have fluid or wax accumulated in her ear limiting the vibration of the ear drum.

A visit to the ENT a week later confirmed that fluid was present in both of Clara's ears. Since the hearing screening indicated moderate hearing impairment, the ENT recommended insertion of ear tubes followed by another hearing screening. Given the effects of hearing impairment on speech and language development, the ENT felt it was important to determine if the fluid was the cause of the documented impairment.

We awoke early in the morning (4 AM) on March 23, 2009 for our trip to Children's Hospital for Clara's first surgery. Even though the surgery is quick and common, it is impossible to quiet the parent portion of our brains that ensures that we are always concerned about the well being of our children.

At 5:30 AM we were greeted in the surgical waiting room with the typical clipboard of paperwork and requisite hospital wristbands. Pre-operation exams and question/answer sessions were our reward for returning the clipboard and required paperwork. At 7:30 AM we entrusted Clara to the surgical team outside of the OR doors and took our place in the family waiting area. By 7:45 AM, the ENT met us in the waiting room with news that the surgery was successful, that he removed a substantial amount of fluid from both ears, and that it appeared that the fluid was infected. He was surprised that Clara had not been showing indications that her ears were bothering her. Shortly after 8:00 AM, we were reunited with Clara in a recovery room. She was mad, mostly because her morning feeding was now more than two hour late. After a quick confirmation from the nursing staff that breast milk was okay, Clara's thirst (and anger) were remedied. We left the hospital shortly before 9:00 AM and Clara napped during the 45 minute drive. By the time we arrived home, Clara was ready to play.

While Clara's hearing appears to have improved after the surgery, it is difficult to tell for certain with a 10-month old. She will have a hearing screening and a follow up with the ENT on April 21, 2009.

Breakfast with the Butterflies

During our recent vacation to Phoenix, Nana and Pap were able to secure a reservation for a breakfast with the butterflies event at the Desert Botanical Garden. The breakfast was coincided with the opening of the spring butterfly exhibit. The kids had the opportunity to create several butterfly-themed crafts, including decoration of butterfly cookies.

This piece of chocolate never made it to the cookie.

Each of the kids was given a pair of wings.

The one-man band entertained his eager audience following breakfast.

No pictures this early in the morning, Dad!!

As the one-man band was wrapping up his show we found a place in line for the butterfly pavilion. Owen had fun matching butterfly pictures in the brochure to the butterflies he saw in the exhibit.

Our visit to the Desert Botanical Garden also coincided with the Chihuly: The Nature of Glass exhibit. The colors and shapes of the art glass work so well with the desert setting. In one nervous moment Owen reached out and grabbed one of the pieces of glass - three year old boys can be lightning fast.

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.

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

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:

• Gifts - edited by Kathryn Lynard Soper
• Road Map to Holland - written by Jennifer Graf Groneberg

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

Pure Joy