Tuesday, May 20, 2008

Lainey's Cystic Fibrosis Story

Lainey Noelle Smithson was born on Tuesday, May 20, 2008. She weighed 7 lbs. 3 oz. and was 19 1/4 inches long. My c-section was routine and all went well. Lainey's APGAR scores were high and all appeared to be perfect! We had two days full of hugs, kisses, snuggling, visitors, and pictures!
On May 22nd Lainey's pediatrican became concerned because Lainey had not passed her first stool. X-rays were ordered only to find a blockage in her colon. The doctors quickly rushed her to the NICU. Once in the NICU Lainey was poked, proded, and x-rayed. The doctors determined her blockage may be due to unconnected bowels. Lacking the ability to perform pediatric surgeries, the doctors at Northeast Georgia Medical contacted Egleston.
On May 24th Lainey was taken by the Angel II ambulance to Egleston.Sid and I spoke with the doctor upon our arrival at Egleston only to learn that Lainey would have to have surgery the next morning. We were scared but confident that Lainey's surgery sounded as though it would be routine for the doctors. We were unable to stay with Lainey at Egleston due to the level of care she was receiving in the NICU and the unavaiablity of beds for parents. This was the longest night of our lives!
On Sunday, May 25th, Lainey underwent surgery at the young age of 5 days old. The surgery took approximately 3 and a half hours, but it felt like a life time. Lainey's doctor greeted us in the waiting room to report on Lainey's surgery. The doctor showed us several pictures of Lainey's colon and explained that everything was infact intact. She called Lainey's obstruction Meconium Ileus. The doctor placed a t-tube into Lainey's colon to assist in breaking up the meconium. She also informed us that Meconium Ileus is a classic sign of Cystic Fibrosis. We all fell apart at this news. Since I was adopted, I was unaware of traits I may carry. Sid was sure no one in his family was ever diagnosed with CF. In addition, we already had two perfectly healthy boys!After hours of research, we quickly found that both parents had to be carriers of the Cystic Fibosis mutation gene in order to have a child with Cystic Fibrosis. We decided not to dwell on what she MAY have until we were given proof through blood work. Our goal was to get her well.
On Friday, June 6th, one of Lainey's doctors informed me that she did have Cystic Fibrosis as found through her blood work. She has the gene mutations delta F508 and R560T. I was in shock! I had spent the night with Lainey for the first time since she was wisked away to the NICU, I was tired and totally unprepared for the news of Lainey's diagnosis. Sid and I decided to be proactive and we went to the Cystic Fibrosis Center at Egleston to get some information. While looking around for information we ran into Dr. Caplan. He spoke with us for about an hour and gave us materials to teach about Cystic Fibrosis.Over the course of 29 days in the hospital, we learned more about Cystic Fibrosis than we could have ever imagined. We also learned that Dr. Caplan was unable to find anyone in the Georgia Cystic Fibrosis data base with the same two gene mutations as Lainey. The severity of Lainey's CF was unknown, even through comparison. Her Cystic Fibrosis causes pancreatic insufficiency with malabsorption.
Lainey visits Dr. Caplan at the CF Center every month for a check up and see her peditrican for routine check ups. A home healthcare nurse visits our home once a month for Synagis shots to help prevent RSV. As of now, Lainey does not have any issues with her lungs. We pray that she continues to stay healthy and does not require breathing treatments! Lainey has turned our world upside down, but we would not have it any other way! She is our princess! We are fortunate to have my parents keep her while I teach school and Sid is in school and working in ICU at the hospital. Logan and Liam love being her big brothers! Every day is an adventure! We hope that CF soon stands for Cure Found.Thank you for following our Blog! Check back regularly for details.


Bridgette Knowlson said...

I was surfing through blogs and came upon yours. I have been looking for other families that are dealing with CF. Your story sounds so familiar. My son was born Feb '08 also with meconium ileus. He had surgery at 3 days old and stayed in the NICU for 3 months. He had many complications associated with CF other than the meconium ileus. His mutation combination is nowhere on file in the world. One mutation had very little info while the other has none. We are very fortunate to be close to a CF research clinic and have great doctors. I hope your little princess stays as healthy as possible. Lung infections are scary.

Amanda said...

My daughter and your daughter have the same mutations! Wow! I don't feel so alone anymore.