(Pictures below; new updates November 2009)
Three and a half months before God brought our beautiful, sweet daughter into our lives, we were told during a routine ultrasound she had a cleft lip; and quite possibly a cleft palate. Initially, the news was shocking and we mourned over what we thought of as the end of a "normal" pregnancy. We turned to research on the web, trying to find out what life would be like for our little girl. The first photographs we saw of children with cleft lips were shocking and were difficult to view. We were fortunate enough to hear about a local couple who had an 8-month-old boy named Corey who had recently undergone lip repair surgery at Children's Mercy Hospital. After taking the leap and making that first difficult call, we set up a meeting with the little boy and his family to get a better understanding about what our daughter would experience.
Meeting Corey and his family, hearing their stories, and seeing the amazing results of his lip repair surgery brought us hope and helped us to come a long way in accepting the situation. As the weeks progressed, we focused less on our daughter's cleft lip and focused more on that happy day on which we'd come fact to face with our little one.
Addison Rae Smith was born July 23, 2006, at a petite, but healthy five pounds and 13 ounces. We saw right away that Addison's cleft was bi-lateral and were told within minutes that her palate was also affected. After the delivery, Nicole was asked to attempt to breastfeed Addison, a task that turned out to be futile. Even with the assistance of a nipple shield and brilliant ministrations, Addison was unable to extract much, if any nutrition. Addison did, however, take to the Haberman nipple extremely well and from that day forward, she has been a power-eater.
When we were first told that Addison's lip closure surgery would be performed at four months, it seemed like a lifetime away, but those four months melted away in a hurry. Unlike most children with a cleft palate, who are first fitted with a retainer-like appliance called an obturator, Addison needed to undergo palatal expansion immediately in order to bring her premaxillary (the front-most portion of the upper gum line) forward. The mold-making process was our first heart-wrenching moment with Addison, as we watched her struggle against the dentist's manipulations. After two series of palatal expansions lasting around four weeks each, Addison's premaxillary came into line and she was fitted for an obturator for use with feedings. In addition to the palatal expansion, we also were charged with taping her lip to help stretch the skin in preparation for the coming surgery.
Addison's lip closure surgery was performed December 7, 2006, just four months after her birth. It's impossible to describe the feeling of handing off your 4-month-old child to surgeons. To say it was difficult to send her off and wait for the two hour procedure, would be an understatement. Much to our delight, Addison emerged from the recovery room about an hour after surgery. We were amazed at how well the surgery had gone. Although she was a bit swollen. Addison's new lip was nothing short of a miracle. The first week after her surgery was a bit rough. Addison had to wear arm constraints to prevent her from injuring her incision or from pulling out her nasal stints. Addison returned to the Haberman bottle within three or four days, but it was a very gradual return to normalcy.
For the first three months, Addison had to wear the nasal stints (basically an insert designed to maintain the shape of her nasal cavities) fourteen hours a day. Addison didn't mind having them in, but she became a very determined fighter when it came time to put them in before bed. In addition to the nightly nasal stint treatment, we were told to apply Scar Zone cream, and to massage Addison's lip at least four times per day. After Addison's three-month check-up, we were told we would no longer have to use the nasal stint or the Scar Zone cream. Sunscreen is still a twice-daily necessity to prevent the discoloration of the scar. Our doctor also told us Addison no longer needs to wear her obturator, but she prefers to have it in during bottle feedings.
We are currently enjoying life free of lip tapings, nasal stints and lip massagings, and are looking forward to Addison's palate repair in July after her first birthday.
Update August, 2007 (pics below)
On August 6, 2007, Addison underwent palate repair surgery. We are happy to announce that her surgery was a success, and that she received a clean bill of health from her surgeon after her one week checkup. Addison's palate repair surgery took two hours, and we were reunited with her approximately an hour after the surgery ended. Surprisingly, Addison's face wasn't too swollen, and she was very happy to be back with her Mom and Dad. The first day was pretty rough; Addison was definitely experiencing pain and discomfort. We were dismissed from the hospital the next day, around 10:00a.m., and Addison's three week recovery period began. The Doctor's orders had Addison limited to a liquid diet for the first week, and then to a soft food diet for two additional weeks. Addison was also required to keep all objects, including her hands, out of her mouth, which meant we were reintroduced to the arm constraints from her first surgery.
Fortunately for Mom and Dad, Addison is a well-tempered child, and we didn't have to keep her arm constraints on while we were with her. The only time we had them on her was when riding in the car and while she slept. For the first couple of nights, Addison would awake every few hours, but she was very easy to console, and she typically would go back to bed within five minutes. The first couple of days also presented dietary problems, as Addison didn't have much of an appetite. After the third day or so, we became less concerned that she wasn't getting enough to eat or that she was becoming dehydrated. Addison's new favorite foods became yogurt, chocolate pudding, and Cream of Wheat. Addison is now about two weeks post-op, and we're all looking forward to returning to a normal solid food diet in one more week.
We found out about Addison's cleft lip in a 2-D ultrasound, and it was confirmed later that same day in a 3-D ultrasound.
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